Peering into the abyss...

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

The most recent photo of my arm

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

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

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

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

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

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

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

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

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

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....