I know that there will always be good days and bad days and that I will never have any control over which happens when, but what I would like, is to just smooth out the extremes. Yesterday my pain was more or less out of control, I twice reached for and took a booster pill just to get myself set at a level that I was comfortable to go forward with the rest of the day. Yet just earlier in the week I was feeling good and able to get on with life without a second thought about taking more meds, tablets which I now have stashed in three places around the flat. One with the rest of them in the kitchen, one in the bedroom for the night time as I have woken many times in pain that made it hard to deal with just getting in and out of bed, putting on a dressing gown and the walk to the kitchen, the final ones here at my computer. I have had the three sets now for over a month, at first I wasn’t happy about bring meds into the living room as I am awake here and surely able to make it to the kitchen to fetch a tablet, but that was until I had a really bad day and I saw the madness in putting myself through more when I could have the answer beside me.
I am quite sure that many people will see the logic in having them where they might be needed, but I also see it as making it too easy to take them, a bit like having food sat in reach, you’ll eat it even if you’re not hungry. Tablets where I can reach them, might just tempt me to take them when things just aren’t that bad, as I know they are the answer to most pain. I frequently argue with myself over the should I or shouldn’t I take a tablet or not, somehow I feel I have to justify it to myself, that I have to be sure that I really can’t deal with it any longer. On the other hand, what is the point of putting up with pain that I can get rid of, the arguments go on and on, not just justifying it, but trying to take into account the fact that by giving in, I am building up my immunity to their effect. It’s also an argument that I have gone through here many times, but I have never manage to get an answer that I am totally happy with, never find an answer that I can’t pick holes in, or create a valid counter argument to. If I could just get rid of the bad days, well I wouldn’t have this turmoil as the whole subject just wouldn’t exist.
I suppose that life is just one long argument as we try to work out what to do and what not to, even if the argument is just coffee or not, it’s still an argument of pros and cons, facts, wants, needs and desires, nothing just happens with ease. I wish I could just wake up one day and get to the other end without putting myself through some kind of inquisition over what I can and can’t do that day. It’s one of those hidden parts of chronic illness, constantly working out what you are physically able to do at that second and what you may just have to put off to another day. Every part of my day is spent assessing my energy level, pain levels and mental clarity, all of them determined how my day will be spent. I have to group activities in a sort of energy saving strategy, planning forward always to just get to the end point, when once more I can fall asleep and escape for 11 hours before I have to start again working on a new day.
I can still remember having freedom, not having to think about anything just doing what I wanted, when I wanted, it isn’t just like another world, it is another world. Just being able “to do”, to stand up, go where I want, return as many times as I need to and not have to think even once, “will I make it”. I remember not having to walk close to walls, not having to have my arms ready to catch me, just in case I fall. I remember not being tired all the time, not sleeping more than half of every day, not missing life because I am cut off from it. I remember it all but that all it is now a memory, I can’t go back there, even for a short time as I know the result of overstepping what this illness will allow me to do. Nothing just happens, everything has consequences, true to all life I admit that, but well mine it is one a microscopic scale, everything has to be micro managed. Push the monster even gently and it shoves back with all the force it has.
I have learned the hard way, as most people do, that if you want to have any quality of life, well you just have to work with it and once learned, life goes on, “but not as we know it”.
Please read my blog from 2 years ago today – 16/03/12 – The return of Rehab
My call to the Rehab team was answered yesterday afternoon by a visit from the nurse, luckily it was the same one as last time so I didn’t have to go over everything again. I was more a case of bringing her up to date and discussing what may or may not have been causing the problems of last week. As always I found that at the point she left we had achieved yet again what I really didn’t want, I am about to start taking even more drugs. Two are to have their doses increased and I am to add yet another one into the cocktail.
On the Breakfast News last week I remember them talking to a lady who had a chronic condition, the name of which I have forgotten, what I do remember was her complaining that she had to take 3 tablets everyday…..