Tuesday, 13 July 2010

Dissolving Concrete!

There's been a change in the weather here, from incredibly hot and humid, to plain old chilly with water falling out of the sky! Its been so long since that happened I've forgotten what it's called! Something to do with cats and dogs maybe?

It's a great thing though, it seems to have rained through my head, and taken some of the concrete with it, who'd have thought it, dissolving concrete! My head is clearer, calmer and I can think! Well, I know I'm maybe 'bigging up' my cognitive abilities, but it's all relative!

The world should get ready today as there are some knotty issues out there which I have been a bit remiss in sorting out. It's hard to have legality/policy based conversations with people when you are having trouble remembering what you were saying halfway through saying it!

There is a little teensy weensy bit of a downside though, cos we have ME/CFS and it's effects are always there - even when the concrete has trickled through the cracks in my brain. My head is clearer and feels great and I'm loving it, but my body is putting up a mega protest of it's own since the weather change.

I woke in head-to-toe pain yesterday, not something I usually suffer from. I generally manage to stay asleep if pain comes on overnight, it just hits me in the morning as I struggle with the usual joys of waking up. But this time I woke and was unable to move, call out, or poke my hubby to wake him! I just had to lay there for what seemed like an age, sweating and breathing my way through it till my arms would move and I could take the tablets which are kept in the bedside cabinet. When the pain had gone a little I was able to get up and go lie somewhere else, so hubby could sleep on.

I worked yesterday, even though I was a little drugged up on painkillers etc, but I made it through. I'm gonna have another go today as there are a couple of meetings I should be at, and I have tomorrow off anyhow.

It's a hard thing to do, to try to explain to healthy friends/family why I'd try to get to work through something that they would definitely stay in bed for. I think it has a lot to do with the constant sickness that this disease brings. We have to get used to a certain level of 'feeling ill' as being a good day, and if we stayed at home for every ache and pain we would, most likely, never be out at all.

I'm happy to put up with this level of pain (drugs accepted of course!!) if it means I get my head back and can carry on conversations and READ!

I hope that wherever you are the weather is being kind to you,


  1. Zarla -- I've done the same thing -- just accepted that I'm going to feel a certain level of sickness all the time and not stay in bed all day because of it. My body limitations are still great -- I can't go far from the house. But I do spend more time in the living room and am more willing to visit with people for a short time even though I'm feeling sick throughout it. For the first years of the illness, I thought I couldn't do anything unless I didn't feel sick. Now I just do things (within my limitations) anyway.

    I loved hearing that the concrete has softened. Still such a great image.

  2. You are right Toni, when I was new to this diagnosis I wondered how I could manage, but then my non-acceptance(at the time), stubborn streak and financial needs kicked in and I returned to working..
    All this happened about 9yrs ago now, and over the years I've gotten used to feeling sicker each day than many of my friends/family would imagine. It does get to me sometimes, and those are the days I'm not able to work.

    I have had a few big crashes which have taken many months to return from, but with each one comes a new acceptance, new insight and a strange calmness.

    I am enjoying that you're enjoying Toni...

    Although I'm not so sure that concrete trickling through my brain is such a great mental image but there we are-

    It still feels pretty good!
    Hoping you are doing o.k.

  3. It's good news that you're feeling a bit clearer, but bad news about the pain. My specialist thinks I have Fibromyalgia as well as ME/CFS and Idiopathic Hypersomnolence! [The last one is basically Narcolepsy, but I don't go into REM sleep.] So, in other words, I really understand about the pain! I hope you're getting sufficient pain relief. It's really hard to do anything, even think when you're in a lot of pain.

    No one takes my pain seriously now I've got the ME/CFS diagnosis. Before it, I was given a .morphine. injection when I was 9 to stop my back spasms. At 19, I'm getting these back spasms, and I'm told "not to slouch." I'm fairly certain even "specialists" are thinking ME/CFS is in our minds... Otherwise why not treat my pain?

    My main problem is I can't accept that no one will help me, and that I'll never know how disabled I'll be from one day to the next. So acceptance is something I've never reached. =|

    I hope you're well, and thanks so much for the comment on my blog! =)

  4. Firstly, Welcome Alex! Great to have hooked up with you-!

    Pain/muscle spasms is something I get, but mostly I can manage it and put up with the day to day stuff. It's the sudden onset stuff that kills me off!

    I know what you mean about the acceptance thing, and feeling alone and ignored by the docs/specialists. Here in the UK we have very little control over who we see, and this is hard going. I have had to keep visiting docs till one pops up who believes.

    Just last week I saw one who was of the 'it's all in your head' kind- I threatened to report him for flawed clinical knowledge and bad patient manner... he is much nicer now! (I don't recommend this approach, but I'm afraid he asked for it!!!)

    Acceptance is a long, difficult, traumatic and emotional road for all of us. I don't really know how far I have travelled towards its end, or if there ever IS an end to this road!

    I do know that my online and face-to-face me/cfs friends have speeded up my journey along it through shared understanding and plain old caring and love.

    So, Welcome again, and huge Elephant hugs go to you...
    take care

  5. I absolutely luv your termonology Zarla, its brilliant, and something i'm sure many M.E sufferers like myself can relate to. Keep on with these wonderful blogs :) xxx

  6. Hiya Stacy,
    Good to see you here, I appreciate you taking the time to visit this week, not been an easy one!

    Thankyou for your compliments once again, does a girl good to hear stuff from time to time!

    Take care chuck, relax and revive!

  7. Thanks, Zarla. =)

    It's not taken seriously in Australia, either. So many people tell my I'm lazy, or I should "pretend" to be healthy, and then I'll immediately recover. Or that I'm an attention seeker. No one really understands, and there aren't any M.E support groups that I can get to, if there are any. The state's ME/CFS organisation is understaffed, and doesn't provide any help.

    I keep trying to accept that I'm disabled, and I think I have, but I just can't accept that my limitations/abilities change daily. I need stability, and M.E has robbed me of that.

    How do you deal with your pain? And I hope it lessens soon. x (I've written a new blog post, with pics, I hope you like it!)

    Take care.

  8. Alex,
    Yes I find the constantly changing state of me quite a hard thing to get my head around too. One minute ok, the next not- how can I expect others to get it, but if I tell em how I'm feeling, I sound like a whinger!

    We just can't win, thats why it is so important to have friends who 'get it'!

    I joined a local M.E. group, although their focus is on social activities, and mine isn't-I did make some real friends through it though, I don't know how I'd manage without them!

    I spent almost 10 years trying to hide it, and pretend it wasn't happening but now I am more open, I feel tons better!

    Being able to give that support is just as 'therapeutic' as receiving it!

    My body is better today, thankyou for asking, I'm trying to ignore the state of my house, and not be lured into doing any tidying etc.... don't look Zarla, don't look!

    Take care, I'll try to visit your blog soon,

  9. Zarla, So glad to hear of "partial clearing" of the concrete...the rain leaking, your bright, intelligent thoughts through. You say it well, that even when it's a "good cognitive" day, week etc...it's still a mighty challenge in the land of healthy people with little concrete in the brain.

    Zar, do you have FMS too? I do, and once in awhile the all over, bone deep pain rears its head. I forget how awful it is. I believe I don't feel the symptoms of FMS as often as I used to because I am not able to be active enough to flare them up. Also, weather is a definite trigger for FMS pain. Wonder if you might have been extra active the day before the morning you couldn't move and were in such pain.

    Here's to you hanging in at the meetings at work with the challenges of an ME brain. You are one tough babe... I've missed you!

  10. Hey Kerry!
    REALLY REALLY pleased you're back! I've missed you too - and I just LOVE being called "one tough babe"!

    I've never had a diagnosis of FMS Kerry, and don't think I get the 'tender pressure points' to meet the criteria.

    It is a VERY stressful time at work, and I think this has been going on long enough to exascerbate (spelling?) the physical symptoms and pain. Not helpful to say the least!

    It's been AGES since I posted this, and now have another 'something lovely' to pass on so maybe later today, fingers crossed I'll get to post.

    Still, from 'One tough Babe' to another,
    Take care,



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