the trade off my life has become.

my life has become a trade off.

or i suppose better put as a constant series of trade offs.

and although i may “accept” it as nothing i can change by willing it were different, i still don’t want to look as if i am indifferent about the limited days i live, and am NOT “accepting” that this may be it…without trying to improve it.

for EVERY action with me there is a REACTION. but unlike the laws of science it is NOT equal and opposite,

it is unfair and seems ridiculous.

  • Today, for instance, i woke at 11.45 (wakened by my OH) as i had a arranged to take a sectional choir practice. I taught the ladies sections for about an hour and a half.
  • NOW i am going to sleep!. As my LEGS don’t feel they could make it to anywhere. And the only place they were to go, was to WATCH my eldest son play gaelic.

i am too tired from the neck down, to WATCH a match.

so the trade off is sleep.

I will sleep for hours. probably 2.

then the trade off is that i MAY be able to go to the gaelic match for my youngest later but my legs and actually my right hand side, suffer DISPROPORTIONATELY to the temperature, so i will be the mam WEARING a blanket rather than a fleece.



ordered these attitude boots, and they arrived Friday.


so let me rerun Friday.

Friday set clock early as my sister offered me a shopping morning. We do it once a few weeks and it cheers me up enormously and i feel HUMAN, like ME almost.

She drove, we put the wheelchair in the boot. And it is pimped nicely. Have a Beatles cushion, and a Moulin Rouge one for my back and have actuallly spent the money and ordered wheel spokeguards, So it will be MY chair,

out we get 
photo 1 (15)


dressed as ME. the real ME.

spent a few hours, even managed to meet daddy for a cuppa.  a LOVELY laugh of a morning.


put on the boots.- very ME boots…attitude and not apologetic. ,,,disabled not 2 (20)


BUT then i ate luch – made by OH.

i slept for 2 hours….before which i could barely slur a sentence together.

Woke about half 4.

ate, prepared music for choir.

TOOK and loved choir practice. What i was designed to do. 6-8 and LOVED being the REAL ME…doing my thing! then home

Sat about an hour or possibly two and then BED.



not fair.

but is how i am.

so if anyone tells you how well am looking? that’s taken me a trade off too. but dammit i HAVE to feel HUMAN sometimes? the LIFE of a constantly ill, pained, fatigued , rare condition owner.

take me as your example!






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