Spreadsheets and fear

Yesterday took me over 2 hours longer to get through my normal writing and twitter activity and all because I can’t type or trust my fingers to be where I think they are or to do what I want them to. At first last night I thought my hands were a bit better as I wasn’t subconsciously massaging them all the time, then I realised that it was because my legs were worse than the night before and my attention was centered there. To be honest I think that happens a lot, one thing annoys me more than another, so it is that I focus on, it isn’t that the other things are better, but just lower on the scale of importance.

When I first moved over to the settee I actually couldn’t sit comfortably, for a change it wasn’t my legs but pain low in my pelvis and after a few minutes I realised what was causing the pain, I hadn’t been to the loo in the last 12hours. My bladder was screaming out in pain. It is one of the things that happens to the majority of people with MS, our bladders don’t give us the right signals and they frequently don’t empty properly or more embarrassingly they will decide to empty regardless of where you are, with no warning and no ability to stop it. I have a bladder maintenance system that I have to say I totally ignore and normally manage to get along in my own way. If I did all the things I am meant to for my MS, I would spend more than half of my day just working down lists. I don’t advise this approach, it is my choice and I know the risks I am taking, but I look at it from the point that I am still here and spend less time in hospital than many, so I must be doing something right. When your bladder is that over full the stupid thing is it just doesn’t want to empty, the only way to manage it is to catheter. I think that you also stop producing urine as I always seem to go a lot more over the next 24hrs, I have just been to dispose of a huge quantity for the third time this morning. Believe me thought when it happens and the pain starts, it is a pains you want rid of. The starting point of low in my right side of my pelvis is an incredibly sharp pain and as the fluid levels fall the same pain spreads further out to the right and up towards my waist. The pain increases as it empties and for the next 15 to 20 minutes afterwards, it punishes you for being so stupid.

I really believe that there isn’t a patient alive with any chronic condition who actually does all the things that the NHS spend money on telling them to do. Yet while they harp on about managing your condition, I am also sure that every one of us start out doing everything we have been told, to the nth degree, then slowly bit by bit, cut corners, shorten, dismiss and then eventually stop, doing what we have to at the minimum level only. It is all to easy for them to type up their sheets and booklet, to give us advise, but I wish they would spend just one month doing to themselves, what they are telling others to do. I guarantee that they like all of us would realise that it isn’t realistic for anyone to live a real life in the way they expect us to. Now I am housebound I guess that I don’t really have an excuse, but when I was still out there working in an office and doing everything we all have to, it really wasn’t possible. Who would take a measuring jug into work with them so they can keep a spreadsheet of urine output, or worse still would you really take it with you on an evening out? As I said not realistic.

I remember when everything went totally wrong with me, when my MS turned violently progressive, it felt as through there was nothing in my life that I wasn’t meant to measure, tick off on spreadsheets, track or report. In those first 6 months, I can honestly say now that the over load of advice, medication, tests and medicines, actually really did make me worse! In a strange way now I think if they had given me a few months to settle in to knowing what was wrong, before they swung into action, I might have coped much better then than I did. I know that then as now they are trying to make you better and trying to give you the help they think you need and you probably do need, but sometimes just letting you settle into how things are, works better than scaring the hell out of you, with a future that might never happen.