My day in brief….in the slow lane!

Am sitting waiting for an appointment, and am physically tiring from the WAITING!. How pathetic does that sound? BUT that is how it is!

I Hate them…appointments.

A bit futile…..But have to report a base line of how I am for when my symptoms change.
I am crap.


This is life with a chronic condition.

With a condition that very few people understand- even medics.

  • YES you can see my ugly scars…
  • you can if you look see my lopsided face…
  • otherwise you can notice my weight gain
  • and even WONDER why i am using Hazel (my walking stick).
  • You may think I am so damned lucky to have retired early..
  • .and wonder what i do all day.
  • Am i a lady who lunches?
  • NO. I am a mummy who holds back her children on a day out.
  • I am a wife who is cared for fulltime by my husband.
  • I am a human whose body has cheated her- and skipped 40 years ahead of where it should be

So don’t judge me…
READ this…
and maybe

Up at about half ten normally.

Husband wakens me – with breakfast .

Some days am actually still too BRAIN tired to get up, so i need another wee doze.
Every day I Need sleep by half one.

Take about an hour….Otherwise brain fog would stop me from functioning at all!
Awake back to sofa.
Legs up….obviously when feet are up they go numb but if they don’t go up they swell.
On most days nothing to do other than an appointment then am knackered. Physically.
If I venture to Gaelic match the effort of watching and processing all the movement leaves me brain shattered.

Other than that pain relief and meals as they are prepared and served by poor jimmy.
An evening walk – a slow walk with stick for balance. To mammy’s grave. I miss her. Daddy brings me. my daddy has to slow down his spritely walk and adjust to me and my cane Hazel, and our speed.
Bed time.
Try to be comfortable.
Try to sleep.
It starts again. GROUNDHOG DAY


  • Oh and lest i forgot…….throughout EVERYday
  • numb legs,
  • weak arms and legs,
  • headache,
  • backache,
  • eye sight problems,
  • exhaustion ,
  • ears clogged,
  • dizziness,
  • back pain,
  • neck pain….
  • Always the cocktail of symptoms.

My world.
Chiari malformations world.


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