Sitting at the keyboard, laptop on the dining table, bum ensconsed in a comfy upholstered carver chair, wedged in with cushions, I listen to radio4 extra and have a little look around the net. I read what you guys are blogging, have a laugh and an attempt to put in my two halfpence in ( showing my age there gals and guys)
It's a nice time that I occupy, my own space.
Earlier today was completely different. My middle daughter has been staying a few days and she went off this morningn to go stay with some friends (she is on break from uni) I felt so tired, so tired. We have been out and about shopping etc and I think I used up all my spoons, I crawled onto the sofa at about 11am and put the telly on, next thing I know it was mid afternoon and I was really hot and bothered, in a dressing gown and under a duvet, tried to wake up, drifted in and out of a film, 4pm came and I got up a bit. Hub had been busy in garden and I didnt even know!
Gradually came too and got some food sorted, moved around and unstiffened.
Hub helped with tea and we ate, it was lovely. Since then I have watched a film on netflix and now I am wide awake, and not hurting!!!
Damn this topsy turvy fibro world!!!! Youngest (21) daughter has come in with about four mates and they are in front room, apparently they intend to curl up like a heap of puppies and go to sleep. I hope they keep quiet and don't wake hub up cos when I go up he will moan to me. Usually they are ok.
Rambling now!!!!!!!!!!!!! One fascinating think I found on net is the old accounts of court sessions in hte Old Bailey going back to the fifeenth century when you could be hung for stealing a handkerchief. Harsh.
Just istening to Just a Minute then off to bed as I actually have to get upearly and go visit my two old dears I help out on a monday.
Night All. xxxxxxxxxx
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spidey
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I know exactly what you mean, and we've been asking for years "Why do I go 'PING!' round about 11/11.30pm, when I've been too knackered to drag myself to the loo without shaking and collapsing all day? Why do I only ever feel vaguely normal late at night?"
I still don't know, but it's nice to see that someone else experiences the same, because it must be a part of the fibro. Finding out more of fibro's mechanisms can only take us closer to understanding how the whole thing works and what makes it do the things to us that it does. What I'm trying to say (not very well, granted!) is that the more common symptoms we can identify, the closer we get to finding a solution, a treatment, a cure.
I'm grateful for my brief forays into the world of normal; what kills me is when I'm so ill that I don't even get that, and when I my partner comes to bed at about 10, I conk out too. Then I don't wake up til he wakes me at 8ish, and I'm still totally knackered. Then I think, maybe I'll have a late night "PING!"......... and I don't. Then I#m stuck in that cycle for a bit, which adds feeling even more useless than normal into the mix of guilt over not getting any household stuff (bills, direct debits, changing credit cards, organising insurances, etc etc) and not being a fun girlfriend and not being able to reduce my steroids (and therefore my humungous size)........
The only thing I can think of to explain the sudden little splurt of normal energy is that the thing that is usually "spending" all our energy (which I think is a hyper-vigilant brain stuck in Fight or Flight mode, which in turn kicks the immune system into over-drive, which is what makes us exhausted), switches off for a bit. This sort of makes sense, because the body runs two seperate states in any 24 hour period - the anabolic or building stage, when it builds new cells, antibodies, hormones, etc etc, and the catabolic stage (it's taken me a few minutes to recall that word!) when it tears down bacteria, old cells, viruses, etc - ie, that's the time when the immune system is more active. Catabolic stage is generally accepted to be a daytime thing, and anabolic is a night-time thing.
So, my theory goes like that.
Embrace the vaguely normal times - you're lucky, like me, to a) get them, and b) have a partner who doesn't ming you wandering around the house and doing bizarre things in the middle of the night!
Lovely replies. Thankyou. Love that someome else does bizarre things in the middle of the night!!! /At least oh gets his shirts ironed even of I do it at three in the morning!!!!!
I've not posted anything before, but have often read everyone's input and it is a relief to find I'm not alone in what I face. I've only recently had a formal diagnosis of Fibromyalgia/CFS and am awaiting Physio and Pain clinic appointments. I have probably had it for at least the last 10 years or more without really knowing what it is.
However, I wanted to share this with you. I bought a book about a year ago which I've only got round to reading recently called 'From Fatigued to Fantastic' - anything to help me feel better/get some energy etc. It's really interesting and America seems much further ahead than the UK in researching and finding ways to help/manage the problem. The author (forget the name but he's an american Dr well into the Fibro/CFS world and doing lots of research) explains Fibro/CFS as the bodies way of preventing real harm/total burnout or collapse, like blowing a fuse on an electric circuit, but the body can't re-set the fuse so we're left with the fatigue/pains etc.
He talks about re-starting the muscles energy furnaces and suggests all sorts of supplements to get the body going. He has a formula SHIN. S=sleep. H=health.I=immune system and N=neural system/mind and body working together. It's worth looking at. There are questionnaires at the end of each chapter and the answers you transcribe onto the 'menu' at the back and so you can determine what is right for you in terms of how to manage the Fibro/CFS in each of the 4 SHIN areas.
I started using it only a couple of weeks ago and recognise it is a long term thing, so haven't any great things to report yet, but I'm up for trying anything that may help me to sleep better, to have some energy, less pain and to begin to feel able to cope with life better - and not have the topsy turvy life that you describe. I'm looking forward to feeling if not fantastic at least more 'normal' again!
I wish I haven't managed to drag my self out of bed since tuesdy when I went shopping, I have to go tomorrow so I'm gonna have to find some way of getting out of bed, my back neck, shoulders, hips and knees are agony and I'm so tired, I'm out by 8pm then awake at midnight till 2am then asleep again till 4am out again till 6am out again till 12 midday then cat nap for rest of the day well that's how its been since sat this week, Wednesday I some how slept all day even though I'm in agony I was so exhausted, even if oh and I do manage to drag me out I just do the same in a chair, Dr is reducing my amitryptoline in a hope that I will have some sort of a life again, yours snoringly Sithy I'm nodding again no fair
Hi Ellebe. Really interesting sounding book. Yes the UK are much more advanced with fibro thought than the UK.I will look up the book thanks. x
Sthandra, I took amy for about six weeks but I was so drowsy and dizzy I could not function. Maybe back to doc and try something less of a chemical cosh? Hugsxxxxxx
The same with me, it's at night that sometimes I get the feeling i feel better even if i might still be hurting. When this is the case i make plans for the day after to take advantage of the little high but the day after i am as usual and incapable of doing most little things i had planned the night before. this is a bit frustrating but at least gives me the opportunity to be more aware of things that need to be done.
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How can you be okay one day and not the next? I don’t geddit!
Trying to exsplane fibro fog,why do i bother ?!!!!
Why do I never learn?
ONE FOOT IN THE GRAVE ?????????
