I had a bad nights sleep last night, I still can’t put my finger on what originally woke me just after midnight, but I was up again at 2am and my back was killing me. At that point, it was high up and followed exactly the line of my diaphragm, a booster pill and a cigarette fixed it well enough for me to sleep until just before 7am, when I woke for no reason I can think of with pain right across my lower back, bodies can be so annoying at time.
I got angry with Adam last night just after he came home from work. He had been home about half an hour and we were watching the end of Hollyoaks, yes I know it’s meant to be a teenagers soap, but it so silly that we love to watch for the often stupid storylines and the realities of life that they just love to ignore. I think for me the best stupid one was when they had a character who was in a wheelchair, but constantly appeared in places his wheelchair just wouldn’t have taken him. Stairs seemed to be no issue what so ever for him and frequently went to the nightclub which had no lift and home by himself, to a flat with no lift, despite being a paraplegic. Anyway I digress, one of the cast in the story has just announced that he has MND or ALS as they call it in the states, something which should be interesting in “Hollyoaks World”. For some reason, this triggered a memory for Adam about something he had read or seen somewhere about work being done on mice to find a cure for Alzheimer’s and he started to tell me about it. For the first few years after I was diagnosed, both Adam and people I worked with kept telling me about all this work and success that scientists were having with research on conditions that had cross over symptoms to my PRMS, eventually it began to drive me mad, just as I am sure that it drives many others. Like it or not, there is a fact that any work being done at this second is never going to make the slightest bit of difference to me. I can say that with a large degree of confidence, it is a simple enough equation, for research to be turned into a treatment takes years, often 10, 20 or more, then getting that treatment rubber stamped for use on humans can take just as long, if not longer in the case of some. By the time they have gone through all of the systems and red tape, I will be long dead and once dead, none of it can help me at all. As soon as he started to talk I cut him short, as I just didn’t want the slightest chance of having to spend the next few months or worse years, hearing about more so called breakthroughs that mean nothing, other than fantastic news for those not ill yet. I even admit to getting angry when they talk about these breakthroughs on TV, as to me what they are actually doing is giving people false hope and sending people running to their doctors demanding things that don’t even exist yet. Even if the work is at the point that they are starting human trials, you can’t get on to a trial just because you ask or even demand, you only get to be part of a trial by invitation as every medication you are on or have been on, all have to be taken into account, the people they need are in a very small band, people they find by contacting specialist centers. I know because that is how I got the chemo drug Mitoxantrone that I spoke about yesterday, it was an unlicensed treatment in this country and I got it by luck, the luck that I was in the right band, at the right treatment center. I didn’t have RRMS and my late diagnosis meant that my drug treatments had been limited, my bad luck put me in their bandings, which was my good luck. My luck continued as it worked for me and I was also lucky that I didn’t develop leukaemia, something they didn’t know at the time, but there were a list of things that could go wrong and I had to sign to say I knew that but I was willing to take that chance. It may have changed my world totally and I got a huge benefit from it, but it is now a medication that is banned because of what they learned during those trial.
I don’t think it matters what your condition is, I would put money on it that there was at least one person you told about your diagnosis who turned round and said, “well it’s amazing what they can do these days”, I heard it so often that I wanted to scream. When people read daily in the newspaper about what our scientist are working on, it can appear that almost every condition in the world is already cured, or will be cured in the next 5 years. It is all part of that myth that we all grew up with, that our doctors have the answer to everything, well they do if you have something simple that would probably get better by itself in time, but they don’t when it comes to chronic illness, if they did, there wouldn’t be millions of us right now living with them. I know that it is reported on so much for a whole host of reasons, from back patting to fund raising, but the people they are out to help, are actually the people they hurt the most by telling them about it far too soon. By painting their picture, what they are really doing is painting a false picture for those who don’t understand and then jump to ill-informed conclusion that if we are suffering still, we clearly aren’t either getting the right treatment or aren’t doing what our doctors have told us to. They build up false beliefs and false hopes, two things that make our lives harder, not easier.
There is a limit to how many times you can take being faced with questions that start with “Why” and always contain the pointed word “you”.
“Why aren’t you getting better?”
“Why do others get these cures and you don’t?”
“Why don’t you demand these drugs?”
“Why aren’t the doctors helping you?” Why, why, why, they just go on and on and it doesn’t matter how often you answer them they are always followed by the classic, “Well, I saw it on TV or read it somewhere……”. Living with a progressive condition that is taking your life away second by second has enough second missing without haveing to lose even more of them answering questions caused by badly reported stories of cures and breakthroughs. There have been the odd one that has been clear about timings, but the fact is that people only read and take in what they want to, so when you or someone you love is ill, you are of course going to pick up on the words of hope and ignore the words of truth. I am totally sure that those who report these things equally don’t want to give false hope, or make the lives of those who are already ill any harder, but the cold hard truth is, they often are.
No matter what the research that Adam has come across about how they might one day be able to restore the memories of people with Alzheimer’s, although PRMS and Alzheimer’s share many symptoms, how we lose our memory are actually quite different and that is another thing that families and friends don’t always fully understand. I have always believed that whatever our individual conditions that there is so much that we can each support the other with, as solution to symptoms are often the same, whether we have Arthritis or MS, we struggle with our hands, but that doesn’t mean our medications are interchangeable. It doesn’t matter if we are in a wheelchair because we are paraplegic or have MND, the problems that life in a wheelchair causes are universal, but when it comes to how physio or adaptations required to make life better, the differences are suddenly clear. I suspect that more similarities in our treatments will grow in time, but for now we all have to live in this world and it is a reality that is often cruel and hard, yes we all need hope, it is one of those things that gets us through, but the cruelest thing you can do to anyone is give them false hope, especially I believe the false hope of a medical miracle.
Read my blog from 2 years ago today – 8/04/13 – Day on day > http://bit.ly/ZhHoYA
I’m really lost as to which day this is, I know it is Monday, but which one and the position in the month I have checked many times today already. It is Adams birthday and our wedding anniversary later this month. I can’t manage the huge gifts of later years but I want to get something for him even if it is small. I never used to have a problem of thinking about things like this….