It’s 9:50 and for the last half hour I have found myself struggling already to stay awake, retreating to bed feels like a wonderful option, but one clearly I can’t take this early in the day. When I woke yesterday afternoon after once again taking a longer nap as I did the day before, I struggled until Adam came home at 7:50pm from work as he was once again had taken the much needed option of overtime. My afternoon was very much like they have been for the last few days, with everything online completed before I slept, I was able to spend sometime to myself, just playing a game and taking things slowly. I discovered that the newest in the series of “Virtual Villagers” off shoot “Virtual Families 2” has been released so once again I am now bringing up a family with all the issues that families have, well at least the ones the programmers have put in their way. It’s really strange how relaxing games are like these, they take time there is no shoot outs, and life is virtually real time, as in a day is a day but that day is packed with events which are more like 5 years worth. I expect just to complete all of it will take several weeks but that is what I like about them, they don’t leave you feeling like you have been concurring amounting in 15 minutes. Because they are so laid back I can play something more brain taxing at the same time if I feel like it, but being new, well on it’s own is fine.
In all yesterday was an upbeat good feeling day, not just because of my game but I had also spent time arranging the flowers Adam brought me, on the scale of relaxation and gentle paced, it was a 10! On the food side well with yesterdays Chinese sitting in the fridge, I had plenty to finish off that was packed with veg and so on, but I also ate half a melon, my favorite fruit just now. Nothing about the day pointed towards anything but the positive, when Adam came home I felt fine and I was looking forward to our evening, but I also know his routine, which he followed right through to snoozing on the settee. As Eastenders fished I went to the loo, but as I stood up I suddenly felt terrible, it isn’t anything new to find myself standing at the edge of my settee, with my hand on the head of the bronze dog to get my balance, feeling really strange. I don’t know why I insist in calling it strange as when somethings happen frequently how can it still be strange? It is an odd sensation though, I don’t feel light headed or anything like that, but I frequently have this cold sharp shiver go from the base of my neck right to my feet and as it travels, I start to feel numb in different areas. Usually there is this a numb and chilled feeling on one side of my face and numbness that travels quickly but slow enough to be able to track it’s coarse, out over my shoulders before merging into the traceable shiver. I have to stand there letting it run it’s course before trying to walk, it is only seconds that from start to finish, each muscle group that it touches spasms briefly in response, making me flinch in response. If there is a connection I’m not sure but I have noticed that it always happens when my legs are equally bad and walking is a painful process. After a day that had been totally positive, I crashed in less than 5 minutes. By the time I had been to the toilet and I was walking back to the living room, I was at check out point. I had to head to my bed, not back to the settee, as I felt so awful there was no other options left to me. I know that it didn’t take me that long to go to sleep, but even my breathing was effected, the pressure band was there across me but it was the clearest and worst I remember it and not only was it across my front I could feel it cutting my in two, as it went from front to back, not on the surface but slicing through me. Last night it wasn’t it’s normal narrow band, but had spread right up the front of me, giving the left side of my chest a heavy feeling, deep breathing wasn’t painful just uncomfortable, so I consciously slowed and reduced my breaths until I found the point that the discomfort settled to bearable, a shallow slow pace which is totally controlled. I think I was asleep in minutes, either that or I just don’t remember.
None of this is new, it’s just it all happened so quickly last night, in less than 15 minutes I had gone from awake watching TV and feeling find, to being crushed by pain, numbness and totally unable to function, to totally unconscious. So much for my idea that sleeping more in the afternoon might give me a way of staying awake in the evening. This I know is an extreme example of crashing out, but it’s one of those things that make living with many chronic illnesses difficult. When your body can drop you from happy awake and enjoying yourself, to the pits in less time than anyone would need to even get home, you can see why so many people can’t hold down a job, or stop having a social life as you have no idea when or if this will happen. I guess that around 4 or 5 days a week, this will be my end of day, normally not so drastically, it is usually at a more reasonable pace, over a time spell of 20 to 30 minutes. But most nights I do have a reasonably sudden drop from fine to needing to go to bed, without any possibly of making it to the end of the program I’m watching. It is the speed these things manage to happen in that makes them so odd, it is like compacting the normal process that takes a couple of hours, into a mad number of minutes. Although many of the things that happen in those minutes match up with MS, with the pain, numbness and so on, but all the sleep problems, included in the crash speed I am now quite sure is more the Fibro. The two of them do seem to enjoy triggering each other into complementary actions. It’s now 4 months that sleep has dominated my life, but during the same time I have also noticed that increasingly there are huge areas of me that go numb, a bit like the circulation has been cut, but when that clearly hasn’t happened. Right now my right hand, the right side of my head and my left foot are all in that state, tingling and numb. It started a year ago with the pressure sensation under my ribs, little changed for a while then suddenly in December there was a kick start of all the other symptoms, but I can’t see why? My hated state, I always want to know the why? I guess there couldn’t be worse conditions for anyone like me to have, everything must have a reason, unless they are called MS or Fibro!