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.

Grinding to a halt

This is the second post taken from the blog I started in late 2009 but gave up on. This entry is particularly pertinent to how I have been feeling since Friday (it is now Sunday) when I went on our puppy, Kai's first walk. See here for details. I knew what it would do to me, but went ahead anyway. It shows how little the punishment has changed between then and now.

Originally written Sunday, 29 November 2009  
I have just had one of those days that I'm sure many with similar chronic conditions can relate to. Namely a day when you simply are unable to do anything at all except sit and hopefully sleep. The pain is just too bad, to the point that not only are you boiling hot, sweaty but you also feel sick and can't even watch television.

Punishment of this kind is suffered all too regularly in my case, because I will insist on trying to do things. By things I mean read magazines, play tennis for a bit on my Wii, go out to the shops and similar pursuits. By any normal sandard these are trivial things, and certainly the length of time I can manage is to be honest pathetic to pre-CRPS activity.

I guess it's all about quality of life. You choose to suffer the punishment for the slightly better quality of life. When starting from such a low base it is totally worth it in my eyes. I would go completely bonkers if I kept to the level of activity that I can actually cope with. Argubly this would mean no life at all anyway....

Staying Positive.... how?

I was looking at the notes feature that Facebook has started and came across entries for a blog I started in late 2009 but gave up on, probably because it was just too difficult mentally. 
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
 
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.

How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.

It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
 
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.

There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.

I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.

So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.

The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.

So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.

The quest for success

I've been mulling over what should be the topic of my next post and I've plumped for the quest for success, or more importantly it's importance to the CRPS sufferer. I'll try and share strategies that we use to try to make sure life is about positives rather than dwelling on the negatives. I hope it helps my fellow sufferers and gives others further insight into this terrible disease.

CRPS takes no prisoners as I've said before. I've been writing this since 6.30am, largely because I'm hoping it will take my mind off the horrendous way I'm feeling and the terrible pain in my legs. I woke up feeling like I'd been hit by a bus. The reason? I dared to go out to lunch with Eric for the first time in ages. So I'm sitting here in agony. My legs are on fire, I have stabbing pains all over the place, my cheeks are red hot (cheers morphine!), I'm overheating badly and my head feels like it's surrounded by a fog that is pressing in on me. It would be terribly easy to feel really down and depressed, wishing I hadn't bothered going out. I desperately try not to and that's a philosophy that stands me in good stead.

As far as it is possible I do my best to take the positive from any situation or anything I do. Not dwelling on what I can't do, which would inevitably leave me feeling down, useless and thinking 'what's the point'. In the early days those thoughts were never far away, and certainly contributed to me considering suicide on a daily basis. I'd be lying if I said I don't still feel totally fed up, desolate, low and resentful on occasions because I either can't do something or am really struggling to cope with the payback. Being unable to do anything is so incredibly frustrating. You have to do things to try and take your mind off the pain, so if you can't? Well it's a viscious circle.

The other really important factor to me staying positive is that I don't set any long term or even short term goals anymore. It's pointless because I never know what I'll feel like from day to day, let alone in a couple of weeks/months time. Sponteneity is not a word applicable to the CRPS sufferer. We make appointments, such as the dentist. However these often get cancelled on the day because I'm simply not up to it. We don't worry if we are a bit late for appointments either, we go at our own pace and get there when we get there. Rushing causes more pain and makes me snappy and irritable. People are fine with it because they know the situation. Similarly as far as possible I don't have a deadline for anything, or at least give myself a lot of time to get something done. It seems ridiculous that it can take me a couple of weeks to order something on the Internet. But it's amazing how I simply don't feel up to getting the tablet out. These blog posts take so much out of me, it takes several days to write just one, but again every one published is a success. It is so hard to do anything whilst suffering chronic pain, so why make it worse by doing too much! For the record it has taken four sessions to get this post done. Hope it was worth it!

Another thing I do is keep a diary. At the end of each day I briefly write what Ive done, and more importantly my achievements for that day. We're not talking mind-blowing stuff here, or things which normal people would thing twice about doing. Things such as having a bath, managing to read a newspaper all the way through, ordering something on the Internet, spending time on Twitter. Here are some typical entries....

26/10/2011 - Played Deus Ex (video game, I always play whilst Eric walks the dogs). Feeling really grotty, spent all day sleeping, trying to get well enough for Jackie's visit. Had to get through feeling grim, Managed to get talking in the end, Really good to see her.

23/10/2011 - Played Killzone 3. Played tennis (I do this sitting in my chair using a Playstation Move controller which I swing as if hitting the ball). Felt dreadful later in the day. Read paper today. Slept lots of the afternoon. Read my book.

22/9/2011 - Played Deus Ex. Went to Lakeside (shopping centre). Really enjoying it although legs not good at all. Bought Sony Tablet. Slept all afternoon.Read part of paper. Read my book.

23/9/2011 - Played Deus Ex. Felt absolutely terrible today. Couldn't do much, tried to rest. Read paper. Managed bit of setting up new tablet. Read my book.

Riveting stuff isn't it? I put 22 & 23 September entries in as they show how doing something like going out knocks me sideways. Typically the length of time spent reading is about half an hour before I can't carry on, similarly the newspaper takes a couple of sessions. Sometimes I read the same sentence several times, falling asleep again before I can get any further. I play the video game for about an hour and a half. However each time I manage to do any of these things it's an achievement, something to be positive about. It is also good to read through my diary when I'm feeling low, reminding myself of what I have managed to achieve.

I try not to think how utterly pathetic my daily efforts are compared to what I used to do. With CRPS you have to celebrate the little things because they are all blows made in what is the constant battle against the pain, exhaustion and everything else that is part and parcel of having CRPS.

'Educating Essex' - blast from the past

Had completely overlooked this series, 'Educating Essex', until it was mentioned on BBC Breakfast yesterday. As hubby and I were both teachers (he taught Art, I taught Physics and Science) we thought we'd have a look. Especially interesting as it was being filmed in a School in Essex.

It was the first time I'd been 'back in a school'. I know it was on the telly, but you can't help but remember your own experiences from your teaching days. I haven't been back in a school since getting CRPS and as a rule they don't make documentaries about real teaching. Programmes like Waterloo Road aren't representative of what teaching is like, but this was about real teachers, real pupils with all the problems, issues and battles I had seen or encountered first hand.

My first comment would be that nothing seems to have changed in Schools. There are still the really challenging pupils, the children who are bullying someone or being bullied themselves, the teenage pregnancies, the terrible home life that too many children have to deal with. I sat watching and could visualise pupils from my teaching days with me doing my best to help them as I watched the staff on the programme try to do. I remembered having exactly the same kind of conversations with pupils in my Science groups or tutor group. Trying to show them the way, give them a shove in the right direction. Point out what will happen if they leave School with no qualifications because they 'can't be bothered' or only want to mess about, ruining things for everyone. It reminded me just how much I really miss that. Getting a young person on side, working well, doing their best and keeping out of trouble. Making a difference, however small is why I went into teaching in the first place. It was difficult to watch, knowing that I can never do any of that again. I never got a chance to fulfil my potential, go as far in the profession as I could. In short I wasn't 'done' with teaching. CRPS ripped that away from me in an instant.

There was a Deputy Head at the School whose approach to teaching reminded me of myself in the classroom. He was more than happy to have a laugh, be silly, basically doing all he could to make history less yawn inducing and fun, whilst remaining completely in control of the group. He used the word 'cock' in an entirely appropriate manner, but of course the pupils took it a very different way. I remember using the word 'fart' with a group of year 6 pupils who were visiting the school. Appropriate to what I was talking about but using a word they wouldn't expect a teacher to use. They loved it of course!

It's a wonderful feeling during a lesson when you've got a group of pupils really engaged, they're coming along for the ride, hanging on your coattails. Enjoying the lesson as much as you are delivering it. Lots of banter. You get the idea. Most importantly they are learning without really realising they are. I miss that terribly. The programme brought back memories that I've buried somewhere in the dark recesses of my brain, because there is no way I could ever hope to teach again. Living day to day is hard enough. It annoys me intensely when you hear on the news about people being on benefits when they could work, are just scroungers and cheats. I'd give anything to be back in a classroom again. The fact that I can't hurts. Really hurts!

I would like to think that I'd have become a similar Deputy Head to the one in that programme. Truth is we'll never know....