I knew this morning as I was making my porridge that I wasn’t going to be able to finish it, but I made it anyway just as I always do, by the time it was ready, I didn’t want to eat any of it. I sat here staring at a plate half filled with hot porridge and had to make myself eat every single mouthful, making yourself eat, as everyone knows is a hard thing to do, your body is screaming at you not to, you don’t need this and it isn’t welcome, but you eat each mouthful, fighting it down into your stomach, until the final warning comes and you have no choice but to stop. I had managed three-quarter’s of it, without enjoying any of it. I don’t understand what has triggered this appetite close down, but after more than a week of it, I now realise that it has no intentions of letting go of me. I thought a couple of days ago that it might just be my body reminding me that I hadn’t taken my weekly laxative, so I took it that night, as luck had it, it didn’t actually start to work until late on and didn’t complete until around 2 am, once again a disturbed night, but with a purpose this time and the expectation that I would feel more myself in the morning. I don’t, I feel really quite awful today.
I really don’t know what is going on all I know is there is something wrong with me and it has been building and building over the last few weeks. It all seems to go back to the day that I found myself totally unable to pass anything from my bowel, which as regular readers will know I have discussed with my GP, but he didn’t seem that concerned about it. From that day right through to today, everything I can think of has slowly been getting worse and I have been equally been feeling slowly worse as well. I have had days here and there where I thought that things were settling down, but they just don’t last and when they end I feel worse than I did before. I have no doubt that my MS is at the root of the issues with my bowels, it has been investigated in the recent past and nothing was found, other than the fact it just isn’t working as it should as the nerves aren’t stimulating anything any longer, not much of a surprise as it was something I had been telling them for months. I often wonder just how much doctors actually listen to what we are telling them, or if they just latch onto words here and there and miss the rest out. The result is that we go home and continue to get worse because they just haven’t picked up on the clues that were there, before they become a major issue. It has left me wondering what I should do, do I call the doctor and say what, that I am feeling wrong, that I have no appetite and that my bowels are still not clearing, as after being woken twice last night, I still don’t feel it is clear. Do I mention again, the increase of the spasms in my rib cage that compress my lungs, or the fact I just want to sleep more and more? What bits are important, is the increase in my spasms in my arms and my legs, or the recent arrival of a new pain in my chest, one that takes my breath away and leaves me not sure of where it came from or why? It could be the nausea or the constant feeling of my diaphragm being tight and solid, or it could be the pains in my side and the increase of the bruising along the rib line under my right breast, or the series of neuralgia attacks in my brain. I could keep going listing and listing but I don’t have the slightest idea what is important and what’s not, as most of it, are just part of what it means to live in my body and nothing can be done about that, but for all I know what I call normal might just be the most important point and I am the one that has missed it.
That is always the problem when you live with chronic poor health and a list of already diagnosed conditions, everything becomes a mixed mist that finding your way through and spotting the true reason and the true symptom that is at fault, is almost impossible. It wouldn’t surprise me if those of us in my position are actually living with ticking time bomb that we don’t tell anyone about, just because we think that it part of what we should expect. It used to surprise me that so many of us with chronic illness didn’t just have one, we have a collection or a gang as I prefer to call them. When you think about it, it isn’t that surprising, as I bet like me they actually already had a gang before the main and most devastating of them was even thought of or found. For years I was sent to this doctor or that, some found nothing, others found something be it IBS, osteoarthritis, asthma or Fibro, the lists kept growing and I was just lucky when by chance they found my MS as they weren’t even looking for it. So most of us live with our own personal gang and the worst thing you can do is put yourself in the hands of the specialist as I did 2 years ago as they will find something new, like gallstones, something else I didn’t really need and had no idea where even there.
Clearly I used to be happy to put myself in the hands of the specialist as I used to have this strange belief that whatever they found they would be able to fix, the truth, the real truth is they can’t fix any of the conditions I have and I guess the majority of us have. I’m not so keen these days, surprisingly I really don’t need my gang to get any bigger, these days I would just rather not know as it achieves nothing other than more pressure to live with. Being told I have COPD did nothing for me, it just gave me another name tag and another source that I could partially blame for what was happening, but the main issues is as always my PRMS. After several weeks of feeling ill, not the ill I have lived my life with, but another ill on top, I am at a loss of what I can do next, or even who to turn to or do I even really want to. I don’t want to feel like this, but what are the real options and the real outcomes? I have several progressive conditions, I know what that means, but just like I was told years ago that there was nothing wrong with me, I know that whatever is happening now isn’t a progression, something is new is happening and it just doesn’t seem to want to settle down and leave me alone. I thought once, that once I had the final diagnosis, the biggie and the one that had made my life so difficult for such a long time that I would be fixed and free to live, the horrid truth is, it just keeps getting worse.
I am under no delusions of what my health means and where it is eventually going to end, but I’m not ready to be run over yet, all I want is to feel well, I can live happily with the pain and all the side effects of my illness and my medications, but it’s a fact I already eat very little, probably not enough for other parts of my health, I can’t afford to eat less, yet I am slowly losing the ability to not just eat more, but just to eat. I don’t want to wake up every morning feeling like I want to throw up, or wanting to eat and trying just to find that a tiny amount makes me again feel sick. It seems that no matter what I do in life, there is a line of fate that I found somewhere along the line that says “Nothing is every going to be easy, everything will be a battle, but you can’t just give in, so get up and deal with it.” For the first time, it is failing me as I just don’t know how to deal with it right now, I guess like everything else, the answer will appear.
Please read my blog from 2 years ago today – 29/10/12 – Bringing speech to mind
Yesterday reminded me that is a simple thing that would make most people angry can upset a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in its gaps, I have found…..