Sitting, waiting, wondering

Every evening one of my PA’s phones me to check that I’ve taken my medication. It’s important that I take my medication because obviously it helps to control my seizures. Tonight, and I have no idea why, they have not phoned. And I’m really quite frustrated because it might only be a brief “hey how are you, have you taken your meds? What have you been up to today?” Chat But sometimes there is the only times I speak to people with my voice in a day so they mean a lot to me.

Today, I have spoken to people over zoom as I had my last Makaton Tutor assessments but I really wanted to try saying to someone “I did it” and try and be / feel proud. I’d practiced saying it, without stuttering and feeling awkward. But I didn’t get my chance.

I did worry they were not ok to begin with but then I saw them laughing and joking on Facebook so I know they are!

It also angers me as H does nearly all of them and a couple of others do a few. And H made me promise if someone can’t do one of them or doesn’t do it, I have to tell her because she doesn’t want me going without speaking to someone or missing my meds. I never break a promise so I tell her and she ends up checking on me even when I tell her I’m fine!

I’ve just realised... I’m calling one of my PA’s H and it’s making me think of line of duty!! That’s made me chuckle.

I won’t let it get me down that my PA didn’t call but believing in myself, feeling proud or confident are things I really struggle with. Being praised, being told I’ve done well. It doesn’t feel natural to be told those things, I don’t know how to react. I don’t know how to express those feelings or sometimes even allow myself to feel them. And it might sound little or silly but I worked so hard to say I’d done well, to be confident and now it’s wasted. I have waited up till 11:30pm for my 9pm call. But I’ll still try and feel proud. It’s just hard when you’re also feeling forgotten.

So, my point to this post is to remind people sometimes it is hard to feel good about yourself. And sometimes you want to but don’t know how to say or express it.

It sucks to be forgotten especially when those people know they are the only people you may speak to that day. Sometimes having a disability can be quite isolating.

And today has been good. I’ve spoken to my awesome Makaton tutor / mentor and done my assessment. I’ve not had any seizures and I feel ok. But, it could have been a very different day where I needed that call.

This is most definitely not what I wanted my first post to be about but, as things happen in life it’s useful to write them down in the moment when the feelings are there.

Off to bed now, hopefully nearly a Makaton tutor! A dream, an ambition and a massive achievement. And yes I am smiling :)