Illhealth became disability!
Osteoarthritis in spine
constant Back pain
Salivary gland problems
arachnoid type cyst
So many symptoms :
- back pain
- irregular heartbeat
- Neck pain
- Slurred speech
- limb weakness
- extreme fatigue
- Inability to exercise at all
- Facial features dropping
They are composite conditions
but the awful part of it for me is that they are not visible.
That strangely was a great advantage
Initially – or so it seemed.
It meant that nobody knew I was sick – even me- as sick as I was that is.
NOW my life doesn’t really qualify as much of a life – physically.
I walk on stick
i tire quickly
I sweat facially
i have a sedentary lifestyle – not governed by choice but by pain and genuine disability.
Have had years of pain management through medication and pain control clinics but at the moment NOTHING is helping.
This may sound as if I am making the most shallow, superficial and pathetic statement, BUT, the only two things that are visible to the outside world of my many illnesses are the disproportionate facial sweating and the weightgain.
Both judged so casually to the casual small town public as
let her self go
Look at the sweat!
oMG she is getting bigger!
Now I could argue my point but what dignity would that afford me?
in 18 months have gained about 2 stone.
At a shortarse 5ft 2 that amounts to at least 2 clothes sizes – almost 3!
I HATE how I look.
I can’t even wear a hairdo.
If I were asked out socially, HOW could I go out and sit mopping my face and neck? With my hair scraped up!
even my face shape has entirely changed.
i find myself avoiding invitations,
hiding behind people in photos
editing and cutting myself OUT of family shots
avoiding being in the memories.
locking myself out of sight, out of mind!
have been so ashamed even conducting choirs the hair becomes SOAKED,,,dripping…as i face the choir of 40 odd people…all making their own assessments.
wanting to cry when you get the pitiful…that dress is lovely – as you attempt to COVER everything…knowing that 2 minutes later there will be rivers of sweat in my hair…and suddenly my lovely blowdry looks like i stepped out of the shower. Who gives a SHIT that it is called Facial Hyperhydrosis!….i would even FEEL pathetic trying to explain that!
Of course I have explained how I feel to ALL the specialists in my care.
Most of them – just looking at their part of me, talks about weight not helping….
i need that???
I have one or two sympathetic doctors who do seem to take on board HOW I am affected by this, but other than assure me the growth on my brain is causing autonomic nervous system to do all this shit to my body, do they REALLY not feel that here I am, getting depressed- albeit understandably, about my overall illhealth???
I have spoken to a few friends who have done the polite options:
well you look great to me!
don’t be stupid
Would you worry what people say?
But I HATE the fact that everytime I try on a recent buy, even it now doesn’t fit!
I positively HATE how on any exertion, on any change of temperature my face and hair (from my malformation up) sweat irrationally and uncontrollably – and tbh the knowledge that it happens others with the chiari malformation, does NOT help the shame that I feel as I see the looks.
I also, ironically HATE the fact that weight bothers me. Have always been angered by people who made judgements based on SIzE- and who seemed to spend most of their lives On some sort of DIET!
Yet here I am!
Unable to exercise
In a BODY which doesn’t relate to what I eat, and makes my health worse.
I now even HATE being photographed from the neck up- as my face shape doesn’t really belong to me.
And mostly I HATE ME – because despite having these dangerous conditions, THIS upsets me so much!
I spoke to my friend (and cousin) Pat.
She didn’t answer at first.
And when she did, it wasn’t the placatory bulshit I get.
She told me what she would do – and has done – to control her weightgain from giving up smoking.
And I realise I can’t exercise!
not at all.
BUT am trying things.
Lunch is now fruit.
Bread is OUT.
And at night, because my life is limited in itself, I refuse to NOT have a wee treat. So last night I ordered yoghurt, meringue nests and berries…her idea.
Please GOD it helps…
Because I have almost become sociophobic as to the narrow minded world, am judged.
And unfortunately ashamed as I am to buy into this……to me……
SIZE DOES MATTER.