When I started this blog just over eight years ago I pledged to tread the fine line between honesty and self-pity. The post I’m about to write is going to be one that tests how well I can do this – if I fall off this tightrope, apologies in advance but I think it’s worth the risk.
Here’s what you need to know about my day:
1. I had the day off
2. I received a letter about a hospital appointment in a few week’s time that I’ve been both desperately waiting for and also dreading
3. I hung out with Fran
4. I got a phone call with some very good news
5. I had a long detailed assessment about my health needs to determine whether the NHS should contribute to the cost of my support
6. I hung out with a new friend and had an exciting, creative conversation
7. My brother-in-law, King Russell, is here because I wasn’t able to find someone to cover my overnight support
8. It’s 1.20am
9. My room smells of piss
10. Realising this made me think about the woman who abused me on the bus a year ago
Some of these points maybe need more explanation than others but I’ll tackle them in turn.
1. I’ve just finished a three week run of our latest stage show ‘Not I’ at Battersea Arts Centre. I enjoyed it a great deal – it was challenging but we had an amazing team and brilliant audiences, and I feel proud of what we achieved together. I also feel tired, but I had today off to recover.
2. The letter I received was a follow up from the appointment I had last week with the Uro Neuro (A neurologist who specialises in urology – or the other way round). Last week I alluded to a plan to help tackle some of the issues I’ve been having with my bladder. What I didn’t say at the time is that ‘the plan’ involves seeing if I can self-catheterise so my bladder can empty completely. Among other things this would mean that in the night I’d need to get up and use my treasured commode chair less often.
3. Fran is an incredible human. As well as being a good friend she’s supported me on and off for almost seven years. Her sensitive, skilled support and friendship have made many tough moments much easier.
4. I received a phone call with some brilliant news. I’ll be able to share more about this soon, but for now I need to keep it under wraps. (It’s a good job you can’t hear my tics right now – they would’ve shattered any illusion of secrecy!)
5. For the last seven years I’ve had a personal budget provided by my local authority’s social care team. I use this to pay for and manage the support I need at home. My current support plan meets my needs and I feel very lucky to be in this position because I know many people aren’t.
My support plan’s recently been reviewed by a social worker – I wrote about how positive this re-assessment had felt, especially compared with previous occasions. Over the last year or so some of my health needs have changed and my social worker wanted me to be assessed by my local NHS Continuing Care team to see if I meet the criteria for the NHS to contribute to my support.
The second part of this assessment was today. The assessor was kind, knowledgeable, and professional but the assessment was long and detailed and I got very tired. The outcome was borderline which I suspect means that there will need to be yet more discussion and assessments. However skilful the professionals are, focussing on the challenges of my impairments and going into personal detail about them is draining – both physically and emotionally.
6. I had an unexpected and brilliant meet-up with a new friend – we talked about creative projects and this felt exciting and left me hopeful.
7. It’s unusual for me not to find someone to do my overnight support, particularly in the middle of the week, but my regular Tuesday night worker is off, and I haven’t been able to find anyone else. This is always stressful, but Fat Sister, King Russell and Leftwing Idiot always have my back and make sure I don’t go unsupported. Tonight King Russell’s kindly stepped in.
8. It’s now 2:04am but I’m gambling that writing this will make me feel more settled than I did when I started. I’m hoping that despite the pain I’m in and the need to wee all the time, I’ll be able to sleep better when I’ve got some of these things off my chest and onto the laptop.
9. Here’s what triggered this post. My main concern is that ultimately I’m lying in a room where the smell of urine is very strong. My new commode chair is by my bed. I love it and it’s making going to the loo in the night a lot less disruptive. Often my support workers empty it during the night so it’s less smelly. King Russell’ll be annoyed at me when he reads this but I don’t want to wake him to empty it. It’s not because he’s too regal for wee duty but because he’s doing me a favour, because he’s got work tomorrow, and because he’s my brother-in-law and I’ve never asked him to do anything this personal before.
10. Just over a year ago a stranger on the bus subjected me to ten minutes of intense verbal abuse. One of the recurrent insults was that I smelt because I was a disabled person. The woman’s abuse was a lot more personal and graphic than simply saying ‘you smell of piss’, and her horrible words and actions resurfaced in my mind as I lay trying to sleep with that familiar smell hanging in the air.
I haven’t been able to write blog posts as regularly as I’d like recently. For the first five years I wrote every day and writing’s become a key part of how I celebrate the good, process the bad and share the funny.
But it’s been hard to write regularly as we’ve got busier and as I’ve needed more rest. Tonight, though, writing felt essential. Today’s been a mixed bag with many moments of joy and also lots of tough complexities, and I’m not sure that anything other than writing would’ve helped me unravel the layers of conflicting emotion I’ve been grappling with.
Laying out point-by-point everything my mind’s processing has helped me feel more in control, so I’ve just been back to my original list and colour-coded it:
Green for things that are no-strings-attached good
Blue for things that are strings-attached good
Purple for things that aren’t good at all
It was reassuring to see that today’s been mainly no-strings-attached good. Inevitably some things aren’t ideal but writing about them has once again made me feel confident that I’m well placed to find a way through.
It’s also helped me realise that I can tackle the purple problems with one suitably purple solution – the lavender sleep spray Leftwing Idiot bought me last year. Now I can get to sleep, smelling only lavender and letting my brain drift into dreams, rather than dwell on unpleasant memories.