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 Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) 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 and CPAP.

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.

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!

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.

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!

Wendy xx


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