I’ve always been the sort of person who can happily get on with things on my own. For example, get myself to a gig in London or meet up with a friend in another country or just make my way to nearby Oxford.
Even with relapsing remitting MS things weren’t too difficult.
However, when my condition changed to secondary progressive MS everything got a lot trickier.
Spasticity and drop foot meant my walking became more difficult. Not being able to bend my legs as easily, scuffing my feet and not having the energy to walk very far have meant that I am reluctantly needing to use my mobility scooter and wheel chair.
I have become more used to using these and appreciate how they help me but I’m still uneasy with how I often need someone to help me with these. For example, pushing my wheelchair.
Don’t get me wrong I’m hugely grateful for any help I get but it’s been a big change getting used to needing a carer.
For me these carers are friends or family but this leads me onto the next issue: I’m not exactly extrovert so am used to activities alone or just with my children. Plus, I don’t have a long list of friends who are able to be a carer. They are either working long hours, have young children of their own or, in the case of my children, are simply not strong enough to push my wheel chair!
I haven’t found much research about feeling uneasy about needing the help of carers when it comes to progressive illnesses but I can’t imagine that I’m the only person who feels this way.
This change to Secondary Progressive MS has very much affected my mental state.
One of my counsellors (and I have had a few!) talked to me about how I have experienced trauma with my multiple sclerosis.
The more I have thought about it the more I would agree that this illness progression has led to a traumatic feeling. Over just a few years I have seen my body turn into that of an older person.
Along with this change has come mobility aids and carers.
I’m not sure what the answer is, other than buy an electric wheelchair to go along with my rollator, manual wheelchair, stair lift and mobility scooter but my house looks like a retirement home now as it is!
Mobility aids are important to gaining independence but so is accepting help from others when it comes to mobility problems.
It’s healthy to greive for the pre disability life you have lost but so is accepting the help of others in order to continue the activities you love.
The Kids, Me and MS 