Just one

Wednesday has arrived and it looks as though my prediction regarding my GP’s suggested laxative and soften routine was correct, absolutely nothing other than pain and a tiny amount of wind escaping has happened. I woke at 4am in pain and although after taking a booster pill and going for a short wander to the kitchen and back, I did go back to sleep for a while. I gave up totally being able to lie in bed past 6:30 am, as a combination of pure discomfort and mild pain just made it impossible to even entertain the idea of sleeping anymore. So once more I find myself in the position of having to phone the doctor again and go through the problems and lack of results in a hope he will come up with something. I have to be honest that it isn’t just the need to clear my bowels any longer, with three disturbed nights in a row, my general health is starting to dip, clearly this just isn’t going to work. If there is one thing that I find frustrating, it has to be the total lack of knowledge even doctor have when it come to just how vital sleep and rest are when you have a condition like PRMS, I expect it is similar for many people with chronic illness, the wisdom of giving us medications that land up disturbing our sleep, really does have to be questioned.

I actually had this plan in my head of how today was going to pan out, I have been putting it off again and again but my hair really does need to be dyed. I thought that today as I have actually once again not been for my shower in the last couple of days, would be a perfect day to get up, get everything done online and then set too on my head. It is one of those things that is just too easy to put off when you aren’t going out and about, like most people who are housebound I am sure, I really don’t bother that much about it unless I happen to catch my reflection, then like most women, I am horrified by the amount of grey that is clearly visible. It has become all to easy to just dismiss these things without a seconds thought, especially as your mobility lessens and lessens, well I don’t exactly pass that many mirrors, as I spend most of my time sat down or asleep. There are points that appear along the line though, points were genuinely forgetting or when trying to ignore things, well it just doesn’t work any longer and over an inch of clearly not purple hair, well it’s that point. Although Adam has offered and actually tried to do my hair for me, I am still both faster and more controlled than his best efforts so far, the problem for both of us really is the speed issue. Quite simply you can’t have half an hour from starting to put the dye on one side, before ending on the other, it all has to be applied in under 10 minutes or your hair will be destroyed by it or darker on one side than the other once washed out. I never realised that something as simple as wanting my hair a particular colour, which only comes in permanent dye, would turn out to be such a problem as time went on, but it has. It is just another example of the thing that are slowly finding their way onto the list of things that being disabled has or is taken away from me, yet one of those thing no one would ever think about when first ill. It is a long slow process, but all those things I once took for granted all seem to slowly be falling into the abyss of history.

It is odd how your brain sorts out what we believe will happen to us as time goes on, I don’t know why I thought that I could ring-fence the things I liked or enjoyed, keeping them as the things I would be able to do forever, whilst having an equally long list of things I expected and didn’t care about if I never really had to do them ever again. I guess we are all selective in our live, we prioritise the things that are important to ourselves, the things we like or feel will not just affect us, but those we love, these are the things that must happen. We all also have other lists, each one a little lower down on the scale of importance and we continue through life adjusting those lists to fit with our then lifestyle. That is normal, that is the way life is, but when health jumps in, well those personal wishes and likes are stolen from us, we are no longer in control and I guess that is the only part of fighting illness, that I have to agree with. I know I have fought losing each and every tiny little thing. I couldn’t fight my health, as it just doesn’t work that way, but I can fight, adjust, reroute and change until I found a way of doing what I wanted for as long as I can, it’s that last bit that is the real bummer. Eventually, the point where there are no more adjustments left to make and you loose, will appear. Even now, I feel that I have days where I do nothing other than sit here and I feel as though my life has been stripped from me as what have I done that I would have done years ago, absolutely nothing. It is on days like that, that the ability to kick yourself and switch the question around is so important. I believe firmly that as long as I can find just one positive, then what more do I need to be happy, the reality is that once you find that one positive, without having to try loads of other just start appearing in your head and it really does need nothing more than just that one to start the ball rolling.

Much to my surprise the phone just rang and it was my doctor, my plan of phoning first thing seemed to work as my doctor called me before he started his morning surgery. The plan now is to bring the senna back down and to increase the Lactulose in the hope that will end my stomach pain, as clearly my muscles no matter how many times they are kicked are not going to let go of their contents so now we are going to try and soften them until they pass. Again I am to go two nights, upping it by 5mls morning and night taking it up to a max of 30mls and see what happens, once it is clear, then we will talk again as he now sees that I need to be on a maintenance dose to prevent things from getting this bad again.


Please read my blog from 2 years ago today – 11/02/13 – Let’s change the system. 

I have thought a lot over the last few days and the more I think about the more I want to restructure the care of the chronically ill by the NHS. I can’t talk at all about other countries medical systems but my idea could work anywhere I guess. There is one major issue with our care and that is the damage that is done to us by just making a visit to a hospital or to a surgery. We are locked into the now old-fashioned routine that we have to…….

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