Sometimes you find yourself doing something while all the time there is a very large question mark hanging over your head. Like just now, in fact, there should be two question marks not just the one, firstly it’s breakfast time and I just had chocolate cake for mine, which is the reason for the second, as ask me and I will say I don’t like sweet things. I have never totally understood why it is if I have a choice of something sweet and something savoury I will take the savoury always, but show me something sweet that is special, not just a biscuit or a bar of chocolate, I will happily accept it but by the last mouthful, I will be wondering why I put that in my mouth? I know that humans are hardwired into eating what in our modern lives we don’t really need, excess fats and sugars, after all, time of famine isn’t really an issue in the western world, but even when we don’t really like the taste that much? It doesn’t make sense. In many ways, it was that same problem that I was grappling with yesterday, doing the opposite to what we are hardwired not to do, is hard, just as hard as not doing what we are hardwired to. I did have to take a booster pill yesterday as the pain levels had risen all on their own, once they had kicked in and actually taken my pain levels below normal, I took the opportunity to try and stretch out my diaphragm and to gently exercise the muscles that like to spasm the most, just to see if they did later on in the day or even this morning show signs of improving. Unfortunately, there doesn’t seem to be any difference, I think my findings of the day before were simply chance rather than something that might actually help. Having said that, I am going to try whenever my pain levels are artificially low, to take the opportunity to gently exercise some of the muscles I wouldn’t consider doing anything to, as the longer I can keep them supple the better.
I am really not having the best weekend, the pain levels have been flying up and down but following the mad session the other day, I really don’t feel I have anything to complain about, well it could really be a lot worse as I now know. I really hate it when my body goes out of its way to just show me how intense it can make my life, to be honest, I would really rather be in total ignorance as I once was years ago. Every time it reached a new height I used to think this is it, it can’t possibly have anything worse in store for me in the future, I no longer think that way at all, I have learned that it can truly always get worse. I have also learned that no matter how bad it is, I can also survive it and life will go on, as it always settles down and it always returns to a livable level. One of the problems when it comes to writing about pain and its effect on me is just that fact, we all have our own levels and our own concept of just how much pain our bodies can produce and we can actually live through. For me to describe what I am feeling, all I can do is put it across in my words, but if you have never been close to what I am describing, what you will read will be totally wrong. Those who have been through worse will be quietly smiling to themselves, in the knowledge that I still don’t have a clue as to what the future holds and those who haven’t reached this point, will think I am exaggerating or a wimp complaining about what they live with every day. Pain is personal, anyone who has watched several different women on TV given birth has seen that in action, some make hardly a sound, others scream the place down, yet logic tells us that what they are feeling has to be within the same range, yes I know there are variables, but they are still within a certain range. Personally, I know that I very much do feel pain, but I am not a screamer, the pain I feel and the pain I show are two very different things but usually only once I have experienced that level once before and not died. I believe that it is fear not pain, that makes us either a person who grins and bears it or a person who shows every single second of it and there is one other factor which I know changed my reactions, being responsible for children. Once you are a Mum or a Dad or even a carer for a child, you learn very quickly not to show these things as if a child sees your fear, they panic, so we learn to act and it is an act we never stop performing and acting calmly, actually makes you calmer.
I know when I am writing about my pain levels that I often land up noting the amount of painkillers it took to control it, my reason for that is above as I think it gives a better picture of the levels that I am feeling. Most of us know how much it takes to control our own pain and by adding those levels into my post, well I hope that it gives a fuller picture of what is happening to me. Most of us also know that some drugs can cause some odd side effects, I was warned when I first started taking Morphine on a regular basis that some people find that they have very vivid dreams, it was something that I brushed aside and didn’t have the slightest problem with when I was just taking the standard maintenance levels. Every day I know take 70 mg of slow release Morphine twice a day and I have no problem with that at all, in fact, I had totally forgotten the warning I was given and it wasn’t until yesterday that the memory finally managed to get my attention. In the last few months, I have been taking booster pills of 10 mg of Morphine whenever the pain is too bad to handle, normally I don’t take it until I really have no other option. I have what I suppose is a fear, a fear that I will have to raise the levels of the maintenance level sooner rather than later just because my body has become used to it, the doctor doesn’t seem to have a problem with prescribing it for me, as I said it’s a personal feeling. For the last few weeks, I have been having the maddest dream, which for a person who normally doesn’t remember their dreams is a major thing to be able to say. I found myself in bed yesterday afternoon dreaming that I was in bed asleep, not in this house, but in a series of houses that I have lived in, in the past, or that I have dreamed up over the last few months. The dream was real, I mean really real and I can remember every mad second of it right down to someone walking over the gravel path outside my window, only possible in Aberdeen, then being aware the house was warm and blaming it on the storage heater, not the one in this flat, but the one in the flat I lived in when I met Adam. I was all over the place and when I pulled myself out of it, I for a second had to sort my thoughts before removing my sleep mask as I didn’t know which bedroom would be there when I opened my eyes. Vivid was an understatement, it was actually rather disturbing and took me a little while to settle back into reality. When I did, I started to realise just how many vivid dreams I have had lately and that there was a bit of a pattern showing up. The recent disturbed nights and daytime naps, all matched up to my Morphine levels being higher than normal in the previous 12 hours and it was then I remembered the warning. It is something I am going to keep a note of and just double check that I am right, as if I am, well I have another reason for not pushing up my levels of Morphine without a great deal of thought. Sleep is something that is very precious to me, I may need to think twice about do I really need that booster, or can I manage without it. Although my dreams have been vivid and disturbed my sleep, they haven’t been disturbing, the odd one has left me wondering for a few hours what on earth it had really been about, but hopefully I now have the answer.
Everything about chronic illness is a balance and it is up to us to find out what that balance is and how it works for us, no one else can possibly do that for us as it is just too personal. It causes us to spend a lot of time working both with and against what our instincts, logic and our knowledge of ourselves, our conditions and our medications. Life has ceased to be simply in any way what so ever and I doubt that it will be ever again.
Read my blog from 2 years ago today – 26/04/13 – Destroyed in 600 seconds
It’s 9:50 and for the last half hour I have found myself struggling already to stay awake, retreating to bed feels like a wonderful option, but one clearly I can’t take this early in the day. When I woke yesterday afternoon after once again taking a longer nap as I did the day before, I struggled until Adam came home at 7:50pm from work, as he was once again had taken the…….