What's the point?

Is it the time of year? You feel more reflective than normal, looking at your life, taking stock? Comparing it to others? Probably, but for me, it also represents another year of living with CRPS. I generally pride myself on being positive, trying to make the most of the lot I have been dealt. Always seems to fall apart at Christmas, especially when friends come round.

Someone who also suffers from CRPS mentioned on Twitter that they hate this time of year because people they havn't seen for ages ask how they are and they found it easier to just say that they were fine. I can empathise with this as it happens to me, even with people I consider close friends. I have no idea what to say to be honest. How can you put in words what I go through, what my life is like, my pain and everything else? It sounds ridiculous to me and I'm the one suffering it! If I do try there tends to be a pregnant pause where they don't really know what to say, feel awkward or whatever. I can't blame them, would I be any more coherent were our position's reversed? I would like to hope so but who knows? Inevitably our chat rapidly turns to what they've been doing, their problems, how rubbish work is, the normal worries and troubles of life. It is so nice to hear about the 'normal' world, especially as mine is anything but. Sadly it also serves to remind me of all that I have lost. I support them as much as I can. Wonder if they realise how much support I need to get through the days, weeks and months?

I think people find it hard to take on board the fact that I'm no better now than I was the last time they saw or spoke to me. That I'm stuck like this for life and there is no cure. That I won't get better. I find it hard enough myself at times!!  Unless you lived with me, there is no way you could comprehend just how little I can do for myself, how much help I need to do anything. Without Eric's constant attendance, love and support I could not exist. Couldn't prepare food for myself, leave the house, do any housework, however trivial. Couldn't manage my personal hygiene, dress myself etc. I am trapped in a prison consisting of my electric chair and the living room. The only other rooms I access are the toilet and bathroom. Oh and the garden but that is in itself a military operation. I could order food online but then couldn't get to the front door to collect it, nor carry/unpack it anyway as my arms are busy trying to keep me upright by holding onto whatever is nearest. I can't do this for more than minutes anyway before the pain is too unbearable that I must sit before I fall over. How do you put that into words? That for me, going out to a shopping centre for a couple of hours is a major achievement which will take me days to recover from. Only somebody completely insane would put themselves through what I do to go to speedway. What does that make me then? Answers on a postcard... 

I know that people care about me but I feel I have to shield them from the degrading nature of much of my life. A couple of friends looked after me 24/7 for a couple of days when Eric had his broken arm operated on. My friends had to empty my commode, can you think of anything worse? It certainly gave them an insight. I did as little as possible as I was so embarrassed, mortified even that they had to deal with my daily needs. Didn't wash, just watched TV and chatted. Oh and of course slept because it was so tiring talking so much when normally I don't. They were wonderful, staying throughout the night to ensure I was ok. They did all they could to make me feel better. My upper body strength is significant now so I regularly pulled them over as the helped pull me up out of my chair. The whole thing was just awful, I didn't want my friends to see me like this. Would it have been easier with strangers? Don't know as we receive no carer support at all, apart from money to pay for 2 hours of cleaning a week. A godsend for Eric but frankly a drop in the ocean when he has to do everything.

So, to my fears, worries or whatever you might call them that seem to force themselves to the surface at this time of year. As always I shall just shoot from the hip. Let us start with my future existence. I am 41 in February, Eric is 65 in April. I'm sure I've said before that I always saw the future as me looking after my wonderful little man when the time came. The age gap has never bothered me, he is my soulmate, the man that I want to share my life with till death do us part. He is the only man that has ever had a place in my heart, my one and only boyfriend and subsequent husband. No-one could fill his shoes, they broke the mould when they made him. Looking into the future is strange. My life will effectively end when I lose him (assuming he goes first, no guarantee of that of course). I accepted long ago that I will end up in a home somewhere as there is no way that I could cope with even the most basic tasks of living. I can't even make it into the kitchen, let alone do something productive when I get there for example.

We have no children, and I have no family. My options therefore are somewhat limited to say the least. I either have to employ someone to be a full-time carer or be put in a home for people with similar needs as I have. Bizarrely, or perhaps not, my main concern is whether I could have a dog. Can't imagine life without one after all these years. I honestly don't care where I end up, won't be life without Eric anyway, so just somewhere to see out my days. I have thought about Dignitas, but how would I get there and for that matter who would take me? Eric wouldn't want that anyway, and I couldn't let him down. So the house will get sold and the money will pay for my care. Until it runs out and then who knows what happens next? A little worrying when you see the state lf some of these places but if that's your only option what can you do? What is certain is that my future will be a lonely and painful one where I have little say over what I do? Is it any wonder I generally bury such thougnts as deeply as I can?

I try not to think about the number of years ahead of me. 30 years, 40 years, who knows? Facing the same daily battle with my condition. Daring to defy CRPS, only for it to bite back even harder. Forcing myself to do things that I know I will pay for tomorrow or longer. That all too familiar 'hit by a bus' feeling you get for daring to do something that most would take for granted. The constant pain, exhaustion and sheer frustration of it all. People talk of 'flare ups'. I don't seem to get those, there are no better days. My CRPS is relentness, unforgiving and doesn't give an inch. That's why I try to remain positive. Tomorrow is going to be like today or worse, so feeling sorry for myself or feeling down isn't going to make a blind bit of difference. Get on with it and do what I can, that's my philosophy.

This time of year always makes me maudlin. New Year? Pah! Just means there's another one to get through, with everything that entails. It is incredibly frustrating to lose your independence so completely that you are totally reliant on one person to exist. Thank god for Eric, whose boots would be incredibly difficult to fill, nay impossible.

New Year's resolutions? Keep sticking two fingers up at CRPS, continue to keep all of the above out of my thoughts till this time next year and do all I can to ensure Eric's life is as happy and fulfilled as possible....

Not the best of Anniversarys

Six years ago yesterday (16th December) CRPS decided to knock on my door. It feels a lifetime ago, and in some ways it literally is, bearing in mind how completely different life is for me now. I generally hate this time of year because lets face it getting CRPS isn't really the sort of thing you celebrate is it?

Spare a thought when you're having a fantastic time this Christmas, for those people for whom it is the same as any other time. A time when you just try and get through each day before taking on the next. There are so many people out there worse off than every one of us. I, for one, hope everyone has as great a Christmas as they possibly can....

Oh no, not a cold!

Let's face it, having a cold is a miserable experience for anyone. The tiredness, the 'bunged up' feeling, being cold or hot, headache and so on. Spare a thought for the CRPS sufferer or anyone with a chronic condition for that, matter. Not only are you trying to cope with the pain and everything that you deal with on a daily basis, but you now have all that a cold throws at you on top.

This is what I've been struggling with for the last week and a half. Of course my medication helps to a certain extent. The codeine in the co-dydramol stops the runny nose, but you are left feeling thoroughly congested and foggy headed. I slept even more than normal, losing complete days in the process. I never sleep in the evening, so that hopefully I don't wake too many times in the night. That went out the window, so that I was awake when I should have gone to sleep!

Having a cold makes life completely impossible. I have been totally exhausted so we haven't even thought of going out. My balance was even worse than normal, making even standing up immeasurably harder. I felt utterly awful and of course couldn't keep my mind off the pain as well as normal. It pretty much wiped me out, so I could only manage to do puzzles, reading etc. for a few minutes before having to give up. Where I normally play a video game whilst Eric is out walking the dogs, I went to sleep with the controller in my hand, only waking when they came back. It is so hard to adopt the usual pain minimising strategies when you can't think straight. It's hard enough at the best of times!

I can't get rid of the damn thing either. Was feeling a lot better at the weekend so played tennis on the PS3 Move on Sunday. I had been itching to do something as it is so incredibly frustrating and boring just sitting in this chair all day, all night. Didn't play for long but realised it was a mistake almost immediately I'd finished. Felt as bad as ever and still do as I try and write this a couple of days on.

Of course my legs have misbehaved as much as ever, with my feet lurching from ice cube cold, to furnace hot seemingly at will. As long as all the usual stabbing, burning and any other types of pain you can think of. And the swelling, etc

This is the first time I've had a cold in as long as I can remember. I certainly don't want another anytime soon..

My four legged carer

I thought it was about time I wrote about Bella, my wonderful Border Collie. I have had a dog in my life since I was seven years old, but Bella is something else. We got her back in July 2004 as a pup, as a retirement present for Eric who managed to get early retirement and escape teaching. Of course that didn't pan out as we'd hoped with me getting CRPS a year and a half later. Six months later we went back to Wales to get another Border Collie puppy, Kayla. She was to become completely bonded to Eric whilst Bella became totally and utterly bonded to me.

We played rough and tumble, fetch, went on walks. Did all the things you do with a puppy, training etc etc. Then everything changed for her. Firstly I was in hospital for several days, which she didn't react well to. Then when I was back at home I was different. Gone was the mistress she knew, that took her for walks, played with her in our active and boisterous way. Instead mistress was confined to the sofa, and later a reclining chair, couldn't move much and was just different.

Bella, avoiding my legs as is the norm

From that moment on, she has adapted to my situation and as near as damn it, become my four legged carer. She is never far from me, indeed the vast majority of the time she lies across my lap in my reclining chair. She is incredibly protective, has a canny knack for not touching my legs either when she is lying on me or when she jumps up or gets off. I can ask her to turn round as necessary and she is always incredibly careful and gentle. We now play with her lying on me, or she stands with her front paws on the arm of my chair and her back paws on the arm of the sofa. We still manage fetch and when I do occasionally get out on a walk with them she absolutely loves it.

What really makes her special is the way she regulates me. Sounds unbelievable but she does. A typical example is when I do some gardening. She will come out with me initially with me but then goes back in the house. She will then come out again a bit later to see me and again returns to the house. Nothing unusual there. A bit later however she comes out and refuses to go back in. She just stands next to the wheelchair looking at me. It is almost as if she's saying 'right that's enough, time to stop now'. She impatiently waits whilst Eric helps me back into the house and out of the wheelchair. Once I'm back in my chair, I get thoroughly licked. She reacts the same way when I play tennis on my PS3. She toddles off upstairs as soon as I start, but again she will come down as if saying 'enough now, time to stop'.

When I go upstairs (as little as possible as I have to drag myself up there) she always comes with me. Our stairs have a landing halfway up. From wherever she is, she will get up and goes and stands on this landing. She waits there for me until I get there, then she goes up to the top landing. Again she waits for me. She then waits for me to get back to the stairs. Only then does she go down. The only time she goes down without me is when I have gone up to have a bath. Every other time the routine is the same.

Bella gives me so much love, encouragement and protection. She is an exceptional dog, and I simply don't know what I'd do without her.

A real achievement!

Our raised beds which let me grow vegetables

Well it's taken me three or four sessions, but I have managed to clear the old plants, weed and replant our vegetable patch. It's such a sense of achievement because I can only do a small amount at a time, but I've plugged away and got there.

I've added these pictures to show what our disabled friendly raised beds look like together with the long concrete path that runs the length of the garden. Without these I wouldn't be able to do anything, it gets me outside for some welcome relief from the living room as well as some fresh air.

Gardening may be rewarding but it's also incredibly frustrating. Of course I'm confined to my wheelchair with my legs up. This immediately causes problems because I can only position myself sideways against the sleepers. Any digging I do is with a trowel like tool with a long handle attached. My upper body has to do all the work, and I have to lean across the sleepers to do any weeding, planting or pruning.

 I never seem to quite manage to get myself in the right position, the wheelchair often refuses to move because the front wheels are so close to the sleepers and get stuck. I also have a problem with the lever that allows me to raise or lower the leg rests. In my efforts to get as close as possible to the bed, this catches on the sleeper and so the leg rest drops. This is really painful and extremely annoying. I find it difficult to raise it again myself so Eric has to come to my rescue. Indeed without lots of support from Eric I wouldn't manage to do anything in the garden, despite it being adapted.

I have lost count of the number of times that I've got myself settled only to find that the tool I want to use is out of reach, or at the other end of the bed. I either have to manoeuvre to get it and then re-position myself again or ask Eric to get it for me. It can be absolutely soul destroying and their are many times when I get so fed up with it that I wonder why I bother at all. I feel so guilty because poor Eric has to keep bringing me things, filling the watering can, emptying my weeding bucket etc. It is impossible for me to get in and out of the garden unaided, indeed I need significant help just to get into the wheelchair!  There is so little that I can get myself or put away, the onus is very much on Eric to tidy up after I've done. Yet again it burdens him with doing even more for me. He never complains bless him, and as always he does all he can to help me.

The above sounds quite negative. It isn't meant to be, I am just trying to explain what doing some gardening involves for me. It is so difficult to express in words how hard it is for me to do gardening. As with everything else it's a military operation and it always makes my legs far worse and me utterly exhausted.

I get punished as usual but am happy to accept this because of the pleasure gardening gives me. It is nice to be able to do something normal albeit in a rather abnormal way.

Kai, an update

I mentioned in a previous post how I felt that CRPS was ruining my getting to know Kai, and my ability to do things with him. As with everything it was borne out of the frustration that comes with having CRPS. Everything is harder and it's more difficult to get involved when you are confined to a chair in the living room. I am so grateful for the support of Eric who as always did all he could to help me do more with him. It is some time since that post so I feel it's time for an update.

What am I missing?

Things have moved on tenfold. We've worked really hard on me doing things with Kai so that he got to know me better. As a result he now comes over to me across the corridor frequently, looking for a cuddle or to play. He wags his tail at me, something he wasn't doing. He jumps up at the side of the chair asking to come up. He lets me groom him easily without wriggling as much. We play rough and tumble on my lap. Or tug with one of his toys. In essence doing a lot of the things that I wasn't managing to. In the last couple of days I've been training him to come to the side of my chair, stand on a small wooden box we've put next to it and then put his paws on the arm of the chair so it's much easier for me to pick him up. If he does it right he gets a treat. Working really well and means I have a way of getting him to come up should I need to when Eric is out. He picks things up so fast!

A particular delight for me was when we came home last week after leaving them all for the second time. Normally it is Eric going out and coming back, so gets a lovely welcome from Kai. This time we'd both been out and I was the first one through the door. The other two came dashing through wagging their tails, jumping up etc. I always make sure I'm holding on to my grab rail tightly, as it's so difficult to greet them whilst maintaining my balance. That's why Eric stays behind me to keep me steady. Kai was jumping up and down, wagging his tail like mad trying to get to me to say hello.  The exact same reaction he gives to Eric when he comes in. It was wonderful to see him so pleased to see me. Without thinking I picked him up and was licked like mad with his tail wagging like mad. Just as well Eric was behind me because of course I immediately fell backwards, couldn't grab onto anything to support myself and had to be rescued. Nonetheless it was one of those wonderfully spontaneous moments you get so much pleasure from.

Our wheelchair friendly vegetable garden

Possibly the funniest time I've had with Kai was when I was in the garden earlier this week. We have raised beds so that I can reach to garden. I was doing some weeding and turning the soil over. Kai Had been lifted into the bed and decided he was going to chase my 'spade' (it's more like a large trowel with a long handle). Huge fun was had as I moved it backwards and forwards with him pouncing on it every time it landed. Lots of woofs and play poses. I can't remember the last time I've laughed so much. Absolutely priceless and so lovely to be able to play with him in a normal way for once. His beard was absolutely black by the time we'd finished!!

Yesterday proved just how good a bond we have developed. I was in a really bad way with stabbing pains in my eyes, awful headache and was sick several times. I was sat forward in my chair, Bella had disappeared as she can't cope with me being sick. Little Kai came over and asked to come up. He sat on my lap absolutely still with his head rested on my stomach looking up at me. I then went to sleep with him snuggled in the crook of my left arm and Bella in her customary position lying across me. They were still there when I woke up. Now that's what I call being looked after.

As I write this, Kai, who was lying on the bed rolled over and fell off! Thankfully his bed was there for him to land on. There's certainly never a dull moment with him around, and I'm sure that all three of my wonderful dogs help me cope better with CRPS. I may be stuck in this chair but boy do they keep me cheerful....

Second class citizens?

We went out shopping at the local large shopping centre on Wednesday and it prompted me to write about the widely different ways in which people act towards me. Some are lovely and give you that warm feeling you get when something unexpected and nice happens. The contrast is when people don't even acknowledge your existence, ignore you at best or actively try to avoid having to get anywhere near you. Or stare at you as if you're a circus exhibit or something. Let me give some examples.

Whenever we go out, which isn't often, I use my mototrised wheelchair with my legs elevated at 90° as usual. We lose track of the number of times that people walk straight in front of us as if we don't exist, wthout an apology or even a look in our direction. Then you get the people who stand in the way and make no attempt to move despite your calls of 'Excuse us please'. The most annoying are those who leap into a lift and then don't wait for you to get into it, often when you were the first ones there in the first place. You can see them frantically pushing the button so that the lift will go and they won't have to share a lift with a disabled person. God forbid!!

Shops who insist on having all sorts of gumph in the aisles are another example of how whelchair users' access is completely ignored despite legislation setting out what they should do. It is hard enough to get around shops at the best of times especially when I am twice as long as a normal wheelchair. Having baskets of stuff, or pointless displays stuck everywhere makes it even harder. I've lost count of the number of times Eric has had to move things and even then it's a very tight squeeze. Robert Dyas, W H Smith, Game, The Works and the vast majority of clothes shops I'm pointing at you!! Really looking forward to the Xmas period as you can imagine! Is it any wonder that the vast majority of things I buy are online? Why should I have to do that just because I have CRPS and in a wheelchair?

Then there's trying to queue and pay for things. The barriers they use are impossible to navigate, the counters are out of reach and now we have chip and pin it is even harder because you can't reach the machine to key your number in. If Eric wasn't with me I'd be completely unable to shop. He pays for everything apart from the occasional accessible counter. I did have a really lovely experience in Primark. They have a disabled till at the end so you don't have to queue. The woman who served me was lovely, put the card in for me, made the effort to move the machine so I could put my PIN in (most don't). She then came round from behind the counter and put the bag on the back of my wheelchair. The exception to the norm but it really made me feel like an ordinary shopper just for once. Like everything else going shopping could be an incredibly frustrating experience, but we do our best to make sure it isn't.

Contrast this with the people who offer help when I cry out in pain getting in or out of the car. Or those who move out of the way so that you can get through without having to stop, will hold doors open, pass you things from a shelf you can't reach. Carry things to a table for you. Those shop assistants that go out of their way to make sure you're happy. Such simple acts of kindness but mean the world to someone who cannot go about life as they used to. You also get lovely people who will not only just pass by, but will smile, say 'hello' and even stop and chat to you (usually having a dog around helps this). I always make a point of thanking them profusely because their small act of kindness makes me feel good about myself. Hopefully by making a point of thanking them they will feel good about themselves as well.

It wasn't until I became disabled that I realised just where we sit in society. The world is not made for the disabled person. I wouldn't expect it to be completely as we are a minority group. However my experiences over the last six years show that there is great deal that needs to be done before we can have anything like a similar experience to able-bodied people. From transport to shop layout, the world is an obstacle course, and one that isn't getting any easier. There are so many things that I cannot access, should I want to. I cannot join an archery club anywhere locally because they have no wheelchair archers and the regimented way that they shoot means that I simply can't keep up. And of course that is before I take into account other issues caused by the CRPS which makes doing anything more difficult. I applied for Archery tickets at the Paralympics next year and was lucky enough to get them. Assuming I will be up to going, which we won't be able to tell until the day, it will be interesting to see just how disabled friendly the venue will be. Should be brilliant you'd have thought? I won't be holding my breath.

My final thought goes to those thoughtful, wonderful people who make our lives easier. Sometimes in the smallest of ways. I salute you and thank you for your kindness.