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:
- 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”
HOW can i do less than NOTHING.