This whole weekend has been a tough one, even yesterday evening I was unable to find comfort regardless of what odd position I managed to find and believe me, I found quite a few. My diaphragm has been in spasm now since Friday without the slightest sign of releasing, it is either tight or tighter, with no other position in between. I am totally used to living with the discomfort, actually that sounds so wrong, not just that I should be used to living with something like this, but it somehow sounds as though I am totally cool with it, I’M NOT! The English language is letting me down again, yes I am used to it, but I still hate every single second, especially when it is so tight that I find myself going light headed and my limbs tingling simply because I am having to breath so shallowly just to avoid total pain. The last few weeks due to all the problems with my stomach and the pain that I have from that, combined with my diaphragm and not getting enough sleep have just worn me down. I have been trying so hard not to keep going on about it in here, not because it isn’t important but because it isn’t interesting any longer, it’s just another part of what it seem is required to be me.
Adam has so many times become angry with me for not talking about how my day has really been and him having to find out from my blog that I wasn’t actually fine. I suppose there will be loads of people out there who are living with someone with a similar condition who constantly just says I am OK, but anyone can see quite clearly that they are anything but OK. It doesn’t take much imagination to understand what is behind that word OK, life would become rather dull and depressing if I were to sit down every day and go over from head to toe what has been happening, we are in a marriage and that is about two people, not about one. Despite the fact, that no two days are exactly the same, the overall feeling of most days is, my day is just the same as yesterday and it takes major events for me to realize that things are changing or getting worse. So the fact that I can sit here this morning and know without any thought that last Monday was totally different, well it points to the fact that things are bad and getting worse. Yesterday morning for the first time in ages when Adam asked how I was, I first started by saying OK then changed it and told him I was actually feeling totally crap and exhausted. I have known for years, that saying something wouldn’t change a thing other than he kept trying to find things that he could do for me and I continued to feel crap and even worse, because I had put the whole thing on him as well. It has to be one of the hardest things to know what or when to say anything, almost as a rule these days I say nothing until I know I have hit a point when I am no longer able to not so much cover it up, but the impact of how I am feeling would be visible to the blind. To survive this lifestyle, especially as a couple is hard, being ill is an insular process for everyone, we close ourselves off from the normal world as we can’t see outside of ourselves and the misery that has moved into our bodies. Our partners still live in the real world, but they are trapped in ours too as they can see, even if we don’t tell them, what is happening. Both sides of the relationship start playing this odd game of pretending life is “normal”, but it’s anything but. When phases like this one appear and you have the word pain written in capital letters over your entire body and you can’t sit or lie down in any comfort at all, it all suddenly gets hard for both sides. I don’t want to make a fuss, but I am so clearly locked inside myself that he has to say something and to make it worse I can see my pain reflected in his eyes, simply because he doesn’t know what to do about it.
I am in pain, from just above my waist right up to my shoulders, both front and back, I am in pain and that is without mentioning all the normal everyday pain that the rest of my body is filled with. Some of the pain in my upper half is being caused by my attempts to ease it, I know that as I have muscles now screaming at me all the time simply because without realising it, I am tensing them and trying to use them to support the areas where the pain really is. When I lie down the pain gets worse, but lying down is the one position in which I can relax the muscles that have nothing to do with it, but you can’t relax out of a spasm or the feeling that your insides are under such pressure they want to burst. I feel as though I have been eating my booster tablets like sweets, every four hours, awake or asleep, I am reaching for them, even though at best they are just easing things. As much as I love him, I am glad that it is Monday and that Adam is back at work, at least there he can’t see how I am, or how badly I am dealing with things. Part of me wants to call the doctor and tell him it all again, part of me says what is the point. Part of me wants to demand a rise in my morphine, part of me keeps saying this will settle and it will return to how it was before, but how long do I listen and to what part.
I know at some point in the next 12 hours Adam will read this, but as always by then he will have seen with his own eyes that I am still alive and I am still coping, even if it isn’t as well as normal, I am still here and still OK in my own way. From my side writing helps, not with the pain, but with at least sorting it out in my head and because I don’t give him verbally the details he seems to want, well I guess it helps Adam as well. The worse my health gets, the less I honestly know what to do about it, it used to be easy, I used to have or at worst was able to find the answers but they don’t arrive any longer with the same ease. This is where I thought that I would have all the phone numbers the lists of people to call to help me through when things were tough, people who would be able to say this is the drug you need, here is the gadget that will bring you comfort, I was wrong. All that anyone can offer me is to once again get on board the merry-go-round of doctors who nod their heads, make comforting noises and send me back home to get on with exactly what I had before I went to see them, but worse off as I have used so much of my precious energy to just get there to see them. I think I will give that dubious pleasure a miss.
Please read my blog from 2 years ago today – 2/03/13 – It’s not really there.
A Saturday morning and actually no snoring, well at least not in the living room Adam is actually in bed. We sort of switched places today as I got up after another 11hr night, slightly less yes but still too much. I guess it means my body needs it, otherwise I would wake early and get up, but I don’t even have any disturbance to my night, it just ends with the alarm. When I woke yesterday afternoon………