The right to dignity

Last night I spent the whole evening sitting on the settee in sections. I heard that what? All yesterday and today I have been having spasms from the base of my spin to about half way down the back of my thigh. Spasms are painful and when they tighten they are impossible to make them let go. It is a poor comparison but as close as I can think of. Everyone at some point in their life I am sure has had a muscle cramp or stitch, they are painful and all that you can do is try and move about forcing them to let go. Now take that sensation raise the pain a bit and spread it over more than one muscle, that would be a spasm. Occasionally if I catch them fast enough and I force the muscle to pull in the opposite direction I can ease their grip, I know that it is a split second thing, that catch point is vital miss it and spasm wins. When the spasms are painfully tight trying to sit on that muscle is painful so all I can do is switch the weight around as much as possible. Added to that because of the problem I have lately had with my bowels I had all the time the fear that the spasms may cause yet another so called accident, I am beginning to see them more a conspiracy to stop my moving just in case. I am sure is must send Adam nuts as I simply can’t stay still for more than a minute or so, he said nothing until I went to bed. If my evening has been painful, to be able to sleep either the pain has to ease off or I have to be exhausted, it was the latter last night.

I woke this morning in the hope that things would be better and that being a new day meant a new start for the muscle games. As I stepped out of bed pain shot through me and urine stated to travel down my now cramped leg. OK not the day I was looking for. Cleaned up, medicated to the eye balls and settled on one buttock at my PC, my day has not changed from yesterday evening at all. The crazy thing about spasm in that area of my body is there can be mixed results on my bladder and bowel, first thing this morning I couldn’t stop it running, half an hour ago it was the opposite. My bladder was full uncomfortable and nothing would leave at all, I had no choice but to insert a catheter to relieve myself. I use them when I need them, but they are not my favorite MS tool, I do have to say though it is one of the few things that has improved vastly over the years. The modern ones come in a water filled pouch that requires a slight pressure to burst water bag, that activates the lubricant making them easier to insert. The container is a discreet size now as well, unlike the ones I first used, so for those still able to venture into the outside world, they can be fitted in a handbag without a problem. Until this morning after 7 or 8 years of use I had my very first accident with them. I had been warned it could happen but sort of put it to the back of my mind, as the muscles was tightly closed I used a little too much force, as the liquid came to a stop and I start to pull the catheter out, blood started to flow.

There is something inbuilt in us that the sight of our own blood is scarey, even when you know that what looks like a lot is only really a tiny drop, it suddenly feels like you are bleeding to death. Shock dealt with I cleared things up and tried to put logic back into the situation, I have checked several times and there is no real damage, a scratch nothing more, but I’m human and I still panic. MS is never fun, but it is hidden things like spasms and catheters that no one else sees, those things that I hide and never get away with my deception. Adam knew last night that I was in pain and I didn’t want him to know, the same way that if he had been here this morning instead of at work, no matter what I had said to cover he would have known something was wrong. This is another one of those things that they don’t tell you about, one of the victims of MS is your dignity.

Rehab returns.

Rehab called round yesterday and as with all their visits I didn’t remember to ask all I should and tell them all I should, may-be I should just give them the links to my blogs and say, read you’ll get a fuller picture. No matter how hard you try to, it’s always hard to make the conversations go the way you want them too. I’m sure we all do this, run through in advance what you are going to say and how you are going to stress things, even on some points what we expect their answers to be, just to find that on the day none of it happens anything like that. I have never understood fully how medical people manage that one, as I always used to prepare for business meeting be it directors or staff, I usually got it pretty close to reality, put me in front of a Doctor or a Nurse and they continually curve ball me. I suspect it has to do with what they think is important, is usually the thing I think is least important. I did guess though that by the end of this meeting I would have agreed to have another department involved and I have.

I have tried everything that they have suggested for getting control of my bladder and bowel with mixed or no improvement, I was sure that the Rehab nurse was doing everything that she could think of but I even know I need more help. So once a small urine test is done, I am expecting a visit from the continence team, I had avoided it as my last dealings with them 10 yrs ago left me being expected to self catheter four time a day. Yes I can do it, but it isn’t a realistic operation to carry out day in day out. At that point I was working in the office with everyone else and having to have the catheters and all the stuff that goes with them, in my bag or draw, was a potentially embarrassing situation waiting to happen. When you are still at the stage of trying your hardest to appear as though nothing in life has changed and you are 110% fit to not just hold down a job, but you can still do it better than anyone else, well. I have stopped and started my use of them over the years and when using them, how often, To date this has worked well, I did go back up to the level I was supposed to be at when things started to go bad earlier this year, it didn’t cure anything and caused irritation that was more annoying than helpful, so back to my system. I am just going to have to wait and see what they will come up with this time but I’m not really looking forward to it as they don’t live in the real world a lot of the time I am sure, especially the real world with poor dexterity and a bad memory.

As my perching stool has seen much better days they are also going to replace that in the next week or so, I know anything will be an improvement to the one now in the corner of the kitchen units, but I am not holding my breath as I am hoping that the styling will have improved a little. It is one of those things throughout my downward slide that bugs the hell out of me, the design or should I say lack of design of disability equipment, esthetically pleasing it isn’t. If the stool wasn’t one of the most useful items they have given me it would have exited my life long ago. I would advise anyone who has Fibro or MS to get one, in fact I would advise anyone to get one even if healthy, they are brilliant. As the name says they are for perching on not sitting which is a great position for cooking from, it allows you to reach, stretch, chop and stir without the restriction of being totally sat does and as you haven’t full sat down, there isn’t the problem of getting up, you just lean forward and the rest of you follows. My ideal image elegant chrome with a cream cushion will turn I am sure into stumpy rubber feet white paint and plasticy looking brown seat. Anyone want to put a bet on it?

Everything labeled ‘Don’t move’

I found myself this morning once again tiding up as I went to get myself a glass of coke. Last night I had moved one of the candle holders a few inches by accident and without looking or thinking I returned it to the correct position. As far as I can remember I have always liked things being in the right place, I can’t see only a few reasons as to why once placed, anything would ever need to move from it’s home, to somewhere else. Everything is mapped in my mind and if asked I can locate without thought exactly where the item can be found, in some cases I could even tell you where it was in each of my last homes. I thought it was OCD for years until the MS label appeared. The lesions have caused damage to my brain and it now demands order, it isn’t just frustrating finding something wrong, it can be scary.

The worst episode of this is burnt deeply into my mind, I can’t remember ever feeling so scarred and lost at any other time in my life. It was several years ago when I was still going into work daily. I had been involved in planning some changes to the lay out of the Call Center but because of my health I didn’t go into the office that weekend to help move the desks around. I had the plan and I thought I was comfortable with it, why wouldn’t I be? I arrive at work as normal at 5:30 am, after resetting the alarm and checking that everything was OK with the switch as I set some new programs on the Friday. I printed a couple off and sent the other to my network location, then walked to the Call Center reading my reports. I turned the corner from Admin to the Call Center, looked up and found myself feeling completely and utterly lost and terrified. I really didn’t know where I was. That step out of Admin had brought me into an alien place. I slowed my breathing, closed my eyes turned back to face Admin, then tried again. On opening my eyes I saw a room that I knew, I was comfortable and at ease, I turned round again and there it was, that alien world, nothing was where it had been planned to be or where it had been before.

I started to shack and tears ran freely, I tried hard to find my desk but at first I couldn’t, I then found it just 2 steps from where I was standing. That was my PC but on the wrong side of the desk, every thing else was piled up in the middle. I couldn’t stop shacking or crying although I had found this I still didn’t know where I was and I knew that was stupid. I spent the next hour trying to set my personal space as something that I would be comfortable with, but it wasn’t really working. At 7:30 am my assistant arrived and even then my distress was clear to see. You can’t cover-up the presence of such a strong feeling up and I couldn’t explain it then or now. Thinking about at this second it still upsets me, I really thought that I was going mad, there was no other explanation. The change to the plan had been unavoidable but that didn’t help either, I just had to get on with the day and try to be normal, when 3 hrs later my boss called me in, I knew I was failing. She was angry with me as I couldn’t explain it and she didn’t understand it, the stalemate remained and work went on as normal, well sort of, it took me nearly a week to stop feeling lost.

That strength of feeling has to date not happened again but it does happen daily in tiny doses, just one of the things that effect Adam more than me. I don’t notice my constant corrections of item placement, he does and as I can no longer manage the housework he has now photographed every ornament so that he can replace everything correctly once cleaned. MS is a scary illness as you don’t know from one minute the next what will happen. Terrified, collapsed on the floor, wetting yourself, limbs unable to work properly, pain, numbness the list continues, and any or all can appear with no warning, all I can do is try to keep my world in order.