For life's little ups and downs.
I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. 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.
I went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.
I'll flap my broken wings and erase it all someday... You'll see.
Wednesday, 10 December 2014
Tuesday, 2 December 2014
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!
Sunday, 30 November 2014
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?
Saturday, 29 November 2014
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.
Tuesday, 18 November 2014
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.
Thursday, 30 October 2014
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.
Wednesday, 15 October 2014
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."