Ordinary Hopes

The last few weeks/months have been painful.

I have struggled to move. Sitting has been hard, standing even worse, and I have been walking like I just pooped my pants. (LIKE!!! – I haven’t really!)

This is the reality for a full time carer to a disabled person. I don’t work office hours, heck, there are no fixed hours – just waking hours! And those hours come with serious flexibility and no allowance for how I feel or how broken I am.

I was really struck by the words of a person who shared one of my Twitter posts recently. I had mentioned my back problems and shared an old blog called ‘What cost to carers?’.

She said “parents of disabled children should not end up acquiring disabilities themselves due to their caring roles.” 

It came just days after my mother suggested I should get a walking stick!

And I realised something.

This “back problem” isn’t really new. It isn’t just something from the last few weeks, and it never completely goes away. It isn’t just weeks or months that I have struggled, it is years! And it isn’t going away.

It takes me ages to get up and get dressed.

Getting up from the toilet can take a lot longer than it should.

I have days, sometimes weeks, of not being able to drive and where walking is seriously painful with every step.

Most days it is hard to bend down. I wear shoes which slip on for a reason – because I couldn’t bend to tie them!

Most evenings I am in too much pain to use the vacuum cleaner.

I struggle to lift pans to drain them when cooking. I haven’t been able to dig the weeds in my garden for ages and I only trim the plants which are at a height where I don’t have to bend.

I no longer plan entire weeks of activity with my son because I know I need to rest after a busy day and that I will probably be in a lot of pain. Thankfully, my son is not missing out due to this as he also needs to rest -he tires easily due to his own difficulties. I don’t take part in some things that I used to love, like Laser Tag or simply baking with my niece. Something as simple as standing up and baking cakes is really hard and I cannot plan a week in advance that I will be up to doing it.

My photos show my son doing things with his PA, not with me. And it isn’t because I don’t want to go canoeing or climbing with him, but because I can’t. 

My efforts to campaign for Changing Places toilets have reduced, because I just don’t have the energy to go to places.

I struggled to get to, and sit down through, a comedy show recently, when Jason Manford was performing in my small town. Laughing, when you have a bad back, is hellish!

Days without pain are rare. It is just that I only tell people when it is so severe that I can’t fake a semi-believable smile.

Have I acquired a disability?

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You are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

‘Substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed.
‘Long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection.

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It is getting harder to pretend that all is well.
It is getting harder to hide the pain.

My health problems do affect me every day.
I often cannot manage everyday activities.

But, despite this being something which has affected me for many years, I am not prepared to accept that it is “long term”.

But I am thinking about getting a walking stick.

Just in case.