Sadly in my family there are a number of “Invisible Illnesses” lurking… Such horrible entities as Lupus, Graves Disease, Hashimotos & others and to most people (even close friends) every one with the aforementioned illnesses look pretty fit & healthy (Unless they are having a Flare).
For me, I just got sicker & fatter & slower over the course of the last 3-4 years – All the while shouting at my DR’s – There something wrong! I cant concentrate, My joints are swollen, I cant walk far etc etc… Only to be pushed from Dr to Consultant & back again (over 3 different hospitals & 5 different specialisms).
My work suffered & then I had to give up – as some days, just getting out of bed takes 2 hours… (If i can get out at all) – BUT some days I feel “OK” & I grieve for the me who got dressed & shot out to a 50 hour week job… Shes in here – Shes just stuck under a load of marshmallows, painful marshmallows… (Fat & Slow & Foggy).
Sorry, I digress (One of the great things about this illness- cant concentrate for shit)!
One of the most challenging things about this illness is the invisibility.. Believe me, Ive never been a “poor me poor me” person.. BUT sometimes that condescending, even disgusted look that gets shot your way when you cant walk/run/pick something up/open a bottle is so depressing…
So – Do you “come out” as a “Spoonie”?
I never wanted to – in fact up until very recently, I was arguing the point with every healthcare professional – NO I don’t have Fibromyalgia, I must have some “poisoning”, maybe “Lyme”, maybe Im allergic to something – Please find it…..
But After speaking with people online (MUCH better than any “pamphets” the RA dept gave me, Ive realised the pain I get in my joints, The agony in between my ribs, The feeling of walking on pebbles, the migraines and the hands that refuse to work, are all very classic symptoms of Fibromyalgia…
So I’ve plucked up the courage & told some friends (My daughters know already) – Especially the friends I feel I have let down by bailing on gatherings etc at the last minute over the last few years…
I’ve also told the guys in the Charity Football team I founded, as I knew this year I probably wont make it to every event Ive helped organise.
ON a side note – The Charity Football keeps me sane – Fibro takes away your dignity – It robs you of “you” and ME, I was self sufficient, worked 2-3 jobs to keep my girls in relative comfort after I became a lone parent in 2002. The stuff i need to do to support small charities, I can “work” on whilst laying in bed in abject discomfort – BUT The Dragon Speak program on my laptop,, just follows my commands and doesn’t judge that I’m in a mess…
So this year – I think more people will come to know about my illness. I don’t want sympathy – I want people to understand that almost overnight, I went from
To This:- (No way am I gonna insert a Pic of what I look like on a bad day –
its just too painful to contemplate the loss).
Anyhow, that’s enough for the moment 🙂
Time for tablets part 2 (Lunch) LOL