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?