Well, it’s been a while

 To be honest, I had not realised it’s been almost a year 😲. I’ve been busy with long Covid advocacy and it’s exhausted me to the point of relapse. And I have Covid again. Somehow. I’m so cross, as I’m Covid cautious. One of my cats had to be put to sleep, but I have welcomed two ginger ninjas who Archie is happy to be around.

We have had a change of government, after one of the worst winters & springs in terms of politics. I’m not hopeful about the new government, but at least they’re not Tory. Same rhetoric on disabled and chronically ill. And the disabled & chronically ill with Long Covid are currently not well enough to challenge this effectively. Not with everything else we have to do.

I’m currently having to buy a whole lot of new splints and shoppers. With my pension being 1/3 of my former income, even having full ADP and a bit of ESA, it’s not really enough. I also need to fund a power add-on for my manual wheelchair (what I need isn’t funded under motability). I can’t just get cheap splints. I’m managing with a new thumb one, but it will need a decent new one soon, plus I need two to deal with my dropped foot and spasms issues.

I do have a cleaner back. This is a huge relief. I’ve at least got a clean home twice a month. I am still waiting to see a social worker (nearly 18 months at this point) for a personal assistant assessment. I’ve also been diagnosed with sleep apnoea secondary to Covid in 2020, but the waiting list to be seen for APAP is long. PoTS is an ongoing issue. My local trust still refuse to permit prescription of medications for MCAS, even with a new letter from one of their own recommending it. Speaking of which, I now have to get my records updated, as you need them for benefits stuff. I absolutely hate this - I don’t understand why the agencies can’t access these records themselves.

Due to all the work I’ve been doing for the Scottish Covid Inquiry, I’ve not been able to do anything much else at all. Craft took a back seat, my other LC projects also did too. I’ve taken part in some research projects and studies, but social media is a low priority and recently my hand tremors and cognitive dysfunction started again. That’s frustrating beyond belief.

I did shorten some old PJ pants into shorts, not that the weather is good enough to use them, with two more sitting waiting to be done. I have cut out pattern pieces for planned makes (the fabric has arrived and been washed). Then I realised the big ironing board is in the cupboard behind the new cat litter tray… 🤦🏻‍♀️.

So that’s me. I’ll write a post on how I manage symptoms as a lone person on bad days soon. When I feel a bit better and I have more energy.

So….in about another year then? 🤣. TTFN