Phased out

I woke this morning with reluctance, I am not sure which happened first, my turning off the alarm or the first of one of those yawns that leave tears running down your face. I was still yawning when I eventually sat down here after going through my normal morning routine, toilet, turn on PC and TV, fetch a glass of coke then sit for a minute having my first cigarette of the day whilst my PC settles itself after waking up along with me. I would love to know why tears appear with yawns, I do know all those things are connected but it has always struck me as one of the odd ones as I can’t find any evolutionary reason for it. I was actually truly surprised to find myself waking to the alarm as last night had strangely been the first full nights sleep for the last four days, every night I had been up at least once but despite taking a med that normally wakes me due to the pain it causes, I slept. I knew all too well that I was overtired last night, but I have felt that way every night in the past week and still landed up not sleeping well. I do seem to be in one of those tired phases where there is no other feeling at any point in any day, being tired is just so draining on everything else in your day, those routines and plans never run to schedule and your brain just sits there laughing at you as you try to struggle with the whole process of living. But the biggest problem with tired, if you don’t manage to deal with it sooner or later it turns into fatigue and believe me that is something to avoid.

The phasic nature of Fibro, PRMS and I suspect all form of this condition and several others, is something that is so totally annoying and very difficult for others to understand. No one who is watching us without living with us can truly get their heads around it as it doesn’t fit what everyday life shows us. We all understand the learning process and how once you can achieve something once, well it might not be perfect, but you can then always do it. Equally everyone understands a loss of ability, through accident or illness, but once gone, well life has shown us that it is very likely never going to return. So to know someone can walk and to see them in a wheelchair the next day, doesn’t quite fit, especially when a couple of days later they appear to be walking perfectly. To the average person, that is a picture of something else, not illness, but possibly someone who is as they say “swinging the lead”, trust me it’s nothing like that. Progressive conditions can remove quite suddenly or quite gradually any skill or ability, along the way those abilities come and go, one day possible the next gone again and all you can do is constantly test what your body will let you do. Phases can last days, weeks or months and it is one of the hardest things to deal with as we never know what will happen next, or if we will be able to do something tomorrow or not. Making plans for anything becomes harder and harder, why plan a holiday when your health might mean that holiday is going to be spent in bed, as you have a perfectly good bed at home, which you don’t need to spend a fortune just to lie on it. Invites to weddings, parties or even for dinner that night are impossible to say yes or no to, as we don’t have the slightest idea how we will be at that moment in time. Our abilities and disabilities are never the same minute to minute and even totally losing one for a long period of time doesn’t mean it will never return although the longer it is gone the less likely its return is. From the point of view of a healthy person, none of that makes sense, especially when that healthy person is your employer, they need to know how you will be every minute that they are paying you for. From the point of view of the person living with it, it is even more frustrating as we have to add in something else, the question of is this just a phase or is this it for life.

Life is a waiting game for every single one of us, life with a chronic illness, is an even bigger one as there are so many elements that are totally out of our control. It’s phasic nature is just another of them, but it is also one that gives us just that bit of hope as we have already learned that not everything remains the same for ever. Maybe tomorrow will be a good day, the end of a bad phase and the start of a better one, all we then have to do is get through today and we might just feel better tomorrow. I know that I have had good days along the way, but it is beginning to feel as though I haven’t had a single one since the start of this year. Everything that started to go wrong when my bowels shut down and have stayed wrong ever since. I am not just physically tired, I am becoming mentally tired as well, life is hard right now and I don’t make any apologies for saying so. It feels as though that last good day was so long ago and I can’t actually remember when it was, don’t take that wrongly, what I am talking about is purely good days with my health, nothing else. It doesn’t matter how many laughs you have, or how many times you smile, that doesn’t change how you feel physical. Health is and never has been anything to do with happiness, that I can always find, I just can’t find my good health any longer, this phase of being ill has lasted too long, with other phases mixed through it just to keep me guessing.

Read my blog from 2 years ago today – 10/04/13 – Earlier than normal >

Right I need to give myself a chance of getting back on track even slightly and the only way I can do that is to change things and see how things go, so from today until further notice, Touching Space will only have a new entry if I really feel up to it. In the last few weeks just writing those posts have been taking more and more time daily, once so far behind and with no……….