Please let me be human

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…..






Sleepy spells

The phone rang yesterday lunchtime and it was the Dental Hospital calling to arrange my appointment for Monday next week to take a look at the ‘Thing’. Unfortunately, it hasn’t disappeared, so I still have to go and let them decided what it is and what to do about. I am still holding onto the chance that after 9 weeks of living in the back of my mouth, that it might just get fed up and leave, on the good side it hasn’t been oozing, that I have noticed in the last couple of days, but it isn’t any smaller either.

When Adam came home for his lunch we did a quick search to see if we could find a letter from a previous appointment, I know from arranging an ambulance with a stair climber before that they always want my “CHI” number, unbelievably in a house filled with all kinds of medical stuff, we couldn’t find any of them. I actually still believe we have some, but they are in one of the big chests that sit in the bay window, Adams lunch is only an hour and that included walking here and back so time was limited, especially as he had to have his lunch. We decided just to wing it as I was sure they would be able to find me on the computer system from my name and address, it might be slower but there is always a several ways into most databases. It wasn’t me who was going to call this time, Adam was going to set it up for a change, we were hoping that if he called and said he was my carer that they might just once speaking to him, actually allow him to come in the ambulance with me, it didn’t work. The whole system is nuts, I am not even allowed to bring my own wheelchair with me, which with all the floors being totally flat and uncarpeted, I would probably be able to manage to move around by myself, slowly I admit and it would be totally draining, but I would be able to do it. Without my chair I have to use one of the ones supplied by the hospital and they have to be pushed by someone, but of course I won’t have anyone with me, so it will take up the time of someone in the hospital, probably a nurse as the Dental Hospital doesn’t have wards so no need for porters. The whole system is mad and for someone like me or worse still someone with say advanced dementia or Alzheimers, totally terrifying without someone who knows how to put them at ease. My reactions right now to the whole thing is bad enough, the NHS are supposed to be able to deal with all these sorts of issues, but to me, in this area, they are failing totally. Adam made the call but it was just as same as when I call them as he was too told that he wouldn’t be able to go in the ambulance, he has managed to get time off to go with me and right now the plan is that when the ambulance arrives he will call a taxi and head there on his own to meet up with me. There and back it is going to cost us about £20, to me a total waste of money, but I know he is right, without him by the time I get home I would be in a worse mess than having him with me for most of the time at least.

Just like yesterday, I am still so tired that I feel like I could lie down and sleep for a week. I slept well last night, the full time without a single break, but it will take more than just one night to pull me back round to normal. I know that this is one thing that the healthy find hard to get their heads round, because unlike the healthy we don’t just snap back to normal after the following night sleep, it takes days for us to recover. I just sat here for a few seconds trying to remember the last time that I did just pull round back to normality after something small destroying a nights sleep and I can’t. It is almost as though our bodies no longer know what the correct reactions to anything is any longer. Getting over something so tiny and so insignificant has become like recovering from a serious illness. We all know what it is like having been ill with say a bad dose of the flu, you know you are better, that the illness has passed, but it still takes a few days more to be back to your normal self, well that is what 4 hours of disturbed sleep does to me. Place that across your whole life, every small thing that you are held up with and takes longer than you think, every chore that take more energy or strength than you expected, the stress that may have caused by all those irritations of life that the natural response to is being tired, add up all of those occasions you can think of say in the last week. Now add up your recovery time from all those things, how long it takes for muscles to stop aching and for you to stop feeling tired, multiply that by 20 and on top of the total, add in that daily life is 10 times more tiring as well. You have an idea what it was like during most of my adult life when I had kids, I was working and part of the normal everyday world and that was without the flares. Now take your total and multiply by 50 and daily life by 20 and you start to see what it is like for someone like me, but it doesn’t matter if it is my early life or now, just remember that it is only tiredness I am talking about, not the pain or any other symptoms.

Sleepy spells, stupidly it was me that started calling them that, “I’m just in one of my sleepy spells”, I can hear myself saying it as I have said it so many times. It’s odd how we do that, turn things that are actually important or hard to deal with into nice sounding silly phrases or name. I suppose it is a way of trying not to distress others, by making it sound trivial, something that is kind of soft and fluffy, well that’s how sleep sound, cosy and comfortable, but living in a permanently tired state is not fluffy in any way. Exhausted or not, life goes on, you can’t just stop and go to bed, you have kids to feed, money to earn, people to see and a life to live, so we all push on and on until we can’t and we are forced to stop. Sleep alone isn’t the answer to this type of tired, it helps, but on its own, you don’t recover, everything has to be stopped or limited, slowly you recover to a mild everyday tiredness, a level that you can once again function. It took nearly 30 years for me to stop, to give up trying to live like everyone else, I stopped everything, but I am still tired all the time despite doing almost nothing and I am still calling the heightened time “sleepy spells”, maybe I should stop that and just call it exactly what it is “Knocked out and Knackered”.


Please read my blog from 2 years ago today – 16/10/12 – Triggered thoughts

When I am feeling as useless as I do now, I find myself doing a lot of strange thinking, which I guess I have to explain. Strange thinking to me is when my mind starts to coast on its own and jump into things you usually wouldn’t know or believe you are actually bothered about. It is a little like…..