Peering into the abyss...

Our worst fears have been realised.... it is CRPS causing the ongoing problems with my arm.

The most recent photo of my arm

I went to see the Physio again on Monday, armed with my pain diary and several photos we had taken during the time since the massive flare caused by the exercises/massage and the appointment.

The photos had been a huge shock to me, because I can't actually see the side of my arm, so had no idea just how bad it was. The symptoms of CRPS were clear to see. Swelling, colour and temperature changes plus a shiny sheen to the skin. Add this to the throbbing pains despite 50mg of morphine flowing round my body 24/7 and it was pretty damning. The Physio confirmed it, saying there was no way the symptoms could be explained by an injury. Especially as this has been going on since March if not earlier. Where we thought he'd found something wrong, the reaction to the treatment was over the top in the extreme.

He is going to write to my Pain Consultant urgently to refer me and hopefully they will get me in quickly. Not holding my breath though after being told I'd have to be referred as a new patient when I contacted the Pain Clinic direct (see previous blog post). I can only hope that I bypass the new patient pre-assessment for which there is a huge waiting time by virtue of the fact that the Physio has already examined, tried to treat and diagnosed CRPS in my arm. I do have the certainty of seeing my Pain Consultant in September/October as I see him every six months. Even this means yet more waiting, time which I can little afford to lose. If you stand any chance of getting CRPS into remission it needs aggressive treatment within the first three months of it starting. Anything after that and you are starting to fight a losing battle. Which is why my legs are as bad as they are. I was nearly six months before we got a diagnosis and it had already moved into the other leg and up to the knees in both.

Of course the difference this time around is that I know my enemy intimately. I am already taking appropriate medication for CRPS because of my legs. OK, they don't do a lot but any help is better than nothing. The critical thing in fighting CRPS though, is to keep the mobility, the range of movement and the use of the affected area. So much of the time before my legs were diagnosed was wasted, I was told to rest as they didn't know what was going on. Totally the wrong thing to do, as I now know to my cost. Every moment of rest let CRPS get a little worse, increasing the pain which in turn made it ever harder to do anything with my legs. I can't push through the pain at all, it is just too bad. Being realistic, the CRPS was so aggressive in my legs I doubt we could have kept it at bay, restricted it to one leg or stopped it moving upwards. But there would have been a chance, however small.

Which brings me back to my arm. Ever since the x-rays came back clear in late April/early May I worked really hard and got back the full range of movement in the shoulder and upper arm. Purely and simply by doing things with the arm regardless of how much it hurt. Pushing through the pain, refusing to let it stop me. Of course the pain never went away, it was and is always there in varying degrees but when I first saw the Physio he was extremely impressed with the 'superb range of movement' I had.

With the benefit of hindsight, trying to treat a problem with the deltoid tendon was the worse possible thing we could have done. After a few days I couldn't do anything at all with the arm, it was horrendous. It felt like I'd lost all the strength. I couldn't stretch it out sideways, forwards, lift it up or anything. The pain was completely off the scale, Oramorph didn't help, I could do absolutely nothing for myself. It was like a massive CRPS flare, which, looking back, is of course what it was. The exercises were stopped and I was told to completely rest it. No archery, no moving the arm above shoulder level. For the next day I could do nothing else but rest it and it settled a little. Me being me, over the next couple of days I had to gently try and move it a little bit. And then a bit more. I started to get the strength back (which of course I'd never lost, I just couldn't use it because it hurt too much), could lift my iPad up for example which is on the table next to me and it was a bit better when Eric helped me out of my chair (I push up whilst he pulls).

Of course I had to do some archery, if only to see whether I could still do it. So a week after stopping the exercises I shot two dozen arrows. Completely pain free! It was a wonderful feeling and seemed to improve the arm if anything. Meanwhile resting it just increased the swelling, the colouring and of course the pain in the arm. Should I do as the Physio advised and continue to rest it completely or do what I felt I should do, namely keep it moving? Of course I did what felt best and so worked on pushing through the pain as I had before. Which is where I am now as I write this. The arm still constantly throbs, becomes worse when it's moved and recently hurts more when exposed to airflow (not very helpful when you have a fan on because it's so hot).

The reality of having CRPS in a third limb has sunk in a bit and I'd be lying if I said I didn't feel a bit fearful of what the future will bring. What if it continues to get worse or moves down the arm? Moves to the other arm? Life is of course going to be harder because I can't support myself as I could, I am ever more dependent on Eric. I am more restricted in what I can do, for example gardening. I used to do loads of stuff in the raised beds, will I still be able to carry on doing that? I worry even more about my weight because I am less active than I was and can't see a way of doing anything about it. Using the Wii to play tennis is out, too much for the arm. I can't believe my luck that archery seems to be the perfect activity but how long will that last? Will archery become impossible at some point? When I eventually get to the pain clinic will they be able to do anything with the arm (nerve blocks etc) bearing in mind everything failed miserably on my legs?

I could go on, but what's the point? It doesn't make my situation any different, so it's a waste of energy. The future will bring what it will. No, I have to concentrate on what I can do now, the positives. Continue to push through the pain, fight to keep the function I have in the arm, the range of movement. It will no doubt flare just like my legs do, but since when has that ever stopped me?  I will do everything I possibly can to keep the CRPS at bay. Continuing archery is a given. Of course!
Come on CRPS, do your damnedest!!!

You cannot be serious!!!

So angry, so frustrated, so dejected. Those are a few of the emotions I'm feeling right now.

I had emailed the Pain Clinic again after their less than helpful response on Monday. They phoned me again. It is with disbelief that I heard her say that my arm is a new condition so they cannot get involved. Indeed, 'they would be doing me a disservice if they gave advice about my arm'. So if I want the Pain Clinic to provide advice etc I have to go to my GP and ask for a NEW referral to the Pain Clinic. She even said 'IF your GP thinks it's appropriate'. The final body blow is that I would have the many months wait (as a new patient don't forget) to even get to the pre-assessment clinic. I enquired what happens then. 'Oh, then Dr Naylor would take over the care of your legs and the arm together'. What the f**k? Sorry I never swear but REALLY?

I queried the fact that surely as CRPS was suspected (as the Physio does) then it would be a good idea to treat it early? Surely the level of morphine (50mg) plus Oramorph (+10mg as needed) I take isn't normal for a sports injury? Plus it is of course the same condition, CRPS. Apparently not. To all three...

Physio rang as promised. I talked through how the arm has improved. He was pleased that I was in less pain and has told me to rest it completely until I see him on 15/7. This includes no archery and I am not allowed to raise the arm above shoulder height. How on earth is that supposed to work when I rely on my arms to support me? Or to hold onto Eric to pull me out of the car etc? No stairs, not bath (if I could get there)....an even poorer quality of life than ever. 

I feel stuck between a rock and a hard place. A further two weeks to wait to go back to the Physio. See what he says, and try more exercises presumably that may or may not cause a flare. It is obvious that intervention causes a drastic decline in mobility and exponential increase in pain. When/if can I say no at some point?

Obviously I'd much prefer it to get better, but I've had CRPS long enough to know the signs. Anyway having exhausted the Physio I land back at the GP with a what do we do now? Perhaps a god knows how long wait to have an MRI scan? And finally, after everything has been exhausted we come to last in the list, being referred to the Pain Clinic. As a new patient of course.

I frankly don't care about the pain as long as I can continue to do archery. I live with pain, more doesn't really make much difference to be honest. The exercises really screwed up my arm although it is improving well and I am deeply concerned that as time goes on the chances of me being able to continue with archery become slimmer. It terrifies me in fact. Anybody who treats CRPS will know you have to treat it really aggressively in the first three months. I have been pushing through the pain, improving the range of movement myself (which the Physio himself said was superb) . It's been working and now I've 

been pushed backwards. 

Do I rest it completely? Do I keep it moving? If I don't it worsens, and it will be harder to get that back. Eric has already pointed out that archery doesn't involve raising my arm above my shoulder, bless him.

I suspect that I will do archery at some point, if only to reassure myself that I still can. It always loosens e ery thing up anyway. The fight in me tells me to do it my way. 

What's that saying? Something along the lines of, if adapted to fit the situation, 'to beat CRPS, you must become CRPS'. I already have it, who better to keep it at bay, or at least in it's place!! Ah, not all negative then.....

Please let there be something wrong!!

This coming Tuesday (25/6/13) is rapidly becoming judgement day. That's how it feels anyway. My right arm has been causing me 'grief'' since March or even earlier. I have mentioned it before in my blogs and on Facebook. Was it archery that caused the problem? Probably, even though bizarrely, actually doing archery never hurts in the slightest. It started with pain in the top of my shoulder and upper arm when I moved it, and led on to reduced movement in my both my shoulder and upper arm. The back of my arm above the elbow was also painful to touch or lean on. It wasn't unbearable pain, but it would 'catch' when I moved it, especially if trying to pick something up from the table next to my chair. There were brief periods when even the slightest movement of the arm was impossible because it was so painful. These were short lived and seemed to right themselves so we wondered whether a trapped nerve was the problem. On the whole though the morphine I take masked the pain reasonably well. That said it was baffling how my arm could be so painful when I constantly have 50-60mg of Morphine onboard constantly, anti-inflammatories and everything else I take for CRPS. What on earth was going on?

Of course life became much harder. I found it really hard to press down or pull with that arm. A problem when you need your arms to support you at all times. Getting up the stairs which is completely reliant on my arms pulling me became nigh on impossible. Essentially anything that needed me to push or pull with my right arm became much harder and hurt in varying degrees. Supporting myself was restricted to my left arm, my mobility compromised even more. Eric has been amazing as always, providing even more help than ever, doing even more for me.

We were starting to worry that there was something seriously wrong with the arm. Stress fracture? Frozen shoulder? I went to see my GP, who decided to send me for x-rays. Two weeks later (yes really!!!) the appointment to have the x-rays arrived, and seven separate x-rays later we headed home. When the results came back there was  nothing wrong so my GP said he would arrange for physiotherapy. The 'you can now phone us for an appointment' letter took weeks to come and the first appointment they had was over a month away. Utterly useless but what could I do? Forced to wait I had to get on with having one decent limb. I started to use the arm a bit more despite the pain, safe in the knowledge that there wasn't anything seriously wrong. 

Archery actually seemed to loosen everything up a bit so I have continued shooting throughout. Unfortunately my draw began to get worse and worse. I couldn't get myself into a good position, properly lined up etc so my accuracy and consistency plummeted. Sometimes I couldn't even get the arrow on the target let alone in the gold!! Not good at all. I simply couldn't cope with the bow as it was, my injured arm was clearly struggling with the weight of it or the poundage I was pulling. So I took action. Out went the twin rods and v bar on my bow, together with the 28lb limbs. The latter were replaced by 26lb limbs and I now have a very short long rod (just 19" compared to 28" I was using) courtesy of Iris and Tom.

Two 10s and a 9 - I can still do it!

The bow immediately became so much easier to deal with, I could now get myself into a better position but my accuracy only improved slightly and then went downhill again. I was missing the target again. I had obviously been compensating for the limited movement/strength in my right arm because everything was going miles left. My wonderful coaches Tom and Iris diagnosed the problem within the space of 4-5 arrows (my left shoulder was too high). I've worked on finding a method to keep the left shoulder down with the longer term aim being that I can shoot completely free of pain regardless of how many arrows I shoot and with further stabilisation on the bow. It seems to be working well judging by these arrows that I shot earlier today....

So where does Judgement Day come in?
Well, in the last couple of weeks, my upper arm (below the shoulder) has started to throb with pain, gradually getting worse and worse. Doesn't matter if I move it or keep it absolutely still the throbbing continues. It is very swollen, and the skin has taken on a purple, mottled appearance. It is often colder than the other arm and moving it is impossible due to the pain on occasions. Added to the never-ending pain and the other nonsense in my legs I have been sweating uncontrollably, been constantly exhausted and incapable of doing anything. I have had to take Oramorph as much for the arm as my legs which together with all the other symptoms is extremely worrying.
Why? Because those are some of the things that happen in my legs. Which means there is a realistic chance that although the injury has healed (I now have full range of movement again), CRPS has moved or at the very least developed in my arm. This has enormous implications that I really don't want to consider too much right now. Needless to say the thought of being as I am now (with only one decent limb) permanently is pretty grim. I will carry on fighting as always but the battle would be all the harder.

So, strange as it seems we really want the Physiotherapist to find something wrong with my arm on Tuesday. Because if he does this means it can't be CRPS. We can get it better and then it is just my CRPS riddled legs to contend with. Life can get back to normal. Well as normal as it gets for me anyway......

The threat of losing something

You don't realise how important something is until it is nearly taken away from you. Similarly it is hard to understand how something that was so integral to your well being has suddenly become less important to the point that you could see yourself not doing it again and not being bothered about that. I am of course talking about archery and going to speedway. The former I found again last August/September after a break of 6 years (and had only taken it up after I got CRPS in 2005). It has been well documented in my blog posts about speedway being my 'line in the sand', my ultimate sticking two fingers up at CRPS. I will go whatever you do to me during and after. So bring it on! Equally I've written about the pleasure archery gives me, the challenge, the doing rather than watching. Being coached by the wonderful Tom and Iris, who are the nicest people you could hope to meet and have been so supportive and taught me so much. Archery became a new 'line in the sand' to join speedway.

So what's changed?

Well, let me take archery first. Saturday was a huge day for me. Since early March, if not earlier I have been having trouble with my right shoulder and arm. At it's worst I couldn't move the arm at all, the pain was so utterly excrutiating. My range of movement has been restricted and putting any weight on it causes varying amounts of pain depending on whether I've rested it or not. This despite the fact that amongst other things there are 50-60mg of Morphine flowing round my system constantly. I couldn't pull my bow, couldn't cope with the weight of it, so I was forced to revert backwards, replacing the 28lb limbs I've been using since October to my old 24lb ones and removed all stabilisation apart from the long rod. This made life much easier initially, but I was soon overdrawing and still couldn't get myself in a good shooting position because of the stiffness and lack of full movement. Perhaps bizarrely shooting doesn't actually hurt so I have been able to carry on. Albeit getting gradually worse and worse. I've had x-rays which prove there no stress fractures or other orthopaedic issues. My GP has organised Physiotherapy which unbelievably isn't going to start until June 25th. My archery 'form' had deteriorated to the point where I had no idea what I was doing, arrows were missing the target, not a single onegetting near the gold. That is not enjoyable. It's not only frustrating it brings me down mentally.  I have had such incredible feelings of anger inside which I couldn't explain. 

Spare a thought for what life is like for me at the moment, being reduced to one good limb. With a duff arm, getting about is harder, I can't do any exercise on the Wii because it hurts and I get a bad reaction afterwards. So I worry even more than normal about my weight. I am even more a prisoner to CRPS than ever. My legs are consistently worse than normal because I cannot support myself to the same extent. They have been flaring badly. Sitting watching TV, reading, doing sudoku puzzles, playing a video game whilst Eric walks the dogs isn't exactly fulfilling at the best of times. Going out is a boost but is harder, so I've been even more housebound than ever. I have been watching loads of speedway from Poland, Sweden, Denmark and even Russia at any and every opportunity as always. No change there. However actually doing something physical, be it waving my arms around as I box, play table tennis or whatever on the Wii adds colour to my (drab gray) quality of life. Both mentally and physically. Archery (which would have to be a fluorescent yellow) has added so much joy and excitement to my life. It's something I can do whenever (depending on how my legs are), having a target down the garden or go over to the club's field to shoot longer distances. Archery gives me such a buzz, it's a challenge, fulfilling, good exercise and something you can never say you've mastered. No sooner have I finished shooting than I'm itching to shoot again. I can't get enough of it.

I hadn't realised how down I've become about my archery becoming such a disaster, with the realisation that there was a very real chance that I may have to give it up because physically my arm simply can't cope. Less than a year since I found it again. I stuck the 28lb limbs on eBay as I won't ever be able to pull them again, and ordered a set of 26lb ones which I hoped would allow me to draw comfortably, and get into the correct position to score well. The 24lb weren't ever going to be a long term solution so it felt make or break. Would I be able to shoot? Get into a good position? Cope with the poundage? Shoot with any degree of accuracy? To say I was nervous was an understatement. I was terrified. It was Eric who suggested I do archery on the Saturday which in itself is unusual. Eric was obviously nervous as well, he knows how much archery means, how vital it is for me. How much of a kick I get out of shooting 9s and 10s. If this session was as disastrous as the last, where would I go from there? 

It all sounds terribly dramatic, but you have to realise that for someone who can do so little for themselves finding something so fulfilling is like finding the Holy Grail. The thought of having that taken away is almost unbearable. Not so it seems with speedway. This season I have only been to one meeting out of the 5 or 6 there have been. Not so long ago I would have been to every one no matter how cold it was, how I felt before I went, what it did to me during the meeting and of course in the days that followed. I prided myself on mot missing meetings. I would spend days resting up before each meeting and sit out the payback days that followed. Now I can honestly say I'm not fussed if I go or not.  I follow the updates at home, and don't get that 'I wish I was there' feeling. My love of speedway remains as strong as ever. As I said I watch any live streamed or televised speedway I can. Love it. But I am completely non-plused by going to see the Lkaeside Hammers live. I was hoping that by writing this I might get my mojo back, but those feelings are simply not there any longer. 

Could it be that the 'doing' involved in archery makes it more fun, fulfilling and enjoyable than sitting in the freezing cold just watching speedway. Could it be that simple? On reflection I think it probably is. The racing over at Arena hasn't been terribly exciting in recent times. There isn't a lot of passing and the meetings tend to drag on for no particular reason. I was quite excited by the team that was announced but subsequent events which I won't go into have dented that enthusiasm. Perhaps watching the accident that subsequently killed Lee Richardson as it happened via streaming from Poland has contributed in some way? It certainly hasn't felt the same going there since. There are also so few meetings in a season now, which are spread out horribly, going for several weeks without a meeting, then three successive Fridays. I love being the European arm of @lakesidelive (the unofficial but endorsed live update service). Nothing else has changed, it's just the Hammers and going to their meetings. I could quite happily not go again, but we are going to the next one in early June to see if the sparkle, the buzz returns. I suspect that subconsciously at least I have come to realise that it simply isn't worth everything I go though to go anymore. Jury is most definitely out that's for sure. Something so vital has become an also ran. Who'd have thought it?

So, back to yesterday. My archery session....

After the first few tentative arrows, I got into a good rhythm and compared to recently had a really good session. I was able to get myself into a much better position immediately, wasn't overdrawing and I was getting arrows in the yellow part of the target again!!  Okay, there were still arrows that were terrible, but overall it was so much better. I was and remain ecstatic. I can still do it, with these limbs I can shoot comfortably and it will only get better as my shoulder/arm improve. I'm not going to lose archery! Gone is the anger, that down feeling that has been lingering for weeks. Can't wait to shoot again but CRPS has punished my severely. Party pooper!

Who knows, perhaps when I go to speedway next I'll feel the buzz again, catch the bug and get back to never wanting to miss a meeting. Doesn't really matter to be honest. I have my archery and that's what really matters to me. Here's to years of happy shooting to come....

Where do the chronically sick fit into the new Welfare State?

Blog time again. My topic? The much published welfare cuts. Something small eh?

Anyone who has read my blog regularly knows that I receive two benefits, namely Disability Living Allowance (DLA) and ESA, having recently been successfully migrated into the Support Group of ESA for Incapacity Benefit. For me the migration went incredibly smoothly, they took less than a month to make a decision, didn't call me for the dreaded WCA assessment with ATOS. I filled in the form, it must have gone very quickly to a decision maker and the rest as they say is history. Although it was a huge relief to be migrated so easily compared to so many others, I have to admit that it is a very sobering and upsetting realisation to have it acknowledged that I am so bad I was an automatic 'to support group'. Yes, I know I'm realistic about my situation, but the numbers of people who have got into the support group without a battle is small. Really small. And I was one of them.

I also get a paltry Teachers' Pension (on which I pay tax I hasten to add!). We don't get housing benefit, council tax or anything else. Eric gets no help from social services (we did get some money to pay for a cleaner when he broke his arm but that has stopped and didn't cover the cost anyway) despite the fact he cares for me 24/7 with no respite at all. His Carers' Allowance ended when he reached 65. Apparently you are no longer a Carer once you've retired. Of course for him nothing changed. His care for me is the same as ever.

Get to the point I hear you cry! Here goes....

I am getting more than a little sick and tired of being branded as someone who is 'a skiver', 'sees benefits as a lifestyle choice' or any of the numerous, derogatory phrases and arguments being banded around in the press and on the news. It seems that anyone on benefits is fair game, we are targetted by politicians, newspaper columnists, and numerous others. Too many to list here. Google welfare state, look at Twitter or FB, the evidence is all there to be seen. I, like every other genuinely chronically ill  person find myself being lumped in with everyone else simply because I can't work. I detest being disabled, I wish I could work. It'd be there like a shot!! It certainly isn't by choice that I live as I do!! To be blunt nobody would want to live as I do. I don't want to be dependent on benefits, I want to still be teaching, making a difference to children's lives. Not a burden on my husband, dependent on him for everything. All day, every day....

I can't dress, get up, leave the house without significant help. I can't access the kitchen, let alone cook. I live in a reclining chair with my legs up because this is the only way to make life 'easier'. I take so many powerful drugs I would be a health and safety risk. 50-60mg of Morphine are flowing round my system 24/7 and 14 plus other drugs which try to counteract the symptoms. There is no cure, I will be like this to my dying day. That's me being realistic. Something may come along that will help more but my CRPS is so entrenched that nothing will get rid of it. My Consultant has said as much. I challenge anyone to be able to concentrate for any length of time, hold down a job or simply have any quality of life living as I do. Yes I do archery and go to speedway but only because I'm a cantankerous, stubborn wotsit who doesn't care just how bad I will feel for days after. I know I shouldn't be trying to do these activities, they are way too much to cope with but I will continue one way or another. Until I really can't, which I fear inevitably will be the case.

So why am I and other genuinely chronically sick and disabled people constantly being lumped in with those who are able to go out to work but don't? Treated as second class citizens, unworthy of a place in society, let alone have a voice. 'Those who go out to work do the right thing, those who don't are doing the wrong thing' George Osborne recently said in a speech. So I'm doing the wrong thing? How insulting is that? But what recourse do I have? None. The British public agree with the changes to the welfare state we are constantly being told. 'Working people are sick of being worse off than those on benefits'. Does this mean everyone who gets benefits of one sort or another? Those on JSA? Housing Benefit? DLA?Who knows? About the only acknowledgement to those who really are too disabled to work is the rather throwaway 'we will help those with genuine need' or something similar. Can't remember the exact wording because it is always the other  comments that make the news etc.

Don't get me wrong, I want a system which encourages people to work and rewards those that do. As I've already said I would be working if it were at all possible. Please, catch the fraudulent claimants, those who screw over the system and should be working. Those who claim to be too ill to work when really they could. I don't want to be associated with them. But we are. It has also been well documented that large numbers of people have been declared fit for work or placed in the work related group when claiming ESA, only to have this overturned on appeal (approx 40%). The system isn't working but this is largely overlooked because the Government never publicises it. It instead constantly tells us what a burden those on benefits are as I discussed above. 

How on earth do you try and raise awareness about cuts that are having a devastating effect on disabled peoples' lives? For example, the bedroom tax. When you phrase it in the manner the Govt has it seems to be a no-brainer. I didn't actually know that housing benefit paid to those in private rented accommodation excluded spare bedrooms. So on the face of it that sounds fair enough. Do the same for council houses. But what happens if you have a Carer who regularly stays overnight because the the person can't be left? Or your partner and you can't sleep in the same bed because your illness or disability make it impossible? Or you have lots of medical equipment that needs to be stored somewhere as is the case with a lot of conditions. My electric wheelchair takes up loads of room. Oxygen tanks, monitoring equipment, the list goes on and on. Surely there is a case for those with 'genuine need' to be exempt from the bedroom tax? Apparently not, we are all lumped together. 

I do wonder sometimes if the politicians actually believe there are people 'with genuine need'. Those who are placed in the work related group of contribution based ESA get their benefit for a year. These are people who are believed to be able to get back to work with appropriate help. Unfortunately a significant number of people placed in this group simply won't be capable of achieving this. Once the year ends their benefit stops and, as if by magic, they are supposedly healed and now fit for work. No review, that's it. I'm not sure what they're supposed to do after that, disappear into the ether I suppose. 

I could provide so many more examples of how the welfare changes are not fair for those in society who cannot work because of illness or disability. The Govt would have us believe that their changes will make the system fairer and that it will 'always pay to work'. Spare a thought for those who will face serious hardship having no way of going out to work if their benefit were to be reduced or suddenly stop. If my benefits were stopped I could do absolutely nothing to bring income into the house. No matter how much I might want to, it would be impossible. Where would that leave us?

I shall end with this for you to ponder....

The underlying principle of the welfare state has always been that a caring society looks after those who cannot provide for themselves or acts as a safety net for those who have fallen on hard times. Does the new look welfare state really do that? What does this say about our society, is it really a caring one anymore?

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?

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!!