I am once again waiting. It seems to be something that I do a lot, wait, just wait for the doorbell to ring. I am expecting a visit from the Continence Nurse today, it is now nearly three months since I called the Re-hab team in to get some help with the problems I have been having with my bowels. They tried to help me at first with medication and despite trying different combinations and dosages things are still as bad as they were before I asked for help. I have had problems with my bladder for years and I have been self catheterising on and off for 9 yrs. When ever I have a flare it gets worse and I need the catheters, it can take a few weeks to settle and then I bring the numbers down as over the years I have learned the signs. My bowels started becoming a problem at the beginning of the year, I found that I was loosing control, not emptying bowels but small amounts passing without my knowledge. The Re-hab nurse and I agreed on what we think is happening, it appears that my gut has stopped working as in it is no longer pushing the food through me and it takes eating, for there to be anything passed. The medication I am taking is supposed to sort this out but if anything it is worst and I have actually found myself waking in fear that I have soiled myself, luckily this hasn’t happened, but it showed me the extent the problem has become, even when asleep I don’t relax. So today I am waiting. I know it isn’t the case but there are times when I feel as though the medical system is now just waiting, waiting for me to shut up and die. Before any of you get worried by what I just said let me explain.
My condition is such there is little apart from pain killers and antispasmodics they can give me and every time I ask for help I find there is no help, the answer eventually always becomes ‘Sorry but there is nothing we can really do’. I do at times know that is probably going to be the result as I several years ago made it my purpose to find out what I could expect my future to hold. Again I will say don’t do this, it actually doesn’t help and I know you won’t listen, but I had to say it, anyway I did and I now know the worst and I know what little can be done. Medicine is only able to help if there is either a drug or an operation they can preform, that is it. For some reason I and I suppose many others thought Doctors could fix everything, so at first to hear they can’t is shocking, and at time horrific. My saying that they are waiting for me to shut up and die is not meant with any malice or as an accusation, it is made as a fact. My moaning to them doesn’t fix anything and only shows their limitations and until I die, they know they will keep hearing from me asking for things they find impossible.
Until recently I didn’t realise how different the treatment of MS is in the USA than it is here in Britain, once you have your diagnosis and they put you through all the tests and treatments they have, you are suddenly almost on your own. I haven’t seen a doctor of any type in the last 5 yrs. As soon as I became housebound I also became invisible, I am the one now who diagnoses and to a certain extent proscribe for me. If I am ill no doctor comes to my house, I phone and say I need an antibiotic and the prescription is sent out, I say my pain is worse they up the dosage, no one other than a nurse has been here at all. That is the situation and it is one that I am totally happy with. If they came here or they sent an ambulance to take me to hospital the result would be the same, so why waste money and time. I have through Twitter seen that in the USA MS sufferers seem to see doctors and have tests repeated again and again, to be honest I don’t understand why. I don’t need tests to see that things are worse, when there is nothing that can be done about it. It would just increase the waiting.
I have one hope from the visit today and that there is a new medication on the market otherwise I again know the answer, ‘Sorry but there is nothing we can really do’.