how would i like to change???

how would i like to change – the question was put to me recently in a medical way.

?? do i be the “comedic me” who lists the tummy tuck? face liposuction? neck lift? an OVERHAUL which may even emotional help me!

?? do i be “cynical me” – and retort “do you think i need to?” ” who says so”?

?? or do i HONESTLY feel as low, as weakened by inept months and months and months on “care“to relieve the burden shouldered by my family, years between specialist appointments to see regional experts -the years on each waiting list, praying for ONE interested specialist to stand above the parapet and say

“THIS WOMAN is NOT the SUM of YOUR evaluation of her symptoms…

not being measured sufficiently under all of your combined but separate cares….

YOUR gauges of what is humanity or cruelty do not get viewed in the failing NHS narrow-minded 10-minute-slot-every-18-months..

she has SEVERAL rare diseases…SEVERAL…

can we JOIN our MULTI-MODAL-MEDICAL-SPECIALISMS and see if we can help in some way – holistically.

Help not to treat our “specialist organ”and ignore the fact that the body is a SYSTEM. A system of systems.

RUN by the BRAIN.

her BRAIN is, we KNOW the origin of her physical pain, numbness, fatigue, emotional intolerance….

except NOBODY says that except ME.

??? So WHAT do i WANT TO CHANGE???

i WANT YOU TO HELP ME BE HUMAN AGAIN…and stop ripping me apart.REPAIR me, please! You KNOW how damaged i am!

having had brain surgeries, then meningitis, and had to have a VP shunt fitted was the GOOD PART! The SOLID GROUND.

i was part of the discussions – with the doctors, knew what options were and weren’t.

in the 3 years since i became a day patient, i have aged in my mind too many.

am worn out being once again broken and seen as a medical puzzle.

THIS YEAR has been my worst. Emotionally i have felt walked on, torn apart, examined wrongly in order to fail. Become a very paranoid emotional prickly person and THIS due to a system that is designed to help. This woman who cries as the drop of a hat, who see’s reasons for any word used to her, who examines the examiners….who is EXHAUSTED…mentally, and emotionally EXHAUSTED.

the Physical symptoms also have gone from:

Rare…vague and obscure symptoms over 10 years….misread scans…. to  FINALLY the OSCAR_WINNING moment where i had a condition …….labelled…

and needing surgery which will not cure. And of course brain surgery brings it’s own left overs:) – physically, cognitively and emotionally.

Recovery – plateau – not recovering – inability – disability -increasing dependency 

all while medicated, seen by doctors and all appropriate to my first condition.

now sleep with a ventilator

have a squint

pain all the time

use  a wheelchair (although a few wonder why)…. WOULD YOU? as a look?

manage on a GOOD day to be about 8 hours awake

ANY extra event – pleasant/ pain/journey no matter how banal means recovery.

At times i feel rare conditions are treated as locked in conditions. i want to SCREAM but WHO to? WHO CARES? I am the only one who knows what the day is like – other than my poor family- 24/7 caring, hiding, pretending, trying to redesign the expectation of NORMAL for us.

LOOK AT ME. OVER THE 3 yEARS. KNOW some of it may have been avoided with timely appointments, a bigger picture being looked at than a small part, myy CARE was in your hands. i TRUSTED that.



I am a mother and wife.

A  punch-drunk tired HUMAN.





  1. This appears to be a WTF post and I love it. I also care. The invisible illnesses have you feeling isolated and wearing fake smiles. Well-written. Sorry you’re experiencing chronic pain, stay strong. Hugs to you.

  2. I’m so sorry. That is a terrible way to feel.however I think your a warrior because you may write about your pain and frustration but you write so well with honesty and heart, a warrior does that. Each day wakes up smiles and starts again.

  3. I can only imagine how hard this has been for you, but you are strong Helen and your story may help someone else. So continue to write honestly and qyite frankly about what you are going through. I’m prayingfor a miracle. In the meantime hang in there; stay strong and don’t let thisse circumstances defeat you. Love, hugs, and blessings. 🙂 ❤

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