Yesterdays pain took over my day, just after I finished my post I took the logical step of taking a long over due morphine boost, it turned out to be my first of three. Having not slept properly from 5 am on, I found the pain just getting to me more than normal, I even found myself snapping at Adam for the things I usually just bite my tongue over. Pain is probably one of the best things for making you do things you don’t usually. I am actually surprised at how well I manage to not loose my temper, I know that years ago I wasn’t so good at it and there are many people around out there who know all to well that I could shout and scream about things, many would have just ignored. I still remember just how much I felt myself change, just knowing that I actually did have an illness behind all the pain and other symptoms I had lived with for so long. Not having effective painkillers, or people who believe you, all to often leads to frustration, a frustration that vanished just by having a name for each different illness I had. I have found so many people who have been through the same or similar, but what really upsets and surprises me is that so many are right now still going through the same thing. Just the other day I had a message on Facebook from a young woman who has been fighting for 7 years to find out what is wrong with her, just like was at many times in the past, she had been close to taking her own life, just because no one was helping her or believing her. She said that what I had written about my fight for the truth, had given her hope, but I find it all so wrong that it takes a chance finding of something on line, to be the one thing left to give anyone enough hope to keep fighting. It doesn’t seem to matter what country we are talking about, there is this standard belief from doctors that if you don’t fit any condition in the area they work in, you therefore have to be making it all up, suffering from some kind of mental illness, not a physical one. There has always been one question I have never asked, but I think it is a really important one. Why if they are so sure that all that pain is down to a psycho semantic illness, why don’t they treat us for that then, rather than just sending us away? I was really luck when one doctor made a misdiagnosis and sent me to the ENT department, where there was a very elderly doctor who knew enough ,to know that no I didn’t belong in his department but there was something really wrong and took a chance by sending me for an MRI, he diagnosed correctly after just looking at the results that I had MS and as they say the rest is history.
Living with chronic pain or chronic anything, is so much easier when you know what the reason behind it is, I have no doubt there are many who have succeeded in killing themselves just because they can take no more. I also have no doubt that there have been many who have physically hurt others because of the anger that pain builds when there is no reason, people who have hit out, not to hurt but because of pure frustration, taking their pain out on others. I remember all to well finding myself unable to get to my feet or to stand and having nothing other than madness to blame for it. Even when other had seen it, including doctors, when nothing showed in their tests, that was the end of it, I went home again clearly in pain, clearly with a body that didn’t want to work properly and clearly as mad a hatter. I wish I knew the answer, or even away of helping those who at this second are where I once was, I am the lucky one, I know now not just the name of one illness I have, but a growing collection that numbers 14 so far, all diagnosed after they found my MS, all where there before, but I believe ignored as I was “mad”. I could write pages and pages about just how wrong the whole system is, but it would change nothing and change is the big thing that is needed, a change that means one doctor saying there was nothing wrong x number of years ago, can’t leave a mark on your notes which mean future doctors don’t even try.
I can now live because I at last have a doctor who accepts all the things that wrong with me and also accepts I am the best person to tell him, just how much pain control I really need and when. Read back through my blog and you will see that getting to this point hasn’t all been plain sailing, but I got here but I don’t take it for granted and I don’t take it lightly either. I know that I am now on a line that says more and more drugs will be needed in the future, just to keep myself at a level I can live with. Pain control never means being pain free, that is a dream and it’s one that takes time to accept. I at first thought that the tablets they would give me would make my life just like everyone else’s, they didn’t and they don’t. I guess that is what most people out there who are fit and healthy just don’t get, more than once I have had people totally shocked that I was sitting beside them clearly in pain, when I was popping pills constantly. Pills don’t cure pain, they ease it, they make it liveable, the only way to be pain free, is to be asleep, easy with medication. To be awake, able to function and with pain at a bearable level, takes a fine balance and is often difficult. Everyday is different, everyday is still a battle and everyday is a 100 times easier just knowing what is behind it.
My heart goes out to those still working their way through, I am glad that I have helped some people to keep trying to find their truth, but I am disappointed that my fight that started when I was 21, 32 years ago, is a battle that still hasn’t changed.
when we are in pain it is always a lot harder to control our emotions things that would never normally bother us would and could be blown out of all proportion. Thankfully our loved ones know our little quirks and as such can handle the odd outburst. Like you said though it is so hard to be able to fight something without diagnosis
I have a condition a bit like yours but I am lucky enough to be still mobile. It’s called RSD or CRPS. I got a remission from the first bout in the 70s and developed it again in 1997. I enjoy reading your posts and I’m sure they are really useful for others with MS. You are such a good writer and explain very well what it’s like to be in chronic severe pain. I think a lot of people including docs don’t realise the severity of some types of chronic pain, but lump us all together. I have Fibromyalgia too and although that is no walk in the park, it’s quite different.