Telling the truth

I don’t remember when it happened, it wasn’t like there was this sudden revelation or I even made a true decision about it, I just know that it happened. Some might say that I gave up, others that I saw the truth, I’m only sure of one thing, it’s not the first and I can’t prove the second. I’ve been ill for over 30 years now, most of it unaware of what was wrong with me, just with this knowledge that there was something wrong, something seriously wrong, but no one else agreed with me. I was left to just get on with life, to make the best of the way my body was and to do what I could, to make my life the best I could. Personally, I don’t think that I made too bad a job of it. When things were bad, I even found the money to go to the homeopathy hospital, but after 5 visits, nothing had changed and the money I had saved up, was running thin. I had a simple choice, get on with living or starve. Eventually, when I did get my diagnosis, I had the most amazing collection of reactions to it. I knew that I had just been handed a death sentence, but on one level, I was overjoyed because I had been right all along. What I didn’t expect was that there was no cure, no operation, nothing that any doctor could do for me, other than palliative care. I had for all those years believed that the day they could tell me what was wrong with me, would be the day they would start to cure me. When they couldn’t, I searched everywhere that I could for an answer, for even the slightest clue that there might be an answer one day, all I had to do was hang on.

I’ve been hanging on now for 15 years and not a single advance that has been heralded as the miracle cure will ever be of the slightest use to me. In fact, I no longer even read the write ups with any hope, I only read, so that when all those wonderful caring people out there, send it to me for the hundredth time, I can comment on why it won’t help me. As I said, I don’t know when it happened, or if there was a decision involved in any way, but I no longer even look for a cure or even anything that might improve how I am. More than that, I no longer even have any hope that the medical world will be able to help me, any more than they do today. I expect that I’m not alone in reaching this point, I suspect that there are many out there silently living exactly where I am. We feel we have to be silent, as we believe that our loved ones and those who don’t know us wouldn’t understand, that they might see how we feel as us giving up, but it isn’t. I haven’t given up on anything, other than false hope.

Hope is a wonderful thing as it gets us through some of the worst times in our lives, but it’s only useful when there is something to base it on and something we can believe in. I don’t remember when I stopped looking for what wasn’t there, all I know is that it was before I became housebound. Somewhere inside me, deep inside me, I woke up to a truth that had been staring me in the face from day one, reality. The reality of being given a diagnosis of both a rare and incurable condition, that the fact is, the likely hood of anyone coming up with a cure is slim, very, very slim. In the case of MS, nearly all the research and therefore all the breakthroughs are in RRMS, the one that the majority of people have. The rest of us, well we are the forgotten, the ones who if it works for RRMS, they will try it on, just in case it might help, but normally, it doesn’t. Right back when I was diagnosed, they said there was no point putting me on any of the MS drugs, as not one of them would help me. It took a long time for that reality to reach my brain and when it did, I felt I couldn’t talk about it.

How do you tell those who love you, that your no longer going to even bother reading any of those sites who claim they might be able to help. That you don’t even want to hear about drugs they have just discovered that have helped some others in tests. In fact, you quite simply want to scream, when you hear it on the TV because you know without hearing anymore, that the truth they aren’t saying, is it won’t help me. Once any condition has been in your body for 30 years, once it has taken you to the point where you are housebound, in a wheelchair and have lost control of most of your insides, there isn’t time. Any drug has to go through years of testing and development before, it would even reach the likes of me, and I don’t have all those years to wait. That’s the reality that too many of us live with in silence, because if we were to say it, whoever heard it, wouldn’t hear our truth, they would hear “They’ve given up”. Well, I haven’t, just read my blog and you will know I haven’t. Giving up is something totally different. This is about living without false hope, about living with the truth and being at peace with it.

It took my many years, right up until the last couple, for me to feel that I could talk freely with Adam about all of this, without him taking it wrongly. I used the news of some “breakthrough” that was announced on the News as my root into the conversation and because he could see both my anger and my feelings clearly, he also saw that I was still fighting but with real life, not some dream that might never come near me. I get angry every time some announcement is heralded as the possible cure for any condition, it makes me angry because, without a doubt, it will build false hope in so many. To me, that is cruelty, especially, if it were to be heard by a child of someone who is dying, they wouldn’t understand it at all.

Trust me, if my doctor phoned me today to tell me that there was a new drug he wanted me to try, I would, but I’m not holding my breath. I’d rather enjoy the life I have, for as along as my body will let me. Free of worry, free of searching and free of all false hope.

 

Please read my blog from 2 years ago today – 16/08/2014 – Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half was recorded along with lots of note taking. Although it was all for this new…..