Wednesday 26 January 2011

How am I?

Dave keeps nagging me not to forget to mention my health stuff. It is a "Diary" after all, so he tells me.

"But I feel fine" I whined. "There's lots going on in politics and campaigning, I'll write about being a sickie when I feel sickie again."

He gave me a look.

"Hmmmmm. How many times have you had diarrhoea today?"

"Weeell, six or seven?we "

"And what happened yesterday when you took the kids to a supermarket for the first time since your op?"

"Weeell, I couldn't get back to the car and had to sit in McDonalds for an hour and a half."

"And how do you feel today because you overdid it?

"Like I'm made of stiff things and jelly things all at once."

"And how are your legs healing from all those injections?"

"Weeell, I DO get almost constant cramps and unexpected stabbing pains. I can't get down on the floor and if I try I can't get up again, lol"

"Are you sleeping OK?"

"No! You know I never sleep OK, I'm too used to being up all night in pain."

"And where do we get to go on the 14th February, to celebrate Valentine's Day?"

"OK, OK, We take a 260 mile round trip to hospital for a consultant appointment and a bone density scan."

"How long is it since your operation?"

"Ummm... (counts on fingers) 5 weeks"

"Can you walk the boys too and from school yet?"

"Weeell, no-ooo, but..."

"And when will the chemo injections start again?"

"I'm not sure. Soon, but...."

"And what meds are you still taking?

"Weeell, lots, but less than last month!!!

"Right, will you PLEASE blog your version of well? Will you please explain that this frenzied burst of literary outpouring and energy is a Seize-The-Day type of determination, not due to some miracle cure? Will you show people how little un-well people expect and how low the bar of "well" is set? Will you explain that your "well" would definitely see most people calling in sick, unable to get out of bed, let alone go to work?"

"'Kayyyyyy. *said petulantly, scraping one foot on floor, pretending not to hear*


  1. "Will you explain that your "well" would definitely see most people calling in sick, unable to get out of bed, let alone go to work?"

    Well said that man!

  2. Great post Sue - so much I recognise! A friend who also has MS always asks whether I'm OK-ish, on the grounds that nobody with MS can be any better than -ish. I stage a little revolution against this, and tell her I'm good, great, whatever, in spite of the fact that I've spent the last year virtually housebound by fatigue. My point is that *within my frame of reference* I'm good. I'm not going to spend the rest of my life saying I feel dreadful! (except to the DWP, clearly ;-)

  3. Another great post Sue. I always feel like I have to play it down cos if I say I'm good then people expect me to be the healthy equivalent of good. So I say 'not so bad', then feel like I'm whining :(

  4. I love that you spoonies are so supportive - it's a gret network.

    Beware the politicians ignoring those of us at home constantly vomiting and dislocating and dribbling! We have keyboards and we're not afraid to use 'em!!

  5. Brilliantly said! Funnily enough I was writing from a slightly different angle as you were writing this!
    BG Xx

  6. Sue,

    Super post, as always.

    I cannot believe how blasé I have become about being up once twice, sometimes three times in the night with one or more of my conditions.

    I am nowhere near your situation but the norm changes so easily; also because I look pretty well on the days I go out and see people I have stopped responding when they tell me how well I look.

    In August I stopped breathing for almost a minute and a half, and an incident like that gives one a different perspective on all sorts of things.

    I admire your tremendous courage and intellectual energy; indeed today I was telling my newly pregnant daughter about the blog [she works with mentally ill people] so I guess you can expect another reader there.

    Keep going Sue - for all our sakes.

  7. Sue. That is so spot on. I've been unable to walk more than 50yds or so since last July without intense pain, but have played it down so much that no one can understand why I can't get back to my part time job. Last week however was (I hope) the beginning of improvement when I saw an NHS podiatrist who within seconds diagnosed a damaged tendon and initiated treatment. I waited months for that appointment, had run out of sick pay and was under threat of losing my job.
    The NHS has already been badly broken. Long waits for appointments, like this, had been consigned to history. I have this feeling of despair. Will I have to wait this long next time my slightly dicky heart decides to have a wobbly?
    Today tho' was a better day, I managed to walk for 5 minutes without pain (in the recommended wonderful boots that I paid £125 for!).

  8. I so relate...funny I have been saying a few times in the last week about how my 'well' would put many people flat on their arse feeling really bad....but you said it so much nicer....grins and big hugs

    I have had many time where I haven't realised I have a really bad infection...ear/chest...I can't always tell if I have a bug...I'm used to low health so a 'great day' for me could be a day where someone who is used to a more normal health may struggle on and do maybe reduced daily things feeling stoic for managing...

  9. I've been travelling around your blog this evening, found by chance. Thank you! You're an amazing writer, inspirational and courageous! I hope the condems hear your voice because it's a mighty powerful one. All the best x

  10. Great post.

    And you are an excellent writer as the above person says. Keep on fighting.

  11. As you mention in your posting, feeling 'well' is all relative. Feeling better than the day / week / month / year before is often seen as feeling 'well' in my opinion…

    …also, there is a balancing act between the effects of the condition(s) and the side effects of the medication(s) you're taking. For example: Pain gone, but muscle spasms increase. Which is worse? Just because the symptoms of your condition(s) have diminished, it doesn't mean you feel more 'well'…

  12. Can I borrow this to show people at work? A "good" day for me is one where I can get further than the bathroom before the "making me want to vomit" pain starts; like today - where I actually had the spoons to prepare veg for dinner (while sitting down) *and* put a load of washing on; where the pain is only 4/10...and so many people don't get that!

  13. Of COURSE you can One Girl - that's why I write this stuff!! Publish it in the Times if you like, I never feel precious about what I've written, just happy that maybe some people somewhere will take a little heart from it and think "it's not just me."

  14. Inspired by Sue here's my "I'm fine" blog

    BG Xx

  15. Your humility sets you up there with the best, your courage shows you are the best. Your voice speaks for many of us and is heard. Thank you.