Chiari – the condition that gives and gives and gives


my medical looks like THIS in one hospital…but  even better in the regional hospital…it has almost earned a shelf of it’s own.

 

IMG-20130221-00077

the ever-growing list of appointments are in effect a LARGE part of your social life, as your energy reserves and recovery times  mean that you have to pace what you can do in ANY day.

  • physiotherapy
  • occupational therapy
  • neuro psychology
  • my new rehabilitation specialist
  • pain management clinic
  • ophthalmology will now be replaced by neuro-ophthalmology
  • neurosurgeon
  • neurologist- yet to happen – for symptom management
  • GP – who i have tried NOT to go to as all seems so regionalised.

Even the disabled part of the condition.

  • i used to have pain clinic procedures but they were not working any longer
  • i have adopted HAZEL my trusted stick as a LIMB…and realise for balance and for strength. she is needed!gymbunny
  • my inability to walk any distance has meant initially i had to hire a wheelchair but now i OWN my own wheelchair. Have even personalised my cushions in my chair. I recently have HAD to admit that part of the reason  for me NOT going anywhere, was possibly due to having to acknowledge in PUBLIC that i need the chair for any substantial time. I brought it out recently to a fairly PUBLIC venue…and not without advance planning. I got all the looks. the
    • “what wheel?” – the one who never noticed them – look
    • the GAWK – the one who doesn’t know you as closely and feels like they have every entitlement almost to CLIMB into the chair to check all details-look.
    • the “novena” – the look which implies..”dear God love you…you are in my prayers!” look
      photo 1 (15)
  • but the CHAIR is now DONE. i did that. It has been SEEN here….twice.
  • my CHAIR is a self propel chair. but THAT depends on the ability to PUSH myself. That mattered to me – the ability to look “independent”. That ability to drive myself. it HELPS up to a point, that knowledge…wheelythere
  • behind me ABOVE are my 2 drivers. my sons. it is NOT fair that the children push a middle aged, overweight mam on the longer parts of a day out. I can manage perfectly in TKmaxx, but put me out on the street and tell me to go to a different area, and i need HELP!.
  • the LOGICAL me saw the next step… the scooter.photo 1 (15) 

    i had NO choice.

  • we were doing an away weekend in Dublin. I simply brought a scooter or i couldn’t go. SIMPLES. But the reason it was simple is that i was anonymous there. In my head the wheelchair is enough for me still, yet this is NOT the reality- i have only a CHILD as OH unable to push. In Dublin we had a ball. It was referred to not as a scooter,, but a SEGWAY!  and i had as much attitude in it as was possible. i even “PIMPED” the hi visibility bag from YELLOW to LEOPARD PRINT.pimpedbag20150331_0219_Dublin_Aviva
  • AGAIN a gut-punch from reality. our hometown is built on a series of HILLS. Sharp enough increases. you see in my HEAD, the wheelchair, once pimped and brought out in public at home, is accepted and I can be blissfully ignored and invisible. it is the one that stays in the boot of the car, th everyday fit.
  • AND my Segway (scooter) is for  “away days” planned trips. where i can fly around making life easier for the family.
  • NOPE  my town design means i could never manage to self propel up town in my wheelchair. NOT in a million years. I mentioned that to the rehab specialist. He said, then you need “assisted wheels”…where you do a little, and it does a lot. So i spend a weekend looking at more gadgets –  levers, gears, powerpacks, smartdrive, Wijit, firefox, intelliwheels … costing about a SMALL CAR each!. gut punched again!
  • Meanwhile you sit indoors…growing…bigger…fatter…out of AL my clothes…out of my comfort zone…out of my own personality…out of feeling i have ANY control of my life

This is really the GIFT that keeps going.

and some days chiari…i wish to hell you would STOP!

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s