If you've read my brief Bio, I have mentioned that I have M.E. or Chronic Fatigue Syndrome (CFS) as it is referred to more consistently now.
Over the years & a lot more recently, friends have questioned what is it?
For some of those that I see in person, it is still very hard to offer an explanation & it is also extremely difficult for them to see how it affects me. When I see my friends (which is not a lot - maybe once every 6-8 weeks at most), some of them just don't get it. I totally understand this, as to look at me I just seem tired or run down at the most whether in my wheelchair, clutching a walking stick or not.
If I apply some make-up, it looks as if there's nothing wrong at all - thank you so much to the wonderful companies for inventing great make-up!!! I'd be lost without it!!!!
I just thought it may interest some people, & offer a little insight into my world, if I wrote a short run through of my normal day to those who often ask about my condition. This is as much for my friends that I see as it is for those wonderful people I have met via the wonderful virtual world wide web. You have all inspired me to write this...
07:30
Alarm goes off - take tablets; one for mood swings, two for time release pain killing,two for instant pain relief & one other stronger pain killer. Am unable to move
10:30
My carer visits, wakes me & makes sure I am looked after
11:30
Wake up in pain - take two pain killers. Am unable to move
12:30
My son comes in from school, wakes me up (if he can), tells me what he's done at school then gives me lots of kisses & cuddles. Am unable to move
12:45
I fall back to sleep
14:30
Wake up, am unable to move but I'm generally awake at this time
15:30
Take two pain killers & one stronger for instant relief. By this time I can move a little but still need a lot of help
16:15
Spend as much time with my son as possible
17:00
Take first lot of two sleeping tablets
18:30
Take second lot of two sleeping tablets
19:00
Get ready for bed (not that I've been out of it much, if at all)!
19:30
Take two time release pain killers & two instant relief painkillers
21:30
Wake up in pain. Take one instant relief painkiller. Am unable to move
00:00
Wake up, unable to sleep - take third lot of two sleeping tablets. Am unable to move
07:30
Alarm goes off - take tablets; one for mood swings, two for time release pain killing,two for instant pain relief & one other stronger pain killer. Am unable to move
And so it goes on & on.......
Of course, not everyday is the same & there is a lot more to it, like needing assistance to move at all.
I do have days where I wake up a little earlier or am able to get around but those days a very few & far between.
I know it looks bad that I take all of these tablets! However, I lived for years not touching anything except any natural therapy available (at considerable cost) & those years were the absolute worst. At least now, I have a general pattern & when I do get some extra time in a day where I can do more, I am more than happy!
All the doctors ask 'How many good days do you have per week'? My answer is that 'I do not have good & bad days, but good & bad hours in each day'. If I am alert enough to spend an hour or so with my son watching a movie, watching him draw, playing with craft items or reading books etc (if my brain is up to it) - I class these as good hours.
Generally though, I sleep 19 hours a night/day & have an absolute maximum of 3 hours where I am pretty coherent.
I will end this post now as it is very long & has probably bored the pants off you but I will write more about my condition, & how it affects me personally in the future. If, in the meantime you would like to know more about how it feels to have CFS, please do read my previous poems as they sum up an awful lot about it.
I'm off to rest, rest, rest!
Thanks guys & be lucky x
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