The end of the day (prt 1.)

There are things that unless you can actually connect your brains, that are so hard to put into words and try as you might to explain or describe, remain stubbornly impossible to understand. The sharing of sensations, both physical and mental are a constant stumbling point for me, I can’t be 100% sure that what and the way I have written something has conveyed not just the individual sections, but also the combined and total effect. Yes there have been loads of occasions when I have had a comment or tweet, telling me that I have, but there is always still that element of doubt. Trust me to have set out on a project that will streatch me to my linguistic and knowledge limits. I have through out my blog made a point of trying to get across everything in a manner that even someone who is fit and healthy should be able to imagine and feel for themselves, if in a minor fashion but to give you all a glimpse. So when last night I decided that I wanted to try and remember everything about how I felt at the end of a day, when I am at my worst, I eventually realised that it might not be possible as so much goes on and so many different things are happening, I would be bound to miss something. Writing it all down wouldn’t work, as that would interrupt everything and change it, so with that in mind, I am gong to give it my best shot.

I have a nap every afternoon for usually around 2 hours, I do so so that I can be awake enough to enjoy some time with Adam everyday, without that nap I would probably be in my bad by 7pm, so I am taking my evening as starting when I get out of my bed. Not surprisingly I don’t wake up filled with life but I do wake with some degree of refreshment, I also always wake up hungry, it’s an over powering hunger that I don’t feel at other time of day, so that is when I normally have my dinner and eat it while I am sorting out the tweets which I missed when asleep. This point in the day is when I actually start my wind down toward the end of the day, there is no writing and everything is set so I relax. Sitting is at a low point, and there is always sharp pain not so much in my backside but across the backs of my thighs, and at the tip of my coxis. The nerves in my feet are already starting their pins and needles game, tingling not just as they used to on the soles,but also across the top, running into the numbness around my ankles and up the lower section of both legs. It isn’t painful but it is more annoying than anything else, this is the time of day that small groups of spasms start, again they don’t really hurt as they used to but I am aware of the muscles cramping and turning hard before letting ago again. The worst pain in my legs is always the front of my calves which both feel constantly as though a razor is removing the top layers of my skin, and my left thigh has a shard of glass digging into the outer side of it. The level of all these things is still what I would call background, yes they are there but they are always there, and a bit like annoying lift music, you learn to switch off your reaction to it and to put it where it belongs, there but not reacted to. It is at this time of day that my walking start to go and there is no chance of me walking anywhere without it being obvious that is something wrong. The ligament in the backs of my leg seem to tighten and become stiff, in the morning they seem to vary a lot, but as the day goes on they always behave in the same way. Although it looks bad the stiffened legs and dropped left foot is more annoying than painful, it’s not painless but bearable. If you are looking for pain in the lower half of my body then look to my thighs and pelvis area, every step I take cause pain somewhere in that area, I think the changing position is due to my tendons but I can’t be sure.

From my waist up I will at the point in the day be having more and more problems with my dexterity, which in a funny way is a good thing, as it forces me off my PC. Typing and even using my mouse is painful, both hands are clearly telling me they have had enough for another day and I listen to them, so somewhere between 5pm and 6:45pm everything is switched off. Across my mid region I will have the normal feeling of pressure, a discomfort that makes me sit more upright or will force me to lean forward. I will also be twitching, a movement that has been with me now for about 8 years. There is some nerve in my spine area that sparks constantly unless I am lying down, when it can’t make me wobble and jerk. The hunching forward is also a way of stabilizing this and allows me to sit still, which when watching TV is a preferred choice.

My left arm is usually by then feeling useless, it will be numb and heavy, just hanging at my side while walking or if really bad I will be guarding it, holding it up across my body, often with my right hand holding. If Adam is home by now I have to talk, early on this isn’t to bad and I really enjoy having some conversation that actually isn’t typed. I will also by this time have moved my cushions so that I can sit on the settee, with him. The pain in my legs always get worse once I have made that move, instead of the pain at the top of my thighs, it will have moved up and is more centered on my backside. I will often be sat there massaging my hands and arms, as the pain from a days activity will need relieving, a massage doesn’t get rid of the pain but it helps.

For 2 hours I am sat watching TV and talking, and the above is the base line from which those 2 hours are built on. I am splitting this blog here and will write the remaining section tomorrow, sorry but my hands are getting rather sore and I am guessing I have about the same again to type before I have this topic complete.

Physical Flare

I am waiting for the doorbell to ring as the MS nurse is due here today, with her due in an hour I am having to do the thing I hate most about NHS staff coming to my home, I am having to let the heat out of my house. Because I am a smoker I have to open my windows an hour before they arrive, so this will be the last NHS staff allowed into the house now until next summer, as long as nothing really nasty happens. They don’t leave a cheque behind them to pay for the heating.

I am still tired and still in pain and for once someone will see me not at my worst by any means, but not a my best either. I often seem to have that type of luck that means appointments usually coincide with when I am on the better side, which I have seen as sods law over all the years. I felt not to bad this morning but rapidly slipped as I woke up properly, now two and half hours on, I desperately want to head back to my bed and sleep for several more hours. If offered hibernation today I would accept, it is that type of tiredness, to my very core. I think my questioning is over and I am in flare, not a horrendous one but one that is all over rather than centered as I have found them to be in the past. In the last month or so I have just felt myself slipping and there hasn’t been my normal breaking mechanism that I had years ago. I faced up to that yesterday and started to put myself back together for the millionth time, but I feel so rotten that is going to take time. I really wish that I would learn from all this, but somehow I don’t.

I had hoped to be making great strides with my book but it fell onto a hold spot a few days ago as I just don’t feel up to working on it, all I want to do is coast and sleep, I know there is no point fighting as I only make it worse when I do. There is nothing that I can do but go along with it and wait for the first days of improvement to appear. Even keeping up with this is a draining experience that I landed up scrimping on when it came to my Twitter post yesterday. OK they are all scheduled, but they still take time and energy to actually write and set in place to run, I had also planned to cook dinner last night, as Adam coming home at a set time, would limit my ability to burn anything, and didn’t get there and I doubt that I will either again tonight. There just isn’t any energy to do anything else than sit or sleep, not being able to, or really wanting to fight against and that is where my final flare decision has come from. Flares remove all the fight, they wash away everything that is you and replaces it with an empty void, just like all voids there is nothing but a vague echo of what should be there. Every muscle and bone has a damper attached, resiting the messages to move preferring to remain motionless unless pushed into action. I don’t think that years ago when I was fitter that I could have imagined what I feel now, so to explain it to others takes great care as words aren’t always enough or clear, as words give only a glimpse of the reality.

Imagine being inside a room filled with wet concrete that you have to move through, your body is cocooned by it, supported in it’s position, stopping you from wanting to move, but you have to. Thought and effort allows your arm to reach forward heavy in it’s action as pressure of the concrete makes that simple movement hard, as you move it forward the space you create slowly fills making returning your arm to your side as hard as it was to reach out. The effort of that action drains your core strength so the next action takes more to preform than the first. All the time that you aren’t moving that concrete is setting, action is the only thing that keeps it fluid but those actions drain more and more, replaced with a desire to stay still and accept the cocoon as it becomes more and more comfortable to just stay still, then when you have to move there is less strength and more resistance as the day goes on it increases. I feel as though I could lie in my bed now for hours, not moving, not sleeping, not even existing, but every pain is amplified, every spasm intense and the pressure on my body from mattress or seat becomes needle sharp. The fight between my body and my brain continues all day and my high points are when I can sleep and escape.

I know that all sounds bad, but strangely it has become normal to differing degrees, and I am by no means trying to scare anyone who also has MS as this is just one version, mine and mine alone, there will be others I know who could tell similar stories but none identical. This is how things are when they are bad and when they are good, well the strange thing is you forget so quickly and get on with the good for as long as it lasts. I feel bad for now but I will soon feel good again.

Listening but unable to oblige

Late yesterday Adam discovered we had had some mail in the morning and there was a letter for me, it was from the hospital and it was a letter which I have never seen the like of before, nor has Adam and he works in the record department. The letter said they had written to me to arrange an appointment and that this was my final chance to contact them regarding the appointment they had arranged for me. I have had no letter from anyone as you all know, on top of that it is from the hospital I asked not to go to. If I believe it, it sounds as though there is supposed to be a letter that has gone missing. Neither of us actually believe it, so Adam is going to do something a little sneaky, he is gong to phone then on Monday on my behalf not really telling a lie, he is just leaving out the part that he is my husband, he is simply going to say who he is as far as his job title, to see what they say. I really can’t believe the mess and the problems of getting what should be simple hospital appointment.

During the day my arm remained more than annoying but late on last night I found myself sitting on the settee in floods of tears due to my left arm, the sensation had increased as the day went on, I still could call it pain but I had lost all ability to find any position where I wasn’t being driven mad by it. When it became really intense I had this feeling that I had to squeeze it tightly, but my hands weren’t big enough and I wanted the pressure in two different places. I remembered there was a ‘tubie-grip’ bandage normally used for sprains in the medical cabinet, so I put that on over a 10 inch area with my elbow in the middle and grasped my wrist as tight as I could and it helped. Slowly over the next hour it lessened enough for me to go to bed, I had had a couple of extra Gins last night as well because of it, and the combination of that and the bandage I slept. I woke this morning to be still very aware of it but once again at a level that I could bare it, I took the bandage off, but within 10 mins it was back on. I really don’t understand this or why it wants pressure or how it is helping, this is really a new one on me. I don’t need to be a Doctor to know that something is happening to the nerves in my entire arm but what to do to relieve it and make life easier I an at a lose. Any suggestions welcome!

I have to say it has made me wonder if I bought some pressure stockings if they might help with some of the pain in my legs, it might also help with the fluid retention. This morning I have found one of my left wrist braces, Typing with it on is not easy, so I am going to try and wear it when I am not typing long sections like this, to see if that will ease it a little. I have this silly image of slowly covering myself with bandages and splints just to be able to sit on a chair. All though the bandage and brace are helping, my left hand over the past couple of days has been going down hill rapidly, what ever is happening in my arm I would say is a side effect or a part of my hand once again returning to useless, it has been slowly weakening over the last couple of months and having lost it before so I recognise some of the symptoms. Last night at one point although I could move it and it was work, I found myself guarding it and not wanting to use it, I actually found myself at one point standing in the kitchen trying to pour a Gin and Tonic with one hand again, I haven’t had to do that one for several years. There is the constant feeling that it doesn’t want to work it’s a little odd, but it is heavy and just like it needs this pressure it is also asking not to do anything. I always listen to my body but it is asking what isn’t really a possibility that I can oblige, two hands in general are needed, especially when so much else of my body doesn’t work either.