During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make life better for so many people, to then receive a tweet from an able bodied person telling me to stop “whining and move on”, especially as it was in reply to a tweet which read “If you can live with #CHRONICillness you can do ANYTHING – We’re not #disabled, but enabled”. I laughed at first as I found it ironic that a positive tweet could be seen as whining, I answered their tweet and told them that that tweet, was my reason for being on twitter and maybe they might understand if they read my blog, at that point they unfollowed me. I did actually half expect that reaction as she was showing totally something I had discovered myself before I was housebound, some people, not all, but some are simply intolerant of the disabled. Unfortunately no matter how anyone tries they are a sector of this planet’s population who educating would need far more thought and innervation than I believe I could supply ever. Unfortunately, I have never been known for being subtle, changing their opinions totally without them knowing it is happening, just isn’t my style, I can manage the positive spin, but disguising it as a sneaky something else, it outside my abilities.

Overnight the clocks were turned back, the official end of British summer time. In theory, that means an extra hour in bed, but theories don’t always pan out, after my normal 11 hours sleep, I woke up needing to go to the loo and awake. This, of course, means my day is now going to be an hour longer, that is if I can stay up until 9pm, but I fear that I will flack before that. Even last night, which is my favorite TV night of the week at the moment, “Strictly come dancing” and “Dr Who”, I was from about 7:30 onwards wanting to head to bed. If there is one thing that chronic illness doesn’t respect in any way, it is what makes us happy, I would actually go as far as to say that it goes out of its way to spoil anything it feels like fun. I had only been settled on the settee for about 10 minutes when my body decided that pain in my left side might just be needed. It was the type of pain that simply means that there is no position that you can sit in for more than a short while before it forces you to move again. I am more than used to pain in my arms and legs, they have been part of my life now for so long that I doubt even Adam knows when it is there at its normal levels, yes if I get a peak, but at normal levels no. The longer you live with pain, especially after years of being told that there is nothing wrong, or that I was just imagining it, you learn to cover it up and to act as normal as those around you. I managed my cover up act quite well until around 8 when he started to give me sideways glances and eventually turned to ask if I was OK, as always I said yes, even though his look told me he knew the truth.

Once I did make it to bed I had a real problem, I was feeling terrible, to the point when I stood up to head to the bedroom, I wasn’t totally sure that I was going to make the distance. I have never fully understood what it is that makes me feel like that, or how it is that pain and tiredness is translated by your body into making you feel ill. I am sure there is some medical explanation for it, but it happens and when it does, just like everyone else who feels ill, you want to give in and sleep, the pain in my side though had other ideas. Once I was laid down it started to spread and as always the pressure started to build in my chest, I lay there for about 10 minutes but knew that this was another night that I needed a morphine booster pills. I find it so maddening that you can be exhausted and past just ‘wanting’ to sleep, yet there I am having to take a pill, just so I could. Tablets are part of my life, as they are for too many of us, but despite years of taking them, I always kept questioning what they do and what I really need as nothing would please me more than to be able to reduce my handful’s by even just one table per round. I used to really play around with them, stopping the odd one here and there, it was only last night when I felt so annoyed at having to take one, that I realised I hadn’t been messing around with them for nearly two years. The more I thought about it both last night and this morning, I have worked out that the change happened when they eventually gave in and put me onto Oxycontin and then onto MST. I honestly haven’t missed, or purposely not taken one tablet since then, the only thing I can put that down to is the fact that at last, they have me on meds that work. I can only guess that the reason I kept switching them around, stopping a starting different ones, was quite simply because of what I kept telling the doctors, they weren’t doing what I needed, to have my pain under control, now that it is, normally, I am content to swallow whatever they give me.

I fully understand that doctors are cautious about dishing out high-level painkillers, but surely there should be a list of conditions where the facts are that pain is a significant factor and that people who have those conditions should be listened to more when they say the drugs they are on, are not working. Every time I saw my Neuro after my diagnosis I was telling him the same thing, I am in constant pain and the drugs are helping, but not holding it at a level I could live with. Every time he made a small tweak and sent me off for another year, yes I did say year. It is one thing living with pain at a background level, it is another living with it at a level where it stops you functioning with only annual opportunities to get it adjusted. I did try to get my GP to do something for me, but his answer was always the same, that he didn’t know enough about my condition and that it was down to my Neuro to prescribe the correct drugs at the correct level for me. All that suddenly changed when I was put onto Oxycontin, then suddenly he was happy to talk about what level I needed and what drugs were best for me, he was the one who changed it to MST and without any hesitation increased it when I asked him to and even prescribed the booster pills for me. That change I am sure was brought about by the fact he was now dealing with drugs he knew about, but I am sure that right now there are others out there fighting to get some peace from the pain and just like I was getting nowhere. It is a system that like so many other things is broken, we are the people who know best how our bodies are reacting to the drugs they prescribe and I honestly felt for years that all the decision were out of my hands and how I felt, didn’t really matter.

Please read my blog from 2 years ago today – 26/10/12 – Assessment 

Sometimes in life, it is good to sit and just reassess where you are going and what you have done so far. All too often it is one of those things we don’t do, it is all too easy to not really think about life but just keep going, with the odd grumble but no action. I know that I never planned for the distant future, in fact, I didn’t plan past the next payday, as that was how I measured everything. Was there……