11:49pm Thursday 4th March 2010
By Stacy Hart
On the rare occasion I go to my doctors he says “You put everything down to M.E and you can’t do that” even my friends say it. My reply to the first half is “Too damn right I do” and the second half “wanna bet”? There are heaps of positives for doing it my way.
When you’re ill on a daily basis with a multitude of horrendous complex symptoms how the hell do you know if you’ve got anything else? At least this way, in my own mind I never get any of the nasty bugs and viruses doing the rounds, nope it’s just my M.E. When people tell me they’ve got swine flu, or the norovirus I often sympathise with “awww it must be awful” when they ask me if I’ve had it I say nope.
In truth I could’ve had the blooming lot but I would’ve just passed it off as an extremely bad time with the M.E and count myself a very lucky girl to be avoiding the lergy that seems to be hitting the masses. See this is when I totally believe in ignorance being bliss................................
If I didn’t put everything down to M.E I may as well pack my bags and move into the doctors surgery right now. (I just need to pause here, my mother is dancing around with excitement at the prospect of me finally moving out and she’s gone and got my suitcase out ready, so I just need to explain to her I was only speaking theoretically). Right, mother bound and gagged in the corner I can continue.
When you have an illness that affects your every being, every single day 24/7, how can you possibly know if it’s something else without becoming a raving hypochondriac? The excruciating head pain caused by inflammation would suddenly be a brain tumour, the crushing pains in my chest and numbness in the arm and face courtesy of muscle and nerve problems would be a heart attack, the total exhaustion would be leukaemia, and so on and so on. www.afme.org.uk
Even though I also have Fibromyalgia and osteoporosis, I don’t even let them have a look in, everything’s down to the M.E. So many illnesses have similar symptoms it’s hard to say where one starts and another begins, which leads me to my belly, my belly started swelling to humungous proportions again this week, I even stuck a picture of it on face book for all to see, this is a common symptom and extremely uncomfortable.
“Is it wind”? Someone suggested, “No, i replied it’s not wind, if it was and i let one go, i would’ve without doubt taken out half the houses in Greenbank road by now”.
My good friend Doug from Minneapolis however, doctored my original photo to suggest what he thought the problem was( see pic) and good minds think alike because I’ve always said it feels like I’m in a scene from Alien and something’s about to burst out my belly any minute. So Doug, if we’re right, the little critter will be named after you rest assured and I’ll count this pic as my first alien scan.
I’ve just had my date through for my appointment at the chronic fatigue unit in St Albans and it’s at the beginning of April, am I optimistic? Er...I have to say no, because still nobody ever seems to answer the phone at St Albans hospital.
I was one of the fortunate to attend the pilot scheme back in about 2003 when we were told the staff wanted to learn from us what worked and what didn’t, but whenever we tried to say something wasn’t appropriate we we’re basically told “tough we’ve no funding” so it all seemed a waste of time but everyone including myself hung on because like most M.E sufferers we were grateful to have something however inappropriate.
I keep being told how much it’s changed but worryingly I’m not getting any sense of that at the moment, with my appointment was a form to fill in, the same form used in 2003 that we pointed out wasn’t relevant for M.E and impossible to fill in honestly, due to lack of funding the same form is given to anyone with an illness but it doesn’t allow for an illness that fluctuates day to day hour to hour.
There’s six pages in total and an anxiety and depression form with questions like: - I have lost interest in my appearance.....huh?......I haven’t lost interest, I spend hours trying to perfect the just got out of bed dragged through a hedge look.
All the forms have fancy headings “the rand version SF-36 physical function” and the “Chalder fatigue scale” that asks questions such as “Do you have problems with tiredness”? “Do you feel sleepy”? “Do you lack energy”? “How is your memory”?
OH I know that last one.....er, no actually I’ve forgotten, anyhow, are these trick questions or something? Aren’t they the ones who are meant to be the experts? Have they not looked at the symptoms of M.E? Just mark me down as “yes” for the whole sheet and be done with it.
I only wanted some cognitive behavioural therapy but I have to go through the proper assessment again with the whole team in order to access it, and I’m still not confident they actually do it, whenever I’ve asked they say yes but.......so I won’t know for certain until I’ve attended my appointment so I will keep you posted.
I have got to send massive congratulations to my brother Lee who went off to Florida with Jo and the kids Natalie and George on the pretence of a holiday but actually got married out there. The whole family are made up for you both, great news to lift the spirits.
While Lee was on the plane a guy from Sony records was sat next to him so seizing the opportunity on my behalf he told this guy about me and gave him my name and face book site. I was so touched when I heard, whether anything comes of it or not an opportunities always worth grabbing, thanx Lee. www.myspace.com/mamachill.
Musically, oh boy the choir are sounding hot; it’s really coming together and a dream to work with them. I never thought this would be possible. I’ve had other artists saying to me “oh wow that’s something we’ve always wanted to do” so I feel very lucky to be doing it. www.gospelmanna.com
I’m still quite poorly at the moment so it’s been difficult to do much, but I’ve still done stuff nonetheless and I was chuffed to make my debut in the Action for M.E quarterly journal “Interaction”as a writer with a whole page of my ramblings to fill it with, it’s on a trial basis and depends whether the readers want me to stay or not, it was a real honour because the last writer to have the page was Beth O’brien who entertained us all for six years so they were very big shoes to fill.
But a big thankyou to all those who’ve taken the time to contact me and leave nice comments. Today interaction, tomorrow the times? Never hurts to dream big eh? Lol!
Enjoy the weekend, see you next week, Stay blessed, Back before Elvis :) xxx
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