I just made a mistake, otherwise known as breakfast. Less than 10 minutes from swallowing my meds and eating my breakfast and discomfort has changed to pain and I am getting really fed-up with the whole thing. There is an odd thing in life that I was first aware of just days after my first son was born, we forget pain with amazing speed. I suspect it is another one of those things that are hardwired into our brains as if we couldn’t forget it, we would do nothing, I for one would have given up eating years ago. Seriously though, it is something we all do and there has to be a reason behind it, I know that if I can get just a few days peace from the pain inside me that I am a much happier person and it isn’t until it returns that I remember with clarity what is so awful about the whole situation. Those days of peace seem to wipe clean my memory and I develop an attitude of this is OK, I can manage this, just like it used to be years ago when there would be weeks between bad spasm and I appeared to be fit and well, my memory of the flares and progression would vanish. Somehow I have held on to that ability, even if the time when I am free of something is just a few hours, my mind seems to wipe it out and I return to being myself the one who wasn’t scared of taking the next breath or twisting to reach something, even occasionally the one who could walk and still look like a human. This morning when I woke there was discomfort, no pain, just the crushing pressure that never leaves me in peace any longer and I didn’t give it a second thought. I got up, dressed and set about my day, once Adam had left for work, I went to the kitchen to get my meds, collected my breakfast and headed to the settee to sort out the programs I want to record this week. Not for a moment did pain enter my head until I was almost finished and was ready to head back here, then the pain hit and everything from the past few days flooded back in as though there hadn’t been any time without it.

It may sound like something that would be a joy to have, in some ways it is, but it is also the reason why I hate doctors, well not so much them, but the fact that when I am face to face with them, all the reasons that took me there have vanished and I just can’t put the passion of how it feels into my words. Many conditions don’t show themselves in every minute of every day, so much so, that I actually wonder how many doctors actually see patients who are displaying their symptoms while in their consulting room. I have actually built up the huge reluctance to actually seeing any of them face to face, it is actually now so bad that just like the other night when I couldn’t break the pain even after taking all my meds, that I was more willing to take an extra dose of Morphine, rather than pick up a phone and talk to one. I was terrified that they would come out to the house or worse still, send an ambulance to take me to the hospital, only to get there and find it had all settled again and I had nothing to show. I know that some of that is down to the fact that I wasn’t believed for so many years, just for that very reason. By the time I got to a hospital for tests, usually weeks or months after my GP asked for me to see a consultant, all my symptoms had died down, as the flare was over. When I know that the pain normally last just a few hours and it settles back down to just the remaining discomfort with small peaks of pain, well I am sure that my reluctance to ask for help even when it is at it’s worst, is understandable.

There is one more factor that I believe plays a huge role in the whole thing, I think the longer we are ill, the more accepting we also become. I know without the slightest doubt, if I had been in the sort of pain I was in the other day just even 5 years ago, I would have called an ambulance, convinced I was dying. It is one of the things that is so wrong with chronic illness, we develop this attitude of “I don’t want to make a fuss”. It starts from the second we get our diagnosis when we know that we are going to spend the rest of our lives ill and that the only way anything is going to change is downwards. There is something in there that etches itself into our brains, something that says we have to be stoic and bear what is ahead without giving into it. In the past, I have put this down in part to my upbringing, all those years when I wasn’t allowed to be ill and I was taught to get on with it, but it actually goes much deeper than that. I don’t know exactly where it comes from, but there is a huge dose of, if they can’t cure me than I have to survive it, some call it strength, but I question that as well. Is it strength or stupidity to put up with something that is unbearable? No, they may not be able to cure us, but surely if they fully understood just how bad it is they might be able to do more to help with it. It is really hard when you have spent as many years as I have just dealing with it all by myself, to reach out and ask the professionals for help, especially when you know that the truth is they can’t really do that much, other than maybe take some more of the pain away, something I did myself.

I know I have asked this question before, but when is the point that you stop dealing and actually make that phone call? No one has given me parameters within which to work, points that when crossed actually mean that you shouldn’t work it out yourself and do the sensible thing and scream, loudly. I almost fear actually telling them what happened this weekend as I am sure the next words out of their mouths will be, “Why didn’t you call?” Well, how many reasons would they like?

Read my blog from 2 years ago today – 27/04/13 – 12 hrs and counting

It happened! That thing I’ve skirted around and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just…….