I appear to be in trouble – again…

As many of you know, I recently spent 6 weeks in hospital, having come very close to starving to death. Now, almost 4 months since my admission to hospital, I appear to be in danger of vanishing down the same rabbit hole.

The big difference this time, of course, is that I know it’s happening, and why.

Last time it sneaked up on me – I got too ill to cook, then too apathetic to eat ready meals (and sick of them, frankly), followed by the crisis-provoking period when it all snowballed and I was eating next to nothing, and what I did eat nauseated me and had to be forced down. Throughout, since Christmas, I was vomiting so much the puke bowl was a constant companion.

It also took its toll mentally (so I’m told – I wasn’t aware of it, though looking back it’s clear I’d tipped into a breakdown), to the extent that, eventually, I had to be bullied out of my apathy and into getting help by my friends online. By that time I’d lost 31kg, and was so weak I could barely function. I couldn’t get into a hospital bed on my own, and if helped in I was too weak to change my position, no matter how uncomfortable

Now, out of hospital for 2 months, I’m still in recovery mode, with a long way still to go. The good thing, though, is that no matter how badly off I am physically, I’ve recovered my writing mojo, to an extent, anyway. There’s some  way to go there, too.

What caused the crisis no-one had any idea, least of all me, but based on information received, and an awful lot of research, it was triggered by protein deficiency which, among other things, saps the will. The first indicator of this was being exhorted to always order the high-protein option at mealtimes in APH, and fed protein supplements (as far as I knew I was supposed to have 2 or 3 a day – I did well to get one and, sometimes, not even that). It’s clear from the search engine strings in my blog stats, incidentally, that I’m far from the only one getting execrable medical care at APH.

Now, I have lymphoedema, and lymphorrhoea – the latter being the leakage of lymphatic fluid, under pressure, directly through the skin, which is as much fun as it sounds. I’ll spare you the gruesome details, which I’ve covered elsewhere, but what I’ve found out, partly from the district nurses and partly online, is that lymphatic fluid is very high in protein, and also contains substances that can erode skin, causing lesions which are very hard to heal. What I’m concerned with here, though, is the protein loss, because since last summer my right leg has been leaking profusely, and as summer wore on it got worse, to the extent that the mess, and the pain, eventually made it impossible for me to go out. As a result, apart from my hospital stay, I’ve been nowhere since September.

I was losing a vast amount of fluid from my legs, mainly the right one (over 3 litres a day at times), which massively depleted my protein levels, and also lead to serious dehydration.

These are the symptoms of protein deficiency:-

Oedema (swelling) – bit of a chicken and egg situation here

Thinning brittle hair and/or hair loss

Ridges in finger and toe nails

Skin rashes; dry skin

Weak and tired

Muscle soreness and cramps

Slow healing

Skin ulcers (not yet but always lurking in the wings)

Sleep problems

Headache

Nausea

Fainting

Depression/anxiety

Thinning brittle hair and/or hair loss is the only one that doesn’t apply to me; though hair growth has slowed perceptibly, that could be seasonal. Extreme apathy, I suppose, can be ascribed to depression (I was certainly suicidal, but too apathetic to do anything about that, either!).

And now I can see a reluctance to eat sneaking in again. Constant nausea isn’t helping, nor is a new (to me), antibiotic that makes me feel appallingly crappy – and even more nauseous!

The reluctance manifests itself as an aversion to the kitchen at the moment. I can cook for the freezer OK, but putting a meal together just seems like too much trouble – and that’s where we came in.

Note for DWP snoops – when I says “putting a meal together” I mean from pre-prepped and/or bought-in components, NOT from scratch.

So I have to force myself to get out there and prepare food, even though the meals are quite small (no appetite). For example, last night I had sausages in onion gravy. That’s all. No spuds, mash or chips. It was incredibly tasty and I enjoyed every bite, but while it was high in protein it was a damn small meal by any standards, yet it was enough for me, and it shouldn’t have been. Mind you, lack of activity, even if it is enforced, restricts appetite too.

Lunch is problematic too. Normally I have pork pies and sausage rolls in the fridge for a quick and easy lunch, but there are times when carbs at lunchtime mean I’m asleep for most of the afternoon. Nothing I have control over – I’m just gone. Which means I’m increasingly reluctant to eat lunch.

Yesterday I just had a couple of fried eggs for lunch. Eggs are high in protein, 12.6% by weight, which is in a highly digestible form. They also contain a lot of cholesterol (don’t panic, we need cholesterol, it forms the insulation of the central nervous system’s wiring). Low in calories – a boiled egg has less than half the calories of the bread used to make a sandwich with it, a fried egg quite a bit more, but that’s good, I need calories right now.

Eggs, then, would make a good lunch, give me a shot of protein, a few calories if not fried, and no carbs to make me sleep (though carbs  are useful at night if I can’t).

Meat, hot or cold, would also make a useful lunch, cheese, too, though it’s high in fat – around 35% depending on type – so needs treating with caution. Fish is a useful – if potentially expensive – option , too.

Today I had fried Spam, topped with melted cheese. Not exactly haute cuisine, but a healthy shot of protein and calories, and very tasty. Bit of a grease-fest though!

Anyway, I’ve got next week’s lunches sorted – salads for lunch, either meat or cottage cheese (full fat – 6%** – very hard to find these days),or maybe sardines, and no bread.

And oddly, my breakfast toast doesn’t make me at all sleepy. Perks me up, in fact. It’s only lunch where there’s a problem with carbs.

So it’s not as if I’m short of things to eat – I am, once again, short of the urge to eat it. I increasingly find myself avoiding breakfast, for example.

Still, as I said at the outset, I’m aware of the problem now, and it’s not going to take me by surprise again – I can get past this…

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8 thoughts on “I appear to be in trouble – again…

  1. at least you seem to know why things are happening and making you ill, even if you cant do anything about it.
    are you sure you get enough Vit D (lack causes muscle/bone pain etc as I’m sure you know)?
    I think you said you take a supplement, but so did I (eventually Adcal 3 the horrible horse pills) and I was still deficient. Actually the amount was negligible!
    I had to have injections and I now take a liquid of 20,000 units 3 times a week….awaiting the next blood test to see if it has worked…fingers crossed. The doctor said he couldn’t understand why the first injection hadn’t sent my level high……….

  2. Remember and get vit b12 with some folic acid plus a multivitamin,(like teaching my granny to suck eggs)

    • Taking a multi vit and mineral, E, C, Zinc, Magnesium, Ginseng, B6, B12 and D3. Apart from the last 3 my standard ME support supplements for the past 20 years. They work, too.

  3. Enjoy reading your blogs Ron, as they cheer me up when I am feeling down.
    Keep on blogging as long as you are able. xx

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