Thursday, 28 February 2013

In sickness and on welfare

To summarise the last week - I've finally won one battle that was horrendous and something else that could have become a horrible nightmare didn't. Does that make it a good week or a bad one? I'll let you decide....

Winter vomiting bug, Norovirus, gastroenteritis, stomach bug. Whatever you call it, I have been battling with it since last Thursday evening. I won't go I to details, many reading this either will have had it, currently have it or will at some point get it (sorry). What I will touch on is just how much harder it is to cope with when you already have a chronic condition like CRPS.

You're throwing up into a bowl because no way can you get upstairs. The violent nature of the vomiting means other unwanted by-products are produced elsewhere (use your imagination). Remember I can't get up without help, and we (me wrapped in Eric's arms) can only shuffle along at best. This is not a good situation. When the vomiting happens on the hour, every hour throughout the night you very soon have absolutely no idea what to do with yourself. Don't forget that I sleep in my reclining chair. It was nigh on impossible to find a position which eased the nauseous feelings. We tried the emergency anti-sickness sachets I always have in reserve in case of migraine. These are dissolved in water. Straight back they came, as did anything else. Poor Eric had no idea what to do with me. Bella (my Border Collie) was scared and couldn't cope with me being sick, so kept running away upstairs. Bless her, she always came back up on my lap as soon as things had settled. Until the next time. And so it went on through Friday and beyond. It was only by Wednesday of this week that I finally started to eat anything like normally again. It felt like a lifetime...

Being in chronic pain it is vital that I take the arsenal of meds at the right times during the day otherwise my legs become essentially useless. The pain becomes so great that I can't really stand or weight bear even with help and there is no chance of sleep because the pain makes it impossible. This was clearly a huge issue, especially for my Morphine MST, which is taken every 12 hours and can't be taken again if you bring it back up.  Oramorph was clearly not an option. My GP prescribed medication to try and control the sickness and told us not to worry about my usual meds because the emphasis had to be on getting the sickness under control. So not only do you have a really nasty stomach bug, you have less control over your pre-existing condition than the little we usually manage. It was becoming a horror story.

For the next five to six days I've been held together by two lots of anti sickness drugs and anti diarrhoea tablets. You can only starve yourself for so long and some of my CRPS meds generally should be taken with food. So we had to try and start getting something into me. Tiny amounts of food, backed up with sickness sachets meant I was getting something into the system, but even so I spent long periods feeling very 'green around the gills'. 

Logistically it was horrible. Normally when you're unwell you take yourself off to bed. Of course this isn't an option for me, so I was stuck trying to get myself into a more comfortable position that would enable me to feel as good as possible. Of course I couldn't turn sideways or lie down so I was stuck in a semi upright position with my head only supported at the back by my pillow. Not ideal by any stretch of the imagination, and certainly hindered my improvement. I yearned to lie down, snuggle into a duvet, but of course for me this is impossible and would have been made the CRPS far worse than any small benefit it produced. The other problem of course is that I live downstairs, so no chance of a real quiet. Eric was amazing, turning the lights off in the evening and sitting in the dark because I couldn't cope with light at all. However with the TV on and the dogs coming and going it was a 'busy' atmosphere and made me feel worse. He cooked for himself as little as possible because the smell of the food made me worse.Of course the other major problem was that I was stuck in my chair as always. Couldn't get a breath of fresh air. Go and sit somewhere else, do anything to try and distract myself. I could only sit and fester. Another example of how a chronic condition makes things harder.

Thinking back to the first night, there was a point when I seriously considered asking Eric to call for an ambulance. It would have been sensible after all. I was wretching violently long after the point I had anything to bring up. Couldn't keep anything down long enough to try and control it. At A&E they could have sorted me out with a rehydration drip and injected anti sickness meds into me. Sadly there was little point. The restrictions the condition place on me make going to someone's house impossible. What would they have done with me? How on earth would they have got me into a bed etc? I couldn't have coped with the ambulance ride let alone anything else. Being handled would have been so painful it would have only added to my ordeal. I'd have been even more uncomfortable there than at home. It must seem hard to comprehend but trust me, going to hospital simply wasn't an option. No, I had to sit it out at home and hang in there. 

So here we are, a week to the day, and I am off all the sickness meds, 'only' having to deal with what CRPS throws at me. Never thought I'd say it but for once I'm grateful. It has been complete and utter hell. However as I alluded to at the top I have had some great news. A battle we won't, as it turns out, have to fight. Namely my Incapacity Benefit to Employment and Support Allowance transition. A previous blog covers what I went through to complete the form, but needless to say it was incredibly tiring, stressful and made my CRPS worse. I could go as far as to say that it laid me open to the bug I've just had and a virus I had before that. 

A brown envelope ironically arrived last Friday, exactly when I was feeling at my worst. My heart sunk. What did it say? Were they going to call me for a 'face to face assessment'? Had they put me in the work related group which would mean I would be expected to go on courses and have interviews at JobCentre Plus that would 'help me back to work'? I opened the envelope and the first thing I saw was £110.45. Seeing that number made me punch the air in delight. I have been placed in the support group. This was always where commonsense said I should be placed but after all the nightmare stories I've read and heard I was always very nervous and worried. 

In actual fact the transition couldn't have gone smoother thank goodness. They didn't call me in, made a decision quickly and I can now relax again, safe in the knowledge that I will continue to get my benefit. There was no review date given so I have no idea if or when they will ask me to fill in the form again but in the meantime they will leave me alone and in peace. I can concentrate on just trying to get through each day again, thank goodness. Wonderful, wonderful news!!

The process of applying for ESA, having now gone through it (in part) worries me greatly. The form is ambiguous, very long and to give sufficient detail to describe what life is like you need to really spell it out. Ok, I have CRPS, but my brain still works as it did so I can write about my condition, symptoms and their effect on my life. What happens if somebody can't do that? For whatever reason? Say, for example, all they can do is tick the boxes and perhaps write a few words. They could be just as disabled as me, but someone reading the form will have no idea. How could they? 

That is where the face to face assessment for ESA should come in as the safety net, as the medical did for Incapacity Benefit. I obviously can't comment as I haven't had the ESA one. I did have an IB medical when I first applied. However the numbers seem to speak for themselves. A quick Google search reveals just how many genuinely deserving people are being declared fit for work or being placed in the wrong group. 40% of appeals against the initial award are successful. That simply isn't acceptable and surely means the criteria by which these assessments are being made is flawed at best and not fit for purpose at worst? We are talking people's lives and financial stability here. These are massive, life changing decisions that are being wrongly made. Causing huge heartache and in some cases resulting in people committing suicide or dying (eg. for those with cancer or terminally ill) before their appeal is heard. 

Don't get me wrong, I'm all for catching those who are claiming fraudulently. They deserve everything the law can throw at them. Particularly as it is them who give everyone on benefis those terrible labels 'skiver' or 'scrounger' The UK has always been immensely proud of it's welfare state. It's caring society. I leave it to you to decide whether you think we still have a 'caring society' any more?

Saturday, 16 February 2013

Reality check.......

It's been a horrible week. As I write this I have, for once in my life been sensible and have decided not to go to archery tonight. A rare moment of weakness you might say? Perhaps.... or perhaps not. To be honest I don't feel up to writing this but here I am. Better get on with it then!! 

I have done nothing this week other than archery on Saturday, after which I had the horrific shivering episode (see last blog post if you haven't read it - it's all in there) and then archery at home on Tuesday. The rest of the week I've done nothing apart from play the odd video game (when I could), read a few pages of a magazine or my book and sit in my chair festering. I have had massive problems with my legs, eyes and head. I have lost complete days because my eyes have had to be completely covered, being intolerant to the slightest amount of light. The pain as ever has been awful, but when your head, eyes and legs are all thumping, burning, stabbing with pain at the same time, life isn't much fun. In fact it isn't life at all. I have sat in this chair willing myself to sleep to get away from it, with mixed success. Each time I woke my immediate thought was 'has it gone?'. Again with mixed success. Of course the pain in my legs never goes but to date my eyes have generally recovered over the course of a day. I then go for a period of time before they flare badly again.

..... continued, Saturday morning

It is a worrying development that my eyes are featuring so frequently in my payback now, although we already know that they are affected by CRPS. I suspect the intense concentration needed to focus on the target arrow after arrow is at the heart of that. Like my legs, using my eyes too much (by CRPS standards) causes payback. It explans the regularity of them flaring in recent times. The trouble is that there is no way to distract yourself from the pain when the eyes and head are affected. The activities mentioned earlier are my staple ways of trying to take my mind off the pain. Indeed when your mobility is so compromised, activities are reliant on using your eyes and brain. Take these away and what's left?

It seems that whatever I chose to try and do CRPS does all it can to stop me. The harder I push the harder it pushes back. Of course this isn't breaking news, it's been an ongoing battle between doing things and the payback that results. However the events of last Sunday in particular have really given me a wake up call. More than this it has forced me to acknowledge  the reality of my situation. I'm struggling to find the words, to express how I feel about it all now but there's a definite paradigm shift (Newtonian Physics to Quantum Mechanics anyone!!).

..... continued, Saturday evening

I think the fact that this is my third attempt at writing the nitty gritty of this post, shows just how hard it is to admit to yourself the brutal reality that is your situation. I have always prided myself on doing things that by rights I shouldn't even attempt but really enjoy. This is regardless of how I feel before and during as well as the consequences they bring. Speedway was my line in the sand. Archery joined it. I have of course tried to do archery more often than I should have and paid the consequences. I always thought to myself 'there's nothing physically wrong with my legs, I can't make them worse. It's just pain, then the inevitable payback and I can sit that out'. That's worked for the last seven years but the events of last Sunday morning have shaken that philosophy to it's very core.

I want to make a joke of it and say 'hello, my name's Jane, and I'm severely disabled and chronically ill'.  I never understood why people say I'm brave, an inspiration or they don't know how I cope like I do. I'm not saying I do now but it has dawned on me just how bad I actually am. It's a sobering thought I can tell you. I felt a bit like it when I was filling out the ESA form, spelling out the various symptoms and just what was involved in enabling me to do anything. The fact that I am reliant on Eric for absolutely everything. My payback is consistently worse and more debilitating (if that's possible). It takes longer to 'recover' and I rarely leave the house. Not because I've given up, far from it. No it's because it just takes so long to recover. Oh, and because I will insist on doing things like archery again before I should!!

I now have 50mg of morphine flowing round my body 24/7 as well as the other 14 (at the last count) meds. 50mg!! 60mg with Oramorph!! Hard to process that when you see people on the TV seriously hurt being given 10mg of morphine and their pain vanishes. It all helps but nothing takes my pain away, or the burning and everything else CRPS throws at me. Touches it at best. It's madness to be taking that yet still be unable to do anything other than shuffle a few metres clutching onto Eric. Is it really any wonder why I end up in such a terrible state doing archery? 

Worst is that it will only get worse, CRPS just keeps coming it seems, affecting more and more of my body. Where will it stop? Will it? Who knows the answer to that, I certainly don't? There certainly isn't any cure on the horizon. But if I'm going to carry on doing archery and speedway and perhaps getting out for the occasional walk with the dogs in my wheelchair I have to get better at the two things I'm absolutely lousy at... PACING and BEING SENSIBLE. Not words you'd expect to find in my vocabulary. Well if the last week has taught me anything, it is that I have got to be far more careful, oh alright... sensible. Not going to archery was the right decision because I do feel better for it today. I never want to experience that shivering nightmare again that's for sure.

Payback certainly won't stop me doing archery,  just as it won't stop me going to speedway. Those lines are still firmly drawn in the sand. But I will be trying to be just a bit more sensible and pace myself better. Who'd have thought it!!

Sunday, 10 February 2013

Not something I'd want to go through again!!

Eric took this seemingly comical photo of me with Kai perched precariously on my shoulder sometime after 5am this morning. What was really going on was a frightening episode for me, him and the dogs.

I woke up shivering. I don't mean the shivering  we all do when we experience a temperature drop, say when we go outside.. This was full on, completely uncontrollable shaking of my whole body. My teeth were chattering, both eyes were agony. Everywhere hurt, I couldn't move at all, I had no strength in my muscles. I didn't want to wake Eric. However after about 15 minutes snuggled under the duvet with my fleecy blanket it was just as bad. I had no other option. It was frghtening, I couldn't understand why I was in so much trouble. I didn't know what to do with myself. For some reason my knees were bent, so every shake was agony. I couldn't relax the legs at all because every time I tried the the pain was even worse. I was screaming in agony, couldn't find a position that reduced the intensity of the pain.

As ever Eric was brilliant. He went off and found lots of blankets which he put over me and tucked me in. a cup of tea with a bit of sugar in it appeared. next came Oramorph which really helped as it slowly enabled me to relax my legs a bit. The blankets made very little difference initially, it was more than an hour before the shivering calmed down and I started to warm up. More cups of tea appeared, and he didn't stop watching over me. Eventually I managed to get back to sleep and as I write this now I feel a million times better than I did then. Still awful but at least it is now the usual 'payback' that comes with doing anything. It's never pretty, but this was something else completely. My crime? Archery coaching.....

Right, back to the photo. Bella can't cope at all when I am particularly bad and either runs away or refuses to leave me. In this case it was the latter. Despite it making everything worse she refused to leave me. We'd get her to jump off but then immediately she would jump back up. Eventually Eric managed to get her to lie on the bed next to me. As soon as I woke up she was back up on my lap. As ever, I wonder what I'd do without her. Similarly, Kai was determined to look after me as well. I couldn't see what he was doing because I had sunglasses on with the fabric case over the top to block out the light. How he ended up there I have no idea.  Eric lifted him off so he did the next best thing and sat on the box I have next to my chair, pawing at me to stroke him. Aren't dogs brilliant? They bring such comfort and support.

I truly hope I don't have to go through that again. It was frightening to be in that state, which has to be one of the worst episodes I've had after doing something. Perhaps it was because of the virus I've had all week, I wasn't over it as much as I thought. I will never know I suppose. It is worrying that the payback seems to have been ramped up a level recently, but I have to keep doing the things I enjoy (archery and going to speedway) regardless. The alternative is a life sat in my chair doing nothing. CRPS got the better of me this morning, but the fight goes on......