When I was diagnosed with Dermatomyositis (DM) in 1983, there was very little information available to be able to find out what this actually was and what it actually meant for me long-term. Home computers, the Internet and online support groups weren't even a twinkle in some geeks eye.
Back then, consultants and doctors weren't quite so forthcoming with information, and only seemed to be able to communicate using long winded medical terms. They certainly hadn't developed useful leaflets that might help you understand your condition - even a little.
To be fair, I was only 17, and after having the doctor write the name of the condition, my two other questions were probably:
1. Will I get better than I am now?
2. Will I be able to play sport?
The answer to question 1 was "Yes", but the answer to question 2 was a bit more vague and uncertain.
Anyway, to cut a long story short, I did get a lot better, although it took a long time, and I did get to play sport - Rugby.
And whilst I was feeling well, and able to do things, I never really worried about finding out more about my condition and what might happen in the future. In the back of my mind, I knew that I was only having a respite from the DM, so I tried to live my life as fully as possible. I played sport, I travelled to places round the world, I pursued a reasonable career, I enjoyed a lot of socialising, I belonged to an Adventure Activity club. I wasn't actively trying to cram as much into a few years as possible but I was always aware that tomorrow might be very different to today.
The one thing I did neglect, and I regret now, is any sort of personal relationship - but that's a tale for another day - moving on quickly.
In the late 90's, I started to find things becoming more difficult again. I was referred to a new consultant and a new set of doctors, and spent time in and out of hospital, having tests to check my original diagnosis. Whilst in hospital I found that there was a new openness to information about my condition. Doctors were more open to discussing things in layman's terms, and occasionally I'd find myself in a ward with another DM sufferer and we could compare notes.
In 2000, I was diagnosed as having Inclusion Body Myositis (IBM). This caused great excitement in the hospital. Doctors from all over the hospital came to see me, as they had never seen a case of IBM in the flesh. Student doctors would regularly be sent to talk to me, to see if they could diagnose me, and at one time I was used as an exam question for final year doctors - only one came close to a correct diagnosis.
But from all this attention I started to collect snippets of information about my conditions, and little bits of information started to tie together with my experiences, to start giving me a better picture of my illness's. As far as the DM was concerned, I was pretty comfortable with what I knew and what the future held.
But the IBM, was something new and this time I wanted to know more. The doctor I was seeing in my consultants team, confessed that no one there had any real experience of IBM, but that she would put me in touch with a Neurologist who might be able to give me some answers.
So one afternoon, late in 2000 I had my first trip to the National Hospital for Neurology and Neurosurgery in Queens Sq, London. I was seeing Prof. Anthony Schapira, who had been one of the doctors to look at my muscle biopsies and confirm the diagnosis of IBM. So he knew a bit of my background.
He did an examination of my muscle strength and asked me a little about doing everyday tasks and how difficult these were. He then talked a bit in general terms about IBM and how it affects you, and what I could expect. He pulled no punches in telling me that my strength would continue to deteriorate, that I could expect falls, difficulty getting out of chairs, etc, etc.
It was exactly what I had wanted to hear - not in terms of what I it meant for the future - but in terms of, I now knew what to expect.
And then at the end he said that within the next 5 years I'd be in a wheelchair.
I laughed at this and said there was no way that would be happening. We discussed it a bit and he admitted that he could not be completely sure that this would happen but based on where my strength was now, this is what he would expect. I then offered him a bet, that in 5 years time I'd comeback and see him and walk into his consulting room.
He took the bet, and agreed to see me again in 5 years, or before if I needed to.
I saw Prof. Schapira, a few time about in other hospitals, and he always took the time to stop and talk to me, and ask how my walking was and whether I'd got my wheelchair yet.
Well in 2005, I was glad to go back to see Prof. Schapira at NHNN, and to walk into his consulting room. He said he had never been more pleased to lose a bet. He examined me again, and was surprised how much strength I still had, although he did say that definitely in the next 10 years I'd be in a wheelchair. By this time, my walking was getting quite bad, and although I accused him of stacking any new bet in his favour with a 10 year timescale, I was pretty sure he was going to be right this time. We didn't renew our bet.
I actually became wheelchair bound in 2008.
There is so much information available today to help patients, not just with Myositis conditions, but with all conditions. Consultants and doctors are much more ready to talk to patients, in terms they can understand, and answer patients questions. The internet gives us access to a mass of accumulated information, that sometimes its difficult to know where to look first.
But one of the best innovations of the past few years has been support groups, and particularly the online support groups. These give each of us access to a whole library of first hand experience, that we can tap into 24/7. We can talk to people from all over the world, share in their highs and lows, hold their hands when they need our support and jump for joy - metaphorically - at their triumphs and successes.
If I was being diagnosed today, at 17, I'm not sure if I'd have accessed these support groups, but certainly having some much information, so ready available, would have helped me better understand what was wrong with me, what treatments were available and that I wasn't alone.
Equipment
Following on from my previous blogs about equipment, this isn't necessarily a piece of equipment that I use to help because of my medical conditions, but it is something that makes life easier, and better.
Before becoming to weak, I used to make my own bread. It was very satisfying, quite therapeutic and my bread was always a lot better than any I could buy in the shops.
When I lost too much strength in my arms, I could no longer kneed the dough, and so stopped making it. Since coming out of hospital in a wheelchair, I have purchased a bread machine. All you do is put the ingredients in, in the right order, set the programme and press start. And about 3 hours later, out comes a perfect, fresh loaf of bread.
Bread Machine
You can make all different sorts of bread, different size loaves, pizza dough and cakes. In some you can even make jams. You can also set a timer so that it will begin making the bread, so that its ready when you need it. Trust me there is nothing better than getting up in the morning to the smell of freshly baked bread, and having warm bread for breakfast.
Since having this for the past 4 years, I might have bought a couple of loaves from the baker, but every other loaf is homemade.
Yum, yum.
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