Get the balance right...

The title of a Depeche Mode song and very appropriate for the CRPS sufferer. Previously I've talked about the idea of spoons representing the amount of energy we have. Everything we do uses up some spoons and if we try to do something 'big' (not by normal standards) then we completely run out of spoons and grind to a halt. Here I tackle something I am bad at, seriously bad. Pacing..

It seems pretty obvious that my focus should be on doing anything and everything to minimise the pain, swelling, exhaustion and everything else that goes with having CRPS. This is where pacing comes in. Commonsense says that you should always try and do something for a time or at an intensity that doesn't produce too large a backlash in terms of punishment. Easy you'd think?

Well for someone like me, who never did anything by halves before I got CRPS, it is all but impossible. I was never happy unless I'd flogged myself to death in the gym, swum more lengths in the pool than the last time, bettered my lowest score on the golf course, won every match I played in whichever sport I was competing. You get the idea. I have long accepted that all of these things are now impossible, but it hit me this week that I still haven't and am probably incapable of ever accepting the severe limitations the condition forces onto me on a daily basis. Let me try and explain..

It is now six and a half years since I got CRPS and I can honestly say I still have no idea where the safety limits are, just how much or how long I can do things for before I get payback. This is in large part because I can now do so little of anything, however trivial, before my condition flares. It is however more to do with the fact that if I actually did a 'safe' amount it really wouldn't be worth bothering at all. If I say that just getting dressed and out to the car leaves me feel horrendous, and that is before we go anywhere, you get the idea what I mean. Similarly having a bath. Getting upstairs, having the bath, being dried, getting back downstairs leaves me struggling badly with increased pain and swelling. Have a bath every day? Not a hope. 

The bizarre thing is that it isn't just physical activity that makes me worse. I did absolutely nothing a couple of days ago except play a video game for a couple of hours, read a magazine, tweeted a bit. On waking from my afternoon nap I felt absolutely terrible, pain worse, feeling lousy in myself. My right foot also swelled alarmingly and was a severe purple colour.  How could what I did make me so bad? It is truly ridiculous, you couldn't make it up! This sums up my life. Imagine if your life involved you doing so little each and every day, yet still you felt worse and were punished constantly. This is how I am forced to live every single day. 

It perhaps seems more understandable why I kill mysef going to speedway. Since the season started it has been an uphill battle to recover from the effects of one meeting before the next one. The punishment has been brutal, long lasting and rendered me incapable of doing anything except sit and wait it out. Now that's fine because although it is something so extreme and madness to even attempt it, I do so because I love it and it is as I have said before 'my line in the sand', something I will continue to do despite what CRPS throws at me. 

I have tried to pace myself loads of times but in all honesty it doesn't work for me. I love doing 'exercise' on my Nintendo Wii. Now in the past I would have played for an hour or more and then spent the next couple of days paying for it. Instead I recently decided to try again to find a sensible amount that I could do without it having an adverse effect. Turns out that I can only manage 15 minutes at the most. Hardly seems worth the effort. Similarly I tried to limit the time I spent in the garden but again this meant I got very little done. I combined this limited time doing something with lots of rest in the hope of finding a more bearable pain level etc. Very quickly I found myself feeling bored, fed up and more worryingly down. It was affecting my outlook on life, bringing me down. You'd have thought I would feel better in myself, not worse?

Turns out I simply can't cope with being sensible and pacing myself properly. I don't mind suffering increased pain, swelling and everything else, no matter how bad, if I feel that what I did was worth it. Doing so little yet still feeling grim isn't for me. The way forward, and it isn't for everyone, is to do more of something than I should, regardless of what I do. At the end of the day I have to look after the mental as well as physical side of me. If that means I have to suffer more then so be it. 

Pacing? What pacing....

Pills, pills and more pills!

For the vast majority of people medication is something you take briefly when you're ill. You go to the Doctor, tell him/her your symptoms, you get a prescription, take the course and go back to normal. How would you feel if the tablets didn't work? Irritated perhaps? Chances are you'd go back to your GP, get a second course or something different. One way or another you get better and carry on as before. What if your symptoms don't go? Regardless of how many courses or how many different medications are tried. How would you feel then? What about if your symptoms get worse and worse, or flare up badly and there is nothing you can take to calm things down?

If you would, put yourself in my shoes. I take a cocktail of around fourteen different medications each day, and not one of them have, nor will ever make me better. CRPS is incurable, palliative care is all you get and isn't great as they simply don't know enough about it to have a tried and tested treatment plan. Approaches differ wildly from Consultant to Consultant and can become seriously invasive should you choose to go down that route. The sad fact however is that the best you can hope for is some relief from the various symptoms it throws at you. I can say that because mentally I have accepted my situation, the reality of living with a condition you wouldn't wish on your worst enemy. Accepted that sometimes it's better to stay with the status quo than increase the dose of something or continue to take something that isn't doing anything in the hope that it will. Or opting for a surgical approach with no guarantee of improvement and which may even make things worse. Quality of life is paramount for me.

That's not to say of course that if something new came along that they could reasonably guarantee would make a difference I wouldn't try it. Of course I would. Nor am I saying that I have lost all hope that something will improve my symptoms and hence make life more bearable. All I'm saying is that I no longer feel the desperation of 'right, that didn't work, what can we try next?'. Trying anything and everything regardless of the side-effects or additional trauma that may come with it. Or even make you worse than you were before. Desperation is too strong a word to use, but it is the inability to accept you have to live as best you can, there isn't a miracle cure around the corner.  Don't forget I am into my seventh year of living with CRPS, so the postcard, tee shirt etc. were purchased long ago. I know that I'm lucky to be mentally strong enough to take the pragmatic approach I do. There are so many who aren't and can't. 

The mainstay of 'treatment' for CRPS, like many other chronic conditions I assume, are drugs taken daily, often at several different times. In total I take 34 tablets each day. It's like a military operation to be honest. I have five separate alarms on my phone each reminding us that another batch of tablets is due. Then there is another lot to take just before bed. I get sick and tired of it, but it is the only way to ensure that the tablets are onboard doing what they should. Missing some by an hour or so causes extra pain etc, but with something like MST (slow release Morphine, stays in the system 24 hours a day) missing a tablet has huge repercussions. It is therefore absolutely vital that I'm never sick. It happened once and meant the MST wasn't absorbed. I couldn't take another one so had to carry on with a major part of my pain defence taken away. As the day went on I deteriorated to the point that I was unable to move even slightly, relax my legs or sleep. It took a good couple of days to get back to my normal pain levels. So yet another drug was added to stop nausea and vomiting in its tracks as and when I need it. Thank goodness it works a treat. This raises a wider issue, the need to take even more drugs to combat the problems caused by others. These include drugs to support the liver and stomach, drugs to help alleviate morphine induced constipation. It is a never ending treadmill that you simply can't get off.

So why so many, surely you just need painkillers? 

I wish!  A cocktail is quickly built up because there are so many different symptoms to try and combat. Remember CRPS is caused when the sympathetic nervous system goes wrong so the nerves fire pain signals which are false or the brain misinterprets normal signals as pain (the jury is out!). Also the affected areas are hypersensitive to the smallest stimulus producing pain totally out of proportion with what you'd expect. You also have to contend with cramping, burning pains, Stabbing pains, twitching, purpling (because the blood doesn't flow so well to the extremities - flight or fight efffect where the sympathetic nervous system responds by increasing blood flow to the major organs), horrendous swelling, depression, wildly differing temperature changes. The list goes on, but hopefully you see what I mean. It's not a simple job finding the right combination of drugs to give the best relief. Trial and error basically, with drugs coming from a bewildering array of other areas of medicine that seem totally unrelated to CRPS. 

There are generalisations in terms of the type of drugs prescribed to help with the symptoms of CRPS. I do not claim to have any medical knowledge but can only share my experiences of the types of drug I've tried, discussed or am currently taking. I do however have a working knowledge of how every drug I take works. Won't take it unless I know what it does. The cocktail of drugs Any CRPS sufferer takes more than likely includes some from some or all of the following families:

Painkillers (analgesics, opiates) - 

I went through the weaker analgesic drugs (aspirin etc) without any benefit at all. They do their best to block pain signals but didn't have a hope. Opiates (codeine, tramadol, morphine etc) unsurprisingly have been most effective for me, because they act to lower the intensity of  nerve transmissions between the spinal cord and the brain. Slow release Morphine (MST) has proved the best of the ones I've tried, without having unbearable side effects, topped up with either co-dydramol or co-codamol four times a day. The codeine in them metabolises to morphine so effectively giving a little boost every 6 hours. Or when the pain is particularly bad.

NSAIDs (non-steroidal anti-inflammatory drugs) - 

These help a little with the swelling and also are known to provide some pain relief as well.  They don't do much, but anything is better than nothing. I take Diclofenac because it is easier on the stomach when taken long term. I did try a course of water tablets which very quickly reduced the swelling. Unfortunately this increased both the hypersensitivity and the pain so they fell by the wayside.

Anticonvulsants

These two groups are normally used in the treatment of seizures but they have also proved effective in treating nerve pain. Pregablin and Gabapentin seem to be the most common ones prescribed for CRPS. Pregablin did a reasonable job of deadening the nerves for me, which in turn reduced the pain in it's various forms. Unfortunately it was causing damage to my liver so it had to go. One step forward, two steps back as they say. Gabapentin wasn't nearly as effective so we had to try something else. 

I now take Baclofen, used for MS, which is doing quite a good job. It is a muscle relaxer and antispastic drug which treats muscle spasms, pain and stiffness. It was a bit of a shot in the dark by my Pain Consultant and just goes to show how inventive they have to be. Where we go from here if they stop being as effective I have no idea. Such is the way with CRPS drug treatment. There aren't a stockpile of different drugs to try, you get to the end of the road surprisingly quickly and have to come to terms with the fact that you are going to have to live with the relief you can get. 

Benzodiazepines (Diazepam, Clonazepam, Lorazepam are examples)

These work by changing the way messages are sent to certain parts of the brain. The result is a calming effect on various functions of the brain, making brain cells less excitable. It is easy to see how this benefits the CRPS sufferer, being used to treat anxiety, sleeping disorders and the like. I take clonazepam which has certainly helped me in the evening and through the night with twitching, sleeping problems.

Tricyclic antidepressants 

These days not widely used as antidepressants because other drugs are more effective. A happy coincidence for the CRPS sufferer is that they have been shown to help with nerve pain. They work by regulating serotonin and noradrenaline in the brain. How this helps with pain I'm not sure, but it wouldn't seem a huge leap of faith to see that reducing depression would allow the body to cope more easily with the pain. I also find they increase the length of time I manage to sleep during the night. I take 100mg of Amitriptyline each evening at 9.30pm. To get 2-3 hours of unbroken sleep a couple of times a night between my bedtime (12pm - 1am) and the first drug alarm at 6am is heaven. It's the little things that make all the difference.

Antidepressants

Yet another family of drugs vital to many CRPS sufferers including myself. They work by increasing the levels of neurotransmitters in the brain such as serotonin. They also found to disrupt pain signals between the nerves and the brain. Providing a dual function of helping you cope with the trauma and hopelessness living with CRPS can cause together with more pain relief make these extremely useful. 

Circulation Aids (Clopidogrel, Nifedipine)

Both of the above help the circulation in different ways. Clopidogrel acts on platelets in the blood, effectively making them less sticky. The result is that the blood doesn't clot as easily and so it's flow rate improves. It is usually given to people who have either had strokes or are at risk of having one. This was the first medication they put me on when I was released from hospital and I've remained on it to this day. Nifedipine is a calcium channel blocker which relaxes the heart muscle and blood vessels and is usually given to people with high blood pressure or angina. It acts to improve blood flow to the extremities and was diagnosed by my GP because it helps with 'burning foot' syndrome. Neither of these medications are typical for CRPS, but bearing in mind that my right foot went ischemic when my CRPS started, it makes sense to take ongoing precautions to prevent it happening again. Although they cause me so much grief I would prefer to keep them.

... and finally the Support Team

it is an unfortunate side effect of taking powerful drugs, that you also end up taking extra medications to either eliminate or at least minimise problems they cause. Omeprazole supports the stomach, various medications combat morphine induced constipation (bisacodyl, lactulose or similar). I also take milk thistle as an ongoing supplement to support my liver as well as acai berry which is a good anti-oxidant. 

I had to start taking Serc on a permanent basis in the last six months. It contains betahistine and is typically used to relieve problems in the inner ear. Fluid in the inner ear gives the brain information about our position. Changes in pressure for example can cause nausea, dizziness and a sensation that the world is spinning. I suffer this constantly, no doubt in part due to the other drugs I take but also because I am not very active. Just something else to deal with.

The big problem with medication is that it's so hit and miss. A drug that provides some relief for one person will do absolutely nothing for someone else. A drug may work brilliantly but the side effects are so extreme that taking it becomes untenable. Upping the dose doesn't guarantee an improvement in dealing with the symptoms. Blindly increasing the dose of a medication to it's maximum, without taking account of how your body retracts to it seems nonsensical to me. Another golden rule is never increase, add or change more than one drug at a time. My Consultant is adamant about this and I agree. Any Science experiment will only have one variable factor. If you change more than one thing at a time you have no idea what is helping, making it worse, causing side effects etc. 

It does bother me when I hear that someone is actively working towards reaching the highest dose of a drug or drugs. Increasing the dose may actually make things worse. Remember earlier I mentioned quality of life? Let me give an example of what I mean by more isn't always better. Recently, as an attempt to combat the brutal effects of going to speedway were having on me, we opted to increase my MST from 40mg every 12 hours to 50mg. I was desperate to try and find a little extra relief, no matter how small. Over the course of the following week I battled through the increased side effects hoping that it would be worthwhile because the pain relief would improve. Sadly it made no difference to my pain but in myself I felt worse. There was no point in taking the higher dose, so I spent the next week battling through the withdrawal to get back to where I was before.

I suppose my underlying message throughout this post is that trying to minimise or relieve the symptoms of CRPS is a tricky business with no set pattern and wildly varying degrees of success. I will deal with other approaches such as Mirror therapy and spinal cord stimulators in my next post. That's another can of worms entirely....

So much harder than I could ever have thought

So has going to Speedway been as bad as I feared?

In my last post I talked about what I go through to enjoy my passion for Speedway. So far I have been to three speedway meetings. The last one was particularly frustrating as the weather that day had been the classic 'will it won't it be rained off'. We decided to go for it as reports from the track were that they hadn't had a huge amount of rain. Unfortunately we were at the track when they decided to cancel it because of the weather just thirty minutes before the start time. So although I saw nothing, I still had to suffer the 'payback'.

It has been so much harder than in previous years. The pain increases far more during the meeting to the point that it breaks through my enjoyment, as much as I try to ignore it. Which goes to show how bad it is, because I'm loving the speedway so much. Shout myself hoarse I do! I have always lightly rested my programme board on my knee. Was amazed to find that it is now too painful. I placed a fleecy blanket over the knee. Yep, still painful. It must sound crazy to anyone reading this. If it hadn't happened in both meetings I wouldn't believe it myself! 

By the time we get back to the car I can't move my legs at all. Getting me out of the wheelchair is torture. Putting my legs down hurts like hell. I then have to deal with the shooting, stabbing pains going through my feet as I place them on the ground. Getting out of the chair and into the car involves Eric pushing me up, whilst I push on the right arm of the chair and pull myself up with my left arm. It is a real struggle and excruciatingly painful. I spend the minimum amount of time standing, instead collapse onto the car seat. Eric has to lift the fleecy cosy and swing my legs into the car, whilst I use my arms to twist the rest of me around. No way I can do it myself. 

The journey home provides yet more torture. There is no optimum speed anymore, every speed sends waves of burning pain running up and down my legs, every bump escalating the pain further. I can't feel my legs, all there is is pain. It is very disconcerting not being able to tell where your legs and feet are. Hard to describe but the best analogy I can think of is walking a dog when it's foggy. You know he's not far away but for the life of you, it's impossible to place him. I sit there doing my best not to think about my legs, but fail miserably. A journey of about 20 minutes feels like a lifetime. All I want is get back to the comfort of my chair, get the shoes and socks off that my feet detest so much. I've gone so far beyond the point where I can cope.

For the first time ever Eric had to get a neighbour to come and help get me from the car into the house. Having swung my legs round, I was unable to put my feet on the ground at all without feeling as if there was a stake being hammered through them. It's a horrible place to be mentally. All you want to do is get inside but equally making yourself move even slightly is so hard. You're stuck between a rock and a hard place. Every tiny movement will be unbearable, but the longer you take the harder and more painful it becomes. Definitely a case of mind over matter. Between the two of them they got me to my feet and we shuffled incredibly slowly towards the first of the half steps that lead into the house. Hands safely on the bars, Eric lifts my left leg onto the step. I pull myself up. One down two to go. Still being supported I shuffle forward to the next step. Again Eric lifts my leg onto the step. I pull myself up but the toe of my right shoe gets caught on the edge of the step. I'm stuck, can't do anything about it. Hannah, knowing no better grabs my foot and puts it onto the step. The pain, oh God, the pain! Just as well the bars were there supporting me because I just slumped sideways onto the right handrail, screaming in agony. To be honest the rest is a blur. 

Finally I am back in my chair, with a hot cup of tea and Bella lying across my lap, licking me. I am always guaranteed a wonderful welcome by all the dogs but Bella and I share a very special bond. She spends the vast majority of her time lying across my lap and is a huge comfort. She has an uncanny way of missing my legs when she jumps on and off or when she's on my lap. Whenever I've been out she spends ages licking me, wagging her tail. Hates it when I go out, regardless of the fact that it's a rare occurrence. Looks thoroughly miserable, bless her. Life is all the better having her in my life. Especially when I'm feeling at my worst.

Over the course of the next few days I sit in my chair slowly coming back to life with pain levels gradually reducing to their 'normal' levels. The first morning is awful. I wake up and everything hurts, well that's how it feels. Sea of pain where my legs should be. Eyes bloodshot and very painful, vision blurred. First tablets at 6am and then it's a case of sitting there in the hope that I improve. No chance! The weekend is lost to sleep and when I'm not sleeping I can do nothing but sit and fester. Can't even read to try and take my mind off the pain. Only time I get up is to use the commode. The amount of heat that pumps off my legs is astonishing, or bizarrely they may be freezing cold. One thing is for sure, CRPS throws everything it can at me, punishment for daring to go out and watch the sport I love. It is normally Tuesday when my pain levels return to anything like their normal levels. And then of course the process of preparing for the next one begins. Wednesday provides the only window of opportunity to go out, escape the prison cell that is my chair in the living room.

As there were three meetings on the trot (including the abortive one) it became increasingly difficult to recover to the point that I simply didn't manage it at all. Every day as bad as the one before. No going out, no tiny bits of exercise. Life has just been about trying to be in the best condition to go to speedway again. My CRPS has flared to the extreme. It is only now some two and a half weeks after the last meeting that it is settling. I would have written this blog post weeks ago but it was absolutely impossible. I did try to increase my slow relief morphine from 40mg to 50mg in the hope it would help. As it made little, if any difference to my pain levels I am reverting back. Senseless to take something with the extra side-effects if it isn't helping.

As I sit finishing this post, it is Tuesday. There is a speedway meeting this Friday, followed by two others in succession. I know what to expect now, but it won't stop me. My determination to go to each meeting remains as solid as ever. CRPS will just have to do it's worst. 

I must be totally bonkers?

Well in just less than a week I will be going to my first Lakeside Hammers speedway meeting of the season. It will be the start of my seventh season, and I am proud to say that I have missed no more than half a dozen meetings in all that time. Speedway is my 'line in the sand', the one thing I refuse to let CRPS stop me doing, despite the inevitable cost that comes with it.

My view of the track, before it gets busy!

It has become increasingly difficult year on year, yet still I refuse to give in. I can't wait to get to that first meeting and all the others. I absolutely love speedway, be it the excitement and adrenaline rush that comes with watching four riders going hell for leather around the track (with no brakes), the smell (other speedway fans will know exactly what I mean!), the roar of the bikes, the highs and lows as your riders pass others or are passed themselves. Each race lasts less than 60 seconds, yet so much can happen. There is also the banter with friends, predicting the outcome of each race, cheering the riders on.
I do however have to admit that a large part of me is also dreading it.

It's difficult to put into words just how bad I feel, and how exponential the increase in pain and swelling are both during and after a meeting. It takes me at least 3-4 days of complete rest to even vaguely get back to my 'normal' pain and swelling levels. If there is a meeting the following week I then spend the remaining days desperately trying to get myself in the best shape I can for the upcoming meeting. If there are further consecutive meetings the effects are compounded, I have no chance to recover, let alone prepare myself for the next meeting. It's a downward spiral. Last season, there were meetings throughout August for example. By the time I'd gone to the last one, I was well and truly destroyed. It took a good couple of weeks to get back to anything like my normal CRPS levels. By anyone's standards it's utter madness, but still I put myself through it. Like everything else we do what we can to keep me as comfortable as possible in a vain attempt to minimise the damage.

First there is preparing for the meeting. Hammers' meetings are on a Friday, so from Wednesday morning I do nothing that will take anything out of me. Any thoughts of going in the garden, having a bath, doing my 15 minutes of exercise on the Wii or any other trivial activities by normal standards. I only get out of my chair to sit on the commode. I am even more limited than normal, only allowed to read, watch TV and do puzzles. Oh and my normal session playing a video game whilst Eric walks the dogs first thing. It is incredibly boring but a necessary evil. Thoroughly enforced by Eric, who as always does his best to save me from myself.

All set for the action!

On the day of the meeting I try and sleep as much as CRPS will let me, do even less if it's possible and wait impatiently for the evening to come. Unfortunately everything involved in getting ready to go out is an ordeal. The nightmare that is getting dressed, with Eric doing his best not to catch my feet as he puts my socks on etc. I always become really naggy because I really can't cope with it. Then there is the painful and very slow shuffle to get me out to the car. I now wear my fleecy leg cosy in the car as it helps to minimise the effects of the vibrations from the road. By the time I'm in the car I'm exhausted, naggy and in lots of pain. That's before we start the engine! Usual battle to find the best speed for my legs as we drive the 15 miles or so to Arena. I feel for poor Eric who has to drive at exactly a particular speed which reduces the pain. The speed is never constant, it varies from day to day and even from one road surface to another. He just gets us home as soon as possible after the meeting as no speed will be better, they are all murder. Of course my pain intensity and type has steadily got worse as I have to sit with my legs down in the car.

Once at Arena, mission 'get Jane settled' begins. Eric gets my electric wheelchair organised, pulls me up out of the car and into the chair. Legs up and off we go. Anyone who has been to Arena Essex would agree that the facilities aren't great. It's essentially a banked area surrounding the track. No seating, people either stand or bring their own chair. To get to my viewing position I have to trundle over a sandy, bumpy area under the stand. I used to get dragged backwards by Eric as it was the only way to get me across. Now I can toddle on my own, but it's still a bit of a rollercoaster ride. Once at my usual spot, metal posts go in the ground, to support my legs and prevent me rolling off down the hill. I then manoeuvre onto bits of paving slabs and that's me in position for the rest of the evening. For obvious reasons, I can't move during the meeting, go to the toilet etc. We also have to ask people if they would move over slightly because I can't see through them. Eric, who hates speedway, sits next to me and reads a book throughout the meeting. He is oblivious to everything going on around him.

Can you see me? Go up vertically from the red helmet.

As far as is possible I am in the most comfortable position. Even so, my legs worsen as the night goes on, I'm wearing shoes etc which my legs hate. It's invariably chilly, a nightmare for the CRPS sufferer. My wheelchair is nowhere near as supportive as my chair at home. To a large extent I can 'ignore' the pain because I'm so engrossed by the meeting. Well for some of the time anyway. It is at the end of the meeting when my punishment truly begins. I can't describe the pain involved in putting my legs down, getting me up and back into the car. I do my best not to cry out, but you just can't help yourself. The journey home is horrific, every bump inducing even more pain, every time Eric brakes makes me feel worse. All I can feel is pain, not a chance of keeping my mind off it now. I honestly don't know how Eric gets me back in the house. I can't put any weight on my right foot, it feels as if it has been staked to the ground. My left isn't much better and my knees are unbearable. Every shuffle makes it worse. By now I am so worse for wear that all I want is to get back into the comfort of my chair, get the clothes that are torturing me off, and try to sleep to escape it all. No matter how wrecked I feel, I don't regret putting myself through it because I got to watch the sport I love. Oh and putting two fingers up to CRPS as well is always a bonus!

Sleep is usually in fits and starts, broken because of the pain. On waking in the morning I feel as if I've been hit by a bus. Can't function at all, just sit in a bubble of pain and exhaustion. First lot of tablets on board, barely notice a difference. The recovery begins. I am completely unable to do anything other than sit and fester. Eric has a devil of a job getting me up to sit on the commode. If I'm lucky my eyes will only be very bloodshot and feel as if there is something stuck through them. At worst I can't move my head for the pain, have to wear sunglasses because they can't tolerate light. Heat pumps out of me in waves, that's one of the downsides of pain. It goes without saying that my legs are totally off the scale. Often I can't actually tell where they are, there is just a fog of pain. Can't do anything other than sit and try to watch TV. Over the course of the next few days I gradually improve, albeit really slowly. Hopefully in time for me to do something like go in the garden, go shopping before the next meeting. The reality is that during the season my life revolves around each meeting. Literally.

So, having read the above, am I bonkers? Probably, but will it stop me? What do you think?

When you think it can't get any worse....

Today we had the Budget. This Government claims that we're all in this together. I'm sorry but it really doesn't feel like it from where I'm sitting. My last blog post dealt with the Welfare Reform Act, and how genuinely chronically ill and disabled people are being assessed as fit for work when anyone other than ATOS and the DWP can see that it's completely impossible. Today another friend of mine had to attend an interview with the now infamous a4e. She was placed in WRAG and they have been constantly contacting her, demanding what she was doing about getting interviews, doing voluntary work. She is taking her case to tribunal, but the wheels still grind regardless. All under the constant threat of sanctions of course. She has enough to deal with just trying to live with CRPS, plus depression, migraines and anxiety without the additional stress and worry brought about by jumping through the various hoops the DWP have set in place.

As soon as they could see her, talked to her and discuss her medical problems, her interviewer was very sympathetic and made it clear that she shouldn't have been sent and should therefore appeal against being put forward for courses. Commonsense prevails you'd think. Alas no, because my friend's response was 'what is the point when it's mandatory? '. The Job Centre Advisor didn't want to send her but had to because of the rules. So instead of leaving her CV so she could presumably be placed on appropriate courses, she left the medical reports from her GP, Pain Consultant etc.

What's so frightening about all this is that you no longer seem to be treated as a human being. At best you're a scrounger, at worst you are an inconvenience to society, the taxpayer. Someone to be pushed through a system, with the ultimate goal of saving money. Reducing the numbers and hence the amout paid out.

They've already decided that some £18bn too much is being paid for Welfare. Today George Osbourne announced that another £10bn needs to be saved. It was terrifying enough before facing transition fom IB to ESA and DLA to PIP. How can you possibly believe that you will be assessed based on your medical problems and disability when the system they've set up is geared to reducing the numbers claiming and ultimately saving enormous amounts of money? Ironically the same Budget passed on tax savings in the region of £40,000 to millionaires. Oh and froze the tax allowance of people 65 and over so that they will lose money. Funny way of all being in it together?

Sure there are scroungers out there, and they need to be dealt with, got back into work. But what about people like me, who can never hope to do any sort of work ever again. People dependent on that money, and have paid NI contributions under the assumption that when we fall on hard times the State will look after us. If, and God forbid it happens, 'they' decide that I am fit for work, I simply have no idea what we will do. I have no way of replacing the money I would lose. No way of paying for anything, the house, food, fuel and everything else.

I didn't ask to become disabled, nobody does. What sort of society treats people like this?

Frightening times ahead...

Before I go on, let me make it clear that I am not left wing, right wing, or anything in between when it comes to politics. Like most people I read about what's going on, take a mild interest in the laws that are being passed. I always listen to the Budget to see how it affects us. Of course we all have opinions on whether a particular law is good or bad, but as a general rule, it doesn't have a life changing affect on your life. You get on with life as normal. The Welfare Reform Bill currently being forced through (now passed into law) by the Coalition Government completely blows that philosophy out of the water. The more I read the more shocked, appalled and saddened I become. It beggars belief that in the 21st Century some of the most vulnerable members of society, disabled people like myself, are being branded scroungers, the lowest of the low with no place in normal society. They claim we are a drain on resources, like leeches, taking money from the tax payer for no reason other than we can't be bothered to work.

Prior to developing CRPS I had spent many years working full time, paying my taxes, NI and pension contributions. Not for a second did I think I would be struck down, my life turned upside down, changed forever. I never thought I would become disabled, well you don't do you? Never in a million years did I think I would be totally reliant on someone else for everything. I can't get up without help, can't get dressed without help, can't prepare food for myself, can't bathe without help. Can't walk without help, can't leave the house without help, can't get in and out of my wheelchair without help. I could go on but you get the idea. Every facet of my life is now dependent on someone (namely my husband Eric) helping me, accompanying me and/or doing it for me. There is no spontaneity in my life. Life consists of a constant battle against everything that CRPS throws at me. I hate being disabled, no, I detest being disabled with every fibre of my being. I don't want to be and would do anything not to be.

The Coalition Government would have you believe that I am, like every other unemployed person in this country, a scrounger. Too many people are claiming sickness benefits when really they aren't disabled/ill enough to warrant it. They show examples on TV, people who claim they are unable to walk yet manage to run marathons. People getting every benefit under the sun, receiving goodness knows how much. They talk about getting those who can work, back to work. They also talk about providing more for those who have genuine need. Don't get me wrong, I totally agree with the principle of weeding out those people who are playing the system, claiming money they aren't entitled to. In fact I have more of a vested interest than most, because these people give real disabled people like me a bad name. Unfortunately the main cruz of this reform seems to be more about cutting the cost of the welfare bill by however many billions.  Given that fraud for Disability Living Allowance is just 0.5% this surely means that they are going to refuse a large number of genuine claimants using their new criteria with all the fallout that will cause?

I am currently in receipt of Incapacity Benefit and Disability Living Allowance. Both of these have been re-branded as ESA and PIP respectively. I will at some point go through the process of being transferred to these new benefits. The criteria have changed, as have the way they are assessed.  As I said at the start the more I have read about the Welfare Refom Bill, the more concerned I have become. The adage 'scrounger until proven otherwise' seems to be the standard, whilst the process seems geared up to reject people, who are then faced with trying to appeal.

Incapacity benefit is just that, you either qualify for it or you don't. Simple. ESA has two levels, the 'support' group, which I guess is a direct swap for IB. Here you are declared unfit for work and get the higher level of money you can get. Incidentally it's less than you get on IB but that's to be expected. After all this is a money saving exercise. To get IB you had to get 15 points based on how well or not you could carry out various tasks. In other words I filled in a form, sent it off and waited for a decision. The first time round I had a medical as well. When it was due for reassessment I filled in another form, but wasn't called for a medical. I presume this was because the Doctor I saw said that he would state that I shouldn't be called back for a medical because it was inappropriate. Too much of an ordeal. I have looked at the criteria for ESA and I should comfortably get sufficient points to be placed in the Support Group. Nothing to worry about then, simple switchover? The reality seems to be very different, the more I read and talk to other disabled people on Twitter.

There is a second group of ESA, known as the WRAG. It stands for Work Related Activity Group or something like that. If you don't get enough points to go into the Support Group you get dumped into this one. There is also a cutoff below which you don't get ESA at all. In which case you are deemed to be immediately fit for work and have to sign on. The Govt would have you belief that the WRAG group is a really supportive initiative. They will help people who could work, if given sufficient support, back to work. A noble idea surely? Sadly not. Terminally ill people who have more than six months to live are placed in this group. People undergoing chemotherapy and other treatments for cancer are placed in this group. People with progressive and chronic conditions such as mine are put in this group. People with severe mental health problems are placed in this group. We are talking about large numbers of people, like me, who struggle to live, let alone work. Not scroungers, hypochondriacs, those who can't be bothered etc.

Let me give you an example. One of the good friends I have made on Twitter is currently seeing the full horror of this new Act. For obvious reasons I will not divulge personal or extensive details about her condition. Her case though shows everything that is wrong about the WRAG of ESA and the Welfare Reform Act in general. It also shows why there are terrifying times ahead for me and every other genuinely chronically disabled person. A combination of severe psoriasis and psoriatic arthritis (affecting 95% of her joints) has reduced her to being dependent on her husband for 24/7 care. Virtually housebound, her mobility, like mine is totally compromised so she relies on a wheelchair when walking is required. Her hands and feet are particularly badly affected. In other words living day to day is not only a huge challenge but a very painful one. She was working up until she became ill, is a Doctor of Psychology, and had paid all her contributions. ATOS, the new company brought in to carry out asessments for ESA and PIP stated on her report that her condition is progressive and she will never return to work. It would seem a no-brainer that she be put in the Support Group. But no, the DWP put her in WRAG. How can this happen? What happened to the 'we will provide more for those in genuine need' rhetoric? The mind boggles how they define genuine need if she doesn't qualify. She was also told not to bother appealing as it would make no difference.

To cap it all, she was contacted by the DWP a couple of days ago to be told that having been in the WRAG group for the maximum time allowed, her money will stop at the end of April. Miraculously cured and fit for work because the time limit has been reached, nothing to do with her health and completely ignoring the fact that she is now less able to work than she was when it was first awarded. What exactly is she supposed to do now? Reapply? Sign on for Jobseekers' Allowance? Or just do nothing and lose her only source of income? I could talk about PIP, the replacement for Disability Living Allowance but the same horror stories abound, with people being turned down when it is blatantly obvious that they should receive the benefit or at a higher level.  What civilised society treats people like this?

With me facing transfer onto both ESA and PIP at some point, do you now see why I find the future so terrifying?

The nightmare that is cold weather

Anyone who follows my blog will already know about the wildly different pain types I have to deal with, together with the hypersensitivity in my lower legs because of CRPS. Temperature wise my feet in particular literally have a mind of their own, swinging from freezing cold to boiling hot and anything in between. They can flip from one extreme to the other in seconds. Conversely they can remain stubbornly like ice cubes for a day or more. Or they are so hot I can't bear to have them covered, and have to resort to having wet towels draped over them in an attempt to make them a little more bearable. To give an idea of how hot, the towel will be warm within minutes, and have to be replaced several times before the pain becomes a little more bearable. Even so they remain horribly hot. Then of course there is the increased swelling, leaving me feeling as if the skin is too tight and could burst. They're like this normally, so imagine what they're like when the weather becomes as cold as it is now?

Normal people will add an extra layer to help them warm up. A thicker pair of socks perhaps, or a hot water bottle. It is unbelievably difficult for me to counter cold weather as my legs won't tolerate having socks on, let alone hot water bottles or the other usual ways of warming yourself up. They react badly enough when I go out (very infrequently) where I am forced to wear shoes and socks, and of course trousers.

Normal items of clothing for most but items of torture for me. We do our best to lessen the increase in pain, swelling and so on. It is nigh on impossible. I wear jogging type trousers with very wide legs. My socks come from Cosyfeet, a specialist shoe and sock outlet who supply extra large, extra soft and non-elastic socks. I used to get my shoes from them as well. They make far wider shoes which open wider and have Velcro fittings. Even these became unbearable so we had to search for an alternative. We finally found a very soft slipper, which opens completely so Eric can guide it onto my foot without it touching. As a bonus they have memory foam insoles, which help when I have my legs up in the wheelchair. I have one pair of trousers, one pair of slippers and two pairs of socks. That's it. No lavish wardrobe for me, I wear the same thing every time I leave the house. You find something that works  even slightly better and you cling onto to it for dear life. Mustn't forget the other vital piece of equipment, my blue fleecy leg covering, which cocoons my legs and provides an extra barrier to the elements.

Every minute I'm dressed CRPS reacts.. badly. My feet swell, the pain increases, the skin in contact with the clothes becomes itchy. No, not itchy, more like little needles digging into your leg and feet. I desperately want to scratch but of course I can't, want to get the clothes off, but of course I can't. I know that my legs will be going more and more purple, blotchy, sweaty and there is nothing I can do about it. The closer the contact the greater the effect. You want to get home, get these demonic pieces of clothing off, get back under the duvet in my chair. And this when the weather is good. Going out in the snow is a total no-no. Reading this back I wonder how on earth I go to speedway meetings? I must be mad, but it has become the line in the sand for me. CRPS will not take this last pleasure away from me. Well not as long as there is still fight in me.

The problems don't get easier at home. Here I wear nothing other than knickers on my lower body. The rest is cocooned in my duvet, better called a comfort blanket. It isn't perfect but it does provide the best solution we can manage. Any effect of adding clothing is grossly magnified, which is in itself odd? I can only think that the effect is accelerated because of the warmth of the duvet compared to what are really just thin clothes. Who knows? The upshot is that I have to 'sit and bear it', waiting for my feet to warm up, cool down. For the stabbing pains to lessen, the burning sensation to decrease a little. More often than not and especially when there is very cold weather outside my patience remains unrewarded as my legs continue to do what they want and never seem to give me a break.

As a final thought, when you complain about the snow, having to scrape the car windscreen, or being inconvenienced in other ways, spare as thought for those, like myself. We don't have the option to go out, being rendered completely housebound, at the mercy of the elements. I would give anytning to be able to come and go as I used to. Sadly for me that is never going to happen now or in the future.