LAST week i was ludicrously fatigued..
even on a scale of my fatigue.
In long-term disease, the level of fatigue i can only describe as CELLULAR…every cell of your body becomes unable to function.
at ALL times it affects my legs. – i don’t have to USE them for them to feel exhausted… they ARE.
it affects my cognitive functioning…as in my THOUGHT… that basic. I struggle with concentration. We aren’t taking high level executive function… i MAY struggle to form a sentence!
my speech slurs…i can manage to control it to a point but only to hide it a bit…like if your mammy found you’d had a drink… BUT i slur…i slow… i drag speech. is often flattened by a well wishing friend who meaning well says, oh GOD i wish i could lie down… please don’t take this as aimed in rudeness but a NAP is NOT a luxury when you have no choice. WHO would wish to sleep til lunchtime, get dressed, need a nap….do kids homework with them…and then feel ready for bed?
but THIS LAST WEEK was silly tired as in i am in future going to read exceptionally tired days, in a block of time when i have done NOTHING that seems even vaguely to have caused them, as a “symptom”…a prelude to a FLARE -UP…
as that was really the only thing i had as a hint all was not well.
The i woke of early hours of Saturday morning… with an OMG-sedate-me-through-this-pain-NOW-headache
had to head for the drugs – aka wake my OH to get my drugs… heavy level…
so hasn’t hit pain at ALL and am maxed so realise have to go to get doctors appointment.
Doctors were surprisingly CLUED in … not a condescending comment…merely have been in a “RARE” category for so bloody long…. but having never since i have been labelled “CHAIRI MALFORMATION” … and since the my only experience of hospital was a specialist unit…my concept of what to expect was flawed!
Quickly admission was decided on.
Option A: maybe infection in shunt
Option B: malfunctioning shunt.
but immediate plan MEDICATE and bloods.
admitted to MEDICAL ward…which as a non-neurology unit…instills me with FEAR 😦
- no infection in bloods
- CT scan showed no complete blockage in shunt
- neurosurgery contacted and information all swapped back and forth.
- several other sans on order, an MRI and ophthalmology for optic nerve pressure…all to be issued soon.
saw a VERY nice doctor.
VERY offé with the chronic aspect of my disorder and the severe flare-ups which i have been balancing….
and i shared my “no i have no pain management clinic”, and my “no i have no neurology clinic”…i have landed quickly from diagnosis (albeit by the 10 year scenic route of invisible and abstract symptoms that many of us rare conditions follow before a DIAGNOSIS feels like a relief- a validation!)… but it means i landed running from surgery ward for 9 weeks to HOME.. end of information…no signposts.
So i FEEL that the last 3 days…have been so INVALUABLE…or perhaps the drugs are even better than i thought.
Will be taking it very very easy and have now been allowed to recover from this episode at home.
Still in pain but I will be …and i am 5 minutes away from back in if i am not succeeding!
But has been an opportunity which i think has been important, and more importantly i have GAINED from in many ways:
- Reinforces is a life long condition I suppose – so flare ups needing hospital will happen.
- Brain surgery was a pain relieving requirement but my condition is for life…am not getting better… today is my new best…
- But genuinely feel have GAINED in ways.
- the doctor i was under began to rejig and formulate a chronic pain regime…now with pain pharmacy involved and we have mapped out the new level where i am NOT safe to be exceeding at home.So a basic level care plan…for me and my OH -dealer 🙂 (in the prescribed sense- who not only gives drugs but records quantity and times…has done since i got out of hospital).
- my care has been linked – from hospital at home to hospital in my neuro-unit -been related throughout to royal so will trigger an informed follow up appointment in next weeks there.
- another ophthalmology scan and another Brain MRI requested. So follow ons will happen.
and met and like Mr NEW… my medical man here
allowed home as we “manage my condition sensibly”
called up this morning while i was asleep – and chose to call back today after he finished his clinic.
He will see me as a post inpatient referral and i would hope that he is as keen to remain in my umbrella care and join dots where the holes in the system for us RARE conditions exist.