Death by misdiagnosis?

Well I did as I said I would and starting from my afternoon sleep onwards, I slept for 2 hrs as that was what I needed, returned to my PC for an hour while Adam cooked dinner and I switched my PC off at 5pm started my evening, nothing harder than watching TV and having a couple of drinks. I went to bed a 10pm and slept fabulously until the alarm sounded at it’s normal 7:30am. I am back in routine and I am going to stick to it. I have had MS long enough to know that you have to work with it or it will make life hell, winter really wasn’t that bad so if living that slower way of life is what is needed then I will live it. I’ll keep you updated as the days go on.

Today I am going to just take things slowly and rest as much as I can which will hopefully put me on to the right footing for the new week. It is so easy to forget at times how much the simple things we do daily add up and effect everything else, able bodied or not. It is always the same in life but once you have and idea you start looking into other years and times to see if it should or could be applied there as well and I think it probably could have been. I have shied away from writing this for a while, but for some reason I feel the time is right, so here goes.

Like so many with MS and or Fibro I had mine for many years before the much chased diagnosis came through, wondering continuously what the hell was wrong with me and more so in the Summer than any other time. Looking at it these days it is easy to see how much my life has been effected and I along with most others blamed the wrong things. I was just 20 when I was first treated for depression, tablets and counseling, but it never quite fitted and it never quite worked, which isn’t surprising really as I now know depression wasn’t the root but the leaf. I constantly complained of being so tired and in so much pain that I would sit and cry for hours as I just couldn’t cope with young children, keeping a house going and everything else it was just too much for me. Yes I did get to the point that I took several overdoses but I totally understand why now. My overdoses failed as in those days there was no way to look up the right amounts to take or which tablets, I guessed and every time I adjusted, and every time I throw up violently, that’s how I am here today. One summer I now know I was having a really bad relapse, but at the time I just knew that I could take no more of anything, I couldn’t cope as a mother, a housewife, a wife or even as a person. My husband found me unconscious with vomit all over the place. That night I was sectioned. I was in hospital for 2 months, during that time I went blind in one eye for 3 days, my co-ordination came and went I had poor dexterity, and I slept and slept. I still remember days of pain that they would give me nothing stronger than aspirin and they blamed everything else on my bodies reaction to depression and the drugs they were trying to get the correct levels for me.

If everything you did caused you pain and you were so tired, with muscles so fatigued that the thought of one more day chasing after and looking after children, left you just wanting it all to stop. When no one believed that you are in pain, as there was no diagnosis of anything that explained it, when you are so tired that you wanted to sleep for ever, when your concentration is shot through and you never seem to get anything completed, when there seems to be no way to end any of it, is it surprising that black thoughts enter your head and death becomes the only option. The problem was that they had it all back to front. They seemed to lock on to three small words that I used and they were the ‘I can’t cope’, those words brought the diagnosis of depression and they then thought that the depression caused all of it, rather than depression being the result. Once those words are on your medical records there is no way past them, no one believes there is anything wrong and no one listens, they just pass you another prescription and pat you on your head as they send you on your way. From time to time when I had a relapse they would try again to convince me there was nothing wrong and I was sent to the hospital for tests. There is no speed in their actions so that appointment would arrive once remission was in place. I was left trying to explain things that they couldn’t see as they had gone. Another pat on the head and another Dr who gave me the feeling I was wasting his time.

I was lucky a few years ago that I move doctors and my notes were lost. I had a clean slate and no one knew what the past had been. By this point I was dealing as well as I could with my relapses without seeing any doctors, occasionally I would go and get painkillers but I mainly just lived in my own structured world. I had two relapsed bad enough to be signed off work, both were put down to viruses which I was told could take months to go away. Then it happened my MS turned progressive, it didn’t go away it stayed. I didn’t get better just worse and I had had enough. I stood my ground against my GP and insisted that it was investigated, I still kept my past a secret. It took another year and a half to full diagnosis, along the way they found the Fibromyalgia and they so nearly stopped there, but I wouldn’t let the balance problems lie so onto ENT, an MRI and there they found the lesions. That bit I have written fully about before.

From the day that I was told what was really wrong and why I felt the way I did, that it was controllable with medication, was the day I started to live with hope. To many of you it will sound nuts, that being told you are ill is good news, but in many many ways it was the best news I ever had, because there was now a way to live, rather than just exist, while hoping for death.

I still find it extremely worrying that there are probably still loads of people out there going through exactly the same thing. To some GP’s a young mother complaining of extreme fatigue, pain and unable to cope there is only one answer, depression. Worse still, many of them will make a better job of taking overdoses than I did and they will die, they die because of something that could have be treated, giving them back their lives. Not once since the pain was brought under control have I felt suicidal, not once since I have understood why I am so tired have I felt suicidal, not once since they believed me and stopped making me feel I was mad, have I felt suicidal, not once since I was given back my life have I felt depressed, but how many others have died in that time.