Last night, I found myself snappy with Adam, which is a truly rare thing. He realised within seconds of being home, that I was once again exhausted and that I wasn’t in a responsive mood. It’s not common for me to be like that, normally, it doesn’t matter how I feel, I manage to put on that happy face and make light of it, but not yesterday. Everything about yesterday was extreme, hence yesterday’s blog. I quite honestly didn’t know how to deal with another minute of that day, I was done before it even started. Every element that I have spoken about over the last few weeks, for some reason all appeared together and it got the better of me. I can cope when it is just the constant pain or the endless tiredness. I can get through any day where they are at levels where I can make light of them, or even if one or the other is off at an extreme, but yesterday, they hit me like a mallet, and there was no escaping either. Not even my Morphin boosters were doing their job, quite to the same extent as normal, in fact, nothing was working as normal. For me to be off hand with the person I totally adore, was just the final symptom of a day, that was filled with extremes.
Adam, like so many people when faced with someone who doesn’t want to communicate, who is clearly having a tough time, is to make light of life. To talk twice as much as normal, crack jokes, tell stories and constantly try to get a positive response. When that failed, he then started to ask questions every few minutes. “What is it that’s so wrong?” “Can I do anything to help?” “If I did this or that, would it make things better?” “Have I done something to upset you?” Inside, I was screaming “Please, just shut up”, but the words always come out as “No there’s nothing you can do, I’m fine”. Unfortunately, I was very aware, that my tone was saying anything but. It takes a lot for me to lose my patients with Adam. Like any husband, he can occasionally drive me up the wall, just as a wife, I am sure I also do to him. Even at my worst, I rarely feel as I did last night, and I knew totally, that it was all coming from me, not anything Adam had done.
It can be hard at times to put aside my health, and to try and be the person I am, and I always should be around him. When you have lost all your energy, when your patients with life is thin, even those we love can turn into another annoying blue bottle. They don’t mean to, and we don’t mean to feel that way, it’s just the way it is. Normally, those days are well spaced, but recently, I have found myself there too often, just wanting to swat, what are meant to be loving actions. Adam isn’t stupid or blind, in fact, the other day, he himself said, “Shut up Adam”, then mumbled his way back to the settee. He had come up here just to make sure all was well and to give me a kiss, he didn’t manage either. Too frequently lately, I have pretended that I was busy, engrossed in what I was writing or the game I was playing, not because of him, but because I just couldn’t cope with anything or anyone else at that very second. I feel guilty for it, more so, because I can even explain what is going on to me, far less to him.
Physically, there are two things that right now are getting to me. Firstly, my lungs. I am getting so much pain, not just the normal intercostal spasms, but a separate internal tightness. A times, when I take a breath in, there is pain right in the center, exactly where the bronchus splits in two. My right lung is the worst, as I have areas that are really painful all the time, others that spike out of the blue, sometimes in line with taking a breath, others when I move. All the inhalers in the world won’t help me, as this is muscular, this is all coming from my PRMS. I loose my breath at times, but more than anything, it is simply restricted. Secondly, once again, it’s my stomach. This one I really don’t get as with the increase in the Psyllium, I am actually going to the loo every three days, which is wonderful compared to how it was. The pain, though, is at times off the scale. It’s in the same area’s as normal, but far more intense and lying down or sitting, there is no relief. Psyllium, unlike laxatives, doesn’t cause spasms, it’s simply a bulker and one that adds lubrication. This pain is from spasms, so once more, that means this is my PRMS. Add in the rest of the pain that is spaced out around my body and clearly, the pain is getting to me badly. It’s not constant, but in the last three days, have been exceptionally bad. The pain alone is exhausting, but it’s not alone, as they way I feel right now, I know something else is at play.
If I could get the pain under control, them maybe, just maybe, I might feel better. I say maybe, as I am so used to living with pain, that I can’t be sure, that it is causing how I feel. My Gabapentin increase doesn’t seem to have touched these areas, I’m sure it has, but it just doesn’t feel that way. What it has done for me, is to turn down the pain levels throughout the rest of my body. At first, I thought, that the turning down of all the background rubbish was just allowing me to feel this all the more, but over the last couple of weeks, it has clearly been increasing. My Morphine boosters turn it all right down, but if I take too many in too short a period, I start having vivid dreams that disturb my sleep. The less sleep I have, the more tired I am and the worse the pain gets. Therefore, I try not to take more than one or two at a push in any 24hr period. Yesterday, I put off taking that tablet until 6:30, the time I close down my PC and we settle together on the settee for the evening. Unfortunately, they may deal with the worst of the pain, but they don’t stop the spasm and even without severe pain, they can be incredibly uncomfortable, and just as tiring. By 6:30 last night, I was exhausted, so tired that my brain just could deal with even the TV if I’m honest. It clearly couldn’t deal with Adams attention as well.
When all of this started a few months ago, I never thought then, that it would get this bad. The more I think about it, and the more I analysis what I have written over that period, the more convinced I am, that something bigger is going on. I can’t help thinking, that the increase in pain, and the growing exhaustions, are symptoms, rather than the conclusion. If I could just deal with those symptoms, then I might find out what is behind them. I have always told myself, that it doesn’t matter what my body throws at me, I can deal with it. I still believe that. What I can’t deal with, is the way it is affecting me when it comes, to how I’m treating Adam. I know, that he doesn’t let it affect him, he understands that it’s not really me, but that just makes me feel worse. He doesn’t deserve to come home to someone who it crotchety and frequently downright rude. As he keeps reminding me, “Marriage is for in sickness and in health”, what he conveniently forgets, is that we have been married for nearly 16 years and I’ve spent 13 of them sick. I don’t want to spend whatever time I have left, short tempered and snappy, but I don’t know what the answer is.
Please read my blog from 2 years ago today 04/02/2014 – Making things better! FOR WHO??
After years of getting frustrated by not being able to pick something up or dropping something without warning,I now have a new and unexpected addition. I had been using my E cig and was ready to go to bed…..