rare condition…an admission for flare up

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.

fatigue questions

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.fatigue 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?

JESUS this is my life?choice

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.

Drip attached.

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 😦

way off

  • 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.

ok…a new doctor for me to love.!pain1



    • Fay,
      pre decompression i would have HATED a shunt…as the stats on problems were awful…
      AFTER my decompression i had been fitted with a Lumbar Drain as apparently i had a “tatty dura” – and was a tad offended at the very thought… BUT in real life that meant i had been FLOODED in brain fluid excess for …ever?
      I was given 10 days with the drain in to allow the dura dry and patch to take…
      i got home and had a CSF leak..
      ambulanced back in and had weeks of meningitis accompanied still with lumbar drain – as i was obviously in NEED of draining on an ongoing basis…
      so that was back in Jan/Feb of this year and all blogged as we went…and by thn i had begun to look at the NEED for a shunt, as an extension of my condition…
      so i stopped the big issue it was for me, and began to see was a necessary part…and if it meant MOTs and services to plumbing now and again so be it.

      i DID have my shut in the early days move..out of my tummy…so am counting THAT as my defect – otherwise…i get weird pains in nerves where the shunt randomly roams… but honestly? other than to freak out my children with a look at it…i almost forget i have it…
      but go back and read the reality blogs at the time…

      • I see, interesting, thanks! I’m at a point where surgeons are very reluctant to do anything because last time it took nearly 5 weeks for the wound to heal and stop leaking csf everywhere – not just my head but even where the lumbar drain had been in my back it just kept springing open again! however the pressure headaches are still really bad, so bad I have given up my flat and moved back home and can only work part time (and only because I get driven to and from and do literally nothing at home) and only if I can sit all day and I don’t know how long i can sustain even that. I’m already on daily morphine.

      • oh and my decompression was done with glue… NOT asked for…or consulted… but is a very neat scar.
        another girl…different specialist ugly scar…staples… and she also leaked…so i think its unclear if methods even make a difference in outcome at the time…i think in fairness i would HATE to be a neurosurgeon…as so many of the jobs they do seem to leak…. BUT that in a twisted way makes me realise how incredibly genius our faulty brains are 🙂

      • Oh ok – well I’m still youngish, only 25. I had a similar experience, I had symptoms at fourteen but everybody assumed it was my depression – I knew it wasnt though.

      • i know its funny… a tatty dura…! we laugh at it now…
        but read through the surgery was Dec27th and OH was instructed to blog until i could…but it became a necessary…
        this was the first time since decomprssion i had a HOSPITALISABLE headache… that is worth trying…!

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