For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen.

I'll flap my broken wings and erase it all someday... You'll see.

Monday, 29 December 2014

Stop and Think.

I've been meaning to write this for a while but was struggling to put it in to words. Maybe its seeing things first hand rather than going on past experiences that has made the whole thing ring even more true to me. I go in to hospital a lot due to my asthma and complications, in fact this has been my worst year for my asthma and hospital admissions. I've been in and admitted 8 times now, each time for between 2-3 days to about 2-3 weeks. Its not been the most fun but it has been needed.The time of year has contributed to an increase in workload for NHS staff, particularly in the first points of access (A+E, GP surgeries, ambulances) but there has also been a lot of wards fit to bursting usually due to really demanding patients whose families won't accept. 

Yesterday. I heard a number of conversations over the MAU wards between rather narked off consultants and the families of such patients. The consultant tried to explain that there was no clinical reason for the patient to be admitted and he even commented on how cruel he thought it was that she was being abandoned here for Christmas because no one wanted to look after her during the holiday period. It takes a certain kind of callousness to "throw" someone away like that because you would sooner go out and party instead not to mention selfish and dehumanising. These people are someone's mother, daughter, son, father, brother or sister. They want and need to be cared for. Not tossed aside because they aren't convenient anymore. 

The other side of it comes from people accessing the emergency services (A+E, ambulances) for totally inappropriate reasons. I follow WMAS on Twitter and their recent campaign encouraging us to stop and think before picking up the phone and calling 999 really has opened some eyes. Some of the inappropriate calls they have had are frankly galling. A man calling for an ambulance to take him back to the town centre because he was drunk, someone calling 999 for a cat that was attacked by a dog (yes that is distressing but the ambulance service is for people only) to people calling up for sore feet from dancing and sniffles. Some people do even say they have something seriously wrong and then when the ambulance turns up, all they wanted was a bit of attention or they felt lonely. Its sad that people need to get attention this way but at the same time, that ambulance could be needed for a heart attack or a serious accident.

See, with me it takes some convincing that it's hospital time. I don't want to go in there when I know myself that chances are I can fix whatever small malady I have myself or at worst, go to the GP and get him to have a crack at it. I only really go in when all the other avenues are exhausted and I have honestly tried as much as possible. The last few days saw a cold snap which led to a real bed shortage and a spike of admissions from people who were just looking for some company at Christmas. I felt for them, it must have been so horrid knowing that there was no other place to go for a cup of tea, a chat and then to move on. People also really called in their droves when it came to partying and getting drunk/high.

Being in A+E on a weekend is a different experience to anything I have ever seen or heard. I have seen people brought in on stretchers, screaming like death-metal stars or shouting loudly about everything. I have watched from cubicles as nurses and doctors have been attacked physically and even injured just for trying to help someone. Heck I have even been in A+E when someone came in and decided he was going to try and rape me in a cubicle (which is why I get so wary of going in on my own) and I have seen just what people have had to withstand.

I have a lot of admiration for frontline staff. People who deal with the patients and are often the first to suffer when one of them decides that they can't behave or won't let them work. Around about now, I would hate to be working as a paramedic or an A+E staff member because they are so overworked, underpaid and very under-appreciated. I often think of when one pair of paramedics came to see me and they said that the most wonderful thing they had seen all day was a patient who was polite, friendly and most of all, smiled and engaged them like real people. They almost felt sad to leave me because when they went, they were going to head off to more abuse, violence and sometimes just called out for the sake of having someone to talk to.

So this New Years, please, stop and think. Before you go to A+E or call the 9's, ask yourself:

1. Is the problem something you could ask a pharmacist/GP/NHS111 person about? There are excellent NHS Out of Hours doctors and services. They can actually get you patched up quickly and sometimes even a pharmacist can help you (you'd be amazed at what they can do).

2. Could you actually die from this problem? Breathing problems, chest pain, loss of consciousness, blood loss, stroke are the kinds of things 999 are there for. Fell over from too much to drink and sprained your ankle, yes it hurts but it's nothing a bag of frozen peas won't fix.

3. Going to A+E or getting an ambulance WON'T always get you seen to fast enough and sometimes theres nothing they can do anyway, you may have to wait until Monday anyway. Can this wait? Does it need to be seen to right this second?

Of course, please stay safe over the new year period. And if you know of anyone who may benefit from a friend/relative just popping by to say "Hello" and have a drink with them. It could be the best thing you could give someone, the gift of company. I hope you all have a wonderful new year and I hope that 2015 brings peace, love and happiness.

Loves
Wendy xx

Is it over yet?!

So... I am actually thinking of expanding the blog a bit, maybe get more publicity for it and even get it more recognised in the right circles. I started this blog on the 27th October 2010 and back then, all it was about was getting through a few personal things and I never really imagined just how far I would come in a short space of time. To be honest, when I started this, we were told that I probably wouldn't make it to 25 and now I am pushing because I want to get to 30. I want this to be my legacy and I want it to serve as a reminder to anyone that you can get through things, even if they seem hard or scary. Sadness isn't a forever thing and no situation is hopeless.

The one thing that I have learned most about my condition is how variable it can be. How it can affect one person and leave them debilitated yet another person can have it and they can still go and do things, they aren't housebound or spend weeks on hospital wards. The cruel thing is, that because hardly anyone ever sees those of us whose asthma is puzzling and hard to comprehend, they don't actually KNOW what it's like. They don't see the days where all the muscles in your chest are tight enough to make you feel like you're about to pop. They don't sit there and wait for an impossible amount of prescription medications at the pharmacy and then spend the days later having to go through and make up doses, which can be so variable depending on what my chest is like on any given day. I have good days and I have days where I am wondering when I can just curl up and hibernate until its all better again. I have to be strong, even when things are horrible or scary and I have to smile, even on the days and times that really all I want is to fall apart and scream because honestly, it never actually needed to get to this point.

But it did.

I didn't ever ask for any of it, but in some ways, I am, well not really glad (I don't think I know ANYONE who would be glad of being sick), but thankful for the chance to still be here and to have learned as much as I have about myself and I think it has made me stronger and more level headed about the world around me as well as how much is taken for granted until its taken away suddenly. You do sometimes have to lose everything to find something worth having.

Eventually, everyone will lose everything but in working to get it back, they will gain so much more in themselves. I lost a lot of things due to others being in control of my life and having things with-held when they shouldn't have been. By letting them have that control, I gave my life to them only to end up with it being completely changed, but the one thing that taught me was to fight for myself, even if people didn't "like" what I said or did. I'm glad I fought and I am going to keep fighting because, well, I'm not ready to lie down and let this beat me.

The next year or so may be uncertain, but I can feel something in the air. I can feel change, something that will be difficult at first but will soon make sense around the summer. My friendships are going to be stronger than ever and I will really need them around when things start happening because once that train starts, there's no stopping it. I'm not too sure what that means yet, but I think it is something I need to look at and work out at a later time.

So, here's to another year of growth and strength. Lets see if we can make another one happen!

Loves
Wendy xx

Wednesday, 10 December 2014

Miracles do happen?

A few nights ago, I slept really well. Which isn't normally the case for me, but I do like to sleep soundly and wake up feeling better as a result, I just don't like being disturbed at an early hour. I don't believe it's right that someone should be allowed to make that kind of noise at that time of the morning, purely because they want to be loud. At half 6 in the morning, it's nI understand different cultures have different ideas of what is acceptable and I support cultural sensitivity as much as the next person, but being woken up early in the morning by someone playing loud music is not right. No one should have to deal with that when they are trying to sleep but since the psycho is gone now (something to do with him turning up at the council armed with a knife) sleep has been possible again and its having a positive impact on my physical and mental health. In fact, my mental health is now clinically stable and we even proved once and for all that my asthma wasn't being caused by it which to me is a heck of a way forward.

I do sleep a lot because of my conditions and the effect they have on my body. Asthma is an exhausting condition and it can be a painful one at that. With the other factors as well (recurrent infections and the inconclusive bronchiectasis) it can make things a lot harder. Because I have lower lung function (at best 40% on a good day) it can sometimes make it a lot harder to do things, one trip to the loo and back for one person is probably 2-3 trips for me. I do however try and be as active as I can be, even if its just a little potter around the bedroom and a quick tidy. I have found that my bedroom tends to be kept very clean because I know that would happen if it wasn't kept clean and as dust-free as possible. It does sound pretty simple but I know how much dust and asthma don't mix. Call it OCD if you want but I spend about an hour a day pottering around my bedroom just tidying up and making sure that the dust is kept to a minimum. I do like a tidy bedroom and well, it helps to be able to find things when you're looking for them. Since picking up on the dusting it has improved my health a little but there is still a long way to go before this is in check. I'm bringing the gunge up bit by bit, but I could really use a break from it all. Maybe I could put my asthma in to a little box, nail it shut and never be affected again. Wishful thinking.

I do try to keep my independence because its important to me. Even if it is just doing little things like going to the shops in my chair or pottering around my bedroom with my oxygen in tow. I believe that being given portable equipment should mean that I'm not confined to one place. I get really bad cabin fever when I'm indoors for more than 2-3 days and I start looking for reasons to go out. I've never really been a "home bird", I don't think a woman should be married to her home (my home is less than perfect but perfection takes away from life) but its remembering that going out takes planning. Before I go out, I have to check that I have anything I could need and I tend not to like going out after my morphine. I take it and it makes me fuzzy, so I will either take it OR be in control of my wheelchair. I don't do both. I'm very careful with my chair and, aside from a few toes, I haven't had any accidents or seriously injured anyone. 

It took time to hone my chair control. I've only had my wheelchair since March but now I can confidently weave the way through town as well as get on and off buses and trains with no problems. The year or so where I used my scooter helped me too because I got the hang of it quickly. I do still have my scooter in storage but tend to use my chair to get around. It means that I can be out and enjoy my life as I see fit. OK so there are days where I am better off NOT going out and keeping myself in that warm safe place of my home. 

I had a bit of a personal blow at the doctors yesterday. Basically we are almost exhausting all avenues of oral antibiotics. Its been over a year and I've been no closer to recovery, except after 5 days of Meropenam and Tazocin (had we backed that up afterwards like they're supposed to) where we nearly got it. I'm actually exhausted from having to fight it off and getting nowhere fast. We're trying one more week of orals but if that doesn't shift it by Monday at the latest then I am going to be stuck in Redditch for Christmas on home IV drips or I could be stuck in hospital, either way, I may not be able to travel which is a crushing blow for me and Jace but I wouldn't be able to take a gamble if this was the case. It wouldn't be fair or right. But we'll cross that bridge if/when we come to it.  Who knows, maybe I'll get some kind of miracle. I just have to believe that it'll be alright.

Loves
Wendy xx

Tuesday, 2 December 2014

When Life Gives You Lemons...

This time of year is really tough on people who are vulnerable. There are all kinds of colds/flu and other viruses around, cold weather and lots of pushing, shoving and me me me. The vulnerable people, be them old or young (because remember, illnesses don't just happen to the elderly), tend to really suffer in the cold. Its particularly harsh on asthmatics, what with then cold, viruses and other things and it can be hard to get a handle on things. The problem is that once it starts, it gains momentum and becomes even harder to get back the control. I'm lucky that there are several safety nets around and I am glad for the ambulance service and the NHS on the whole. I may have gripes about 1 or 2 staff members but on the whole, I respect the work they do. I wouldn't be here otherwise.

Its scary isn't it? Admittedly my health has deteriorated over the year but the weird thing is, since getting the right meds and equipment at home, I haven't been admitted for a while. I've had some near misses and points where before I wouldn't have coped but I am proud of myself for getting the things I needed and not allowing anyone to keep me down. True, I may not make 30 but I am going to give it a bloody good go. I'm not doing it for any reason other than knowing that the more I push and survive, the more fun I'll have and then when it did happen, I won't regret anything. I don't live for petty things like revenge, to get back at someone doesn't do anything. When you waste your life trying to get back at others or blaming other people for your shortcomings, you forget to live. When you get back at whoever slighted you, what are you left with?

I'm liked by my carers and it makes me proud when they say that they like coming to me because of my sunny disposition, friendly nature and generally good outlook and attitude to life. They see people every day who haven't got half of my problems but are so grouchy and don't want to try anymore. People who would rather have everything done for them. I find that approach lazy and its not living, its existing. I do try and do things myself, even of its something small like sweeping the floor or dusting some of my knickknacks or trinkets. There is no excuse for pure laziness, even if it means doing things at my own pace and carrying inhalers or my oxygen tank. In some ways, too much care, even if its in the best intentions is actually bad for people. It makes people not want to do things for themselves and and breeds codependency and that is truly pathetic. Even if it makes me tired, I can't ever let myself be one of those needy people who can't (or let's face it, sometimes they just won't) do things myself. It's just not in my nature.

I'm not going to always like my lot in life but to be honest, it has taught me a lot. I never knew what it really meant to be ill and I look back on the small things that I used to gripe over. I guess its a case of if that was the worst of what I had at the time then I should consider myself lucky.  And as bad as things get, I always remember that it could be way worse and that helps me to just keep a grip on things. It also helps to look on the bright side, my illness has helped me get my own place, I have more than enough to live on so I'm secure as well as having the time to do as much as I can. I guess the really bad days are worth enduring because they make the good days so much more special.

This is why I don't let people feel sorry for me, because I am always going to make lemonade when life gives me lemons!

Loves
Wendy xx

Sunday, 30 November 2014

Empathy

OCD, what a pain in the backside! I have it and it manifests in this constant drive to clean. Before my mum came over with her partner, Dave, I was getting more and more depressed because my bedroom was getting worse and worse and I couldn't do it alone. Since then, I have worked hard to keep the bedroom clean, fresh and I antibac everything I interact with daily (things like medical equipment, my DS, tablet, PSP etc) to prevent the build up of germs on them. I understand my OCD and what I worry about (usually it's a fear of germs and getting sick) and sometimes it can be a sign of something bothering me. As it is, there are things that I can't do anything about so I do what I can with the things I can change. Sometimes I find it hard to communicate why I feel compelled to clean. Sometimes I get upset because I can't explain it. Sometimes I just want someone to look at me and rather than being rude and unpleasant about it, for them to try and see how I see the world.

I have never seen the world in the same way as anyone else. I'm not damaged or broken. I'm not wrong. I just have a borderline form of autism. As a child, I didn't make friends easily and I struggled for most of my life socially. I thought it was because I had been largely unable to socialise as a child due to bullying so knowing now what the real reason at least gives me a little solace.

It's been great living with one of my best friends and we don't argue or bother each other much. It's kind of panned out that I have one room, he has the other. I still have to go through the living room to get through to the wheelchair to go out or to the kitchen whenever I need anything but other than that, I don't really go in to the living room much. Admittedly, it does feel very cluttered in there but it's nothing anyone can do anything about. Natt will get a place eventually and when he moves out it will be a living room again but for now, it's like makeshift bedsits with a communal bathroom and kitchen kind of thing. The only real thing that bothers me about the whole thing is that the carers tend to complain to me about the living room despite me not going in there, it isn't anything to do with me at the moment and I have managed to compile myself in to my room and I do understand and respect that not everyone is going to keep to my standards of cleanliness and admittedly that can be a bit frustrating. Don't get me wrong, I love Natt to pieces and he is like another brother to me.

I have a very sensitive allergy to dust and too much dust and lack of airflow will result in me having serious asthma attacks. I have been triggered (not by my own home) by this so many times that I know the drill. I know when I start feeling the allergy creep up when my hands itch and my eyes water. In some cases, the dust has actually brought me out in a rash, like red spots that weep and get sore. And because my body doesn't know what it needs to attack and is busy attacking itself, infection easily sets in (last year it was so bad at one point that a patch starting as something the size of a 50p to all over my hip and halfway down my legs) which then bogs me down further. It has caused me not to have hair where rashes had once been but that is only a small part of it, including parts of my hair that would just fall out at random. Weird huh?

I'm on some new antibiotics as well as a new inhaler regime. Before I was only on Symbicort 200/6 twice a day and as needed, now I am on double strength Symbicort AND a separate Pulmicort inhaler which I can use to tweak the Budesonide component as required (increase and decrease by peak flow and response) without subjecting myself to too much of the Formoterol component which pushed my heart to beat too fast. Before we wondered whether the extra Formoterol was what I needed and it has been a real trial and error process. The problem is, my treatment is very complicated and when we have to make any adjustments, we have to experiment with things to find the right drug to change or eliminate anything that I was on that wasn't helping. All my meds have been tested over and we know what works and what doesn't, there are some margins we can push but it has to be done carefully. We can't just pull different things at random, that would be like playing a deadly game of Jenga. And that would only end in catastrophe.

I am just thankful that now I am getting much needed care and support to try and get at least some kind of normality back. Most people are asking for trinkets and gadgets for Christmas but there are a few of us who would just love the opportunity to get our lives back. A chance to not have to live with pain and a chance where we don't need to take countless drugs just to stay alive. There are people out there who are waiting for a new organ, a new life. So many people take that kind of thing for granted, they don't realise that sickness and disability happens to people of all ages, heck I have had people shove me out of the way in my wheelchair because they obviously decided that they had the right to do so.Those are the ignorant idiots who have no idea what it's like to not be able to get up and do what they want to. Those people make me angry because they don't even try to understand how that feels. So this festive season, if someone in a wheelchair asks you to reach something off a shelf or to move ever so slightly out of the way, or if your child is out of control and running about nearly getting hit by the chair they darted in front of, don't throw them a distainful look or make a nasty comment, try and think "how would I feel if I was treated like that because I'm in a wheelchair?" and show some respect and courtesy. Which is what Christmas is supposed to be about, right?

Loves
Wendy xx

Saturday, 29 November 2014

Love Keeps Us Alive.

It's getting colder as the months move forward. It doesn't feel like 2014 has passed so quickly, but then again, I have been so unwell for most of it that I barely even knew what was happening. I've spent much time this year on the wards of the local hospital and unfortunately things are still very much ingrained in to my body. I have severe asthma and I get a lot of infections. It's kind of sucky but at the end of it all, I am still here. I am still going. and I refuse to let anything beat me.

I had my care assessed fully last month. This basically meant that a social worker came out to me in my home to see where and how I was living, identifying what makes my life harder than it needs to be and deciding on the level of assistance I need. This means that they can allocate the right care for me at the right time. I am aware that I am very young and it is quite rare for someone of my age to be needing any level of help with my personal care but unfortunately that is the way things are. There isn't any other reason. I have been allocated 4 calls a day (each one lasting around 30 minutes) where I will be offered food/drink of I want them, medication is sorted and I'm helped to make myself comfortable.

My biggest problem right now is the fact that no matter what I do, I can't shift this infection I have had for months now. Both lungs seem to be down with it but the right one, as usual, has taken the worst of it. It's not particularly fun to get so out of breath from simply walking from my bed to my wheelchair or back again and it does drag me down emotionally. I would love to go back to when I was younger and these things were easier. I would love to not have to carry a tank around with me whenever I go anywhere and plan exactly how long I can be out. One of my cylinders allows me 15 or so hours of oxygen but obviously that can vary. It can sometimes feel restrictive and I feel like I'm on a leash. I know I am lucky that I am still alive (after the last 5 years, there have been times where I nearly succumbed to my illness) and I still have fight in me. I don't ever think I could really give up, not after I've fought so hard to stay alive. I don't think it's my "time" yet.

My aim now is to make the best of what I have now. It may not be what I wanted out of life at my age but it could have been so much worse. I just wish that people who screwed up, particularly the doctors who failed to listen when I kept saying something wasn't right. The nurses who didn't do their job because they couldn't be bothered and wanted to sit around nattering about the latest soap operas, I don't doubt for a moment that they are overworked and underpaid, especially on some wards where they are more like nursing homes than hospital wards. We do have an ageing population, we also have few spaces in proper homes for the elderly who end up in hospital due to the families struggling to cope. Then there's the ones who deliberately make themselves worse so that they can stay longer and get waited on hand and foot by the hospital staff. A lot of them often get their bells taken off them because they are so demanding so they end up demanding of other patients with no regard to why they're there. I don't debate that there are older people who are genuinely ill, but it's worse at this kind of year. "Granny dumping" is something that affects everyone.

Then you have the Social workers who are stretched to their limits. People only see the children's social work team and no one really knows about the adult community teams. I didn't seem keen on my social worker at first but we spent some time chatting casually. She told me how she has to explain to families that as their relatives aren't in their remit (and that is usually a very difficult remit) or that really no one gets care because they simply "want" it. I was lucky in a way to be in the remit to qualify for home care and I am really thankful for it. Since getting the carers I haven't struggled anywhere near as much. I don't go without a meal because I can't get to the kitchen. I am helped to wash, dress and I do have the best quality of life that is possible.

Saying that, since being on oxygen, I have been better. I still suffer daily attacks and can't really do too much, but I am living my life and I am making the best of it all. I want to find out what exactly is going on inside my lungs. Why is this infection not going away? I have implemented some lifestyle changes and they have helped me to be more comfortable and to me, that is the main thing. Since moving the guinea pigs and 2 of the rabbits in to the bedroom with me, I have been happier because I can play with them as much as they want (and they really do respond to "mummy time") and give them the attention they deserve. The boys particularly seem to be happier to be where they are getting plenty of love.

My boys. Nothing can ever describe how much I love them. I love all my pets and always have. But those snuggly, chunky, loveable pigs are my babies. I have always liked guinea pigs. Ever since I was a kid and we had guinea pigs in our rooms (Sniffy and Sparky). I was devastated when Sniffs died and I promised myself that when I grew up, I was going to have guinea pigs. When I got Patch back at Room 7, I remember the instant bond we had and I remember how we used to snuggle up (he used to sleep on the other side of my bed sometimes) and how he would wheek when I came back from college. I would unlock the main entrance to the house and I would hear him start to squeak, by the time I was up the 2 sets of stairs on my landing, that wheeking would get louder and louder and he would greet me. Every day I spent with that pig taught me something new. I never knew that a small animal could trust and love a human like that. It hit me hard when I found he'd passed away but every pig I have had over the years has been shown the same love and they have given me the same love in return.

My success story, Kadaj (named after the remnant leader in Final Fantasy VII: Advent Children) was such a unique creature. He came from a cruelty case where the previous "owner" (and I use that term loosely) had been trying to feed him to a snake. The poor little guy had wounds, broken ribs and major trust issues. It took me a while, but with time and patience, I won him over, both Becky and I did. He was so soft and soppy that he used to let us hold him like a baby and we managed to train him to jump back in to his own cage. When I feel low, I think of how proud of him I was and I see him, and all my past pigs, in my boys now, although I have yet to meet one exactly like him (although Tiggy seems pretty close).

My pets are one of the lights that show me to be brave. My pets, my friends, my boyfriend and my family. Whenever I feel like I can't do it anymore, whenever I feel weak or scared, I just think of them and it keeps me going. It's corny but it's true, love keeps us alive. And that is exactly where I am going to stay.

Loves
Wendy xx

Tuesday, 18 November 2014

Thinking...

Well, today is my 27th birthday. We were told that I would be lucky if I got to 25, so being still here today is either a testament to my stubborn nature, my refusal to quit (although there have been times when I got close, and I mean REALLY close, measuring up an overdose of my meds and seeing what would be quickest, but I'm putting that behind me now) and my spirited nature. I think I have dealt with things that most people would look at and think "Screw this, it's not worth it anymore" and I am still here. I think that is something to be proud of.

I'm a survivor. Not a victim. I have no reason to be ashamed of myself or the life I lead, actually, I think that I am holding up well considering the circumstances and the things I have to deal with. Luckily I have been given a package of care from the social services because on my own, I know I would never be able to manage to take care of myself. This was something I worked out some time ago. It isn't a nice thing to be dependent on others to help and I do try and do as much as my conditions allow. I don't ever want to be a burden on my friends and family, I know they wouldn't refuse to help but that's not really the point, so getting help from a care agency has been a wise choice.

The carers come in 4 times a day to make sure I am alright, get me a meal when I'm hungry as well as helping me with personal care. Because of my arthritis I struggle to get in and out of the bath (well going in is easier than getting out) as well as getting breathless when I do things. The social worker was looking to reassess my case and see whether the care was appropriate and whether or not I would benefit from a "Promoting Independence" worker instead. Unfortunately, it was very clear to even the most scrimping social worker, that removing my care would be completely detrimental to me.

The problem is, my illnesses aren't a temporary state. The damage done to my body is permanent and it means that only less then 1/2 of my lungs work anymore. This means that my tolerance to certain things is dramatically lowered and I am becoming more and more reliant upon the equipment around the house to keep me going. Its not an ideal way of life but I am at least making the best of it. I don't see it as a reason to feel imprisoned in my home or in the hospital. There was a time when I never went out unless it was to a waiting ambulance and a "night out" involved being used as a test subject and this was at it's worst (before I had a home nebuliser, which would have made taking it away again even more insane) about 2-3 times a week. Hardly what one would expect for someone my age really.

Today has been one of the best birthdays I have ever had. I breezed through the social worker appointment and the council guy coming to check the mould (weird, it's not actually a damp problem or a condensation thing, they said it was probably just the lack of air flow because under my bed was full of boxes which are now in the cupboard) and he checked the walls (turns out my love of open windows and not sealing my home is actually a good, healthy habit) and everything is fine, I can continue to enjoy the home I have here and the level of care I have been getting.

Last week, the social worker did kind of light a fire under our backsides and said that she felt I was "too young to receive care" so when she came in today, she saw what my life is like first-hand. Illness doesn't just choose older people. The problem is that as we have an ageing population who need more and more support, the majority of clients on care agencies books are elderly people and the ones who can't get help or the families are sick of (which I really find deplorable) are stuck in hospital where they are prone to getting super-bugs and other hospital acquired infections (all because the families are too selfish to care for them) and this puts extra strain on the already stretched medical services. I have heard stories of people dumping their elderly relatives at A+E with their suitcase and refusing to take them home again, meaning medically fit, elderly patients are left in an environment which is totally inappropriate. Yes, there are genuinely very poorly older people and they deserve the same care that any other patient gets. But the people who deliberately injure or make themselves sick to either be admitted (or, as I have witness, made themselves worse to stay in) to hospital is shocking.

Usually, as I have been told, it is an attention thing. When someone is in hospital, they are being taken care of around the clock, they have food and drink brought to them. They're washed, dressed and generally waited on hand and foot which puts so much pressure on the nursing staff. These nurses are already pushed to the edge by the amount of people they get, not to mention more demanding patients who want constant attention and care. Whenever I think about this, I think about a patient who I am just going to refer to as "J".

I was on a ward with this woman for nearly a week and the way she behaved was utterly foul. You see, she wanted to be hooked up to drips, oxygen and machines. The nurses would be in constantly to her because she was so demanding. Drugs rounds took over 2 hours sometimes because of her, either her "crying" for attention, holding her breath to make herself look more sick and pretending that she was dying (despite the fact that the doctors couldn't find ANYTHING wrong with her) so that her family would refuse to take her home. When nurses went to her, she would scream at them, hit them, spit her tablets out at them and would decide at 2AM after not eating all day that she wanted her insulin and she wanted it NOW. If someone else was being cared for, she would scream and make a fuss, the bedtime drugs would finally get finished at around half 11 at night when she had finished, the nurses would try and reason with her that they had other patients to care for but she would go even louder. She had been banned from all the other local hospitals for her behaviour. Her husband was more worried about losing the DLA and Motability car if she died (which honestly she was in NO danger of, even in breath holding, her sats stayed normal which pissed her off even more, when they took the oxygen off (she was only on 0.5l) she had a right hissy-fit) and the family wouldn't take her home because when they visited she would pretend to be unconscious (the doctor explained over and over that she was just attention seeking and I felt for him because he bore the brunt of the relatives, eventually the guy snapped and dragged them all in to the office to tell them that she was faking it!), peeking out from under her eyelids every so often to see if they were still there...

Unfortunately, as the nurses said, the respiratory ward gets a lot of these patients because there isn't any care in the community for them. The families refuse to look after them and toss them away because they're too much hassle so they get dumped there. People should realise that a hospital isn't a "free care home" and as we have an acute hospital, I do think that people who don't need to be there should be in more appropriate places. They should increase the social care budget, because they don't get enough to deal with the workloads they have and unfortunately some people do slip through because they don't fit the criteria in some way. I suppose I was lucky to be found to meet the criteria to be awarded funding for care but I do feel so sorry for the poor old dears who are just left in a situation that isn't right for them, including people who refuse to let their elderly relatives go in to residential care because it effects their inheritance (seriously, how disgusting is that?!) or refuse to take care of those vulnerable people because they're too much hassle. These people are still people and they shouldn't feel like being stuck in hospital is the only way of maintaining a decent quality of life. That's just my thoughts though. 

Loves
Wendy xx

Thursday, 30 October 2014

A Positive Thing

I was wondering recently, someone asked me what at typical day in the life of me consisted of and I never really got around to saying exactly what that was like. My days vary obviously from what my peak flow/ SPo2 and every other thing says so it can be a real mixture of things. I don't think there is what we would call a "typical" day with a variable condition. Today is one of my days where I have been trying to keep myself occupied as last night we had to get the emergency GP out (it was that or they would have had me taken in, which would have been needed had it not been for my o2 and nebulisers on hand) and I had a call off my GP this morning to discuss matters. The problem with my health is that it doesn't actually behave in a "typical" way. My case isn't textbook and it has more complications than most.

10:30 my day started as it does most days with my first carer. I have been getting regular carers and it is starting to form a pattern as to who I have. I get on with my carers and I like to feel like they have become a part of my life, not just "hired help". In the morning, we have to check my peak flow (either with a peak flow meter or my electronic Piko-1 device) as this can be an indicator as to how my asthma is. A "normal" measurement for me would be around 400l/min (optimum would be 440l/min respectively, but that would generally be if I wasn't asthmatic), this morning it was a little rubbish at 210l/min and my oxygen saturation (SPo2) was about 90-92% when I took my oxygen off (I have been sleeping with it recently as my chest has been absolute hell and well, I struggle like anything without it) and when I put it back on, we got up to 96-97% which would be considered "normal" for me. I stayed in my PJs today because I have been told to rest until I feel better.

The problem I have is that I find it hard to keep myself amused when I have to stay in one place. Because of my intelligence, I find I get bored really easily and when that happens, I tend to become destructive or depression kicks in. Luckily a new "Professor Layton" game arrived, I have all but one of the Layton series and I really do enjoy the test of them. Solving the mysteries and working my way through the puzzles is a great boredom breaker. When he teamed up with Phoenix Wright (another game series that I really like) and that can stop me from going mad and getting in a tizzy. I have also been playing other games on my DS and watching The Simpsons on my laptop.

I had a phone call from the doctor today too, just to talk about how things have been over the last few days. I was asked about last night and how I was feeling. We then discussed my "preventer" medication. I had been on the Symbicort 200/6 SMART dosing (2 puffs twice a day + 1 puff PRN) for years now. I used to have Seretide 500/50 but after a while found that didn't really do a lot for me and I was switched over to Symbicort back in 2010. It has helped me and I did find it more effective than Seretide so I was happy to take it. I am now on the 400/12 dose 2 puffs twice a day. It is early days yet so it is hard to say if it is working (I also have 40mg pred in my system as well which is probably sending me loopy too) but all I can do is be optimistic. I have to believe that it'll work. Every small win is a victory and any small improvement to my quality of life is worth a go. My quality of life isn't at the "Oh my god, woe is me, my life is awful" stage that so many others would be if they were in my position. I have to think pragmatically and I have to be objective about everything. Keep a positive outlook, even if there are days where I feel like I want to quit.

You have to be positive. You can't let these things get to you or they will destroy you. Even on days where I am thinking "Seriously?!" I try and make the best of it and look at things in a better way. I suppose that my condition has allowed me a certain freedom and I have the security to live comfortably and do everything I want/need to do. I have my home, I have my friends and family and I have the pets I adore as well. I can't help but feel like I am at least lucky in that way. I do wish I could go out and have a job, my social life as I used to and do other things but I can't focus on what I've lost. I have to keep looking forward and keep moving.

We are only defeated if we allow ourselves to be.

Loves
Wendy xx

Wednesday, 15 October 2014

Not Alone.

I am still here!! I just haven't had much of interest to blog about recently because really nothing new has been happening. I get these phases where it kind of plateaus and nothing remarkable happens. As frustrating as that can be sometimes. Since Wednesday, I have been having carers again. I had them before but they were stopped because the social couldn't get the funding for everyone. Now my needs have dramatically changed in less than 18 months, I am entitled to them again. I guess my health taking a nosedive has had it's advantages in a way. Like a lot of people, I was entitled to more help than I was getting at first.

So, since getting carers in, it's been nice. I have help to get up and out of nightwear, have a proper breakfast (not misc junk food or last night's left-overs) and I get ready to do whatever it is I have planned for the day. It does add structure to my days and that is ultimately good for me because it will help me settle down a bit more. It's good to see it in place before Natt moves out so that I can continue to live independently and he will still come over some days to check I'm doing OK. I think it's taking a lot of the pressure off his shoulders, it can be hard to care for someone, especially someone you're so close to. I know it has been hard on him to watch me get worse over the last 6 months and I often worry that he blames himself in some way. It wasn't his fault and I will keep telling him that.

It's been hard for me to get better recently because of my nightmare neighbour upstairs and his constant being a pain in the backside. I mean, who does DIY at 4 in the morning?! It's like he never sleeps either because he'll make noises at random throughout the day and night. Admittedly, I did find it funny when he tried to do something to the girls outside and he got a furious Riza attacking him. The squeal was worth it! I did then think "that'll teach him" and it did. He never came in to the garden again. Even though the girls are back inside (in the bedroom with me) for the winter now, as was always the intention, much to boy bunny's distraction because he can smell the females and he has this whole natural instinct to reproduce like all animals really. As lovely as kittens would be again, I don't think it would be in anyone's interests. It was wonderful though that 6 lives began right here in my flat and Riza was such a good mother and she did a great job in raising her little ones. I can't believe it's been a year and they have grown up so quick.

My animals mean as much to me as friends and family. Anyone who can say "it's ONLY an animal..." honestly has never been blessed with the utter pleasure of raising and being loved and trusted by a companion animal. There really is something magical about when you earn a pet's absolute trust and their undying love and affection. I have spent years living particularly with small animals, such as rats, guinea pigs, rabbits and all different kinds of hamsters. I don't ever regret it. In fact, my life has been richer in knowing the pets I loved (and they are never too far from my thoughts even when they're gone) and I believe that it has been my animals, as well as my friends and family, which have given me the strength and courage to keep fighting, even when things looked impossible or the pain was too much.

A lot of people say "oh but it's ONLY asthma" and tell me about how so-and-so has asthma and they are working and living a normal life so why can't I? I know when people say things like that, they're only trying to "help" and empower me somehow, but seriously, it really has the opposite effect. Telling someone about how their condition shouldn't affect them is a really horrid thing to do. Unless you can 100% know their life, what they have to deal with and how they cope, you honestly can't say what they should or shouldn't be able to do and frankly, I get tired of it because it makes me feel worse because I know I struggle. I know things can be tough and I know how and why. I'm the one who can't really do much. It's me who has to take as many as 50 pills a day and I am the one who deals with this as a constant throughout my life. I don't need reminding of it as if I don't already see it. I know my situation. I know what it feels like. I know what I can and can't do and I know my limitations and not to take foolish risks with that.

I have always believed that you can't judge someone until you walk a mile (or try to) in their shoes.

I have always been upfront about my physical and mental health because I truly believe that they are not things to be ashamed of. There are a lot of people who would try and almost blackmail me with my mental health but it never works because I don't have to be afraid of what my life can be. Just because I have these problems (bi-polar, OCD, BPD, schizophrenia, Aspergers (even if it's only borderline)), doesn't make me any less of a person. It doesn't make me "backward" or "wrong", it just means that I have to work harder to understand the world around me and I appreciate it more that way. I hate how there is this stigma with mental health problems and even though people are trying to break that, there will always be people out there to put you down and make you feel bad because of something and anything they can use and make nasty comments about shows how immature and backwards they really are.

I have a cousin, hes autistic as well and I am so proud of every milestone he makes. His mum and dad do everything they can so that he can be every bit as awesome as he is. I haven't seen him since he was 4, but I want to catch up with the whole family soon. I want Daniel to know he isn't always going to be alone and I want him to grow up without fear and with the support we never really knew that I needed until I was too old.

I have always tried to overcome the barriers that my health poses, even if it was a losing battle, what mattered most is that I at least tried to do it. There were things I never managed to finish (like my HND, I had to drop out towards the end because I was in hospital 3/4 days a week and exhausted and trying to recover the best I could at the time) but there are things that being supported has done for me. Getting the right equipment and support now has meant that I can do things I never even thought possible anymore. From going on trains to see people to actually going out and socialising with friends. Yes, it takes a lot of planning, preparation and I am absolutely shattered by the time it's over but I feel good. I feel happy.

I'll never know exactly "how long I have" but to be honest, I don't want to know. I want to carry on living my life the way I want to. I want to make sure that when my time does come, I can honestly look back at my life and say "Yeah... I did a pretty awesome job there."

Loves
Wendy xx

Monday, 22 September 2014

Hobbies

OK so I have been doing some new stuff recently. Stuff I can enjoy and honestly say has been rewarding. I have always had an interest in 3D animation, always wanted to learn how to do it myself. So I asked Natt to teach me, after countless hours of experimenting (and some of the funniest expressions ever) I seem to be getting the hang of it. I am by no means an expert but I am learning by doing and the results are something I am proud of. Sometimes a new thing to learn can help and build you up from a confidence angle. I think it helps both of us, gives me a new thing to learn and Natt someone to teach and help.

It's taken me this long but I have resolved myself in to thinking "Yeah, OK, I may not have forever here, so let's fill the time with good stuff." and I have been spending so much time with people I love and enjoy being around. We have started to do more social things as a group and we have a great time in doing so. Yesterday was nice because we had a group meal at a place in town. There is something quite nice about having a decent meal with friends, even if they seem to eat about 4 times what you eat! Mike and I were talking Pokemon (next time we meet, we're both going to have our 3DS's at the ready with our Pokemon games so we can trade) and he's seen the ones I have as well as getting my Pikachu to eat the sweets we offered it.

I've had my 3DS for about 2 weeks now. I wanted one since playing on Mario with Jace at Christmas but one thing I had to remember was paying back the loan a friend gave me to set up my home. Since paying her back, I have had more to play around with and I finally took the plunge and treated myself to a red 3DSXL (I have the XL versions because they're much easier to see and you can play them with someone easier, Jace and I like Phoenix Wright games so its more fun to share) and found my DSi a new home. I don't miss "Old Blue" as much as I thought I would. Currently I have been playing Theatrhythm, a Final Fantasy music game, and despite my initial reservations, I have found it really fun to play. I also upgraded the HDD in my PS3 as well (my original one was only 12GB, I mean seriously?! Who could even play with that little memory?!) which was actually much easier than I thought it would be (simply slide off the cover, slip it in to the slot and turn the console on and you're ready to go). Yeah, I am a tech-head!

Last week, I also saw my mum, and met her new boyfriend, which was really awesome. It's been great being back in touch with my mum again. Being ill, there have been times when I have really wanted her to come and be there with me, which is normal when you're feeling vulnerable or scared.  I've had some scary things happen in the last few months alone and it kind of got me thinking about life in general. Making up with my mum has been way past due because, despite our differences, you only get one mum and its in going through things alone that you realise just how much you still need her, even if you are all grown up. I think it takes a lot of courage to rebuild those kind of bridges and theres a lot that has to be said to heal the relationship. I'm glad that we got that chance. I don't feel so alone anymore and I feel happier as a result.

I think that lately, I have been filling my life with the things that make me happy, cutting out the things that made me feel bad or miserable because I figured out that people can only make you miserable when you let them. I let people push me down and make me believe that I was this horrible person who deserved what they got for so long so I am changing that. I know I didn't do anything wrong and that I didn't deserve any of this, I just have to smile and make the most of it and enjoy life while I can.

Loves
Wendy xx

Tuesday, 26 August 2014

Unanswered.

The more I look in to bronchiectasis, the more it bothers me that it was never picked up on before, especially when you consider that there were so many opportunities to catch it. It wasn't as though I never ever went to the doctor or hospital and had never had any scans or tests or anything or the "classic" symptoms of the condition, things like constant chest infections, worsening shortness of breath, not to mention the knock on effect it has on my asthma. All I knew was there was this mysterious "shadow" on my X-Rays which no one seemed to be able to explain what it was and why it was there, in fact the common thing after they saw it was on every X-Ray since last November is to try ignore that it's even there! The most common explanation was that it was part of the scarring to my airways after years of chronic severe asthma and more chest infections than I dare to count.

I had a CT scan in March during a particularly long and difficult admission where I was in for nearly 2 weeks. It followed a life threatening asthma attack, OK so I didn't do myself any favours by trying to ignore it for days because I didn't want to go to the Alex (who does?!) and the doctors were wondering why I was only getting so much better at any one time and then declining so fast again. By this point, I had been admitted to hospital about 4 times in the preceding 6 months. We were told that the consultant radiologist who reviewed my CT scan had reported that apart from scarred areas which are typical of my condition, my CT didn't really show anything out of the ordinary. When I was finally told that the scarring was very pronounced and there had been airway damage in June, I was daunted but the promise that if/when these lungs are done, they would get me on the transplant list but until then, it could be 5-7 years and I should make the most of it. I was started on home oxygen and to be honest, since being on that, my quality of life has improved. Since being on it, there has been a huge turnaround in my life. I have a better outlook. I go out and enjoy myself. Heck, I even take pride in my appearance and enjoy making sure that I look as pretty as possible before going out.

So being told that on top of everything else (the asthma, the scarring and all the other conditions I have) that I had actually developed bronchiectasis as shown in my CT scan (yeah, the one in March that a consultant radiologist confirmed, during a case with another doctor, didn't show anything inconsistent with asthma). So I could have been had this condition and it being left untreated for 5 months and we didn't know. It bothers me because had this been picked up in March, we probably could have avoided the subsequent attacks and hospital admissions, we could have gotten on top of it BEFORE I needed home oxygen and the life threatening attack I had last week could possibly have been avoided.

I want answers.

I want to know why it was never picked up on before.

I want to know why medical staff involved with my care had actually lied in my records.

I also want to know why parts of my medical records have "disappeared", especially ones where clear indications were shown of my state of health and quality of life which would have been detrimental to the medical team involved and forgeries and falsified ones took their place.

I want to know why this seems to have become a common practice (I spoke to a few people who have had the same things happen. Volumes of medical records "going missing" and their existence being completely denied) and lastly, why is it even allowed to happen? Our medical records are supposed to be accurate and credible and show an objective portrait of a person's past and present health to allow a prediction of future health. These notes, whether they're on computers or paper, should follow a patient from the cradle to the grave and they shouldn't be forged or changed just because one doctor doesn't like what he sees or if a complaint is brought against them, could be detrimental to their career. After all, it is them who make the decisions in to how any health problems are managed, so I wonder, if I can't trust the doctors to make credible and accurate notes on my health and those notes not be corrupted, then in all respect, who can I trust? As I say, I want answers and there is no way in hell I am backing down until I get the, and the wrong things put right.

But enough about all of that, on a bit of a nicer note (music pun coming up) I have been learning some more songs on guitar. I love playing but haven't for some time because playing does take a lot of energy, so I play in short amounts and if I have to, I boost myself, especially if I'm playing and singing at the same time. The song I learned this weekend was one by a man called Voltaire called "USS Make Shit Up" which is about Star Trek and how they seem to make it up as they go along. I have watched a fair amount of episodes and it does seem a bit of a "Well this works here, but suddenly it won't anymore" which is quite entertaining, but it started in the 60's and the fact it's still going is something cool I think. I don't really like it as much as other things but I can respect it's longevity. The funny thing is that Voltaire is a huge fan of Star Trek and his observations on the series are both funny and affectionate. The music is fairly simple but there's something satisfying about learning a new piece, even if it is just a few chords. I wouldn't fool myself by saying that I am the best guitarist in the world, but I enjoy what I do.

I do wish I could play the flute again though. When I was younger, I took so much pleasure in playing the flute and my certificates for grades 1 and 2 are still on display in my bedroom because I was so proud of myself for getting them and achieving something. It may not be the most amazing thing to get, but having something to look back on and say "Yeah, I did that." is really a morale boost. Especially when I feel a bit rotten. That and some of the other things I enjoy like retro cartoons or listening to cheesy J-pop. Right now the song "Pon Pon Pon" keeps getting itself stuck in my head. The song basically translates to letting your crazy side out and do whatever makes you happy. The funny thing is when I was singing along to it in hospital, the nurses were wondering what I was on! It's one of those songs that you can't help but smile when it's on. 

Ah well, I guess I am just going to have to see how things go.

Loves
Wendy xx

Thursday, 21 August 2014

Strangeness

I have had some really surreal experiences in my life. Some were more self inflicted where as others have come about due to being in hospital with a lot of older ladies. The problem with it is that a lot of these older ladies are confused through no fault and they can't understand that there is other things around them and sometimes you do get attention seekers (there is always one wherever I end up, they wait for the nurses to come in and suddenly they start screaming and shouting like they're near murder!) and it says a lot when the all the nursing staff comes in at 4 in the morning because she started making such a noise that she woke the entire ward up just to tell her to shut up and stop being a pain. She wants to be centre of attention and basically if she doesn't get it, she rips drips out and causes problems and actually worsened her own condition just so she could stay there longer.

Basically the consultant has ignored everything that is contrary to his thoughts on my asthma, the most annoying was the clear desaturation I had when on air and the oxygen being reinstated by the nurse (saying I reinstated it when I didn't, I am not that stupid to turn the oxygen back on when it was switched off at the wall, that's for the nurses to do) I actually resisted when the nurse tried hooking me up to the nasals). I think it wasn't the content of the lie (it could have said "Has been growing a set of antlers" or some other rubbish and it would have aggravated me) but the whole practice that seems to have come about where lying to cover their tracks is the order of the day. I have taken photos of my records and I have that ready for when the time comes. It was funny when the respiratory nurse and some of the other doctors read my letter and said that it was all a pile of rubbish as the nursing notes clearly said the opposite. Heck the results of the previous breathing tests he was looking back at were in 2005! That's nearly 10 years ago and I was in a completely different place with it, I hadn't had any life threatening attacks or pneumonias.

Shes come up with a plan to do another full oxygen assessment with me, to prove her point that I should be on a little more and to give that one doctor the ultimate in "so there" as well as the other doctors who agreed that there is a COPD element to my asthma, probably due to repeated infection and these being poorly managed, and my asthma is anything but mild and manageable. Well, it'll all come out in the end, as for now, I will save on my indignation until the time comes when I can vent it properly and have something done about it because when it comes down to it, I am the one who has to live with it for the rest of my life. As for my supposed "not engaging" with their plans, I did engage, heck I made myself worse by doing so! I tried the new inhalers and had no benefit and I tried the new plans, heck I even allowed them to cut my antihistamines to just one (and now have the drippest eyes and nose I have had in a while). Luckily I have others on my side on this so I don't have to accept it. I asked for a second opinion. I got it. I then asked for another doctor as a tiebreaker. I dread to think what this more "detailed" letter is going to contain but I have my ammo ready just in case. The funniest thing was when the other doctor looked through my notes and then my discharge letter, saying it looked like it was from 2 completely different patients!

I think I am just happy to be home right now. Back in my own bed with familiar surroundings and away from being kept up all night by noisy patients (I can't get over the one patient, she was really funny, she pointed to the attention seeker and said "I can't deal with this irritation" which set me giggling and then the whole shout of "I have a itch up my bum!"and then her thinking I was the nurse, thats when it got weird! I won't go in to the scarring details but it would have been funny if it hadn't really happened.) The only thing I have to worry about is that I am now in the recovery stage of the attack, it takes time for me to get my energy and strength back after attacks. I don't leave the hospital well. I just leave less sick.

Having my meds bounced around so much just days after a serious attack is one thing, the fact that the attack was completely ignored by the consultant at the time. It says something when you check your peak flow (which they weren't monitoring on the ward, what the hell?!) and it's only just higher than what it was when you were first admitted and they had been considering ITU. Kind of raises some serious questions doesn't it? I am glad I got another opinion before I left, on top of the previous opinions of Dr Lal and Dr Brocklebank (they confirmed the bronchiectasis and the other doctor, who I have seen in clinic was the deal breaker) otherwise I would have been left up the creek with a mouth like sandpaper (common thing with Spiriva) and barely able to move at all without cranking my oxygen up. And this is what they thought was best for me?! I am going to get a call from the GP tomorrow and get their view as well as re-referred to the SBAU. As for now, I am re-adapting to Atrovent, I think I took for granted how much that stuff has helped me over the years and I will never be unfaithful to ipratropium again!!

I guess I have to think positive about things, they know a bit more as to why I have been so crappy and we finally know what those shadows on my X-Rays were.

Loves
Wendy xx

Wednesday, 20 August 2014

Going Home

I think one thing that has come from this admission is we know for sure that I do have bronchiectasis and scarring of the airways. This was apparently discovered after my chest CT in March, (yeah, the one that the other team dismissed as "normal" and now it magically shows something...smell that? I smell bullshit from somewhere and I am going to find out who it was and in short, their ass is mine.) and I am already on what would be the best treatments and care needed.

The problem I seem to run in to with the consultant comes from the fact that he has never seen me in the throes of an asthma attack because by the time he can come to see me and review me, I am over the attack and am in that kind of shaky post attack stage where I am either very sleepy or I have started to bounce back. He didn't look much in to my history and was pretty sure that my asthma is very much the same as what I had 10 years ago (I wish!) and he didn't notice the A+E notes, the previous admissions or anything else. I do think that they had the 1st volume of my medical notes which hasn't helped but that then makes me wonder, where my other volumes are. In some ways it's like turning up at the cinema during the last 20 minutes of the film and only getting a small part of what happened. So all he sees is the kind of post attack which makes it hard to determine what my asthma is like day to day. He doesn't see (or have all the same evidence that everyone else has, as I said, a lot happens in 10 years) that I get so breathless day to day so I am glad I'm under a team instead of one doctor.

When the attacks are over, I can have (with assistance) a pretty alright quality of life. I'm not running marathons or partying all night, but I get by. Luckily for me, the other consultant, Dr Lal has seen me during an acute attack, as has Dr Brocklebank (who once attended me in resus and was finally turned around on all of this). The problem a lot of consultants, like my Dr Vathernan, have these days is that because they have so many patients to see, (he didn't remember seeing me in March, but he was there!) and they only see what they see when they see it, it's hard to decide how severe something is off a small chunk of the bigger picture. Sometimes, because I am a really complicated case, it can be hard to take in the whole portrait instead of tiny postage stamp sized portion of the picture. The other thing he seemed so focused on was just how much medication I am on and all he seemed to want to do was reduce and stop things. Luckily he saw the light with the nebulisers and listened when he was told that they work for me, he really wanted me off home nebs but I think after a good long chat, we decided to keep them but I would be best going back to SBAU.

I'm kind of on the last few desperate attempts to regain control. We tried taking me off some meds, which unfortunately didn't go so well. Again, (like a thing we did in SBAU where I was taken off EVERYTHING, stripped down and started again) which I could have told them would happen but I think sometimes they have to see it for themselves. We're trying a new medication called Spiriva. I have never had it before so I am willing to try anything. We did try going back to Seretide for my asthma but honestly, all that achieved was I had a small attack before bed last night which meant that I didn't get a whole lot of sleep really, took us ages to calm it down and by the time we did manage, I was too exhausted to care.  My oxygen has been increased to 1-2l at rest (if we can get it to just 1l at night so that I stay comfortable and breathing easier) and I am going to be assessed by the respiratory nurse to get a special concentrator machine at home, along with my current 6 cans. It was decided earlier that this would be needed but the consultant had a hissy fit because he didn't want to accept that my asthma is brittle, but as the nurse said, it is sometimes a case of his ego gets in the way and being proven wrong annoys him, not to mention his idea that nothing has changed over the last 10 years.

I do have my diagnosis from an asthma specialist. I went through the process of diagnosis years ago and we started from scratch at the SBAU in Birmingham. The one thing I am really struggling to come to terms with is the fact that I have had 2 conflicting diagnosis' on the COPD matter. One person says one thing, another says the opposite. Who do you believe?! Dr Lal, who everyone sings his praises and rightly so because I have been seen by him a few times and he has exacted a lot of positive change in my life, or Dr Vathenan, who everyone is saying has a nasty habit of not listening to people and has in recent years started to become a bit past it. I'll entertain the Spiriva but I really am not seeing much improvement from it and all it has done is dry my mouth and that's it. But I said I would give it a week and I will do just that. I was told by the junior, who was wonderful and listened to me when I got upset about the pain, he said if I didn't feel any better after a week, call the GP and get back on Atrovent. It's all a little confusing to be honest and I was proud that I managed to keep on top of my asthma for 12 weeks (sometimes by the hard way but we got there) and the Jr doctor who has been helping me has agreed that chances are this was a blip on the road and a radical shuffle of my meds has probably caused more harm (or at least more frustration) than good really. Kind of what I said from the start (but what I do I know eh? I only live with these issues day by day, I wonder if doing an "I told you so" dance would be in bad taste?).

I am set to work with respiratory nurses to try and make the best of things but the final say so will come from the consultants. With 2 out of 3 of them on board, I can't see myself running in to any issues and the respiratory nurse agrees with me in that one. I think the main problem is that we can't definitely diagnose asthma or it's severity. Some patients could present one day very well and then at death's door later on. I think I am happy that I am going home tomorrow, the old dear across the way is driving all of us potty because she constantly moans and screams out "Please help me!" and loads of other misc moans can complaints and groans. I know she can't help it, but when you're trying your hardest to sleep at 2AM, you really don't want to have to listen to it, especially when they do what they can for her and all she does is attack them in return.

I was talking to the student nurse today and she told me how the family just dumped her here and refuse to take her away until she goes in to a home. I think when families do things like that it's horrible. It's like they no longer continue to be human beings and are just a nuisance to be "thrown away" just because the family can't be bothered anymore. The unfortunate thing is that they get left on hospital wards where they could pick up infection from anyone/anything and they increase the demand on the nurses as they have to spend more time tending to them as they can be very demanding, again it's not their fault, combative and no matter how hard they try, they can't seem to keep track on all of them, especially the wanderers. The other people this has a knock on effect on is the other patients in the bay. Because of 1 or 2 demanding patients who want to be nursed 1-1 all the time, regardless of whether they need it or not, not to mention the paperwork, the other patients don't get the level of care they need, and if they're a screamer, they sometimes end up keeping the other patients up all night as they don't know they're doing something they shouldn't. I've been cooped up with 3 screamers for the last few days.

One is just confused and sometimes asks us random questions, she's harmless really and every so often you just have to talk to her and it can be quite fun because she likes to talk about her children. We have one who randomly wakes up and asks for help to get out of bed, back in to bed but the nurses are being a bit tough and trying to motivate her to move herself. Again, once shes settled, shes no problem. It's the third one that makes the rest of us on edge (even the two ladies) because any time in the day or night she starts shouting, moaning and crying out, the nurses deal with her but never find any problems. She needs to be in a proper care home, where she can get the 1-1 care she needs, not being left in a hospital where she is obviously in a lot of distress, is scared and is making the others nervous and scared, I feel for her, I really does because all they seem to do is give her meds to help her go to the loo but shes obviously in a lot of pain and is very scared. I really hope they help her to safety and she manages to find a peaceful place to rest.

As for me, I am planning on discharge today (YAY!!) and I will probably call up and get advice regarding Spiriva as I am skeptical, I have needed my inhaler more today, we'll try anyway. We don't know what we can achieve until we try do we? But I can can say that Seretide and I won't be mixing again, just doesn't help me and well, I was kind of annoyed that they made me open a new inhaler to have 1 puff and it do that to me. I took it and this sudden  pain and tightness hit me, before I knew where I was, I was really struggling and needed a lot of nebs to get settled down, so I am back on my Symbicort, so really not a lot has changed but at least we know that I have developed something as well as my asthma so there is more of a reason for my issues now with the bronchietatsis and airway scarring which is unfortunately a forever deal so I have to just do what I can and see where we end up. I can't wait to get home, the care here was great but I am not going to miss the patient going berserk at 4am!

Loves
Wendy xx

Sunday, 17 August 2014

Attitudes?

A recent death of a legendary actor and comedian has really sparked a lot of debate about depression and mental health problems in general. It never ceases to amaze me how suddenly everyone suddenly wants to talk about mental health and encourage those of us who do have a condition to speak out and get the help we need but have either been trying to get (but can't due to NHS budget cuts or social reasons) or have been denied for one reason or another. Mental health matters. It should be taken seriously and there shouldn't be any kind of stigma around admitting it when things are really bad.

It's no secret that I have suffered with mental health problems for many years, ever since I was about 7 years old. I had severe depression as a teenager and ended up having to see a psychiatrist as well as being offered antidepressants at the age of 13 (we never took them because we didn't want me to have to fight a drug addiction as well, it was the right decision at the time) and my adult life has been fraught with mental illnesses. I have been sectioned before (luckily it was only a couple of nights so I could clear my thoughts and get some rest) and I am on a number of medications to help me, including the antipsychotic medication Quetiapine (Seroquel). I suffer with bi-polar disorder, obsessive compulsive disorder, borderline personality (schizophrenia) and have battled against eating disorders (at one point, I was just 7 stone and my bones poked out of my skin), self harm and have even made several attempts at suicide. I am not ashamed of this though and I am very open and honest when people ask me about my mental health.

I know there is a stigma about mental health and a lot of us are made to feel ashamed of our conditions. Maybe it stems back to the times when people with these kinds of problems were locked away in prison-like asylums and treated like animals by the "attendants", subjected to cruel "experimental" treatments and generally abused because no one really cared enough to say "Stop it!" I have read stories about how some patients were abandoned by their families and locked away, made to undergo cruel practices like ECT. People who had confessed to alternative sexuality and were made to undergo a "treatment" for it. The things I read were horrifying and it made me wonder if things are really much better for people with mental health problems now? Unfortunately I can't really say as I have only had few dealings with the mental health teams directly, including a crisis team when I was going through a lot all at once and needed help.

I am more experienced in the care of physical illness and often require hospital admission and care. I see a lot of people whose mental health has declined over the years and have developed severe dementia. It isn't their fault and they don't understand what they're doing but I do feel that better provisions should be made to care for the elderly, the senile and those with other mental health problems instead of shoving them on medical wards to run the nurses ragged and be detrimental to the recovery of other patients. The other issue here is that an elderly person on a ward full of sick people is at risk of contracting an infection. It's kind of a cat among the pigeons really.

Some patients don't need to be here and are only here because of "granny dumping", where families take their elderly relatives to A+E and leave them there and refusing to take them away again so they end up stuck on wards, bed blocking. It is one of my pet peeves admittedly because I have seen it so many times and have been stuck on a ward with an old person who doesn't know what they're doing and sometimes they tend to wander, putting themselves in all kinds of danger so the nursing staff have to run around after them instead of caring for other patients. There is a patient on the ward I'm on now, shes been shouting "Nurrrrse!!" and a load of other things (some were rather unpleasant) since 6 this morning, waking everyone in this room up. She kept saying about how she wanted to go and find her children and the poor dear doesn't understand that she is actually in a hospital and she got more and more abusive towards the nurses, especially when they told her to hush up as she had woken up all the other patients.

On MAU, I had a run in with one lady who had decided that my blanket and Sephy were hers and that she had had them from the start, luckily the nurse recognised my belongings and said to her not to touch other people's things. She also had her eye on my tablet and my oxygen bag so I had to hide them away! Her other habit was wandering off so the nurse had to keep a very close eye on her, despite being run ragged by other patients. I felt so sorry for the nurse, she was lovely and she had so much to do all at once. It can't be easy.

I saw the doctor again today, it's funny that years ago, the doctor was my consultant and we didn't really click but now we get on really well and hes really changed his mind around asthma and how it should be managed. He was a bit worried as my chest really played up last night and we had an unsuccessful attempt to reduce the oxygen I am on. We are trying to get me back to my usual flow of 2l via the nasal cannula from the 8l through a mask. We have also added another antibiotic in to the mix and we aren't having issues regarding my lorazepam anymore. I had to explain that I have it as a part of my asthma treatment as it helps to relax the muscles around my airways to stop it all from getting too stiff, the side effect of it though is that it can make very sleepy which can be a problem as I was admitted because of my asthma being a pain. We also added another antibiotic to the mix to help me really fight this infection off, still. The worry was that I coughed up a bit of blood (because of all the coughing, I upset something inside) but they're keeping an eye on me and things should start to move forward soon.

I really hope that everyone else is having a good weekend!

Loves
Wendy xx

Saturday, 16 August 2014

Do YOU Know What to Do?

If you were faced with it, would you know how to deal with an asthma attack? It's something that most people don't have to face and not a lot of people know how to deal with an asthma attack when it happened right in front of them. Shockingly, 9 out of 10 fatal asthma attacks in the UK could have been prevented by better care from medical staff or emergency first aid before the ambulance arrives. Medical staff are complacent when it comes to asthma and it can sometimes be hard to impress upon them when you are having difficulty and getting them to take it seriously (the most common one I have noticed from not only my own, but other people's experiences is that they assume that just because your oxygen saturations are "normal" doesn't mean that your chest isn't tight and you are struggling to breathe, in fact in most cases, SPo2 doesn't drop until the very last minute where things get to "critical" stage). We have had to argue with people to get the right care because people weren't listening to the whole story and only looking at a small part of it.

As I have mentioned previously, my attacks tend to come in stages. Usually you can tell if I am either about to or am starting to have an attack by observing my behaviour. Usually, before an attack, I become very withdrawn and spend more and more time in my room hiding from the world. I become quieter than usual and I tend to leave a "trail" of things I've been doing as I find it hard to keep my interest when my attacks start. I also cough. A lot. And my breathing sounds wheezy and I start gasping for breath because it gets tighter and tighter until I start a nebuliser. Nebulisers at home aren't as common as they used to be, in fact, I am one of a few people in my local area to have one, especially at a young age. The nebuliser machines I have are brilliant pieces of life saving equipment. When I have a nebuliser, I use Salbutamol (Ventolin, blue inhaler) and Ipratropium (Atrovent) every 4 hours. During acute asthma, I have my Ventolin nebs and I usually have a margin of up to 15mg Salbutamol and increase my oxygen slightly to 4l before I have to admit defeat and call for an ambulance. 

Although I avoid hospitals like the plague, not all my experiences have been bad and there have been many times where an admission to hospital has saved my life. As soon as it happens enough, doctors do learn the pattern of your condition and quickly know what's normal and what's not. Even my friends and close ones know what is normal for me and when I am going rapidly downhill and need to either get seen by a doctor or when I have to medicate. Most cases, we can get it settled down with 1 or 2 nebs, maybe some pred and of course pain killers to ensure that my recovery process starts pretty much right away and pain isn't left untreated.

That in itself is a weird one. Not many people appreciate how painful asthma attacks, and the aftermath, can be. If you really look in to the mechanics of it, you are working your muscles hard to try and get the air in, and you do wind up using a lot of muscles that normally wouldn't be used (accessory muscles) around your shoulders, neck, collarbones and your entire ribcage. I have pulled my chest muscles more times than I could count and cracked ribs enough times to know just how uncomfortable it can be, not to mention the pain from the residual inflammation and soreness of your airways after an attack which can be so bad that the only way I can ease it is with lorazepam and morphine (2 very strong drugs which act on the CNS to try and ease pain). So after an attack, it's kind of normal for me to just want to sleep for a while and feel like I've just run 10K.

So, what do you do when someone has an asthma attack? As I said before, I am one of a minority of people who use a home nebuliser so other asthmatics should carry a blue "rescue" inhaler around with them.

1. Try and get the casualty to sit up as much as they can. DON'T lie them down as this can make their breathing harder. Try and get them to take slow and steady breaths.
2. Reassure them. Its a frightening thing to happen so remember to think as scary as it is to a spectator, imagine if you were the one going through it. Listen to them if they tell you something as they have had attacks before and probably know more about whats going on.
3. Get them to take 2 puffs of the "rescue" inhaler.
4. If that doesn't work then get them to take 2 puffs on their inhaler (preferably through a spacer if it's possible) every 2 minutes, up to 10 puffs.
5. If that doesn't ease it or you really are worried or unsure, call 999 and get an ambulance. They often say that they prefer to come out to someone before they get critical than if you leave it too long.

Yesterday I had a lesson in leaving it too long. I kept trying to tell myself I was find and that one more neb would do it. By about 4, it became completely obvious that this wasn't to be the case and I first tried to get a hold of my GP and the receptionist begged me to dial 999 and that's what we did and well I'm not 100% sure what happened but things did get to a "life threatening" state when my oxygen levels suddenly fell and apparently I was in and out of consciousness.  All I really remember was feeling a bit sleepy, and then waking up in one of the resus cubicles hooked up to monitors and machines and with drips everywhere. Scary!! I did probably let it get out of hand because I am just scared of the hospital because some of the experiences of the past. But now I understand how important it is to get help sooner rather than later.

I think that the longer I was away from it, the more I managed to convince myself that this was a bad place. This was a scary place and I was going to be left in pain and not be helped. Nothing was further from the truth which I realised when I had about 3 nurses, 4 doctors and Natt sat to the side urging me on while we all fought. We won the battle but there were talks of ITU and I had the ITU doctor come to see me, problems with getting an ABG from my wrists (4 attempts and even one in my femoral artery, we couldn't get a sample! We had some venous samples but it took several attempts to get my arterial sample!) and my asthma generally refusing to behave itself. It took us a while before I was stable enough to move to a ward but now I am here, I am well and truly on my way to recovery, a bit battered and bruised but I am here and we did win the fight and I'll no doubt live to have many more where that came from.

I guess the next thing I need to do is concentrate on getting better, improve my breathing and infection and then get myself down to my usual 2 litres instead of 8, although I am going to need to keep my wits about me as there is a new patient on this ward, a 94 year old lady who sadly doesn't know whats going on and has already tried to walk off with my Kitty blanket (grrr -MY- Kitty blanket!!), Sephy and my oxygen! Luckily she seems oblivious to my phone and laptop! It isn't her fault but she will probably need supervision so that she doesn't hurt herself (or any other patients) but I know I'll be sleeping with one eye open!

Loves
Wendy xx

Thursday, 14 August 2014

How You Look at Life...

I guess that I have been feeling a bit down about things recently. I do feel tethered sometimes and it is kind of a constant physical reminder of my illness that I have to carry around my bottle in a bag. At first I had the novelty of "Yay! I can breathe again!!" But that has worn off really quickly and in a way it kind of makes me think "Yay, now I can breathe, can I ditch this thing now?!" Which leads me to try and do things that are probably not clever (things like walking around without my cannula on) and as a result I then get annoyed at myself for getting so out of breath! I think the one thing I am going to have to accept now is that I am on oxygen and I need to use it. As I get older, I will probably need more and more, but I can cross that bridge later. For now, I try and stick to using as little as possible (my usual flow is 2l but have been advised to go up to 4l when walking around on bad days, and those bad days do happen) and try and keep myself moving.

It can be tough to accept when you have limitations. Especially when you never really used to have them. I wasn't born with my conditions as bad as they are and they only got worse due to certain circumstances, living in a place where poor hygiene was the order of the day and other things that made it get worse. Perhaps had I not gotten the pneumonia I had when I was 21 (the first one that was in both lungs and on that one night almost killed me) then maybe I would have been better now. I could pick the past apart for hours and point out where things went wrong, but what would it change? Would scrutinising the past obsessively make my life any different or any better? Not really. If anything it would make me more angry that this whole thing happened in the first place. I am trying to take a more pragmatic look on things and instead of thinking "What if...." focusing on "What is."

One simple joy I had forgotten about was sitting at a table and having a proper "sit down" meal with my friends. Sure, we go to the pasty shop or Subway, but there really is something different about the group of us going to a proper restaurant where everyone is dressed nicely and sitting around a table and talking animatedly over a meal. It was really nice because we didn't have the usual distractions, (the food was absolutely delicious!) and we all managed to sit around and just talk about everything and anything. I love going out with people and having those kind of interactions because its the one thing I really miss. I miss going out with friends for a drink, walking around Hanley with Cat and having a drink and lunch at "Spoons". It is one thing that being ill has taken from me and now whenever I do go out, I have to plan everything out and plan medication around everything.

Everything is done in 4 hour chunks as every 4 hours I have nebulisers and pain medication. Around 5 is my second dose of "3 times a day" meds and I tend to do my last nebs and meds around 11pm when I go to sleep. It is a kind of routine and it is important to keep up with it, no matter how much that can interrupt with having a "normal" life. The fact is, without a lot of these meds, I would have died a long time ago and I can't afford to get lazy or complacent about it, even if it is annoying or hard work. It's just one of those things really and when it's done, it's done. I don't mind having to do things like taking my nebs in public anymore or having to take my morphine. Yes people do sometimes stare. And I have been subjected to some rather unpleasant comments but to be honest, its my condition and I am the one who lives with it day to day so no one else should really be allowed to upset me about it and the only person who can stop them from making me feel that way is me. I know my life, I know what it feels like to struggle for breath and I am the one who manages it day to day.

I suppose "normality" is what you want it to be. For me, I just have to remember to take it easy and accept the help I get from the friends who have been so kind and so generous with their time and patience to come over and help with taking care of me. I think it is hard, especially for people who knew me before all this, to be able to help someone when they're weak or feeling unwell. I am thankful to have supportive people around me because without them, I honestly don't know if I would be here today and I just wish I'd reached out earlier really. I guess I didn't because I was scared of what they would have said or what would have happened. It doesn't really matter now, but I would definitely advise others in similar situations to ask for help. I'm not a victim of an abusive partner anymore. I am a survivor.

I think it is all a matter of perspective and how you see yourself. Some days my tank feels like an anchor, other days, its like a jet-pack that makes me able to go and do things. My chair isn't holding me back, it's pushing me forwards. I believe I survived all of the things that happened for a reason, although I am not sure what that reason is sometimes, and I will carry on doing what I can to keep going and keep on living.

Loves
Wendy xx

Monday, 11 August 2014

Reasoning

Its been a bit of a tough weekend for me, my chest has been playing up because of whatever it is that's left it so upset. I'm starting to think that it needs no "reason" to do the things it does but having the confidence to do what I need to (when I need to) is important too, I haven't had to call it yet but earlier, it really started getting close and I was starting to worry. It's not that I have anything personal against it, I just don't always feel confident in the local hospital. After some of the things I have experienced though, who could blame me really?

As I say, the whole place isn't categorically bad as such but as usual one bad apple can taint the rest in the same way that one or two doctors or nurses who aren't, lets say, that good with asthma can make you feel afraid of the whole lot. There were other things that made me fear medical help but I try and forget that because it was one person trying to assert their dominance over me to cover up the lack of control they had in their own life and to be honest, they don't make the slightest difference to me or my life now. I find that it can be frustrating when doctors don't listen to what you're saying or take notice of the symptoms in front of them. It doesn't happen all the time, but when it does, it can make you feel like a right old fraud and want to walk out. Asthma isn't easy to understand for us who have to live with it, let alone someone who has only really seen it from an outsider's point of view.

The worst treatment experiences I have ever had at the Alexandra Hospital have been on the Medical Assessment Unit, Female ward (MAU F for short). Usually this has been down to the nurses who only care about one or two measurements and don't look at patients as a whole. I had one occasion where I had been feeling unwell and had woken up gripping my side as it was painful only to be told "Just go to sleep." (gee, if it were that easy I wouldn't have woken up in so much pain now would I?!) and there was another occasion where the nurse didn't feel like getting me my night time medication because it was 4 in the morning and she felt that A+E should have done it! I then had to explain to the staff why I was still awake and why I was in pain, the nurse was told that she was wrong but that's not the point is it? Not to mention that traumatic incident last year when I had been left in pain for 12 hours because a nurse practitioner was refusing to do her job and kept crossing off what the doctor prescribed.

The point is, when a patient needs caring for, the nursing staff should do as the doctors say. Another one was when I was prescribed back to back nebulisers (which basically is non stop nebulisers which take about 10 mins each) and after only having 1 in the space of an hour when I should have had more, I spoke to another doctor and asked if I could just use the solution I had in my bag instead! They agreed and said that really they should have been done by the nurses (who were sitting around the nurses station watching YouTube videos) and that I shouldn't have had to do it all for myself. I did put complaints in and they were told off for what they were doing but it does leave a mark on you and it does make you not feel like you can trust the people who you're supposed to trust with your life. I can't fault the staff in A+E, they do a great job despite being overworked and underpaid and the staff on other wards tend to be lovely and helpful but you do still come across the one or two who don't seem all that fussed with patient care.

Last time I was in, I was admitted directly from clinic by my consultant and the next day I was moved off MAU F to another ward (thank goodness) and this admission seemed to have a more positive outcome. Something had to change and I am glad that it did. Admittedly, I wouldn't go as far as to say that I like having oxygen at home, but I like the fact that it has allowed me to do things that before, I never thought I could again. I can go out and do things, enjoy shopping with my friends and even go out and socialise with people again. I feel like I can live what I would call a normal life. One where I'm not struggling to breathe constantly. One where I could walk up to the shop and back without my oxygen on.

We are talking about reasonable goals. Realistic things to aim for. I don't know what is possible and what isn't yet because, well I haven't tried and can't say for sure. Maybe one day I will be able to walk to the corner shop and back without having to rely on my oxygen tank. Maybe one day, I will be able to go in to town without my wheelchair and be able to walk around, even if I have to use a crutch or a stick to do so. I want to make sure that I am as healthy as possible because I have read countless stories about people who get sick and die young, leaving their loved ones in a state of sadness and loss. I never want to do that to the people I care most about. The thought of dying young and leaving the people I love to feel sad makes me feel so unhappy and I realise how selfish giving up really is. When you give up trying to make your life better, you give up on the people who you care about and love the most. In the same way that self harm was a selfish act. I know I won't be running marathons or walking all the way in to town and back. But if I could be able to manage short distances then that would feel like an achievement to me.

The important thing is not getting too disheartened if it doesn't go the way we want. Even if I only see a little improvement in myself in any of this, then at least I'm still trying instead of resigning myself to being stuck in a wheelchair for the rest of my life. If I can, I will get myself back on track and I have the inner strength to stick with it and family and friends to keep me motivated when things get rough, on top of that, I have a boyfriend who makes me feel like anything is possible when I think of him. Having the support of the people close to me is really a reason to keep going and as they haven't given up on me, nor should I because to be honest, giving up and letting yourself be miserable and not changing anything is worse than not doing it because people said you can't. It's all about being honest with yourself and getting to know your condition better than anyone else.

It is better sometimes to think of things in terms of what you CAN do rather than what you can't. For example, I can sit and use my Powerball for about 10 minutes at around 7000rpm. Maybe I can aim for 15 minutes at 7000rpm or 10 minutes at 10,000rpm? I have noticed that I have been able to hold things easier in my right arm, last night I was able to get a mug off the side (something that usually results in shaking and a mess all over the bed and floor) and not spill a drop! That is quite the accomplishment for me. I know it doesn't sound like a lot to anyone else, but the weakness in my arms was becoming something of an issue. When you don't move around too much over time, your body becomes atrophied and weak, as a result, small things become harder to do. It's instinctive that as you find yourself getting breathless and worn out in doing things to stop doing them completely. We all do it. I am trying to counter that because, well, I hate inactivity and want to be able to do things for myself again. Amongst other things.

Sometimes the things we want are the things we need to work for. I lost the weight that I put on through pred and olanzapine and now I really want to tone myself back up. I have been wearing more feminine clothes recently and it has been such a boost to my self esteem. Look in the mirror every day and find at least 1 thing you can like and focus on it. To me that is my hair or my eyes. My skin is glowing (thanks to me drinking more water) and my hair is growing because it's being well cared for. I take pride in how I look and when I go out, that self pride and confidence really shows. After all, if I can't respect myself, how can I expect someone else to?

If you walk around town, unwashed and uncaring of your appearance then you deserve to have people shout horrible things at you, I'm not saying that everyone should be vain, but I think people should make sure they look at least halfway decent before going out, and washing is just part of this whole "personal hygiene" deal. Personal hygiene is important to me anyway. I can't be around someone if they stink and don't take care of themselves. It shows little pride and care in yourself to at least make sure you're in clean clothes, have washed and aren't crawling with who knows what. It's coming up to that time of year when the kids are crawling with lice and as they're going back to school soon which means that lice are going to be everywhere so we'll need to take more care to avoid it.

Loves
Wendy xx

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