Just waiting

I slept for two and half hours yesterday afternoon. Normally I will sleep about an hour less than that and it was clearly the alarm that woke me. I had gone to bed without finishing everything I had to do. I just didn’t have either the energy left or the ability to take the pain any longer. By the time I gave up, I don’t think that there was a single thing from my hips to my mouth that didn’t hurt. Even my arms were screaming at me by that point and I had had all that I could bear. I knew that I was going to sleep without any issues. I was totally exhausted and I hadn’t even made it through the first half of the day. Pain has to be one of the most draining things there is and when you can’t find relief, well the only good fact there is, is that sleep will eventually take over.

I had been pinning some hope on the fact that the pain lowest in my stomach meant there was a chance that I might just actually go to the loo and break some of the pressure. There was no luck there either. Yes, I did go, in fact, I went twice, but it didn’t produce any relief what so ever. I had in the morning been putting down the fact I felt so ill, to the pressure, pain and tiredness. By the late afternoon, I had begun to really wonder. Out of the blue, my temperature was spiking, sudden spells of feeling like I was totally frozen, but sweating at the same time. Yet again my skin was feeling like it was on fire but in the way it does on a cold winters day. After two days of not feeling well and suddenly I was showing something beyond just my normal nutty body. There is one thing that not even my body can manage and that it so truly fake a high temperature. Admittedly, it can fake aspects of it, but to get that bitter coldness whilst sweating is something I’ve only ever had when something else is at work. Whatever is wrong with me, it is centred on the one part of me that spends its entire time producing pain and most days absolutely nothing else.

I have thought many times that I have found the worst part of life with PRMS, but this attack on my internal processes, of processing food and breathing, really is the list, leader. No matter how bad, anyone can live with spasms, I’ve been doing on and off for most of my life. When my MS changed and I was eventually diagnosed with PRMS, I thought then I knew what living with pain was. That assessment has gone up and up every year. Just over two years ago, this new phase began. I don’t think that since then I have had a single day without either or both diaphragm and stomach pain. Like everyone, I thought I knew how much pain a stomach can produce, I was wrong. It too has gone up and up but far faster than any other pain that I live with. Even the pain I was in from January through to June didn’t manage the highs of the last 24 hours. So OK, I am 90% sure that something is aggravating it, but that doesn’t change anything, it just means I have another way of feeling rotten. Through out the evening it just kept getting worse. Sitting was something I couldn’t manage to do in one position for even one full minute and the pain had made it all the way to my feet. Just placing them on the floor was wrong and there was no way that my legs muscles would stretch so I could put them up on the stool. All the sort of things I had expected when I was diagnosed, pain everywhere in muscles you knowingly use. I never once thought years ago about the possibility of my PRMS being involved in anything internal. I know now that was naive, but if no one gives you the heads up, you just don’t imagine these things. Yes, I knew that it meant spasm, nerve pain, nerve death and all the other joys, but I never put those first three together to make something that could stop you processing food and breathing. Funnily enough they are rather vital and unavoidable things we have to do. How do you deal with a disease that is clearly out to kill you? Yet no one can see it unless you are screaming. Medication can’t do more than slightly calm it and no one has the slightest idea of how to cure it.

Everything around my body today is still reacting to whatever the trigger was. Yesterday afternoon I had to stop my work here at the PC, not just because of the pain in my stomach, but due to my left arm. It had got to the point that just moving one finger was beyond it. There was a tension within it that I know all too well. It is almost as though it has its own energy supply and although the rest of me was still running, my left arm was drained. My hand is still filled with mad sensations, from slow speed tingling to cramps, all centred on the middle finger out to my thumb. If I let it rest for too long, it starts to go what I can only call painfully numb. Nerves are like that, it isn’t until you have an illness of them that you discover their ability to produce two totally opposite sensations at the same time. Personally, I would prefer it if someone could just switch off all their ability to produce any sensation of any sort what so ever. I know that would produce other problems. Ones I probably couldn’t even imagine, but it would be nice, even for a short while.

Today isn’t going to be a good day. Somehow knowing that isn’t quite as daunting as it was yesterday. There isn’t a single symptom of yesterday that isn’t with me today, but I have a far more accepting mental attitude to it. I have heard so much rubbish over the years about fighting illness and it is totally rubbish. It might seem to work when you are talking about a minor illness. But you can’t spend every single day of your life at war with yourself. I don’t have cancer or a virus, something you can do those nice neat systems found in self-help books on. There isn’t an enemy to visualise, other than the one I see in the mirror. You can’t fight your own autoimmune system, you have to learn to work with it and ultimately let it do whatever it will. I was lucky as I learned that one early. Spend your day fighting and pushing yourself to do all that you think you should, achieves nothing. You might have a lovely clean house, but you will have a body in bits and more pain than you know what to do with, and that will last for days, not hours. I pushed myself yesterday beyond the point I should have. I should have been in bed long before 1 pm and I shouldn’t have set the alarm. I did and I paid for it all yesterday evening with pain that even my Morphine boosters didn’t touch. It’s no fun lying in bed wondering how much more you can take without calling an ambulance. Probably in reality a question that I am a long way from being able to answer. As no matter how many times I have thought it couldn’t get worse and I can’t take any more, both have actually happened.

Today I am accepting, I am ready for whatever it wants to throw at me and hoping that the truth is it throws very little. Life stopped being fair a long time ago and I am not the sort of person who is going to complain too loudly, as that is another thing that gets you know where. Like every other day, I will ready my smile for when it is needed and I will move forwards slowly dodging when possible all the bullets I know that are waiting for me and treating all the ones that hit home.

Please read my blog from 2 years ago – 19/08/2013 – Bad day, bad feelings

I seem to have inherited a sieve overnight in place of what I already jokingly called a brain, even writing is taking longer as if I don’t type quickly I lose not just the end, I completely lose all direction. So this could be an interesting post for me today if not for you, mind you it could turn out more interesting, as who knows what will come next, or how much piecing together……

What’s best to say

I expect that anyone who has a chronic illness will have well meaning friends and family who come across articles on line which claim to be either to have the cause for your illness, or a cure for it. I know they send them for all the right reasons and in the hope they have discovered something that might change your life for the better, but then you suddenly find yourself with a huge problem. How do you thank them without hurting their feelings by telling them that you won’t be following their suggestions. I have had several in the last couple of months and I am finding it harder and harder to even reply any longer, leaving them sitting with there contents running around my head in the hope I can find within it a way to politely reject their efforts. I expect that most people would think that I and everyone else with any debilitating illness would jump at the mere suggestion of a cure, well I would if it came from my GP or was backed with full medical trials. I have lost count of the reasons out there as to why I have MS, it amuses me greatly as none of the medical profession can give you any reason at all, I am sure they would be equally delighted to know there was at last a huge collection of quick fixes.

I suppose it is just like all the health information that is broadcasted by the government as to what foods are OK to eat and which we should stop eating at all, if we tried to follow them all, well everyone would be dead as we wouldn’t be able to eat anything at all. All of which doesn’t answer or give any assistance as to what to say to those who believe that it will actually help. I have tried passing on the facts that I hold to what my doctor prescribe and to their suggestions and solutions, but still the amateur physicians appear with more and more some which I enjoy reading as many make me laugh, not quite the reason and outcome they are sent for I know, but then comes that problem again, I have to reply! As many already know I do my best not to hurt others feelings or to be rude to anyone but it is getting increasingly difficult to know that to say. You would think it would get easier but it doesn’t, especially when it is often the same person still sending me more.

My chest problems were working over time yesterday, there was a background issue all day long, but when lay down it went into overdrive. In the afternoon it was the worst I had felt to date, the solid feeling was taking over my left side of my ribcage and in the lower region it changed from the intense solid heavy feeling to actually being painful. I can only describe it as feeling like a sharp bone sticking into but not penetrating, what ever lives in that part of my body. Sorry but anatomy isn’t my strongest subject and although there are pics on line, it could be either my liver, my intestine or my lungs, it seems to change site to site. Then last night the tight band had expanded to over 8 inches and it was the tightest I have ever felt it, try breathing without actually moving your ribs at all, that was what I was reduced to. It took me nearly an hour to go to sleep, which despite everything it has invented in the last few months, it has never succeeded in stopping me from sleeping for that length of time. Add in the splodge areas where there is pain for short spells, which disappears and reappears when they choose and there is the surface picture of my Saturday. Here I am now a wake for three hours and not one minute has been without a less constricting version of last night. It appears that breathing is now not just a constant function in my life, but is now a constant difficulty and pain in my life. My appointment has now been confirmed for the 17th and although I know that I will be fine until then, other than the pain. I am just so focused on what they might be able to do for me. If it is coming from my MS, as in something along the line of an MS hug, I just can’t see how they will be able to help. The biggest thing that tells me it is not anything to do with an MS hug is simple, I haven’t had a single day without it for 18 months. Personally I have no other pain that is always there, they move around, vanish for weeks on end and return. Nor have I any other pain which started slowly and mildly and has built up week after week getting just that bit worse and always getting worse never better, in my experience it doesn’t fit the traits of MS.

Off my own back I have been trying to do light exercises in the last few months, some breathing ones and some to try and loosen up my intercostal muscles. Well either they don’t work, or I am the cause of things getting worse, but I had to try just in case this is all due to being immobile, I have at least removed that possibility if nothing else.

A body filled with memory

I have a new toy! I know that a few months ago I said I wasn’t going to do this but on two days last week I found myself with nothing recorded and nothing on TV that appealed, which I hadn’t already seen. I know have my TV linked to my router and I can now access “On Demand”, although I have just downloaded my first list of programs I have to say from what I have found already I wish I had done this months ago. That is all to often the most annoying thing when you did your heals in and say no, to something that is in truth a boost to your life. In my defense I haven’t set up the WIFI, as it was so easy to link by LAN that it just didn’t seem worth the extra hassle. Does this mean I can remove the “Fuddy Duddy” tag I admitted too, I’m not to sure as without the WIFI it is still a bit “Old School”. Another ‘why’ has to be “Why do we never learn?”, just like my wheelchair that I fought against for years and was a huge boon to my life, I can see this will be too, I almost bet that I will be on my death bed still refusing to go ahead and try something I’m not comfortable with as I believe I have everything I need right here already.

I’m not sure why but yesterday I woke up with really painful lungs, as in area’s that hurt every time I took a deeper breath than normal. During the morning it vanished and reappeared after my afternoon nap, the whole evening was spent unable to find comfort as my lift thigh was generating spasms which made sitting a constant act of moving around in an attempt ease it. If lungs and legs weren’t enough there were extremely painful spasms in my right arm and both hands, to my greatest amusement the finger tips on my right hand were burning, so much so that I asked Adam to check it. I always feel cold to the touch and he like most men always seem to be over warm, but even he could tell my hands were warm to him, therefore burning to me. I have never actually found that happening so strongly, usually when my skin is burning the actual surface temperature to touch is no different from normal, as burning skin is a nerve sensation not a reality. Getting conformation makes it a notable event. Oh dear, how sad is my life that the temperature of my finger tips requires an entry in my blog. I gave up at 8:30 and piled happily into my bed, not that the pains and skin sensations went away on first lying down, far from it but I know I was asleep within 20 minutes.

I am still nightly having problems with my lungs and chest area, there hasn’t been a single night now for weeks where breathing has been as simple and mindless as normal. As always with my body it is worst on my left side, within minutes of lying down the whole left side has developed a solid heavy feel to it and the 3 or 4 inch band around the lower ribs is in place, limiting my depth of breath. If I believed that it was really my lungs that were causing all of this I would call the doctor, but it started as an extension of all the problems that I was sent to the hospital for and they found no reason to other than my MS, the two bands of numb solidness are identical in sensation, often not separated at all and forming a band at least 6 inches wide, then on other occasions there is a clear section between them only meeting at my sides and heading round into my back together. Right now I once again have two areas in my back like yesterday, that supply electric shock sensations when I breath deeply, the banding is in its lower position only and my left leg won’t allow sitting in any true comfort. I think I have spent as long writing as I have rearranging my cushions in small hope that I might just win the battle for a short time, I have never had much success in fooling myself, but well you never know.

I don’t think I would know what to do with myself if I actually manage half an hour without my body doing something unspeakable to me. The whole idea of not having pains and odd sensations is totally alien now, it has been too many years since I last stood up and just walked, without first having to sort out my balance and let the initial pain in my legs and spine settle. I know that I once could dance and run but that sounds and is just impossible now, I sometimes sit with my eyes shut and just remember how life used to be. Strangle I know that some people would expect that to be upsetting, but it is actually a comfort as I feel lucky to have those memories. It is a little like the memories I have of my son Jeffery, as the years have passed I do still cry for him at times, but more and more their is a feeling of love and comfort in his memory. From a week after he died I found myself sitting very still with my arms in front of me cradling the air, but I could feel the weight of his head on my arms and his body on my thighs, what it was I still don’t fully understand but it as though my body remembered to, that my muscles could still feel his presence. Memories of being able bodied is very much like that, a comfort and a place to go in my mind with my body remembering it to.

I have always seen myself as luck to have been able bodied, to have lived what often feels and sounds like 4 totally separate lives. My memories are rich and now are a comfort as I was lucky enough to have lived and to still be living them all. In a lot of ways I even see the life I have now as lucky, because I have yet another view of life, an experience you can only truly understand if you live it. One lifetime but so much to be grateful for.

Solo Hugging

Day 3 of an MS hug that just doesn’t want to give in and every time I think it has faded, it suddenly returns with anger. In the last year or so they have been getting worse, slowly increasing in the pain they cause and how and where that pain appears. I remember the first few I ever had weren’t that bad and started as a ache either side of my spine, a little like a back ache but in a really odd place, it would then tighten and start to fan out, more like a growing cramp in my chest than anything else I could describe it as. These days they don’t give pre warning, which may be because my meds don’t let me feel it until it is bad, I can’t be sure. But they can appear anywhere now within my chest and rib cage area both back and front, hurting like hell at their worst down to discomfort at their lightest. Yesterday I found myself stopped in my tracks several times, just breathing through the pain and waiting to be able to get on with my day. I don’t know if it helps at all to control your breathing, but it does give you something to think about rather than just the pain. When the pain is at it’s worst it really does stop you from doing anything else but alone well I can manage, but if other parts decide to spasm it is no longer a joke of any sort.

Two nights ago I was lying in bed, I hadn’t been there that long when the hugs started up again, the pain was really bad in my right lung, not the lung itself but that area, and right across the top of my ribs below my shoulders. While I was trying to relax and control my breathing, my left leg joined in followed by my right arm, when that happens their is nothing that you can do, nothing at all. Spells like that don’t last long, minutes rather than hours, but those are the times that say in your head and are the fear that appears every time a spasm takes hold of any area. They are also the times that you don’t want others to see, I was so glad that I was in bed, as you feel so useless and even pathetic. It’s not easy to explain why as I know Adam has seen spells before where I am clearly not coping with pain or anything else, but I still prefer to be on my own and to deal with it that way, alone. There is a strange embarrassment that goes hand in hand, in not being able to be in control of your own body. Everyone gets a little embarrassed if they have a dramatic leg cramp, you want to massage it move around, do anything you can think of to stop it, and do not need all those eyes starring at you, as you feel silly. Scale that up, add in that you know already that nothing will stop it before it wants to stop, and it’s not just the normal calf cramp, or stitch it’s way beyond that. People want to be helpful, but there is nothing they can do either, all that is happening is they are sharing your pain and getting anxious about you. Their fussing is well meant, but being quiet and breathing through is all you can do, and no one can do that for you.

I know from things that have happened in my life the other way round where I am the one feeling totally useless and having to watch someone I love go through pain. To be honest I would rather be the one in pain than watching, it honestly hurts less. I don’t want to put my pain on to anyone and especially not on to Adam, I love him too much for that. There will be a point in the future when I may not be able to cover it up, or have the luxury of it happening when he isn’t around, that will be soon enough. Sitting here with a burning spear traveling through and around my chest, hopefully is only visible if he happens to look at me, I can stay quiet and I do, but I know my body language or face will give it away,but I am happy to protect him for as long as I can. Love is like that.