Julie Helen: Prioritising looking after my disability takes time and energy

I was sitting in my wheelchair a few days ago trying to decide where I was going and how I would manage the logistics of it all.

Since my car died in a flood in November, I have had a different model that is higher than before. It makes getting out of the vehicle easier, but it makes getting the wheelchair into the car harder.

If Ricky is with me, we can manage well together because he can help, but if I am by myself, I am a bit snookered.

It is something I can learn, but it takes time and a commitment to building up my strength, and it’s taking me longer than I would like. When I have to go somewhere, I am left with a sinking feeling. I don’t feel able, I don’t feel capable, and I hate that cloud.

The next thing that happens is that I start to run the list in my head of all the things I need to sort out to make my life easier, my ‘disability admin’ if you will, and right now the list is long and sometimes feels insurmountable.

I need my blue badge for parking to be renewed, I need the GP to write a letter for that. I need a new wheelchair for which I am on waiting lists, but I need to follow up and chase it and I need the GP to write a letter for that.

I need a solution for getting my wheelchair in and out of the car. A few years back, David bought a hoist that should work but I need to take it to the man that does the adaptations on our cars and get him to do something that will work. He will, I am sure, he’s superb, and once it’s done I will be delighted.

I need to get new ends for both my walking sticks, where the grips should be they are practically smooth from wear so I need new ones - well, really I probably need new sticks altogether, maybe I should just get them, in reality I need both.

When it comes to my wheelchair, I need to tighten the brakes and I need a new cushion underneath me, I can get a service of the chair I have but that requires calling the HSE and begging for a spot of a Thursday. Then I’ll go there to be told I should be getting a service far more often and it will feel awkward and unpleasant and they’ll remind me how long the waiting list is for a new wheelchair.

This is all the minimum I need to keep functioning, and nowhere near a comfortable level of support.

The biggest barrier that is in my way is myself.

I resent that I am made to feel bad when I engage with public services around my disability. Private ones are fine but that lays all the burden and cost on me.

I wish service providers could understand that I am doing my best because, along with this list, I have the same lists everyone else has as a wife and a mother and the juggle sometimes feels intense. Instead of feeling understood, I generally end up feeling like I should be doing better.

Prioritising looking after my disability takes time, energy, and money that I would much rather spend doing other things.

Sometimes, I wish a fairy godmother would appear and sort it all with a few shakes of a wand. I know I can be my own fairy and just bite the bullet and get it done, and it will be worth it when I do.