October 2022

Hello All! A lot has happened since March. At the end of April, I started having horrific migraines which meant that until recently I haven’t been able to do anything but curl up and pray for the pain to stop. Very dramatic, but unfortunately true as many of the disability community will agree. This post is basically one long moan, a title attributed to Sarah DP at Ability Today and one of the people supporting me on my journalism journey with the ADJ. It may also become a podcast soon if everything goes to plan but more on that later.

Medication moan

The medical profession’s attitude towards medication, in general, has shocked me! I don’t like taking more medication than I need but I couldn’t stand the agony of my migraines! I take some tablets regularly, Baclofen being the main one since I hurt my back. Ringing my GP as I couldn’t cope with the pain. I was told I could take Naproxen, Codine, Paracetamol, Baclofen and Diazepam together if need be! This was a big difference from the cautionary tale I usually got. They only seemed bothered about the Diazepam long-term and are happy for me to take the others. Thankfully I have now come off all non-daily tablets but am still waiting for the pain clinic, physio and orthotics referrals to be written. I find it crazy that society would rather I pill pop rather than get the treatment I need.

Substandard Care

My posts have complained about the care system since I started this blog. People who actually care and who want to do the job are few and far between. I had four PAs in March, now I’m down to one. Why do people apply for jobs and then just disappear without saying anything? I’ve had it with interviews too, people say they’ll turn up and then don’t. I don’t understand why people don’t do what they say they will. This is an almost daily moan for me. I’m starting to wonder if I will find a team of people that I’m comfortable with but am trying to stay positive and not take it personally. I’d be interested to hear from anyone who has to rely on care and how you organise it.

Agency Moan

After two years my care agency are concerned about my shower chair and saying I may need two people as the chair moves. My solution is to get someone in to fix the brakes! My needs have not changed. I never want to put anyone at risk. Their solution involves two people seeing me in a vulnerable position and more money to pay for the second person.

They suggested that my father transfer me into the shower seat! Where is my choice, privacy and dignity in that? Not to mention my father may want to do something other than hang around to transfer me. The idea that it’s ok for my father to struggle upset me massively and inspired this moan. Informal carers are expected to just do everything regardless of their own health!

Updates moan

If I didn’t have to chase people for updates I don’t know what my life would look like! At the moment I’m chasing referrals, Wheelchair Services, Social Services and a private wheelchair company about fixing a second-hand wheelchair I’ve just acquired. I’m writing this paragraph two weeks after the first one as I’ve been struggling with tiredness but I still haven’t heard anything about any of my referrals. Receiving a wheelchair from wheelchair services, which, to date, is sitting unused inside my parents’ porch as it is unusable. I cannot transfer into it. Covid is being blamed for the delay and while that may be true I still wouldn’t have a chair if I hadn’t brought one myself. This is pretty ridiculous considering my chair is my legs and I cannot move around without one!

Waste of resources and money

The amount of items I’ve had delivered to me over the last three years is ridiculous. I’d never look a gift horse in the mouth and I’m very grateful for the help I receive however I hate waste.

I have had eight wheelchair cushions delivered to me since the first lockdown in 2020 and non of them are suitable! The care sector and the wheelchair service keep mentioning budget cuts, yet they have the money to waste ordering cushions for me to try. I appreciate the thought but half of them were unsuitable just looking at them because they were too high. Having specified to anyone at Wheelchair Services who would listen that I need a two-inch cushion it seems daft that I would receive a three-inch, sometimes four inches through the post. Returning the cushions is not an option. Instead of being repurposed for someone else, they would be destroyed. I donated six of them to a local day centre near my house.

I’ve not even mentioned the ‘OT cupboard’ that my Mom happily got rid of some years ago. You know the one, that space in your house where all the equipment goes that a helpful OT or physio has given you that you never use. It’s all meant to help but is such a waste and takes up a lot of room. Allocating resources sensibly reduces costs. I now use the top of my chest of drawers as my ‘OT cupboard.’

One long moan podcast

This post has been very cathartic for me but have you enjoyed it? As part of my journalism course, I have to create a podcast. It’s been suggested to me that my moans are well thought out and amusing, thanks, Sarah. Obviously, most of you haven’t had the pleasure of hearing my voice but I’m considering doing as suggested and turning mine and other people’s moans into a podcast. My hope is that others in the community will suggest solutions and people will feel connected and not that they are the only ones experiencing a particular issue. What do you think?