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My Diary of Insufficient Support – Day 0

Hello Internet!

I am being sent home from hospital tomorrow without any extra PA home support hours. So I’m going to document daily life recovering from surgery without sufficient support at home.

The video is over 6 minutes long, and I will return someday to type up what I said. In the meantime, if anyone feels inclined to do that for me, then please message me, you beautiful human!

Until tomorrow…

Click here to view video on YouTube

*** UPDATE ***

The stupendous Kelly managed a transcription which is the pinned comment on YouTube. I think it was automated, so here’s a slightly tidied (and punctuated!) version:

hello Internet! A

pologies for the weird

lighting but I’m in a hospital ward in Sligo University Hospital. It’s my last night here; I’m being sent home tomorrow, after having some pretty straightforward back surgery nearly two weeks ago. I could have gone home a week ago, but we were waiting to hear from the manager of Physical and Sensory Disability Services for the Northwest, to see about an application for extra Personal Assistance home support hours for the recovery period when I got back from this surgery. The surgery was originally scheduled for the beginning of February, and prior to that, with my local service provider, LAPWD, we let the manager, Joanna McMorrow, know that this surgery was going to happen; that I would need extra PA support once I came out of the hospital. Apparently, at one of the monthly planning meetings, she said, “Yes, we’ll arrange that for you”.

So, over the course of this last week, nurses here at the orthopedic unit have been trying to contact joanna McMorrow; sometimes they were ringing several times a day, they were sending emails, they were sending in paperwork – because they didn’t want to send me home without having sufficient support, so that I could survive.

Now, I’ve just had the back surgery, but that is in the context of having a long-term chronic pain condition, since 2007, that has significantly worsened over the intervening 12 years. It’s related to soft tissue problems, unstable joints and hypermobility, which hasn’t yet properly been diagnosed. and other Zebras out there will know which diagnosis I’m talking about not having. I use a wheelchair for getting out of my own house. Although with the drop of mobility that I’ve had over the last couple of years, I will be getting a lightweight manual wheelchair to use within my own house. But even that’s going to be restricted because it’s a small house. That’s arriving on may the 14th.

I’m also pretty much blind, which a lot of people don’t necessarily take into account, especially not when they see the wheelchair. I use a guide dog, who has also been trained as a mobility assistance dog by IGDB, the Irish Guide Dogs for the Blind. I can’t read any print. Basically, in order to leave my own front door, I need to have the power chair and the guide dog. In order to function at home, I need to have Personal Assistance support for meals, cleaning, including washing my own hair, laundry, paperwork, filing… most things on most days I could use PA support.

I’ve had 15 hours of PA support for the last ten years, or maybe even more. Prior to that, I had 10 hours per week of support, and that was when I was, if you like, only visually impaired, not mobility impaired. With that 10 hours, and ambulatory mobility, I was able to be self-employed, running drama-based workshops, educational and arts-based workshops, as well as doing my own research into early Irish literature – which I still do some work on. (On Story Archaeology, which you can look up and subscribe to.)

I’m telling you all this because I haven’t been given any extra hours. I’ve been told to rearrange my existing hours, yet again. This is about the third time that I’ve applied for extra hours, and been told to rearrange my existing hours.

So the way it’s going to work is that I’ll be getting one hour of support each morning, and then one further hour each afternoon, and then I’ll have a spare hour somewhere in the week. I don’t know how I’m going to manage on that, but what I’m going to do is try and furnish you with daily reports, so that you can see how insufficient that is; and also maybe get a bit of insight into daily life with multiple disabilities; and how available support systems for somebody in my position are really falling so far short of the mark.

So I will leave it there for this evening, this being Sunday

the 5th of May. So tomorrow I will be going home. I’ve already ordered my shopping online, and my local supermarket has very kindly said that they can do the picking and delivery on a bank holiday Monday – because it’s me, because I’m a long-term customer of theirs. So big shout out to Glancy’s Supervalu of Carrick on Shannon! This is not a sponsored message.

I will check in with you tomorrow after I’ve had chats with at least one of my existing PAs, who’s going to be losing, I reckon, more than 50% of her current income, possibly having an increase in her travel expenses because of this rearrangement.

So wish me luck for the journey home tomorrow.

I will check in with you, O Internet of People, in 24 hours or so. Goodnight.

About Isolde

Writer, Artist and Story Archaeologist living in Co. Leitrim, in the rural West of Ireland. My personal blog, AccessAdventures, features random rantings about the daily entertainment that is being a visually impaired (blind) wheelchair user (cripple). My professional blog, StoryArchaeology, is with my colleague, Chris Thompson, uncovering the layers of Irish Mythology in podcasts and accompanying articles. My arts practice is currently featured on isoldecarmodyarts.youtube.com - maybe a blog here will follow... I am preparing "A Real Irish Woman's Book of Days" (realirishwomen.wordpress.com) to go live for 2016.

Grace us with the splendour of your uninformed "reckon"...

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