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

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

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