Drugs, right or wrong

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……

Who am I

Unbelievably I am still locked out of my Twitter account, despite contacting their support team nearly 24 hrs ago. On the good side although I can’t interact with my followers or return the follow of my new followers, I am still able to send out everything through the scheduler, so to the majority it will look just the same as usual with none of my normal content missing, but I hate not being able to not interact even by clicking the “favourite” button. Despite getting wound up about it for the first half hour, I then just told myself there was nothing I can do but wait and wait is what I have done, plus send another email to them this morning to let them know it still isn’t working.

I was supposed to be at the dental hospital this morning, but for once, one of my minor wishes has come true. Thursday morning was the last time I had any pus on the back of my throat when I woke up, after that it was dry, there was still a tiny white dot there on Thursday but the swelling was going down and things did look better. Yesterday afternoon, I declared the ‘Thing’ dead! Two days of nothing bad happening and the fact that although I can still feel some tiny lumps, scar tissue, they are actually so small that I can’t actually see them. I decided that I was going to look really stupid turning up to show them nothing and that the best thing to do was just cancel the appointment and the ambulance. I actually cancelled that yesterday, as I expected with it being a Sunday I simply got an answer machine and a load of buttons to push just to get there. Adam was here and he said that it was the same when he booked it, clearly it is a new system that has been set up in the 18 months since I last used it, but I can’t help thinking that it is a really bad thing. I know from my job, as I was responsible for the programming of the switch, that the use of these selection menus is great for call centres as it means people get to the right person and the time being spent passing customers around it reduces most customers stress levels, especially useful with it is someone who wants customer services. Where it falls down is with the elderly, many find them difficult to listen too, due to lack of concentration and poor hearing, they also are inclined to panic about hitting the wrong button, then do. The patients transport service is set up to take people to appointments who are unable to get there any other way, like me, I need a stair-climber to get down to street level and in some places to get me into the building where my appointment is. The majority of their passengers are the elderly, the very people who find the whole thing too difficult, I have to say that my concentration problems does at times mean I find them just too difficult and hang up, there could all too easily fall through the net and not attend the appointments they need to.

Our phone just rang, I was shocked to see the display saying it was my doctor calling, the hospital had phoned him as I had cancelled the appointment, they seem to have decided between themselves that I need to be seen. He put it along the line that since I hadn’t been to a dentist since I have been housebound, that it might be a good idea to at least go for a dental check-up, I did feel rather ganged-up upon, so I have agreed to go but it needs to be in a couple of weeks time so that we can make proper arrangement with Adams work and so on, rather than this rushed last minute affair. I guess I should have just gone today, but I still think it will be a waste of everyone’s time as there is virtually nothing to see any longer, I do have to agree that I need my teeth seen to, as I have managed to break two in the last seven years and I know that one at least will land up being pulled as there isn’t much there for anyone to work on. I guess this weekend was doomed to be one of those things, just not going the way that I expect them to go.

It is one of the odd things that I have noticed since I have been ill, I no longer deal well in any way with being told what to do, even if it is done nicely. I know that could be for several reason, firstly and most likely due to the damage to my frontal lobe, that causes you to react to things in ways you would never have done before, it controls personality expression and our responses to any situation that might appear, along with our ability to make good decisions, as in not putting ourselves in danger. It is also the place where both our long and short-term memories are stored, well more lost than stored these days, it is our centre of reasoning and without all these things working correctly or not at all at times, it is easy to see why life is difficult. My sudden desire to start crying as I put the phone down, was clearly not in my control and it was also something I wouldn’t have even felt years ago. I suppose it could also be argued that it may well have been behind my cancelling the appointment as clearly neither my doctor or the hospital think it is a good idea not to go, they seem to think it needs to be seen, so was I making a bad decision?

The second reason is even simpler, I have lost so much control over my life, that anyone trying to get me to do something I don’t want to, feels like I am losing even more, control. As an adult we are expected to be in control of our own lives, not having others making decisions without our input, or our input being run over totally and ignored or manipulated. I suppose there could be a mix of all those things, but the result is a desperate need to understand why and what is happening. I can have all the facts laid out in front of me, just as I have laid them out for you and I can apply all the logic I want to situations like this, but it doesn’t change how I feel. When there are alien emotions and feelings, that you know are wrong without being able to put your finger on them, you do really feel like you are going mad, another part of loosing control.

I guess I have spent far too much of my time in the past few years trying to get to grips with the things that are happening to me mentally. It is nothing like the physical changes, those are easy to understand they are real, tangible and can be documented in ways others can understand. The loss of your own mind, your own abilities and capabilities, well they are so different and so fine that explaining them, is like trying to catch a bubble, I can see it, run my hand around it, but just as I touch it, it vanishes and I am left struggling to find the next word or sentence that anyone would make sense of in any way. Our minds are us, it’s a simple concept, one we all understand, but when parts of it fail us, then who are we? I haven’t vanished, physically I am still here, mentally there is less and less of me as a person, I am loosing me. I may be able to write, to reason and to sound like a person with everything intact, but the truth is, I am not who I once was and it’s scary being inside watching it happen with no way out or of putting on the brakes.


Please read my blog from 2 years ago today – 20/10/12 – Touching the floor

I was looking for something else when I came across this picture and it actually really shows just how I am feeling just now. It is all rather dark at the minute but this morning that crack in the clouds has appeared and I feel lighter in myself. I am not sure where the change came from but when I woke……