Final letter to my GP – I hope!

This, I hope, will be the last letter I have to write to my GP. I’m writing this because he is challenging how ill I am, and my contention that even something like vacuuming is, for me, on a par with running a marathon for someone as fit as I used to be. I chose the marathon because it’s something most people are aware of, and can relate to on some level. Not, it seems, my GP.

He also – descending to full-on fuckwit mode, because he’s seen me only about 8 times in 10 years, and most of that was during last year’s extended crisis – accuses me of abusing my meds.

I take 16 drugs, about half of them dangerous, plus 10 supplements used as drugs to treat my ME – currently a total of 56 tablets and capsules a day, plus 3 inhalers multiple times. Why the fuck would any sane person want to take more by abusing them?

This, I hope, with the addition of a suitable introduction, will set him straight:-

Continue reading


Cooking – Back to Basics, Part 1 – the Batterie de Cuisine.

My recipes always take me by surprise with how popular they are and I thought, a few days ago, that it might be an idea to go back to basics. Recipes, of course, are an end product which start with the batterie de cuisine – your, and my, kitchen tools and, for our purposes, small appliances – without which you’d be hard pressed to make much more than a sandwich.

I did this a few years ago, but kitchens – and readers – change with time, and not everyone reads the older posts, so it seemed like an opportune time to review the kitchen situation in the light of my worsening disability. And to cover what’s needed in a decently-equipped kitchen, from tools to ingredients, for anyone considering branching out on their own, with the focus, where necessary, on disability. This, the first part, covers the tools.

Links are provided where the items I use are still available. Obviously, you don’t have to take my advice, but Continue reading

A Wheelie Good Idea…

For those unfamiliar with the term, a wheelie is a wheelchair user (a powerchair user is a power wheelie).

I’m experimenting with a way of improving handrim grip on my manual wheelchair, not least because it’s likely to feature rather a lot in my future.

I wear cyclists’ track mitts (simply known as fingerless mitts, or gloves, these days), as they are a fraction of the price of the Continue reading

Wheeliedom is upon me…

Probably for the best, too.

I’ve been talking, periodically, about becoming a full-time wheelie for quite a while, but I keep putting it off in the vain hope that things might improve. However, as getting to, and staying on, my feet brings me into sharp collision with the law of diminishing returns now, I believe it’s time to bite this particular bullet.

I got out of hospital almost a month ago, as weak as a baby and, like some  babies, I’ve failed to thrive. I am, admittedly, somewhat more active than the care assessors expected at this stage (they say Continue reading

My perception of my support assessment…

With the best will in the world, I cannot see how my embryonic support package is going to work out.

I understand that they need to see exactly what I can do for myself but, right now, that’s as close to bugger all as it’s possible to get.

And let’s not lose sight of the fact that if my consultant is right, I’m still dying – and at the moment I’m fighting a drugged-up holding action, with no suggestion of any real recovery on the horizon. I might be home, but physically and emotionally, I’m still in crisis. Continue reading

Sick? Disabled? Just think happy thoughts and all will be well…

There is an infuriating tendency on Twitter for people to say things like “I have a life-changing, painful and disabling, potentially fatal, illness, but it’s not really me,” or “Hey, I’m totally happy that I’m so ill I’m confined to one room!” Or one that seriously pissed me off late last night, and I paraphrase because I can’t recall the exact words and, on Twitter, it’s impossible to look stuff up “ If your life is shit, it’s your own fault for doing it wrong,”

Such sentiments, in all their apparently infinite variations and expressed by people who are, apparently, sick and disabled, tell me one of two things Continue reading

Living with chronic, severe and intransigent, pain…

Note: I started this some time ago, but have been undecided whether to finish and publish it as it seems a bit whiny. Right now, though, I’m hurting enough not to care. That, and I think it’s better out of my head than not – gives me some perspective.


I’ve been taking 30/500 Co-codamol for a long time now, except for relatively brief diversion to Dihydrocodeine (DHC), which was somewhat more effective but, given my heart problems since January 2011, has had a tendency to trigger pulmonary oedema. I still take DHC occasionally as part of my “Spoonie Speedball” – 2 Co-codamol + 60mg DHC and 200mg Naproxen, on the intolerable days.

Been a lot of those of late… Not good on several levels, not least because Continue reading

Cooking with a chronic illness – the reality…


Next week I need to cook, I’m getting a bit low on frozen meals and, frankly, I have a deep-seated need to do one of the things I do best, even though I can’t do it very often. To do this, I need to be able to rest as much as possible between now and then.

I have a new problem, fresh in this week, in that I can’t eat normal-sized meals** – I have to force them down, and then feel dreadful for hours after – so what I’m aiming for is well flavoured dishes that make me want to eat them, even if it’s only a small portion.

**And as I have only one meal a day, this is not a good thing.

The first job is to Continue reading

A hidden cost of disability and illness, plus assorted foodie ramblings…

In my case, a quite substantial cost is in wasted food, simply because I am all too often too ill to cook. When I am able, I get maximum benefit from it by cooking for the freezer – cooking on a daily basis, one meal at a time, is simply out of the question.

Yesterday, in the hope I’d be up to it today, I defrosted some braising steak. It was a vain hope and, unless things change as the day goes on Continue reading

UK’s Paralympian’s can put the plight of disabled people centre stage – but will they?

Yes, I know there’s a rogue apostrophe in the title, but I can’t fix it without screwing up Google’s listing.


British Paralympic Association unveils ‘five-year vision’ with strategic plan that aims to use profile of London 2012 to help ‘inspire a better world for disabled people,’ while Dame Tanni Grey-Thompson also says “It’s important to recognise that the cuts will affect Paralympians, who have higher living costs as a result of their impairment.” (Source, Monday’s Guardian.)

Just one tiny snag Continue reading