Adam has headed of to work this morning with the letter that arrived on Saturday, so I am waiting for a call to tell me what they have to say. I did think late yesterday afternoon that it might actually be from the OT department and not ‘Gastro’, I have been waiting months for them to come round to the house to see if there is anything that can be done to make it less painful to sit. It is really unbelievably that they can’t just simply replace the cushion I had with a new one. I have so far had 3 different people try to but they have run into the issue that it isn’t with in their departments remit. The blow up cushion I managed to get off the district nurses is only so so in it’s ability to ease the pain. I really can’t see how anyone is going to manage this one as if 2 inches of air doesn’t stop it what will? I carry more than enough padding in the way or fat to cushion my own backside, but this feeling of the bone being bruised just doesn’t ease unless I am lying down and even then it is still there.
I am sure it has something to do with the Pelvic bones and I looked on line yesterday to see what I could actually come up with myself and to my horror even the origination that specialises in the care of people with what sounds like the same problem as I have ultimate answer was to not sit! Well if I didn’t have to believe me I wouldn’t, but standing isn’t an option. They didn’t seem to even recommend any type of cushion, they said it was trial and error for the individual, but to not under any account use the old fashioned doughnut, as it is now been proved to cause even more problems. I suppose it isn’t that surprising that my body now after nearly 10yrs of sitting more than most, and 5yrs doing little else that I am now having pain. There seem to be slowly more things breaking down due to my mobility, My weight has increased from my average 9st 11lbs of a few years ago, to 14st 6lbs now. That in it’s self is distressing as I was always rather proud of my slender figure add on to that a shape I try now not to look at as all muscle tone has vanished and I feel like a lump of lard. In some strange ways the loss of my body has been a bigger theft in my life than my lack of mobility, we all have a problem when we look at ourselves without the rose tinted glasses of life, but when you see what you don’t want to you have the choice of doing something about it, I have none. My diet is meager to say the least, Adam is a constantly checking that I am eating but I really don’t need much as what do I do to burn it, short of stopping eating all together I see no option but to just live with it.
Chronic illness take so much more from you than just your health and it actually causes more and more health issues as time passes. I know that just walking in the house on occasions makes me short of breath, not a good sign, the added weight, well we all know now what that does to you without me spelling it out. MS is slowly becoming just the route cause of many other things, I am gradually becoming in greater danger of things like diabetes and high cholesterol and so on, it is more a when than an if. The other week I counted 12 conditions I am diagnosed with at the minute, I wonder how many I will have in 2 or 4 yrs from now, I know the list won’t go down or even stay steady it will go up, fact. I do try to not look to far ahead, I’m not scared of what the future holds, it is more that I don’t see the point in getting down about things until I have to, I accept fully that MS will remove more of me by itself but it will also cause directly the appearance of other illnesses as out of my control as MS is.
The phone just rang and it was Adam, the letter apparently was an error, there was some kind of mass sending of letters at the end of last week and the poor girl in ‘Gastro’ has had load of shouting patients calling her this morning. He did manage to confirm that I am on the list, but there is no sign of when that appointment will be yet. It is lucky though that Adam knows the girl he spoke to, as she has added a note to say it is to be that hospital an that one alone. It may sound odd, but there are a few reasons why I want to go there. The ‘Victoria’ is less than 10mins from our house, as I am going to have to have an ambulance there and back I am firstly hoping that the return journey may not require me to be waiting for hours, as almost anyone will be able to drop me off here. More importantly as well is that should I have to be an inpatient at all, with it being so close to home and also the hospital Adam works in, I will have the chance to see him, the ‘Southeren’ is a £10 taxi journey each way, we don’t have that money to spare. But any way I am back to where I was on Friday, there is no point me calling the Doctor and all I can do is, well wait.