I forget that whilst the NHS hasn’t shown any real care or concern for my wellbeing over the last 4 years, i’m still ‘severely disabled’.


Ellie’s #MadCovidDiaries #Midnight Waffles 8.3.2020

My moods picked up a bit over the last couple of days, thank fuck my period’s over, although i’m reaching peak boredom. I’m missing other people. I want to give Dad a hug, or sit in the sun with a friend and waffle about something joyfully irrelevant. Spending weeks on end with only a cat for company is definitely making me more eccentric. I’m so relieved she’s here, except for all the ‘presents’ she’s bringing home.

I’ve felt really busy (somehow?) over the last couple of days. I’m juggling a long list of remote social commitments and personal self-care plans. I’ve got a constant gnawing anxiety that I’ve forgotten something- which I probably have, I keep forgetting things. I forgot to attend an online support group yesterday which my friend had organised, I feel awful about it, which is definitely not the intended outcome of a support group. 

In the back of my mind I’m also aware of the work I put down when this all kicked off. (I’ve been too mentally unwell to work a job anyone would pay money for for a few years. Anything around trying to access healthcare or mental health campaigning I call ‘work’.) I was in the process of making a complaint to the Ombudsman, but even before everything pandemic-y happened (and mental health services were still operating) it was causing me a lot of distress to meticulously explain everything i’d gone through and how i’d been treated. So when my advocate took a holiday and a few days later the country when into lockdown, I just stopped working on it. But the advocate emailed a couple of days ago saying she’s back again, working remotely. I’m still in the same position I was in a month ago, only now there’s nowhere to go if delving into it all overwhelms me again.

I don’t need to talk with a friend to know that combing through my trauma right now is definitely a bad idea, I shouldn’t even look at those documents. So why do I feel this responsibility to do ‘sort it out’? I guess a therapist would say it comes from the same part of me which is desperate to feel in control. (Hello, that little insight came out of nowhere? But as soon as it did it felt pokey and uncomfortable so it’s almost certainly true. I hate it when my brain does that.) I always start pushing myself to the limit and expecting the universe the moment I feel okayish. Not great, not even steady, just okayish. I forget so quickly that just because the NHS hasn’t shown any real care or concern for my wellbeing over the last 4 years, i’m still ‘severely disabled’.

Then again, is it a huge surprise I expect a lot of myself when I’ve experienced so much disappointment and disregard from people who should have looked after me? Not to mention the years of being to ‘hold on’ on a waiting list for an untold amount of time without any support, or being passed around different clinicians and services like an STD in student halls. An empathetic person might say it’s completely natural to have developed a strong instinct to protect myself, maybe that instinct even saved my life during times of crisis. Or maybe I need to do what I’m told and “be patient”, I guess we’ll never know. 

On balance, I think I’m going to give ‘work’ a miss for the moment. I’d be happier using this time to try look outwardly, rather than inwardly. I’ve been really slack with campaigning, or ‘sharing where I’m at’ up to now. I didn’t see the point in telling social media about the importance of ‘spending time with myself’, I needed to put that into action, not words. But, like I said at the start, I’ve had enough ‘me time’, now. I’m bored, and lonely, and I’ve watched tv till my eyeballs dried up. I guess it’s time to start putting into action some of the excellent practical advice I dish out to other people… It makes me tired just thinking about it. 

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