the disabled family.


As a disabled person it isn’t adequate to adjust to your own limitations, because deny it you may but you are in effect a disability for the family to live with.

GUILT and should have, could have and if only are words i battled not to use so frequently but that was when life was “normal” – whatever that is.

  • mam’s asleep
  • dad does all the school runs
  • an away day needs the planning of having a new baby in house
  • which wheelchair
  • which blanket?
  • is the journey an option?
  • could you sit there?
  • what outerwear? – sleeves and wheels?
  • where will mum sit?
  • could you manage the time?
  • is there a disabled parking where she can see the pitch?
  • maybe mam would be better not going to today’s match as tomorrow we have a county match.
  • check does that hotel have doors that will fit my scooter.
  • where could mam sleep that day?
  • would you rather do the table quiz or the barbecue? cos both would be difficult.
  • who would be able to build mam’s power wheels?
  • would you not be better conserving your energy til…
  • would it be manageable?
  • there’s a walk to that, dad….mam mightn’t be able
  • the wheelchair wouldn’t work on that surface.
  • would a holiday be an option?
  • dad, what tablets does mum need now?
  • get your mam her pillow and blanket.

 

WHO would THAT be relaxing for….NOBODY . NOBODY any more. Because mam has to be considered at EVERY level….24/7 …..

physically to have my little children make allowance for me at EVERY event:

  • sleep,
  • helped to move,
  • understood emotionally and
  • tolerated in your new quick changing mood-wise
  • inwardly weeping as i watch them build -up my wheelchair for me
  • paranoia of ALL you could be and SHOULD be doing as ANY sort of a mother…
  • … H O L I D A Y in what way??
  • on my PENSION??
  • WHY can everyone else holiday? –

and do i EXPLAIN the added expense of disability on top of all the other additions my DISABILITY brings to THEM!the cost of equipment, clothes that fit, hotels that have big DOORS, insurance….need i go on???

and in my head the mantras  of my brain team run constantly, and at time mix and conflict their messages:

“conserve your energy for what you WANT to do”

“prepare…DO…and allow recovery time”

“prioritise”

HOW can i do less than NOTHING.

Advertisements

One comment

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