A problem without an answer

Well, I spoke to my doctor, with everything ordered in my head I was able to lay the whole thing out without it turning into a muddle which it normally does, when your brain just needs a seconds distraction to ditch everything, preparation is essential. He at last seems to understand exactly what the issues are that I am having and why all the solutions that had been suggested by him and the district nurses, just didn’t work. I am now on two laxatives to be taken every single day from now on, which means I don’t have to try and remember anything, outside my normal medicine times. I wasn’t impressed when he said that I should take senna as I used to use it and it got to the stage of my having to take 4 times the normal dose, something that was witnessed when I was in hospital the last time. When that failed, well I went over to Dulcolax which until the last years had worked fine, but I am going to take it to see if, not using it for such a long time it will now work again or to prove that it just doesn’t work for me at all. I am also now on Lactulose, which I remember taking when I was pregnant, which is a very long time ago, his hope is that by taking both daily that they will between them slowly work towards relieving the problem. We also talked about going back to see the consultants at the hospital, amusingly, his view of them was just about as low as mine when it comes to dealing with something like this, so for now I am not heading there. If the current amounts and combination doesn’t have the desired effect and as he now understands that I can’t possibly eat more fiber or drink any more fluids than I do, he says there are a couple more options before we need to start worrying, about going back to the hospital. I did try to push him as to what the worse case scenario is, but as he always does, he refused to answer by changing the subject, I am, of course, one step ahead of him and I know without a doubt that the only answer would be a stoma something no one wants but hopefully the long slow approach rather than the smash it with a hammer approach may just help to keep that option away for a while longer. I took my first doses last night with exactly the result I expected, I am in pain from the bloating caused by the fact that Lactulose causes wind, wind I can’t get rid of, but on the good side, from taking it before I know this stage of wind production doesn’t last and will reduce in time.

Over yesterday, I was contacted by several people with MS, either PPMS or SPMS saying they have exactly the same problem and are struggling on with it as well, so just as I said yesterday, the emphasis put on constipation as an MS issue is grossly underplayed. I suppose that doesn’t really surprise me as all these sights write for the majority and that majority are those with RRMS, but it doesn’t seem fair that those of us with the rarer forms are left out on the edge unsure what to do and what we might have to accept as time goes on. I know I am writing this from the perspective of someone with MS, but I would honestly be shocked to not find the same situation mirrored for every condition that has several different forms. It is hard enough to find that you have a condition that is life changing, to then be told it is life limiting, but they can’t tell you how or when, as we are all different. To then find yourself totally ignored by those who have set themselves up to help, is quite honestly devastating. In the 14 years since I have been diagnosed, I have only very briefly found 2 others who have PRMS, I have thousands of followers on Twitter who have MS, to have found only 2, might just give you a better image of how it feels to be me. I suppose in some ways that is why I started to reach out to anyone with chronic conditions, no matter how many or how few people have what we have, we all feel alone at times with it, for those who have rare conditions, it is a million times worse.

To be honest I didn’t actually realise at first that my type of MS was rare, the first clue I got was actually from the MS Society in Glasgow, I had gone along to look at their facilities and find out what they did there, when I said I had PRMS, it was greeted with an “Oh”. I didn’t say anything at the time, but I came home and for the first time I entered in a search for PRMS and found a big fat zero. Actually that is a lie, it wasn’t a zero, I just repeated it as I knew it had something to do with petrol but couldn’t remember what it was “Petroleum Resources Management System”, not helpful. These days it still comes up before anything to do with MS, but at least there is something there, the world is moving on slowly, I say slowly as it is still woefully little. There is one thing that hasn’t changed at all, there is no research what so ever being done into PRMS or any treatments, there are so few of us that they say they can’t put together big enough people on which to carry out tests. For that reason, there are few treatments if any that actually work on PRMS, we are the baby they really do leave out in the cold. Like a lot of things in life I just kind of accepted that fact and got on with my life, it wasn’t until it took over and stopped the life I had, that I began to really start thinking about it and the true impact it would have on the rest of my life. I remember searching online at the time for information on being housebound and how anyone was supposed to survive that type of life along with the life their health enforced on them, just like PRMS, I found nothing. So here I was, with an invisible illness and totally invisible to the world as well. To be honest being 100% invisible was harder to accept than being ill and until I was made redundant I didn’t have to face it, I might have been housebound but I was still part of the world, then suddenly I wasn’t.

Each step along the way has had its own effect on me, I am now a very rare lily who lives in a rare environment and like every rare lily the slightest thing that goes wrong, turns into a major event. My body, like the bodies of every single person who lives with a progressive rare illness, doesn’t have the fight left in it to deal with even normal life without help, but where is the true help we all need. I know that sounds very bleak and don’t get me wrong, I more than understand the financial and medical limitations, but there are honestly a million things that could be done for people like me, mostly small things that would make our lives easier, things that could give us a better quality of life and feel like people again, I for one am not quite ready to stop being a problem without an answer.


Please read my blog from 2 years ago today – 06/02/13 – Body Check 2 

So where do I start, from my head to my feet or the other way round, it seems right to start with my feet. I don’t remember when last the sole so my feet didn’t burn, they are always painful in one way or another but at night when I lie in bed they start to throb, I stand so little that I am now left with only one conclusion……..