I have been. I am home. And it was good. I have hope.
Yesterday did not get off to a great start. If I tell you I was doing the washing at 1am and putting things in the dryer at 2am you will get the picture. I did not sleep much. I went off to physio and shot through all the exercises, and have discovered that the wobble board and I can do great things if I am not wearing trainers! I stayed on balancing for between 5-10 secs, which may not sound like much, but given that my previous record was 0, it is a superb improvement. Those toes can grip hard.
It rained all day. I arrived looking like the wild woman of Borneo. Rain and long straightened hair do not combine well. And never wear suede boots when it rains. The boots and the socks inside them were sodden. I was a picture of stunning-ness. Especially when I took the boots off. Sigh. I need to work on the image. And never get on the scales wearing sodden suede boots and socks. I swear they added 10kgs to the weight.
Jackie was a true star. She drove and she also stayed with me through the appointments and took notes. And asked questions. And was generally superb. I am so lucky she is here. She is also the one who found the hospital after doing much internet exploring for me.
It took 2 and a quarter hours to get there, but the journey both ways was fine. Wet, but no traffic problems. And the hospital is right in the centre of Bath. Just round the corner from the Roman Baths, and in the middle of a wonderful shopping district, full of narrow lanes and unique shops. It is very old. The hospital, I mean. We sat there waiting, imagining what it was like when it was first built. Imposing staircase and all. I did seem to be the youngest person around, but that was just fine.
And then we met the first of the 2 doctors. Amazing. The doctors both clearly love their work, they smile constantly, but real smiles, and they both told me how well I was doing, and how hard I must have been working. This was the very first time a doctor had said I was doing well. Wonderful.
Anyway. After 2 hours of questions, prodding and poking, having to imagine things and talk about what I am imagining and all the rest, the second doctor (who is actually a consultant nurse with a PhD in her speciality which is CRPS and who is one of the heads of the clinic) said I will be going in for a week of intensive therapy and they will do all the thermal imaging etc while I am there. They will train me to do all sorts of exercises to improve my mobility, and deal with the pain. I will be working with physiotherapists, hydrotherapists, cognitive therapists, doctors, etc. They watched everything I did, and pointed out some things I am doing subconsciously which I need to work on immediately.
I refer to my leg as "it", or "the leg". A separate entity. I hide "it" by wearing trousers/pants deliberately, so I can't look at it. I pretend it is not there. I think of it as having a mind of its own. I have detached it from my body. I protect it by always sitting where it is furtherest away from other people. I arrange everything subconsciously so that it is shielded. I seat guests to the right of me. I arrange my cooking so it is all right sided. I sleep so that the leg is protected. And you know, it may sound ridiculous, but it is SO RIGHT. I have to change things. I have to wear skirts. Look at the leg. My leg. Touch my leg with different textures 5 times a day. Actively change how I see my leg so that it becomes part of my body again. This I can do. I am short-circuiting the neural pathways that have evolved.
And the mirror. This is fascinating. I sit on the bed with a mirror, a long one, between my legs, so that I can see the whole of my right (good) leg. Then, in the mirror, I can see 2 legs just the same. Good ones. And I have to do some exercises, looking at the good left leg in the mirror, even though my real left leg, which is hidden, may not be doing quite as well, my brain is seeing two perfectly good legs working well together. It is hard to explain, but it is simple and so effective. I have to do this 5 times a day at least. This I can do too.
They say that it is rare that they see someone at the beginning stages of the onset of CRPS. They usually get referrals after all else has failed, so this is fairly unique for them to have the chance to work with someone at the start, relatively speaking. I know that there is a chance it may never go away. But, if, 3 years down the line, there is no improvement, I will also know that I have done everything possible to heal myself. I am SO lucky to have this chance.
There was loads more, and although you now know more than you may wish to know about what I am doing, it is good to write down the fact that I have hope. I have already learned new things. I can help myself. I can do this. I am wearing a skirt, even though the leg, my leg, is cold.
I fell asleep in the car on the way home. So tired. Totally drained. But smiling. They said my attitude was superb. That I am not a victim. That I actually sought them out myself, and got my GP to refer me. That I am willing to push through the pain and not let it stop me. That there is a possibility that I will heal, because I believe I can.
So, if you see me refer to "the" leg, or "it", please correct me. Yell, if you have to. I have found a place which specialises in what is wrong with me, and it is all good. It may be excruciatingly painful, but it will work. I will keep believing.
I have hope!