one of the hardest things to adapt to with this disease has been the lack of mobility, that fatigue and cognitive dysfunction has taken away my independence and freedom by making it difficult to drive so that i no longer feel safe.
not only did it take my freedom by stopping me from driving but a lack of balance and the post exertional malaise and pain in my joints took away walking or using a bike.
so to enable me to have some of my life back i had to make a hard decision and realize that the crutches or walking stick were not enough, i thought about a wheel chair but realize that this would mean having to surrender what bit of independence i had left. a wheel chair would put me under the control of another person this was not an option i could deal with i still needed some control.
so i borrowed a mobility scooter from shop mobility and was amazed at the freedom, i was able to get around the whole shop on my own and not collapse into a heap after. using the scooter was like passing my driving test and going out on my own for the first time. it gave me part of my life back.
it helped me to make the decision that a mobility scooter was a way to move forward and it didnt take away from me but enabled me to get some of me back.
choosing a scooter though was complicated. i wanted one that could do it all but cost me nothing.
then we found the deal that gave me the best of both worlds a large class three scooter that would give me the ability to go from home to my parents or the next village, it would enable me to take my dog out for a walk and to go out with hubby on his bike. we also got a small shopper scooter
that goes in and out the car and lets me wizz around the supermarket and shops.
the only problem is they dont make any noise so im permanently on stealth mode which can be fun but also means that people dont hear or notice me.
at first i was very aware that i was only 40 and sat on a mobility scooter after all they were for old people. but soon i stopped thinking about that and started to enjoy my regained freedom. if only every thing could be as easy to overcome with this illness. it has not taken away the difficulty or lessened the mobility problems but far form disabling me having a mobility scooter has enabled me to still have some life.
once i had come to terms with the fact that mobility aids were a way of enabling me to carry on
i got in touch with adult social care and had an OT assessment i now have grab rails next to the loo allowing me to be more independent, i have raised poo seats unglamorous yes they are but then its not very glamorous having to ask for help to get off the loo! i have a bath board that allows me to sit in the bath and use a hand shower to clean myself rather than having to be hauled out of the bath and slipping and falling in the shower. these aids have given me my dignity back an have enabled my independence.
i also have now got a stair lift which has turned my house into a bungalow making it all accessible all day every day which may seem strange to you but for me to go up the stairs is a major event that consist of me hauling myself up each step one at a time halfway up the stairs the tears would be running down my face as my husband had to half pull half drag me to help me get to the top.
the only thing that i really hate about all of the things that i now have to enable me to live to the best of my ability is the appearance of the said aids. for some reason they are all ugly reminding me of hospital or old peoples homes. there must be a way of making some of this equipment attractive as well as practicle.
i dont want disability equipment i want enabling equipment