True control

Last night I found myself sat on the settee in real pain, even though I had only taken my meds about an hour and a half before, I was in a pain that I just wasn’t able to relieve. It started in my left side, about in line with my breast and it felt like someone had shoved a rather large and sharp knife into me and they were happily moving it back and forward between my ribs. Clearly it was a spasm, I am beginning to wonder if I will ever have peace again from my intercostal muscles, it is now over a year from the first time I felt it, but feeling it was something I was having no problem with. I had earlier in the day had pain in my the left side of my neck and shoulder and of course they returned as well, with the pain spreading into my arm, appearing in the inside of my elbow and running down to my thumb. I waited and tried to find a position that was comfortable, I raised my arm by placing it on the arm of the settee, sat forward, so that I was perched on the edge of the cushion and my arm was just hanging, applying pressure, stretching my side and placing my hand on the opposite shoulder so the weight was all shifted, but failed again and again. I gave in and asked Adam to bring me one of my booster tablets, I waited just watching TV and preying that the Morphine boost would take over and I could then actually enjoy the program, an hour after taking it I was still in pain, for the first time ever it just wasn’t strong enough to get rid of it. There had been a slight improvement but slight really is the important word.

The pain was so bad that I just didn’t want to go to bed even though I was exhausted as I couldn’t see any reason why lying down was going to make the slightest difference. So I sat there right the way through to 9pm, not always able to keep my attention fully on what I was watching but slowly, very slowly the pain had eased just a little. By 9pm I had to give in and head to bed, I know wish I had given in sooner as once I was yet again lying down supported by soft pillows and comforting duvet, the pain started to settle and sleep took over as it usually does. Sleep has really become the greatest blessing in life! I don’t know how it works as years ago if I was in pain, I wouldn’t be able to sleep at all, but in the past 6 or so years my ability to sleep has risen and risen. It feels as though my body waits for that second when the pain is at it’s lowest and bang, I am asleep, once asleep I stay that way. I often wonder if it is natures way of giving me some peace so that I can deal with the rest of what this illness throws at me, whatever the reason, I am eternally grateful for it.

This morning the pain has settled, but there is still that shadow pain that is always left by something like this, what I don’t understand is why the booster tablet didn’t touch it? 10mg of fast acting Morphine, on top of the 60mg MST and 900mg of Gabapentin, should be enough to take pain away from anyone, but I am left wondering if somehow I am already getting used to them. I shouldn’t be, as I really don’t take them that often, I only get 30 every 2 months and when I got my repeat last week I still had seven of the last batch untouched. I know there is a limit to just how much pain relief they will give me to just take when I need it, without it being a case of spending sometimes in hospital for evaluation to get the levels right, I just don’t know where that limit is. My GP didn’t question when I asked for the fast acting Morphine and I guess if I asked he would probably put it up again, but then well I loose control in a different way, control of my brain. To date I only get pain like that for short periods, sorry let me correct that, I have never had pain like that, as that was the worst ever, but I only get short periods of severe pain, to date I have had a control method but I am now worried that this is the start of something new. I know that I am probably worrying about nothing but the “what if”, is always the biggest question I have for my future. I know I can’t live my life worrying about what might or might not happen, but I have been happy in the last few months not having to worry at all about pain because I had a way of controlling it, this was out of control.

I am sure that is always the biggest fear for all humans, not being in control of their own lives, or even their own bodies. It is such a small word but it is so important, especially when that control is all you have left. Don’t take that the wrong way, I know I have a million blessing and wonderful things still in my life, but on a totally personal level, control of your own body is vital. I don’t think there is anything more frightening than your body doing something all by itself that you don’t have a solution for. If tomorrow I lost the use of any limb, I would cope find ways around it, if tomorrow the eye which already has limited vision went totally, I would cope with just one, pain is the only thing that there is no workaround for, nothing you can do to cope, you are totally reliant on what medications you have and what they will give you to take, you don’t have control, the doctors do. As time goes on I know that my control of my health will become more and more out of my control, others will have to do more and more for me and that is something that I am sure no one ever want to find themselves in that position. It is somehow important to hold onto as much control as possible, to have those tablets to take when I feel I need them, not when someone tells me to take them, it’s a small thing but it is incredibly important. I see control being like a series of dominoes, all set on end all just waiting, when I loose control of the first one, the rest will inevitably start to tumble.

I know already that I am not caring for myself physically as well as I should, but the last thing I want right now is help if I ask for it, I am nudging that first domino. If my pain is that bad at times that I have to call for help, I am again nudging that domino, every small thing that changes that isn’t totally in my control, feels dangerous. Just for a minute put yourself in my position, imagine you have the disabilities I have, that you have the knowledge that your future is a long slow progression of growing pain and growing disability, wouldn’t you want to hold tightly to every shred of control you have over your life, from when and what you eat, sleep and what you do, through to medications and life itself. The future without control is a great big scary thing and a place I’m not ready to go, I guess that I just have to take small careful steps, very careful one.


Please read my blog from 2 years ago – 18/04/12 – My short term memory is called Adam

Sometimes it is all too easy to find yourself putting things off, letting yourself be sidetracked, just taking a second to put the dishes away before…., empty the bin then….., you know. We all know. If there is anything that has to be done that you don’t want to you don’t do it until you have to. Well, I have added a new pony into that circus tricks. I have actually caught myself performing this trick and it amused me at how we adjust and utilize change.

It’s a simple trick and yes it starts with a deliberate side track but follows with the joyous forgetting, I was deliberately trying to trigger my short-term memory to forget. The real bummer is……