medical limbo


that’s where i pretty much feel I am.

in MEDICAL LIMBO.

Medical Limbo to me is an unknown place, a place where nobody really looks after you in a holistic way due to the fact that you have perhaps a rare condition, or a complex condition, which at times requires inpatient care as part of your life, but is also most associated by a “regionally” specialised hospital.

That’s me.

From the outset, can i specify that i am writing in an emotional state, but not in any way to specify any person is at fault, merely to highlight a difficulty in a flawed health system which am sure affects many more people and postcodes than me and mine. 

i HATE the word LIMBO – felt it was a cruel sentence imposed on grieving parents when what they needed was support and love…and as such it was a word i never felt was reflective of any God i would love…so i never embraced it or purgatory. And i feel that the church has considered the impact of the phrase in this context and i believe it is no longer part of it’s teaching – thank GOD!

so i feel that it very well applies to a vacuum…a sense of no direction…perhaps a sense that maybe directions were given out at some stage in my medical past but i definitely missed them…

limbo

 

When you suffer a RARE condition, or you BATTLE a rare condition or in fact you make the best you can out of living with a rare condition, you have very highly qualified specialists in your case. in my case Regionally.

my neurosurgeon: lovely man. no problems with him. He was in charge of me before, during and after my brain surgery. Which was the only type of surgery available for my condition (i think)…my chiari malformation.

i took a very scenic route to get to him.

10 years of scenery.

!0 years during which i (with the gift of hindsight) was becoming progressively more symptomatic with my chiari malformation.

Chiari classifies as a rare condition- and has many possible symptoms – i have them all!

symptoms

the earliest on my medical file would possibly be tinnitus – and to be honest THAT would be over 20 yeas ago!

the neck pains were next…neck and shoulder… CONSTANT.

i retired from work when the pain and to be honest the weight of depression that i felt as it was so limiting was a factor.

but LOOK at the list… they are ALL conditions that i can tell you about….but how can i show you them?

i CAN’T…pure and simple.

My GP: lovely lady. Kind and genuine. Always been supportive to me for all the years i am under her care. She has always had my emotional stability in her sight, and always takes time beyond the allocated slot to listen.

but ALL of my symptoms are vague…numb leg…”rubbery” feeling toes…eyes won’t cross… legs very tired…weak…fatigue…numbness… headaches of every shade and severity… eye motility trouble…chronic and severe pain…do they get me down? of course they bloody well do!

can you see where this is going?

my chronic condition varies on a daily basis…

  • the need for pain relief,
  • the amount of sleep i have to take – as in HAVE to
  • the extent of nausea
  • the amount of noise i can stand before it hurts my brain
  • the light sensitivity
  • the numbness levels in feet
  • cold extremities is at the minute a new add on…am now heading to bed wrapped up like an onion.

my OT: i love her. I found her by accident. I knew nothing of a regional brain injuries team – NOR that there was such a thing as an acquired brain injury – due to surgery, removal of tumour, meningitis, too much hydrocephalus…in other words DESIGNED for people like me. She probably knows me better than most on a “how i currently am” medical level. Sourced my wheelchair and other aids…and will update the apparatus as required.

my PHYSIO: great fella. has been stuck god love him at snail’s pace with me, as my vestibular/balance system is badly shook!.So he plods away with me – at my speed which is abysmally slow.

OPHTHALMOLOGY: fab lady. great outside the box thinker. She sees that my eye issues are neuro linked, and yet is willing to see me wit Optometry and eye Motility as a TEAM case.

neuro-psychology : nice man. interesting approach. discusses balance of “adjusting” to your condition and yet not resigning to “this is it!”… needed!

problem

WHAT is the problem?

The problem is NOBODY holds umbrella care.

I was hospitalised locally here about 6 weeks ago.

my physio didn’t know.

my OT didn’t know.

my GP did get sent a statement of reason for admission and a new list of drugs was written up as my repeat prescriptions – which i am much happier with than the old ones which had gradually been given for individual aspects of symptoms over the 10 years.

they local hospital did contact the regional while i was inpatient and did check and cross check scans with them…but as for the conversation i had in hospital where there was distinct mention of another MRI and another Ocular scan been requested…how would i know?

on the dismissal note this consultant referred to “this lady has a very complex neurosurgical history and a chronic neurological condition“… and went on the explain i had been admitted for a flare up of my chiari.

today i saw a form which my OT needed for my disabled access to the “gym”…and i use THAT term with a wry smile, as in my case, GYM is a misnomer… i will attempting to make my LEGS cooperate as a pair and to get the message to do so from my brain. for 2 minutes.  I failed today…and needed to press my legs down with my hands… i am also using an ARMS machine for 2 mins so that if legs don’t build up stamina, i suppose it could be called, then at least my ARMS will be better equipped to drive my wheelchair.

I happened to hav the form in my hand, when OT went up to the desk at one stage, and i glanced at it. My OT had had to get onto my GP to get form filled out. On the form was:

  1. this patient is a bad asthmatic
  2. has suffered from back pain in the past
  3. had brain surgery and is having vestibular problems.

NOWHERE was my chiairi mentioned.

in fact THIS version of ME, doesn’t even sound like the same PERSON who was released feom hospital on 23rd December the one noted as  “this lady has a very complex neurosurgical history and a chronic neurological condition“…. yet they were written within weeks of each other!

Who knows i need a wheelchair?

sooo WHO KNOWS WHAT?jointhedots

at the minute:

  • my right eye responds slower than my left
  • i have double vision at upper end of both eyes
  • the Babinski reflect doesn’t work anymore on my right foot
  • i have numbness in:
    • right leg,
    • both feet
    • both hands
    • my face
    • my scalp
    • mainly 3rd,4th and 5th fingers
    • numbness on right foot right hand sand affects me having to straighten my toes as i put on a boot/shoe.
  • i can not turn my right eye
  • my eyes do not track together
  • my left eye has now got nystagmus
  • so has my right eye.
  • noise levels superimposing cause PAIN
  • too much light causes PAIN
  • combing my hair is painful.
  • i have a hydraulic lift in bed to sit up.
  • i use my cane for balance but on anything more than a “dander” i do require a wheelchair.
  • i require at LEAST one sleep during every day.
  • i have NO IDEA what- if ANY- appointments are due.
  • oh and i have no pain manager.

i am FIT to WRITE THIS RANT and so feel COMPELLED TO…as many other people are with me in this state of MEDICAL LIMBO…and awaiting one of their many doctors or allied professionals to JOIN THE DOTS.

I AM A PERSON…not many independent departments…please SOMEONE take umbrella care? SOMEONE needs to collate information in us “rare” conditions… and LEAD the management between events. It is not like it’s brain surgery!! …..

model1

H

 

 

 

 

 

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2 comments

  1. What I admire about you Helen is that you won’t give in , you are a fighter! I wish I was as articulate as you are, keep blogging, people need to hear your story, sadly you are not alone xx

    • i know that Miriam.
      that’s why on days EVEN when i feel rubbish i have to put pen to paper (albeit virtual).
      MASSIVE gaps in realisation, and variance in INTEREST pf professionals, bewilders me…
      H

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