i got an electric sit-stand desk from the government
I have POTS which impairs my ability to work in a number of ways. My concentration is shot, energy is rough, chairs hurt me now, my circulation is terrible so my hands and feet sometimes feel like there’s no blood in them at all. I need help. I didn’t used to. I don’t want to stop working because this is my work — The White Pube is my only job and I enjoy it. When I write, I feel like writing is exactly what I should be doing with my time. It has been a headfuck to have that capacity challenged by POTS, via COVID. Extra weird being self-employed during this time; good at times because I am in charge of my hours, bad at times because I don’t have an employer who can support me to make work more doable and comfortable. The same goes for life. My independence has been really challenged. In 2021, before I actually had my POTS diagnosis, I applied for PIP. Like everyone who applies for PIP, I was unsuccessful. I told a disabled friend and she suggested I apply for Access To Work while I was deciding whether or not to go for PIP again. Access To Work is a scheme ran by the Department for Work and Pensions where people can apply for funds and equipment that enable them to carry on their job. I was not hopeful. I was depressed. At the beginning of 2022, I filled in the online form quickly and basically forgot about it.
About 6 or 7 months later, I got an email from the DWP asking for phone call to see if I still wanted to apply. Yes please. I had a call with someone who asked about my health but more than that, what my job actually involved and how I thought they could help. I had prepared a little list. A support worker who could help me organise myself, go through important documents, proofread stuff, help me book travel, answer emails for me. That would be the dream. What else? I wrote a good chair and a good desk. She suggested transcription and dictation software could be good, as I am a writer. I asked about an air conditioning unit; heat is the worst thing for my symptoms. I think I remember her laughing at the AC suggestion. She hadn’t seen it happen before. Money to pay for taxis to the office would be good; I hadn’t been because the idea of paying for two taxis a day was nuts to me. She gave me a form to fill in so I could put these requests on paper; she asked me to get the doctor to stamp something saying I needed to get taxis instead of buses. I had to get quotes from taxi firms for the trip. I also had to get quotes from three different support workers. The DWP also arranged a video workplace assessment with someone who asked me to take my measurements for an ergonomic chair.
I was stressed out and bamboozled but I got everything over in time. A few weeks later, I got a call. I was so tired when I answered that it took me a few minutes to realise she was telling me I’d gotten everything. They were sending me a very expensive chair. They were sending me a sit-stand electric desk. I have a double leg rest under the desk. I also have a budget to pay a support worker a few hours a week (they selected the lowest quote I’d given them). I have a budget for taxis (they selected the cheapest taxi firm; and the budget equates to the price of one trip, minus the price of the bus; and I have to pay myself, collect receipts, and claim the money back). There is transcription software and dictation software. The desk and the chair took ages to come but they are genuinely making a big difference to my circulation. The support worker is a relief. I did not get an AC unit but I think the laugh was fair warning. I’m going to have to save up for one because I am dreading the summer so much.
But ye! I didn’t know about this until my friend told me. And I mention it to other chronically ill people and they haven’t heard of it either. It took fucking ages and the form making requests was longgggg. I dunno, I need to tell everyone about it. I keep joking that this is my compensation for Long Covid. But it doesn’t make up for being sick. It just takes the edge off ever so slightly when I sit down to work.