Finding the words

Well it has happened at last, Glasgow has had it’s first fall of Snow! I peaked out round the curtain this morning as Adam said it was snowing before he fell asleep, it clearly had lasted a while as it is more than a covering but already it is turning slushy. The cold that hit me on just moving the curtains was enough for me to shut them again quickly. It never ceases to amaze me how much cold air a simple curtain can hold behind it.

I seem to be just a little more awake today, I’m not sure why I was so blanked yesterday, it was almost as through the quantities of my meds had been raised and it didn’t change at all over the day, sleeping in the afternoon didn’t effect it and I actually didn’t sleep my full two hours, the pain in my right side ribs disturbed me. Correction it isn’t a pain, I really need to find a better word but to date the best I have come up with is a pressure but I don’t think that either pain or pressure gets the feeling across. From the end of the last rib that attaches to my breastbone, upwards for about 3 ribs there is a feeling as thought there is a large fist inside them, pushing the ribs outwards. Pushing my fingers into it from any point I can I can’t actually feel it with my fingers at all. The more I play around with it, the more it increases after my prodding and pushing has ended, but there really feels from the outside as though nothing is there at all. I have also noted if I have been playing with it I then also feel the pressure in my back as well. When just sitting here it is a discomfort, one that makes me sit more upright in an attempt to ease the pressure, sometimes when I stand up there is sudden pain, that passes in seconds. Finding a single or even a couple of words to let others understand has evaded me.

Putting descriptive words to thing that you feel so that others can then grasp how they would feel is often hard, especially as I know there were ten of us here at the minute with an identical pain in their leg, when asked there would be ten different ways of describing them. I, because I write, am more used to vocalizing how things feel, but I can appreciate fully the problems that both patients and doctors have when it comes to understanding what living with chronic pain is really like. I had an idea last night of updating a post I did months ago where I started from one end of my body and traveled the length laying out the problems I had. Although I have found the link for you, I have made a point of not reading it as the purpose of doing such an exercise would be to spot the differences, to see how things have changed. Actually having just written that I think it is a good idea and one I will carry out tomorrow, could be very interesting.

I once again have the house to myself, I don’t know how many Mondays Adam has booked off, my memory again, but I do know that he will be here for several days during February. I expect it happens a lot that people have holidays left they have to take before they loose them. I used to take nearly the whole of December off each year, not being one for summer holidays, I was always happy to be in work when most needed. At first when I found myself here with no job it did feel a little like an extended holiday but after a few days that wore off. I mention this today as I realised that since I had accepted no one was going to give me a job, that I haven’t even been signing into my email, slowly as the world of work has moved further away from me I also seem to be moving myself away from it. I found myself thinking about it when Jake asked me to help him with his job hunt, I hadn’t realised how we protected ourselves without even knowing that we are doing it. Not opening my email had become a way of not seeing all the email accounts I have for job application, still filling with contacts from agencies. I know that I need to go through them, stop the emails of possibly just close down those I no longer need, but that take admissions and ones that I’m not sure I am yet ready to take. Silly possibly, but if I don’t think about it, it isn’t happening, and for now I seem to need to be head in the sand for a little longer.

The heart of a spasm

Just before I went to bed last night I was gripped by extreme pain, pain that I had to cover up as I knew without doubt that Adam would be on the phone getting me an ambulance that I was totally sure I didn’t need. The pain in my chest that I haven’t now had for several weeks was back and it was as bad as ever, because I have had it several times before I knew I wasn’t having a heart attack, but I was having problems because of it in taking a deep breath, I wanted to cough for some reason but because I couldn’t fill my lungs I couldn’t. It didn’t last long maybe 2 or 3 minutes and started to clear just after the end of ‘Holby City’, I sat for a couple of more minutes, then headed to bed. Not long after I lay down it happened again, truly acute pain in the middle of my chest, first spreading up into my armpit and through to my back and my entire left lung cavity. I couldn’t really tell, anymore than I have been able to in the past, if it was actually the intercostal muscles, my lungs or something else, but I am sure it isn’t anything to do with my heart, which I know would have been Adams worry and I knew if I told him before I went to bed he would have been awake all night worrying, so I had said nothing. Over the years I have become very good at not reacting on the surface as I know how much he worries. I wouldn’t have believed how much pain I can take without a word, just a few years ago I would have been like anyone else, I would have put my hand to my chest and at the very least winced in distress. Now I don’t let anything show, Adam worrying and fussing would have change nothing about what was happening. I know he will read this and be angry I disguised what was wrong and simply took it in silence, but I hope he understand now and sees that I was right, there was nothing to worry about.

I am guessing that it is some sort of spasm as it is sudden, an incredibly sharp but crushing pain that tenses, holds and then sudden release, just as spasms do. Sometimes it covers both sides of my chest not just the left side and often it goes up into throat and shoulder bones, leaving behind the shadow of the pain for hours after. This morning when I was making breakfast it happened again, but this time the worst area was much higher, almost as though it was some type of heartburn, but only because of where it was, there was no burning or feeling of acid reflux at all. When it is high like that I can break it’s hold, all I have to do is swallow a mouth full of something, the swallowing action makes it let go. Right now the upper half of my body is totally in the shadow state, everything has a light pain or bruised feeling, but as long as I keep my breathing shallow and I am just sit here, I am fine, moving around aggravates the pain as any bruise would react. The pain is identical to the pain I get in my guts, identical in pain levels as the spasm on both side below my ribs the other week, the only difference is that this doesn’t last nearly as long. My guts can lock up for 20 to 30 minute, let go and return several times in a few hours, so far this hasn’t done that and the worst level of pain last no more than 2 or 3 minutes, taking longer to fade once it has let go. It hadn’t occurred to me until last night that they may be connected, well the two areas have very different functions. For now all I can do is monitor what is happening and wait to see what happens next, but I guess this is something more to tell the consultant, although she is a Gastroenterologist Consultant, with the similarities it may explain what is going on at least with the sharp spasms, if not the pressure and discomfort.

I suspect I am far from the only person who has learned to cover up what is happening to them, not to deceive, but to protect those we love. Adam knows that I don’t tell him everything, or about any of my falls unless I have to, but it isn’t that I don’t want him to know it is that I don’t want him to worry any more. I know how much he worries about everything and if I were to go into details of everything when they are happening, he would panic a lot. Since he started reading my blog he has learned much more than he ever knew before, the difference is though that by the time he has read it, it is over and I am clearly still alive and functioning, all without him stressing once.

The hugs are back!

MS Hug

Yesterday afternoon the worst MS hugs that I have ever had started, I felt this incredibly sharp cramp in the left side of my upper spine and that was the beginning. Hugs are basically a spasm that effects the fine muscles between your ribs, for me and many others it usually starts just as yesterdays did and they spread form there, I usually get them right round me but occasionally they are one sided and as always it is my left side. From it’s start point it spread up and down my spine for about 3 inches and them right round to my side stopping just to my front, not making it all the way round but for some reason far more intense than I have had it before. By the time Adam came home I was getting bad tempered with it, spending several hours with a pain I would have ranked from between 8 to 9, unfortunately does get to you and I get snappy with it. Add into that the fact that at almost the same time as that started, I also started to get really bad low abdominal cramps, bad ones. So the second half of yesterday wasn’t the best to say the least. I just so grateful that the hug didn’t continue to make it’s way round the whole of my upper body.

All afternoon I had tried to relieve it and find some relief but without much luck, it wasn’t until the evening when I gave up as I couldn’t take anymore of it, with my concentration broken totally by the pain, I couldn’t manage to do anything of use or fun on here, so I gave up and went and sat on the settee feeling rather sorry for my self. I tried several times the process that usually helps to break it were I compress the area as much as I could throughout the afternoon, but I tried again by pushing myself into the arm and back of the chair and it started to release, bringing the pain levels down but not gone. I guess that because I was applying pressure over nearly all of it, at the same time rather than just what I could cover with one hand it made a difference. I am no doctor but there must be some sort of medication that would make a difference to that type of pain. Nothing I have ever tried has made a difference and I am on the highest dose that they will give me of the anti spasmodic drugs. When pain is this bad and growing all the time, it makes me really wonder about the future. For now I can deal with it as I know it always goes away, but I have noticed that it last longer and is more intense than it was 3 or 4 years ago, so where will it be in 3 or 4 years from now?

Today I still feel ill and I have the constant pressure feeling under the right side of my ribs and across the front in a narrow band which I think is all from my gallstones, but there is a mild hug still grumbling where it was yesterday, how the rest of today will unfold I don’t know, but I don’t want another afternoon like yesterday. Pain is the hardest thing in the world to live with, I would rather be throwing up than sitting in so much pain that I don’t know what to do with myself. When the pain started yesterday in two areas at nearly the same time, I started searching the web and found one site that said a hug could actually go from your upper chest to the base of your spine, which made me start to think about the pain I have had recently in my pelvic, could it also be an MS hug? That is a question I will be asking the MS nurse when she arrives on Thursday, the internet says yes but the internet says a lot of things and I just want to check before I just bundle it in. But it is still one of those questions that I don’t know if I really want the answer to, as if it is my MS there will be nothing that can be done about it, I always dread the it’s your MS answer, I remember being happy the very first time I was told it was MS but that is long worn off and I hate hearing it now. How much pain is one person meant to be able to put up with, without an real answer and a real solution?