Tag Archives: food

A Futile Fibro Flare-Up Day…

Temp| 8°C

Still can’t think beyond the pain. My brain is zoned out.

I’m in no shape of, or for, anything.

Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.

Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.

It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺


There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.

I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢

I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔

… I could really do with her right now… 



I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…

  • I’ve been rushing around checking into, and booking, Premier Inns…
  • Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
  • I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
  • My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
  • I’ve had a good couple of mini-ish Meltdowns caused by other people…
  • My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
  • I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
  • I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.

 


There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.


 

NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

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No Expense Spared

After all this time, it once again occurs to me more an more how ironic – and moronic – is it that when you are not able to work due to illness (or accident or any health-related matter), your life suddenly becomes much more expensive and you have much less money to do it with. The expenses of just being ill is astounding… and somehow you’re to manage to pay for things despite having much less to do it on.

I’m not sure how the true so-called “benefit scroungers” manage to exist on just whatever they’re given by welfare, or how it doesn’t occur to them to get jobs instead of struggling on these minuscule “handouts”. Unless the only ones who do also have secret jobs on the side. I barely make over 50% of what I used to earn out of these “handouts”, and yet I’m somehow expected to pay for more things, expensive things, out of them.

A wheelchair. Walking aids. Bathing aids. Cabs. Extra over-the-counter non-prescription meds. Joint-Care pills and vitamins. The things you didn’t need when you were healthy enough to work. And those are just some of the obvious ones. Then there are the hidden ones  – energy/utilities are not subsidised just because you can’t work, yet because you can’t work, you’re at home all day, you subsequently use way more electricity/gas/water than you do when you’re working all day. Especially when you’re a tech-head and use high-energy computers and consoles all day. Then there’s the also rent – the the Local Housing Allowance (LHA) doesn’t cover real London rents – not even half (literally), so you have to find whatever’s left out of the money you need to use for everything else.

I’ve just agreed to hydrotherapy to try and help the pain, and hopefully strengthen my arms and legs a little (due to pain, there’s some weakness starting to become quite pronounced). For this, I will need to pay for the cab fares to and from the hospital several times a week, and pay for a swimsuit – I have not owned one of these for at least 10 years and am now forced to find one when I really don’t want one. Unfortunately, they’re also now really hard to find because it’s the tail-end of summer and they’re almost all out of stock… apart for the more expensive ones no one wanted to pay for. Naturally. So there’s more things I need to pay for I otherwise would never need or use.

 

When you used to have money and then you have none, it hits pretty hard – surprisingly so. Especially when the place you live in, which was within your means when you got it, is suddenly too expensive, and housing assistance is limited… proving your suspicion you’re paying well over reasonable rent rates and that private landlords in London are greedy predators. If I didn’t have a very good person, and an exceptional friend, living there with me, I’m pretty sure I’d be on the streets or back home with my parents… not where I imagined I would end up living in my 30s.

Once, the most expensive thing I used to pay for was M&S food and Starbucks. But I used to have a nice pay-packet to afford them. I managed to cope with using London’s TfL network (just £1.45 each way for the bus was quite affordable… or at least that’s how much it was back then) and didn’t require anything more than some occasional mild-co-codramols – mainly because I could afford a good diet and didn’t require any supplements. Now, it is such a different story, having to find money from nowhere to pay for things you never thought you would need to think about, and the things you used to think about get pushed onto the back burner.

Despite needing more than ever to have a balanced and healthy diet, I can no longer afford to eat well or properly – certainly not as well I am used to – and nor can I make good food for myself now anyway. That fact annoys me because I’m used to eating better, and better quality good food. I’m used to going shopping, getting fresh vegetables and making big vegetable pasta dishes. I’m not used to relying on what is essentially basic fast food, and trying to think outside the box when you’re physically limited with what you can make is difficult to say the least. Add to the fact you can’t even afford to buy the good stuff and your options narrow dismally.

It’s still strange to me that I can’t afford to go out, go shopping for something nice, eat nice food, just go out for coffee, go on outings, and certainly not on holiday (unless you count a trip to my parents’ place in Snowdonia…). I haven’t been to non-vital appointments at the GP surgery and have phone call appointments with my doctor. I struggle to pay to go to the hospital for appointments, and I’ve just had to pay £40 for a round-trip to the (18-month late) ESA healthcare appointment – and I’m not even sure they are going to reimburse that. The point regardless is that I had to ensure I had the money in the first instance – and because of which, other things could not be bought.

 

The list of acronyms in what is effectively nothing more than pocket money is hardly worth it. It doesn’t cover anything. The only reason I paid for my chair and other things was the extra PIP a year’s worth of back-payments that came in all at once after my tribunal. Even with the “raise” in my PIP (now they finally accept I have mobility issues), and hopefully now one in my ESA, it is still difficult to pay for things that are quite necessary. To go out anywhere I have to pay for cabs, especially if I want or need to go alone.

No expense is spared from you when you have an illness that renders you unable to work. And in fact they tend to add up to more than you spent before. You lose your independence, freedom, work, income… and what you get in return is virtually nothing, and the government, other bodies, and even other people, see you as a burden on society. Then you have to pay the same for everything regardless, and more, on top of it all. Ironically, on my usual wage, none of this would really be much of a problem. With quietly nearly exactly half (40% in fact) of it missing, though, it’s pretty tough to manage.

I do end up feeling like I’m being punished. I can see now why people pay for certain insurances that pay your wage-equivelant if you get ill (unfortunately, they don’t cover contractors, though). Just when you need your money the most, you can’t earn it anymore, and because of your condition(s) you can’t earn the money you need to deal with it. It’s a cruel irony.

 


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