A plan from the day after

I suppose we all do it, go to the Doctor and hear what ever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK, I COULDN’T SLEEP. I lay there and thought though everything that the Doctor said and what it implied, that was the bit I had missed, what it implied. I am going to spend the rest of my life with at the very least this level of pain, if not more. The drug that is holding the pain where it is, is my MST, for those that don’t know it is an opiate and like all opiates your body builds up a resistance to it over time and all they can do is lift the levels you take daily, but there is a limit to what they can give you without killing you. In other words they will only be able to control the pain as long as my body doesn’t build up a resistance to quickly. The very reason why when my medication was changed from oxycontin to MST I didn’t settle for the direct replacement levels. The matching dose was 70mg, but being a different compound it lifted the actual quantity of the opiate, so I worked and brought it down to just 60mg. It meant I had to put up with a bit more pain but my mind was clearer and I was also lengthening the time that I have with reasonable control.

Everything with MS seems to be a balancing act, trying to walk along that tight rope without falling off and accepting there are payoffs all the way. There are no cures, no magical drugs that will take away the pain totally and the best that a doctor can offer are options, you have to make that final decision yourself as to what you can live with. Just as yesterday yes I was offered other drugs but even the Dr himself said if he was me he wouldn’t change them, the fact my body reacts only positively to what I take and I know they are helping means they are probably the best option. I have to agree, if the other drugs had a guarantee with them that they would work better then I of course would take that few tough weeks while the change over took place.

So I know have it spelled out again and confirmed again, that the NHS can really do no more for me. I have heard that now for the last seven or eight years, there is nothing more we can do sorry. I have thought through the possibility of going to see my Nuro again, but I can really see no point, it will just be another day that screws me up for days after. Another horrid day of stair climbers and being trapped in a place I don’t want to be. Another day of going over word for word, what I have said to so many other Doctors. Another day of watching them nod their heads, make understanding sounds and then at the best have them try to palm me off on someone else, just as yesterday was. That was what happened on my last trip to see him, he sent me to two other department who dragged me through repeats of every other visit and at the end said, “I’m sorry we can do nothing to help you”.

So what am I going to do. I don’t have a plan if you like, it’s not clear in my head step by step, but what am thinking of is to step up my reading and my research. When or if I find something that I think may help, I will then talk to my GP first to get his input, hopefully he will be happy to go along with it, without a trip to the Nuro. I have read a lot clearly over the years and have tried several times to do that with my Nuro and on each occasion he just smirked said no and gave his reason. I think I might have more chance with my GP, but it is 100% clear to me now that the NHS won’t volunteer any help or hope so I have to.

I spent 20yrs fighting with them to get my diagnosis, just to land up fighting with them to have a better quality of life. It doesn’t sound much to want to live with less pain but still able to live a life, but it seems that is a future I am not being permitted to have, not by them being cruel, but because they have nothing more to offer me. I used to believe that all you had to do when you were ill was to go to the doctor and collect a prescription, oh how wrong I was.