I seem to be just jogging along the same path every day at the moment, inside all I want to do is sleep, but when I am lying down I find I can lie there without sleep appearing. Yesterday afternoon I lay in bed during the afternoon just aware of once again how dead my arms and legs where and how incredibly tired I felt. I would have sworn that I didn’t sleep at all, but the clock told a very different story, I had slept for well over an hour and all I had to show for it were limbs that felt of no use and eyes that just didn’t want to have anything to do with daylight. My eyes have been more and more sensitive to it over the last months, I didn’t mention that the other day when I was writing about the effect on my eyes that my health had had, I don’t know why but I didn’t. It is the same every time I leave the bedroom, which is the darkest room in the house although as I have said before not totally dark. Coming into the living room is painful, to say the least, I can screw up my eyes as much as I want, but the sun is still getting in and still makes me want to just head back out and to stay where it is dark.
Throughout the winter, I keep the curtains shut, not due to the light but to keep the heat in, this year I am finding that I am still sitting in almost the dark even though it is clearly summer and the heat is outside. Adam now opens the curtains at the back of the house every morning, it is always darker round there as the sun never really comes in through those windows, the huge trees help to block any bounced light of other buildings, but on their own bounce a nice soft light bright enough to work in the kitchen, but soft enough to not need sunglasses. In the living room, although the curtains are open, the blinds are only open a quarter of the way, so that the light levels remain low, even when the sun is directly on the windows. With a room filled with crystal and two cream settees, when the light comes in it bounces painfully of everything. I don’t remember ever finding it as hard as it is this year to deal with light, all I know is that without even the slightest doubt, that waking up and moving slowly on otherwise dead limbs, to then be assaulted visually is one thing just too much to deal with.
My muscles are still complaining big style, I know I thought that I had found the answer with my meds, but it doesn’t seem to have been it at all, just coincidence. It was really nice to have a break from it for a couple of days, I just wish that the break could have been that bit longer, in fact, it has been a dream that I have had for a long time, that my body would just give me a break from it all. It’s 13 years since my MS turned progressive, 13 years since I last felt like a normal person and was able to lead a normal life, from the day that I came home and told Adam that I was going to the doctors as I just couldn’t take any more of it and I wasn’t going to be fobbed off by the normal excuses. He didn’t know about any of it, as I had become so used to living with it, I doubt anyone would have known back then, I hadn’t had a flare since several months before I met him and that was explained by my doctor as a virus. I had become convinced that I was just a wimp and everyone felt just as I did, it was just me that couldn’t manage to live with it, but I couldn’t accept that and I was determined to get the answers I now have. I have often wondered how long it would have taken if I hadn’t been so determined if I hadn’t demanded that I had had enough and I wanted it examined again because I knew there was something wrong. If I had just gone to the doctor and complained about all the normal things, would I have been told yet again it was a virus, or would I have been sent home with antidepressants, their other favourite excuse that never really fitted. I suppose the course of my illness would have been exactly the same, that I would have just been struggling for longer, not knowing what the reason was.
There are theories out there that a diagnosis is the worst thing we can ever have as that diagnosis gives up permission to be ill, rather than to get on with life. I actually remember one nurse warning me that that was the way some doctors thought and that they would see the fact I had been trying for years to get a diagnosis, would work against me and getting one was lucky. Some would also believe that there hadn’t actually been anything wrong with me at all prior to that point, that my history was one of a hypochondriac. She warned me as she had come across it many times and she told me not to dwell on the past at all, when it came to talking to a doctor, to just talk about what was happening at that moment only. Strangely I actually think she was talking the truth, the more I look at all my interactions with doctors before and since my diagnosis, I can see clearly some doctors who actually fall into those camps. Doctors who are totally dismissive towards my MS and any other condition that I have been diagnosed with, unless it can be seen in an x-ray or removed with a knife. I have thought often of mentioning it in here, but I have shied away from doing so as it all sounds just that bit odd. Life though has shown me that odd is often just what life is and I think it is something that should be in here, just in case someone is not getting the responses they expect, or where hoping for. It may well be that there is something wrong not just with you, but also your doctor.
In the UK we are always reluctant to make a fuss, to do anything other than treat a doctor with a huge dose of respect, bowing to their pedestal and blaming ourselves when we come home upset and no further on. I did it for many many years, even to the doctor I am with now at first, but he is the doctor who I was forceful with for the first time in my life about my health and he was then the doctor who could see that I had truly had enough of being told there is nothing wrong and sent me to everywhere he thought might be relevant. If your doctor seems to be not listening or is brushing you off rather than making you well, you have the right to a second opinion, something I never asked for. I guess the best example I can give you is the fact that it was an ENT specialist who diagnosed my MS, before sending me on to see a Neuro who confirmed it. I was sent to ENT due to my balance problems, I was lucky I had found a doctor who agreed there was something going on and he wanted to know what it was, as much as I did. One MRI scan later and we had the answer, if I had seen a different doctor, I would probably have been sent home with the usual, we can’t find anything wrong. Diagnosis isn’t just about the right tests, it’s very much about the right doctor, find them and you will also find out the truth about all the others you have seen over the years.
Please read my blog from 2 years ago today – 30/06/12 – Changing Values
After the rain of the past few days, it is really nice to look up from my computer screen and see the sun bouncing off the buildings across the road. at this time of day, it is still lowish in the sky and the warmth outside hasn’t started to build yet, so only one window open for just now. Even when you are caught inside the weather still somehow seems important, not because you want to know what to…..