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.

More Christmas

Last night Adams family came round for a couple of hours to swap their presents and ignore my wish for no presents. I know people find it a strangely hard thing to do, but it made me fell terrible as we just can’t afford to give anyone anything. So there are now presents sitting on the dinning table waiting to be opened when ever Adam gets out of bed. He briefly said good morning and rapidly went back to sleep, I cooked and had my breakfast as we always have a cooked breakfast on Christmas day and Adams is sitting in the fridge waiting for him, when he rises from his sleep to cook for himself. It is normal on Christmas day for me to drag him out of his bed so that we can open our presents together but without all the prep I would usually have put into today I don’t mind if he sleeps. I will sleep the afternoon out and then between us we will cook dinner as the planned check the times of all the bit’s never happened and as Adam doesn’t actually know what is there to be eaten today it will have to be a joint effort.

Since mid afternoon yesterday I have had a stitch, just like the ones I used to get as a child when I had been running too long, but unlike those, this one hasn’t given in and hasn’t gone completely at all. It eases off for a while and then returns, just as it was before when I move at all. I would be be fair to say that it starts slightly higher on my side than a normal stitch but other than that it’s a spasm that wont let go. This morning it has eased a little but has what I would describe as a threatening feeling, pain or not I am enjoying my usual Christmas treat, the thing that says this is not any other day as I am drinking Bucks Fizz. Alcohol in the morning can only mean it is Christmas or New Year. To call it Bucks Fizz is wrong as Champagne it’s not, just cheap Calva in it’s place, drinking on my own is normal as if I didn’t I would never taste alcohol ever as Adam stopped drinking years ago, drink was an all or nothing substance in his life and he chose nothing.

If you don’t have a large family around you Christmas is a strange time of year, apart from the tiny changes this could be any day of the year. Even the TV somehow has managed to be non Christmas this morning. Normally there are loads of feel good shows on, but if they are there I can’t find them. So I am quietly put my time to use on line as always, and hope you all are having a great day.

Dreaming of Cleaning

I was talking to Adam a few days ago when it came to mind that when I had all my pain problems and fatigue that the doctors either ignored or put down to depression, the one thing they all did was to put me on to Amitriptyline, in the 80’s that was the favored drug for depression, these days it is used as part of the pain control system and that is why I am on it now. I can see now why they kept telling me I was depressed as once on the drugs I felt better, I felt better because the pain was under some control, not because they had cured my non existent depression. It was one of those light bulb moments, two thing clicked together in my mind and suddenly made sense. Things like that happen from time to time, look back isn’t something I do a lot, when I am on my own it is more frequent that the past appears through conversation, or due to a TV program, but it is always relief to find an answer even 20 or 30 years later.

Time and time again people talk to me about living with pain and how I manage it, and how I feel having to live with it. Strangely in my quite moments it isn’t the pain that I focus on, it is my inability to do what I want, when I want. All the drugs I take do help a lot with controlling the pain and it really is a fact that most of the time it is a dull ache, unless the spasms start and them I know all about it, just as it was years ago before they gave me my first cocktail. Drugs help with the background or constant pain if you like, those sudden attacks, and I use that word to it’s fullest, there is nothing that helps, or at least not that they have given me. The majority of the time I live with pain that I can’t get rid of, but I will say with total confidence that without the drugs, I doubt I would be writing, as I doubt I would be able to do anything. As it is now, well I can live with it, I just wish I didn’t have to.

Pain is only part of my life as I said to be honest if I could bring back something I have lost it would be my mobility and fatigue that I would fix first. To have enough energy and ability to just clean the house, even slowly would mean the world to me. If I could turn the clock back even 5yrs, when I was already housebound, but I could do all the daily things I needed and wanted to do, that would be my greatest wish! I know most people dream of getting rid of the housework but we are all different and that really is my wish if I found a Gennie. The less you can do the more the small things become important, I know some will think I would be more likely to have said that I would want to be able to get out of my house, but that involves so many small wishes, to get to the final big one, it is a huge wish, so huge that I would in fact be wishing to be totally well again. A nice thought but not one that will ever happen, small steps are more realistic. I am not sure what the pain clinic will be able to do for me, but pain or not, it won’t be enough to give me back my freedom, as pain is not the only problem, it is just one of many.

Getting ready

Trying to get through the first day of this silly diet that I have to be on for the endoscopy on Friday. When you live on a totally different diet and open the fridge to see melons, satsumas, seeded breads and salad, all that can’t be eaten, is horrid! For my breakfast I had a wrap with nothing on it, that was all I fancied eating out of what was a possible choice. There is nothing like temptation to make you feel hard done by, lol. I will really be happy when Friday is over regardless of what they find, I will hopefully be able to open the fridge and eat, rather than see it as some kind of torture.

Over the last couple of weeks I have had something new going on, I didn’t mention it to the Doctor when we saw them at the hospital the last time I was there as it had only happened once, but I now keep getting these terrible spasms, as though someone has stuck their hand into me just below my breast bone and grabbed everything there in a vise like grip. I doesn’t cause any pain anywhere else, but it increases that sensation of pressure that I have under my ribs. It doesn’t burn like indigestion, so I don’t think it is my stomach, once again it is more a crushing of my upper intestine. On Monday it was there most of the day in a much gentler way, it never cleared, the sensation was almost as though I had a tennis ball sitting in that position, doing nothing but getting in the way. When I eat it increased and on two occasions it was intense for about half an hour. Yesterday there was no pain or discomfort at all that I remember but today it is just as it was on Monday, a constant gripping pressure. I guess that I will have to mention it on Friday before the Endoscopy. I think I said it before but I really feel as though I am slowly decaying and falling apart, some days I wish they would just get on and fix it and on others I wish they would just leave me alone to decay quietly.

My tiredness isn’t lifting at all either. I think in the past 3 weeks I have only managed on a couple of occasions to stay up to 10 o’clock, I’m so tiered that even 9pm is pushing it. I hate it when I need to sleep this much as I hardly get a chance to spend any time with Adam. He seems to be home for just a few minutes before I have to sleep, it isn’t much better at the weekend as he has always slept away the mornings so I am going for my mid day sleep at about the time he is getting up, so we really only get from 4:30 to 9:00pm together, then once again I am asleep. When I am like this I feel as though we are just passing each other occasionally in the same space.

I realised the other day I am heading rapidly into my first anniversary as a blogger, it was just before Christmas last year when I wrote my first post and looking back at it I can’t believe how bad it was. I am not kicking myself for it as well we all have to learn and writing may be something we do daily in notes, emails and so on, but it is no comparison to writing what may be read by total strangers and you have decided has to come from your heart. I so often hear from people that I have been incredibly brave to share all of this but I can’t see it that way at all. I suppose we all judge and apply different standards to different things, but I have never made a secret out of any part of my life with those I know, so expanding that wasn’t hard. The hard bit is finding the words that explain everything in a way hopefully everyone understands. When you are talking about something personal, which illness is, you use the word that make sense to you, that doesn’t mean anyone else will know what you are talking about. Strangely I although hard, I have enjoyed doing that, it has been my daily mind work out if you like. I’m going to have to check the actual date, well it is a writing milestone if you like. I actually thought when I started that it might be a bit of fun for a few weeks, I didn’t realise what I was starting.

Not just nerves

I am having one of painful days, not scream and double up in agony, no the subtle and more where you down by the minute pain. I can’t remember when I last had a day free of spasms anyone in the same room can see the cringe and grab of a bad spasm but not all of them are like that. There is a much more gentle in it’s approach spasm that grasps a muscle and holds, to describe how it feels I would say it is more like someone has grasped it with their hand with a constant pressure that takes at times hours to subside. That does sound as though it isn’t worth paying attention to, but you can’t ignore it, while sat still, it burns as though just that bit too close to the fire and tensed enough to feel tight, you can’t relax it and without you noticing the tighten spreading it’s effect onto those near by. My right calf, the main muscle at the back is now in this gentle spasm, along with the muscles running on the outside of my shin, neither of these can I free back to there normal relaxed condition. It’s knock on effect is along the outside of my right foot, slowly the muscles keep tightening and lifting my toes off the floor, but my foot I can relax I can setting back flat to the floor and release the tension, ignored for a second and the lift starts again, leave it to tighten until the pain starts and I again fix it’s position. The spasms that I can’t release are in both lower legs, slightly different muscles, my right outer thigh, the back of my left thigh and my right forearm, add in the knock on tension that never stops and you will understand the fatigue that builds over the hours.

With that picture building in your mind, now imagine trying to stand up and walk with muscles that are frozen, that won’t react to balance changes that we all make every second as we move around with out thought, forcing other muscles to take over the weight and the work. I know that some of my leg muscles have become almost ridged over the years a I can’t remember having been able to walk normally for years, I have is a stiffened gate which with my body trying to compensate with others is were the drunken movements that are seen in MS. The damage in my left leg has lead to my left foot dragging slightly, what is called foot drop, it is a hard motion to explain as it isn’t just a drag it is a though when your foot is going forward the outside ankle bone and top of the foot, is leading the foot rather than your you feet being level to the ground and you toes leading. I hate to think what I would look like if the other one joins in, my left foot was one of the first visible symptoms, announcing to the world there was something wrong.

Spasms can be crippling at there worst, exhausting at their best and worse still they become normal. There is no escape from them and their gentler side is part of what has to be lived with. I have tried medications for them and I am on Gabapentin 900mg three times a day to help with the pain and the spasticity of my muscles so how I would be without it, I am not sure nor do I want to find out really, I think I am past the experimenting with my drugs well the ones I have been on long term. Spasms are not totally confined to your legs, there is one more to add in, as I believe that is what it is, well it really feels like one, and like others it can be mild and just uncomfortable or it can be painful, the MS hug. The link will take you to a post dedicated to just that strange phenomenon. Although MS is an illness that the nerves are the route of the problem some somehow forget nerves are connected to things, and anything they are connected to are affected.