I was woken this morning once again by pain, but this time not in my stomach, but around my ribs. Once again, it was the razor blade like pain that woke me, it is so sharp and so grinding that there is no way of ignoring it for a second and like the majority of the pain in my torso, always worse when lying down. Just to add to the mix, Adam was happily snoring beside me, but I know it wasn’t him that woke me, it was the pain, as that was all I noticed until I was fully awake when the sound started to filter into my brain. I am still not totally used to him being there, what I do know is that should I wake during the night for anything, the first thing I do is check that he is there. I find myself reaching across the bed until my pinky touches his skin and then I go back to sleep, content to know he isn’t still through in the living room, hunched over his laptop or asleep on the floor. When I woke I found myself with the quandary I have had every morning since he returned to sleeping in our bed, do I use the mattress lift or not? I find myself lying there for a few seconds, trying to work out what my muscles will take or not, can I manage to get myself from flat out to sitting, or am I going to have to press that little button and risk waking him? He has told me not to even think about it, if I need it well use it, but inside I still fight with myself about it, this morning I had little choice, with the pain in my ribs slicing through me when just taking a breath, well the chance of no pain on pulling myself off the bed, was slim. I took out my earplugs and removed my sleep mask before touching the button as I wanted to be able to react quickly should he react at all, he didn’t, but neither did I raise the mattress as high as I might have, just enough that when I pulled on my stomach muscles they felt as though I could manage the rest. It isn’t just that he has told me not to worry about it, but also the fact that he can sleep right through a full minute of the alarm clock sounding, that should tell me I have nothing to worry about, if he can sleep through that, well he can sleep through the bed moving slightly, but I guess my need to care is one thing that hasn’t changed inside me.
The pain I had in my stomach all day yesterday seems to have calmed down overnight, it wasn’t the terrible pain that I have had for the last week or so, but it was constant and constant can in many ways be worse. The pain has settled, but nothing else has happened at all, I forgot when I was talking to the doctor to ask how long I should give his medication plan to work before upping it to the next level. Tonight will complete a full 48hrs passed without any change and as I know without a doubt that there is rather a lot waiting to go, I suppose I should raise the dosage tonight and give that 48hrs and so on, if there is still nothing, well I will phone him then, I just hope that I don’t have to. It doesn’t matter how long I have been ill, I still have the stupid fear that my body is playing tricks on me and that the doctors from years ago who wouldn’t help me in any way were right. I find myself scared almost that this plan will work today and that I will go to the loo, that may sound nuts as that is the one thing I would love to happen, but you see if this works at this level, it would sort of confirm that I am worried about nothing and creating it in my head. That idea started years ago, when unbeknown to me I had RRMS, my GP would send me to the hospital as he couldn’t work it out, but by the time I got an appointment I was back in remission, so they found nothing and told me I was fine. I went home feeling as well as I did when I went there, but with a flea in my ear regards wasting their time. Months later, it would happen all over again and I was caught in this mess of being ill and with no one believing me and so it went on. It is so ingrained in my head, that I know without a doubt that when it comes to talking to doctors, well I have learned to downplay everything as I don’t want to be left looking stupid and when they do prescribe something for me with confident words that what they have prescribed will work, when I know inside it won’t, I still fear they may be right.
33 years of working out for myself what works and what doesn’t, doesn’t stand for anything, when you have this little worm of doubt that was planted so long ago, still wriggling and twisting around in your mind. For 20 years I dealt with all the problems that RRMS throw at me by myself and when it changed to PRMS, suddenly I had the medical profession behind me and they have managed to help me so much, but they can’t undo what they did. I am totally sure right up to my dying day that I will be saying, no don’t call the doctor, not because I don’t need help, but because I will be scared that I might just be wasting their time. All the logic in the world can’t undo a single second of something that is so deeply engrained in your mind. Oddly I find it easier to forgive and forget the things that happened to me in my childhood, than I do to get past what doctors did to me as an adult. I can only assume that that is because I was an adult and it was the so-called caring profession that managed to get things so wrong. It isn’t so much the misdiagnosis that still annoys me as the way I was treated and what that has done to me in the following years. I am sure that if I hadn’t been left feeling like I was a nuisance, that I wouldn’t have lived as long as I have in as much pain as I have been in. It is odd how someone who clearly has a logical thought pattern and the ability to work things out for themselves, just can’t undo one small thing and put it where it belongs, not in my brain.
I won’t be alone in this position, if there is one thing that being part of a huge community of people living with chronic illness had taught me is, none of us are the only ones, there are always others going through exactly what you are, at the exact same time. Maybe the day will come when this will end, if it does I am sure it will be brought about when diagnosis is taken out of the hands of humans and is done by a machine that can see everything and removes human error. I hate to say this, but when that day comes, I believe the numbers of us will rise hugely as all those who are struggling alone because they don’t want to be made to feel like a waste of space, a liar or an idiot, will actually get the diagnosis they know without a doubt, is just waiting to happen and no one after that point will ever have to wait again.
Please read my blog from 2 years ago today – 07/02/13 – Body Check Match