Tuesday, January 10, 2017

Miracle, miracle, she can get out of her wheelchair

Yesterday I wrote about the wheelchair in my life. This sparked some interesting conversations, and thoughts on furthering our independence by using a mobility scooter. 

"In a wheelchair or On a scooter..."

The wheelchair:

wheelchair facing a tree
'stuck' against a tree in Brugge- Belgium'

Acceptance from others living with ME/CFS:
"It was so challenging because I thought I was "giving in" to this disease."

I can fully appreciate this as it is a huge step to accept the need for mobility aids. It can be seen as giving in, but in truth it is a way to maximize our ability, not disability...

Acceptance from a mother's perspective:
"There were so many lows when Anna was ill [with ME] but for me One of the most heartbreaking was the day she asked me if she could get a wheelchair. I remember going into my bedroom and crying my heart out. It felt like the end, it felt like she was telling me that she was never going to get well. I just could not accept it, and I'm the end she did not get one. I still sometimes think of that day and wonder if it would have given her more freedom and whether it would have been the right thing to do..."

Anna turned her life around in the most remarkable way. I will write about her soon. 

The feeling of 'guilt:
"When I have been out and about I feel a mixture of guilt and fear ( If we get stuck on a step I get out of the wheelchair and walk over it - will people think I am a fake or like this character in "Little Britain" !?) 

This brought back a memory of one of my early trips around town in my wheelchair.
Heike, the friend who brought me on that very first trip outside my house, brought me for a walk towards Lismore Cathedral. The path is very rocky. The step up into the graveyard (well worth a visit) was just that little bit too high to mount. I stepped out of my chair and Heike roared:

This memory still makes me chuckle! 

Feelings of relief:
"... relief that people finally understand that I am physically ill even if nobody can see this otherwise." 

Yes, indeed. Living with this at times 'invisibile illness' is hard. People judge us by what they see, not by what they know or by what we tell them. 
Using a mobility aid can break that barrier. Walking out of a public house, I can be seen for a drunk (drunk on chamomile tea or orange juice...). Using my walking sticks, my unsteady gait is seen as a result of illness.

Positive responses from other:
"...Great that you've come to flip viewing the chair as a symbol of what you don't have to being your means of getting about and communicating with the world."

The mobility scooter 
sitting on my mobility scooter on the beach. Happy
On Youghal beach with my scooter. Happy!

To really is that many of us who live with ME/CFS do not have the strength to push our manual wheelchairs, so this still means a level of dependency on others to leave our homes.
A mobility scooter is the way to combat this.

My scooter enables me to go into town on my own, do my shopping. Further afield I do need someone to put it, and me in their car, but as this (Rio 3 lite) portable scooter can be totally dismantled it fits into the back of even the smallest car. The battery lifts out, the seat comes off, the handle folds down. 

I have brought my scooter on trips to Holland, and on holidays in Ireland. It is not suppose to be used on rocky, sandy paths, but it is always worth a try! I have trailed the paths around Dzogchen Beara and the beach in Youghal.
Just be sure to bring your mobile phone in case you get stuck!!

Links, and further reading:

  • Although the battery of this small scooter is airline friendly, I was refused to board on Aer Areann flight in 2009. I fought this case in an equality tribunal. If you like to read about this, here is the story 
  • more scooter and wheelchair stories and reflections in my books 
  • Small Scooter:As for some reason the scooter is much more expensive in Ireland than in the UK I aksed this company to price match in Euro, which they did! They are also available second hand on various sites.

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