Sleep Deprivation, Pain, and Cake…

Especially cake.

It does seem, as I speculated a short while ago, that sleep deprivation is behind many of my problems, not least my reduced ability to write.

Three nights ago I started taking Cetirizine,** an antihistamine, to shut down the baleful itching in my legs that was in real danger of tipping me into a breakdown and/or suicide*** from sleep deprivation had it gone on much longer, and I’ve been getting about 10 hours sleep a night.****

**The label says “This medicine may make you sleepy.” Ignoring the fact that they mean might, not may (might is predictive, may is permissive – they are not interchangeable – and yes, when it comes to people buggering up the English language, I’m a pedant!), they’re not joking about sleepy – I don’t take it until after midday (it’s a one-a-day tab), and spend the afternoon fighting to stay awake, though I’m hoping this will ease as my sleep deficit reduces.

***Not an exaggeration – around 3 hours sleep a week seriously screws with one’s will to live, especially now as **** after two good nights, I was back to bugger all sleep last night, with the pain in my legs; yes, and itching too! Plus a sensation akin to whole-body restless legs. For thise who missed it, I have bilateral lymphoedema, cellulitits and lymphorrhoea – leakage of lymph fluid, under pressure, directly through the skin, which is as much fun as it sounds.

The problem is that the sleepiness is uncontrollable, and I can zonk out completely any time from about 20.00 onward, usually surfacing briefly around midnight – useful so I can catch up on my meds – before going under again.

In addition, when I wasn’t sleeping worth a damn, I’d begun forcing myself to start my day at 06.00, exhausted or not (it’s very much easier now – I might not like not sleeping, but I’m adjusting physically even if, mentally, I’m crumbling), on the basis that a longer day would encourage me to sleep at night and, even if not, it’d allow me to do more, because it would allow me to rest more and, so far, that’s working out extremely well (the trick is not to overdo it and provoke an ME relapse).

Still, after actually getting some sleep, I did produce some of the best posts I’ve written in quite some time which, to me, proves the link between not sleeping and not writing well.

It’s also helped by that fact that for the first time in 30 years, my pain is well controlled (except for my legs but, hey, I’ll take what I can get). Now if I could only get my idiot GP to prescribe a month’s worth at a time, instead of 12 day’s worth, I’d be happy.

I don’t know what’s going through his pointy head – does he think that by forcing me to re-order every other week it will magically reduce my need? Not gonna happen, pal! All he’s doing is making extra work for all concerned, from me to the guy who delivers them.

I’m taking Tramadol and Paracetamol, by the way and, in hospital, I was stabilised on 100mg of the former, and 2 of the latter, every 6 hours – a lower dose simply doesn’t work. It was left to me to figure out, the prescription was for 50 or 100mg, every 4 to 6 hours (the Paracetamol was added later), the higher dose and longer time slot worked better.

For years, as an adjunct to my inadequate pain meds, I’ve been taking low-dose (20-30mg), of Amitryptilline, but that no longer works for some reason – just as well as my idiot GP has stopped prescribing it. It’s potentially dangerous in conjunction with Tramadol, as are all antidepressants (can cause seizures), but in 2 months it had done me no harm at all. Problem with this clown is he can’t tell the difference between a potential problem and an actual one – and panics. Some years back he stopped prescribing DHC because it might possibly cause pulmonary oedema. The fact that I’d taken it for a couple of years, completely unharmed, concerned him not at all – he’d seize upon any excuse to deprive me of anything more potent than 30/500 Co-codamol, and I suspect he’s considering screwing with my Tramadol. If he does, I won’t be responsible for the consequences.

I’m writing this on Sunday. Tomorrow my new bed is due to be delivered (a hospital-style electrically-adjustable profiling bed, for those who’ve missed me banging on about it), and the benefits promised are nothing short of miraculous.

They need to be.

I have had no life since September last year, when the problems with my legs became too painful and too messy to endure (and apart from being hauled off to hospital for 6 weeks, I have been out of this flat just once, for a couple of hours, and once to the nearby ATM). If that can’t be improved, I have no interest in it at all.

I was assured that soaking my legs in a potassium permanganate solution would fix the leaks in 7 to 10 days. It didn’t, so I fully expected it to continue. It didn’t.

The lead nurse on my case – when it became clear I was getting worse when it stopped, I asked for it to be continued – said 10 days was the maximum, any longer was dangerous – NO! It’s fucking not! (Source, British National Formulary)

7-10 days is merely an average time-span, it’s not carved in bloody stone, and with averages there will always be people who are outside them, as I clearly am, because my condition is worse than average, or simply resistant.

There is no time limit on treatment, and the only hazard is to mucous membranes, conspicuously absent from legs. It can be continued without risk, and by Christ it will be, if I have to do it myself.

I asked for the phone number of the Tissue Viability Nurse, to talk to her about this, and was told that patients weren’t allowed to contact her. All patients, I wonder, or just one frustrated and angry patient who hates being kept in the dark and fed bullshit? Save that for mushrooms.

One last observation – how well I feel seems to have a direct bearing on how well my baking turns out. I stopped baking quite a while ago, as what I was turning out was too mediocre for words, and IO felt pretty awful pretty consistently. Today, though, I made a stunningly good fruit cake, as light as gossamer, with a thin, but extremely crisp, sugar crust, and my usual 50/50 white and wholemeal loaf, and that also turned out surpassingly light, also with a thin and very crisp crust, and very tasty. And bear in mind that this was my standard loaf – same ingredients and same method every time, except this time some Puckish whimsy led me to add 50g of milk powder, and the difference is amazing. I think that will become part of the standard recipe from now on. It also adds 20g or so of protein to the loaf – not a lot but as I’m apparently deficient in protein, with so much of it leaking away through my legs, every little helps. It also seems to firm up the dough, giving a better rise once it’s above the edge of the loaf tin, and thus unsupported.

And with really good bread, and great cake, just sitting in the kitchen, I’m feeling unfeasibly hungry!

The cake, by the way, isn’t my long-established wholefood oats and wholemeal flour spicy fruitcake, but a traditional one based on butter, sugar, and eggs creamed together, a technique I’ve not used for 55 years. I learned most of the basic culinary techniques when I was a kid, and while I often can’t remember what day it is, I do remember the important stuff, like how to drive a kitchen without even thinking too much about it.

For the cake I used white bread flour – it’s all I have, that and wholemeal bread flour – lightened with baking powder, and it yielded the most delicate, friable, pale golden, cake, which just begs to be eaten, and not the slightest hint of bread about it.

9 thoughts on “Sleep Deprivation, Pain, and Cake…

  1. Your language pedantry reminds me of a teacher whose response to “can I go to the toilet?” was “I would hope so”.

    When I first moved into my new place, I spent a few weeks sleeping on cushions on the floor, counting down the days until my new bed was delivered (only for it to be postponed due to bad weather). I hope you enjoy your new bed tomorrow as much as I did when mine finally arrived.

    • I think the nurses claims for it are a tad extravagant – we’ll see – but at least I should be able to sleep in it. I could in hospital, and I’d happily settle for just that.

  2. well nice to know somethings turning out good for you ,if only bread and cake eh? lets hope the bed does what they’ve claimed, though in light of other claims they seem to have made, it might be a case of dont hold your breath/ still you never know.
    after 2 nights good sleep on HIS bed (which definitely sounds like the one your getting from all accounts) my bro in law is reporting that he feels much better,more than for a long time. they say sleep heals. maybe it does.dont know about his legs though. he had to get district nurse out this aft (sorry ,yesterday aft) to change his leg dressings…. he has developed 2 bedsores on his derriere and a potential one on one of his heels.(before the new bed arrived) dont know what size you are Ron but hes 30stone or more.
    anyway good luck with the bed tomorrow.hope its a success for you.

    • The cake is excellent despite (because of?), being made with bread flour; it’s amazingly light and delicate. Could use more fruit,but that’s just me, it’s still the best cake I’ve ever made (and what’s left of it won’t last the day!). The loaf, too, benefited from added milk powder – it gave the yeast a boost and gave me a firmer dough too, a happy combination.

      On the personal front, although in a lot of pain from my legs, I actually feel pretty good at the moment – as long as I can sleep!

  3. I’ve found that the hospital bed and air mattress have helped my long term oedema to be more comfortable at night, although it hasn’t reduced the problem. It also makes cleaning up after it easier as my mattress has a rubber-like, breathable cover. It will take a couple of days of playing with the controls to work out the exact position you find most comfortable but it is worth it.

    • That’s pretty much what I’m expecting. Claims that the bed will magically reduce my oedema (and the infection!), strike me as garbage. Still, I’ll settle for being able to sleep – if I can do that I can cope with the rest.

  4. Cake and bread sound delicious 🙂
    New bed arriving sounds wonderful and I truly hope that you get the sleep you need, and that it helps your legs.
    Have you thought about taking Gabapentin? I take them for nerve pain as they really help with the sensations I get in my residual limb. I was also taking them for a few months before the amputation to help not just with nerve pain, but with pain that wouldn’t go away. I take 900mg three times a day and can’t rate them highly enough. They are an anti-epilepsy drug and are used for an awful lot of things. Our GP is talking about trying them with John as he suffers with Chronic Pain Syndroms and the sensations he feels in his legs, as well as the pain, just get worse as the years go on. He has just been diagnosed with COPD and Emphysema and is due for his heart scan tomorrow as the fluid in his legs, stomach and lower back problems are bad so all. He’s on the Furusimide 40mg each morning to help the fluid in his body, but they can’t start him on any other medication until the results of the scan are sent to the GP. Until that scan has been done (as his ECG’s at the surgery came back as abnormal each time), he can’t go on any other medication for the pain or for the COPD.

    Anyway Ron, I really hope that the bed does come and that you have a wonderful sleep – night night, sleep tight…

    • The cake is amazingly good. Bread too, but the cake has the edge by some margin.

      If John is badly waterlogged, he can increase the Furosemide. I’m taking 80mg, but you can go up to 2mg, in divided doses – I took 80 in the morning, 40 in the afternoon.

      Emphysema, by the way, is the defining condition for a diagnosis of COPD. They can certainly treat his COPD separately from his heart, and should be as improving lung function ease the strain on his heart. Pain can be treated too – the three issues are unrelated as far as treatment goes – all my heart tests from ECGs to echocardiograms, have been done with a full drug load. Sounds like you have an over-cautious GP.

      I suggested Gabapentin in hospital, but the doc said it was inappropriate for my pain. Overall though I’m happy with Tramadol.

      GP was complaining that my dressings cost £45 a day – think he was trying to guilt-trip me but that never works. I could maybe use it as a lever though – as this will go on as long as I live – to get a referral to the Lymphoedema Clinic, which will put my costs on their tab!

      Tell you what, though – I’ve been living in one room for so long it feels really weird to leave it to go to bed!

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