It’s my body and my life

Yesterday, I was reading the “About” page of another blogger on this site and was totally delighted with the final paragraph, that I had to start today’s post with it. Why? You will soon find out…

By the way, if at any time you are tempted to tell me, “Why don’t you just ________?” in regards to dealing with my health, DON’T. I am the expert on my body. I am the one who has done all of the research up to this point and have used all of my five minutes with each doctor to present my strongest arguments and beg them to help me. Believe me when I say that I have considered every option. Believe me when I say that I have already thought of whatever is crossing your mind and it doesn’t apply to me.

After 30+ years of illness, 14 of them diagnosed, I so related to that paragraph, that I sat and applauded it as I read. I have to say, that it is probably the most annoying thing that people do, not only annoying, it is also a huge insult. Surprisingly, developing one or even a collection of chronic illnesses, doesn’t leave us brain dead, well, not at the beginning, at least. If we do reach that point, I expect it to be a doctor who will diagnosis that as well, after all, it’s their job. Pre and post diagnosis, you read everything, you are so convinced, that you will be the one, to find that thing that is going to change our world, that you are obsessed by it. I have read about and considered almost everything that is out there. Most of it went in one ear and out the other, simply because it wasn’t applicable to me, or it was beyond stupid. I even learned to understand medical papers, they never stopped being boring, but I understood most. I read, I cross-referenced and investigated, but eventually you stop. It’s not that we are no longer interested, or that we don’t want to get better. We stop because eventually, all of us come to the same realisation, we’re not getting better, not now, not ever, and the only people who might still come up with something is our doctors.

In my case, about a year after I realised this, my Neuro actually sat in front of me and told me, there was no more that he could do. There weren’t any more drugs to try, no therapies to offer, my PRMS was true to its nature, and was totally untreatable. He was going to send me to a list of people to see if they could help at all, and he was going to instruct my GP to step my pain control up, to include Morphine. His desperation list, all told me the same thing, they couldn’t help. In fact, the physio he sent me to didn’t just say she couldn’t help, but after reading my notes, she wasn’t going to lay a finger on me, as it would just cause me unnecessary pain. Yet out there in this world, are still people who think, they have the answer, what they don’t realise, and seem to find hard to accept, is they can’t have the answer, because, there isn’t a single question to answer. There is a point, where if you don’t just accept life as it is, the only result left is insanity. I think it took me about six months to absorb fully what my Neuro had said, I thought that I had taken it in when he said it, but I eventually realised that was why he sent me on all those pointless appointments, to show me, he was right. To all those still searching for their diagnosis, who are still holding on to the dream that once they have it, either a cure will appear, or that just tinkering around the edges, is going to change anything, don’t read the rest of this, because it doesn’t change a single thing. I have actually come to the conclusion, that their only use is to keep you busy and to distract you from the truth.

It may seem odd to some, but the day that I realised that this was it, I was never going to be better, only worse, actually flattened my stress levels. Honestly, it was an amazing release. For the first time in thirty years, I could stop worrying about hospital visits. Stop trawling the internet for that hidden cure, and it was an end to the constant disappointment, every time a so-called, new breakthrough appeared because, they no longer applied to me. All I had to do from that day forward was enjoy what was left of my life and control the pain levels. What my Neuro had said was the truth, and regardless what happens in any lab anywhere in the world, it’s too late. The damage already done to me is so great, it would take an entire bank full of miracles to fix it. Other than checking medical information, such as how to spell Mitoxantrone, I couldn’t tell you when I last looked at a medical website, several months at the least, and that is wonderful. I can actually now take the time to enjoy the internet, and there is much to enjoy outside of medicines.

Then someone pops up. Some well-meaning person who hasn’t engaged their brain and tries to tell you something. Oddly, I have often found that they appear after half reading something I have written. If they had read the full post, I really can never see why they would say the things they do, but they do. It doesn’t matter how hard I have tried to write the full truth, of what is happening day on day for over three years, people still only read half of one post, and turn into experts. Why? Just as much as the “new cure” doesn’t exist, neither does the “right way to live” exist either. My PRMS nor my COPD is going to be changed by diet, not having my nightly G&T or stopping smoking. I am too far down the line, maybe, if I had done all those at the time, unknown thought of factors, 30 years ago, I might have lived another year, but I didn’t. I made it clear the other day, I don’t believe in alternative medicine, yet still the suggestion that day appeared again of acupuncture. Almost weekly, someone suggests that I try Marijuana like I’ve never heard that one before. When I tell them it’s against the law, some still try to argue with me. Please tell me what is not clear in that statement? Clearly, I am saying I won’t break the law! I wouldn’t, even for a cure, so I’m not going to over pain. No matter what I do, how I explain it, or what I say, everyone is a critic and a medical expert, or ready to go to jail.

I learnt a long time ago that there are people who regardless how well you can debate your point, won’t admit they are beaten. I remember there was a discussion in the office, many years ago now, about the pros and cons of being a smoker. I make no secret that I love to smoke, but I have never argued about the stupid changes in the laws in the past years. I had no issue, I just didn’t go to a bar, a restaurant, the movies or on a train, I can’t say I missed a thing. Anyway, one of the guy’s who had asthma said something about cigarette smoke affecting his asthma. He thought for some reason he had a trump card, and stood there looking rather smug with himself, he didn’t. I pointed out that I to had asthma, but that unlike him, I didn’t have a car that I went everywhere in, I had never had one and never would have one. Plus, unlike him, who went on holiday abroad at least once a year, I hadn’t been in a plane since I was 12, so who, was polluting the planet more? He stuttered a bit, sat down and shut up. These days, my brain isn’t that fast, it would probably be the next day before I came up with a response. That doesn’t mean I don’t have one, it’s just another problem of living with everything I do.

I may be wishing for a day I will never see, but we all make our own life choices and it’s nobodies business but ours. I choose to open my life to the world. To write, so that others have the opportunity to see the reality of this world from my side. Someone who is dying in the 21st century from a list of incurable illnesses, a list I have written many times. So yes, I have opened myself up to being picked on and told what to do, but that doesn’t mean I have to like it. I don’t like it because I wouldn’t do it, to anyone else. No matter how well meaning, how nicely it is said, if you ever consider telling someone who has reached a point on the trail of life where there is no longer true hope, just emotional hope, don’t break it by making suggestions, that clearly they will be aware of and will have considered. The most thoughtful, caring and helpful thing you can do, is to treat us as a friend and think before you speak about anything to do with health.

Please read my blog from 2 years ago today – 14/11/2013 – Nerves alive 

It’s 10:30 am, I want to sleep, there is no control just a growing desire to close my eyes and sleep, even though I am not in my bed. I woke when the alarm roused me and waited patiently as the elevator lifted me to a……