thin white woman with painted nails and well kept hair lying face down on clean white bedsheets

I’m Back – And I’m Tired!

In which I ramble about the last three months (nearly). It doesn’t seem like such a long time not to be posting, but it’s been strangely hard to get back into writing here. So in this post I’m not talking about any topic in particular, but just making a summary of what’s been going on for me while I haven’t been posting.

The Computer Question has been the reason for my absence, and consists of the sudden and irreversible death of my elderly laptop rather sooner than I had been expecting. I knew it would happen at some point, and had already decided purchase a fancy detachable 2-in-1 laptop to replace it – not for the fanciness but because of the advantages to my health! I had, however, anticipated having quite a few more months to save up money to buy it with.

I also knew, though, that it would take me a very long time to save up the entire amount I’d need, and I had already started a gofundme campaign, hoping that a few people might be willing to chip and help me to buy the computer a little sooner. In fact, incredibly, the campaign raised more than half the amount I needed, even taking into account some extras. My friends and acquaintances showed a truly astonishing level of generosity, and several total strangers donated too. I will always be grateful to every single person who has helped me buy the beautiful computer which I finally ordered a month ago.

My sister lent me her iPad after my computer died, which made an immense difference and kept me sane during the two months I didn’t have a computer. Those weeks would have been a hundred times worse without it. All the same, it also showed me that I had been wise to stick with computers rather than switching to a tablet, as I had briefly considered because of  their much greater lightness and portability.

In addition,  a wonderfully kind friend lent me the rest of the money I needed, on top of the gofundme and my own savings, to buy the computer. I decided to accept; it would have taken me several months, perhaps as much as a year, to save up the amount I needed on my present income. Finally, the computer I had decided on had some money off in the Black Friday sales, and it arrived the next day.

It’s wonderful to have a computer again. Starting to use it was like waking up from a hibernation! Having said that, I do still have to pay my friend back and, as you will see from the next part of this post, my income isn’t likely to increase in the near future. So if you are able and willing, I really would appreciate anything you are able to help me with. You can donate on my page here:

During this time, I have also been applying for PIP. If you’ve done this yourself or know somebody who has, you probably know what a nightmare it is. The DWP rejected my application, refusing even the basic level of benefit for either daily living or mobility (in fact, I qualify for the higher level on both). The report that explained how the decision was made was a conglomeration of nonsense and did everything short of calling me a liar in so many words.

I’m sure you can imagine how devastating that was. It doesn’t matter how much you’re expecting something, it’s still horrible when it happens. It’s not even just the money, though of course that’s desperately important when you have so little. But it’s the feeling of hostility towards me for something I can’t help, the denial of simple truth, the sheer helplessness of knowing how hard it is to fight against a system that does this to the majority of people.

My mandatory reconsideration is now in. I’m hoping for the best, since I now have extra evidence from the council (see the next section). I know that sometimes people do get what they qualify for on a mandatory reconsideration. I also know that a lot don’t, and have to go to tribunal. We’ll see.

As well as PIP, I’ve been applying for care and home adaptations with my local council. It’s taken a lot of spoons, various appointments, and much thinking, discussing and planning, but things are moving in a helpful direction. I’ve been assigned a rough budget for care, so my next task is researching local care agencies and deciding, with my mum, which ones are worth contacting. She’ll be the one who has to do that, of course, but hopefully it won’t be too much longer until we have some care in place. It will be a challenge at first, of course, but it will take some of the workload off her shoulders and, I hope, help my own life to go a little more smoothly and tidily.

The council have also referred me to their own OTs, who they say are busy at the moment but will at some point come and assess what adaptations can be put in place. We’re asking for a stairlift and a walk-in shower, which will both be huge boons, but they will be able to advise if there’s anything else they think they can provide. It probably won’t be plain sailing, it certainly wasn’t when my sister went through the same process, but at least things are slowly getting into gear.

My health, of course, has been significantly impacted by all these events. My OT from the ME/CFS clinic seems to have more or less run out of suggestions. His latest, and final, one has been to attempt to increase my activity very very slowly, beginning with taking six extra steps each day. However, because of everything that’s been going on, I have been doing so much more activity than good pacing would require that six extra steps seem completely superfluous. I’ll give it a try when things settle down a little, whenever that is. But even he didn’t seem to think it would really make a positive difference.

At present I’m paying very heavily for Christmas fun. We celebrated on Christmas Eve, and I spent the afternoon and early evening downstairs. It was much too long, of course, and I knew it. But I wanted to stay downstairs and enjoy myself. When (I’m choosing to write ‘when’ rather than ‘if’) we have a stairlift installed, I will be able to come upstairs to my room to lie down for an hour or so and go back down again later on, which will lessen the impact significantly, but as things stand I simply can’t go hopping up and down the stairs all the time, I haven’t the energy.

And so, a week on, I am still spending several hours each day resting on my bed. I’m in constant pain, and the brain fog is infuriating. I loathe not having the capacity simply to set my feelings down properly in words, to think straight, reason properly, or rely on my brain to make decisions and warn me of consequences.

Wishing all my readers a decent 2019!


Photo by Vladislav Muslakov on Unsplash



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