Sunday 18 February 2018

Sleepy Day and the Fight to Care

I had another seizure this morning. Just a short one and luckily Dad was there. He picked me up and carried me upstairs to my bed and we just about made it.

He sat with me through the seizure and got me some pain relief and got me comfy in bed and put on Chicago Fire as something to watch and to distract me. I've spent most of today sleeping and resting. Tired out from yesterday's and today's seizure. It had to describe the huge toll seizures put on the body; especially when you add hypermobile joints into the mix.

I just feel so lucky that Dad was with me otherwise I would have had to have had my seizure in the kitchen on the tiled floor - last time that happened I cracked my head open and that's not something I wish to repeat. I'm also grateful that I wasn't alone during my seizure. I really don't; like having seizures when I'm alone as I worry so much about complications like breathing difficulties (something that's happened a few times) and also having no one to time the seizure or having someone there to give me my medication or help me sit myself up and get me somewhere safe and comfortable as my muscles are either too weak or in too much spasm for me to be able to manoeuvre myself.

In an ideal world I would like to have something like a Care Link alarm which I can press when I'm alone and feel a seizure coming on so I can have someone on the end of the line to nothings like time the seizure, ask me if I'm in need of any assistance or arrange things like carers coming out to me or an ambulance if one is needed. Also in an ideal would I would like more carers being there to help me and make me feel safer as my seizures are so frequent. But sadly local adult social care aren't coming on board and don't see me as having a "real" illness*. I'm doing the best I can in what I can afford in terms of care but otherwise myself and my care agency agree that I need more. We're trying hard but my Gp is stating that social care matters are nothing to do with him. My care agency's nurse is looking into Continuing Health Assessments trying to care care through he NHS rather than social care but we're struggling to get clinicians to engage and I've started to lose my faith in the system that is meant to care. Also in an ideal world an Assistance Dog would be brilliant and would give me much more assurance and independence but current organisations that provide assistance dogs are closed to new applicants and we don't have a dog of our own to get help will official training so that door is closed too.   

It's not like I'm wanting carers to take me out every other day. I just want to feel safe, and have help with the things i struggle to do independently.

I'm speaking out as I want people to know how stuck people with disabilities can become in getting their basic needs met and how much we have to sometimes fight for this to happen, especially young disabled people and those with particular illnesses and the injustice in a system that is meant to care.

* see post about my appointment with my GP entitled 'A Frustrating Appointment' - click here to read it.