I really don’t know what to do about my future, or even if I have one.

Self-pity warning! Things are getting away from me and I hope, by getting this out of my head (and I’ve thought long and hard over whether I should post this, the emotional cost of which has been pretty high, and scary), I can regain some control. Or, at least, a semblance thereof, because if things don’t change for the better, I’m screwed.

I don’t normally do self-pity – I just thought I’d get in with it first!

To show you one of the things that is blighting my life, I was going to leave this completely uncorrected but, by the end of the first page (there are 6 in total, plus the image), there were so many errors I just couldn’t face it. And it was becoming unintelligible. Which is why it’s taken 3 days to write just under 2,300 words.

So, anyway, I went for a walk the other day. Not a long one, a very short one, just a few minutes, since when I’ve felt so desperately ill I thought I might die. My heart, for sure, didn’t approve of the experience. Nor did my shoulders (I used my crutches for only the second time in two years instead of my chair). Perversely, though, pretty much the only part of me that doesn’t hurt any more than normal is my right leg, the one with the holes in it, the one the eternally pessimistic nurse told me yesterday was only ever going to get very much worse. Well, not if I have any say in the matter, though I can’t deny it is currently getting worse, and I believe the last change to a different type of dressing has, to use a technical term, fucked it up, big-time.

Until now I’ve worn shoes – my Ugly Shoes – once since this god-awful crap really hit its stride in the summer of 2012. On Tuesday, I was able to wear my boots for the first time since then, too. I initially had to stop wearing them as my legs leaked so prodigiously my boots would fill up. Not just uncomfortable, but it stank  and, ultimately, would have ruined them and, at close to 100 quid a pop, that wasn’t on.  I did ruin one pair, before giving up.

For months, now I’ve stopped leaking, and this has healed, which prevented my wearing even socks,  I’ve been trying to figure out how to construct a shield to protect my leg lesions from the pressure of my boots,** but the dressings, absorbent pads and bandage were so thick that it was impossible. I was also trying too hard – simple is better.

**I was struck by lightning in 1983, which trashed most of my joints and, literally, fried my feet and melted my walking boot soles. Since then, the only footwear I can tolerate is one particular brand and model of walking boot, Berghaus Explorer V Gore-Tex – now apparently discontinued – thanks, Berghaus.

Now, though, the bulky stuff is gone, and there’s just a silver-impregnated, anti-bacterial, pad, topped by a hydrocolloid cap (about the size of a large Elastoplast). My shield was a curved piece of closed-cell foam (cut from a camping mat), to which I’d glued two circles of the same material, one on top of the other), and it  was simply too big, so I removed one circle, and cut the backing down by about a third, shaped to conform to the cuff of my boot. The most important change, though, was slipping it down between my boot cuff and my sock – I wasn’t able to wear socks before – result, success! The backing cushioned my boot cuff, and the circle kept the pressure off the lesions. Damn, I’m good! The boots are essential if I’m to make any progress, as they provide a comfortable and stable platform which minimises the risk of falling.

So, as I said, I had a very short walk, went for lunch with a very good friend (thank you, Fi – I hope you know how much your friendship means to me, even though pain can make me poor company at times), felt pretty awful, lied about it, and had three beers in a failed attempt to feel better (three pints is my maximum these days). And next day thought I was about to die. Three days on, I still feel awful and, I was told today, look pretty terrible, too – not helpful.

I have never felt so ill and not been in hospital. And I have never felt so exhausted – period. Almost every minute of every day, since, has been a battle so stay awake.

I haven’t called out my GP because he won’t come, and his default response is “Go to hospital,” apparently all too common with GPs now, and overwhelming A&E departments across the country according to this article in Pulse. You might not be able to read it without an account, though.

I have semi-permanent cramp in my hands, legs and feet, the result of impaired circulation caused by my calcified and narrowed aortic valve. Probably explains my impaired mental functions, like losing the ability to type accurately and, some days, to even write at all – I’ve been working on this for 3 days so far, and if it’s not published before midnight it’ll be 4 days. Plus as many rewrites and the timeline keeps slipping.

I’m permanently, almost suicidally, depressed too. I take vitamin B6 which helps a little, but I can’t take conventional antidepressants as the side-effects are too extreme. The older tricyclics work, but only by shutting my brain down so that I can’t think enough to be depressed. Or at all, so that’s not acceptable. SSRIs make me cough so uncontrollably violently that my lungs haemorrhage. So I have to live with it.

Or not.

My more immediate problem is how to proceed. Thing is, I haven’t been able to walk worth a damn, even with crutches, since 1986, so regaining any useful walking ability is never going to happen. Hell, 20 yards is a challenge most days. Some days I’m down to single figures and have to pee in a bucket because  the 8-yard trek to the bathroom every 15-20 minutes, thanks to my diuretics, is beyond me – if your spies are taking notes, IDS you prying, psychopathic, lying sack of shit, take fucking note of that!

On the other hand, walking is good for lymphoedema, or so I’ve read, as it would improve my circulation – blood and lymphatic (though the way my feet are swelling (again!), I’m starting to question that), so I need to find some form of exercise that I can do, that will benefit my circulation, isn’t walking, and that doesn’t make me worse. Fat chance.

Exacerbating my problems is Addison’s Disease (my adrenal glands have failed or, at least, are failing). I went through the acute stage in hospital – not that anybody bothered to tell me. With hindsight, that was when I was taking huge doses of hydrocortisone while, since I got out in March last year, I’ve taken a maintenance dose of 30mg a day. Prognosis? Dunno for sure, but given everything else that’s wrong with me, it won’t be good.

I have a Thiamine deficiency, too. The dose, 300mg daily, indicates a severe deficiency. This, too, originates from my stay in APH early last year, and has never been discussed with me, so I have no solid idea as to the cause, though Wernicke-Korsakoff Syndrome is right on the money in terms of symptoms, as I’ve said before. Its usual cause is alcoholism but I’ve never met the normal definition of an alcoholic, and don’t accept that I was.

I’d go to the pub once a week and, admittedly, probably drink too much, and that was it. I almost never drank at home, no more than half a dozen bottles of beer in a year, and over the past 2 years have barely had a drink at all – I can count them on my fingers and have a couple left over. However, these days when 2 pints a day is classed as binge drinking by some miserable sods, I might well fit some definition of alcoholic!

I should have pursued the docs for information re the hydrocortisone and Thiamine – it’s not like me to let anything medical slide like that – but the past year has been hellish, and I had such a hard enough time hanging on to my sanity and even my life, at times, that I didn’t even think about it most of the time, I was too pre-occupied  and in way too much pain. And, in both instances it happened when I was at my worst, and in hospital.

Now, though, the pain is mostly under better control (but by no means gone), as a nurse – not one of the regulars – told my GP he had to increase my morphine. He increased the Zomorph by 10mg per dose, so now I take 70mg every 12 hours, but he still thinks I’ll die if he prescribes more than 5ml of Oramorph for breakthrough pain, despite the hospital keeping me on 10ml without problems.

NB: For Zomorph I have to sign the Class A drug book every time it’s delivered. Oramorph is so very much weaker that this isn’t a requirement, yet the idiot thinks it’s dangerous. It’s bloody not, so I take what I need, when I need it and, trust me, it’s not 5ml.

5ml is utterly useless – it does nothing at all and is just a waste of a drug. Some days, even now, it can take as much as 30ml to get my pain back under control – I’m not taking the bloody stuff for fun!

In fact, while almost everyone I know gets a buzz from opiates and opioids, I’m one of those people for whom they do nothing at all remotely enjoyable. In my youth, the occasional recreational drug proved such a waste of time and money I was never tempted beyond an initial and very brief flirtation with pot and coke. The only drug my body approves of, apparently, came from a hand-pump. I don’t even like wine and spirits that much.

But I’m drifting way wide of the point here, which is where the hell is my life going?

I know that my lymphoedema is incurable, but if I can hold it at its current level it’s tolerable, even if that’s only barely at times (my body is so screwed up by it that any sex life is purely hypothetical, and I’m finding that less tolerable than the pain, psychologically, anyway, if I’m honest about it).

This is my daily life, and has been for far too long; it leaves little room for anything else:-

Meds schedule

I’ve inserted this as an image as I have no idea how to configure 2 columns and it would take up too much space as a single column. Paracetamol is often boosted with 200mg of Ibuprofen.

And yes, I have just one meal a day, in the evening. This is because if I eat lunch I’m out cold within an hour or so, for most of the afternoon. No-one can tell me why this is but it’s been happening for the better part of 20 years, and the only solution is one meal a day. My own view is that my body has the energy to function at its normally low level, or to digest a meal – not both. That, however, doesn’t explain why I can go out for lunch and stay wide awake, or why my evening meal doesn’t always wipe me out the way lunch does (it does sometimes, but rarely).

I could try breakfast, that doesn’t shut me down, but I have so much trouble staying awake once I get up that it would be pointless as it would never get eaten.

So, aside from my almost continual drug intake (and supplements taken as drugs to treat my ME), my life is spent sitting in front of a computer that I’m growing to hate, especially as Twitter has gone from a social medium, where people could meet up and chat, to an axe-grinding and advertising medium, and it’s starting to piss me off. I know why the axe-grinding – and I’m as bad as many others in the current political climate, though far too many abuse it – but kindly bugger off with the advertising! And the mutilated animals, thank you so much you thoughtless pricks!

I have a break to read now and again, or to write; very occasionally to cook, and at the moment I have half a kilo (dry weight), of soaked chickpeas in the slow cooker, along with a carrot and an onion. The latter, though – and this was the point of the slow cooker – needs no attention from me.

And that’s my life – repeat times 365 or 366.

And it is not enough. It really is not worth the effort of getting out of bed for – it’s not living, it’s merely existing.

There is very little in the way of pleasure to be had, stuck in here day after day – and yes, this is self-pity, and long overdue!

I do not want to live like this, it really is that simple…

This isn’t a suicide note, not yet awhile, but there has to be some way for me to get some quality of life, because I sure as hell haven’t got any at the moment and if that can’t change then I will have to reassess my priorities.

And before some helpful soul tells me there are people worse off than me, I’d say two things. 1) It doesn’t help, and 2), How can you possibly know that?

So, before you get the urge to tell me that, read these two posts – and then reconsider.

On being struck by lightning…

And

The NHS is failing, so let’s blame the sick…

The two, together, will show you exactly what’s wrong with me. In the latter post, the bit about me is near the end.

As, indeed, am I.

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17 thoughts on “I really don’t know what to do about my future, or even if I have one.

  1. Nothing I can say is going to make you feel more positive. Nevertheless, my heart goes out to you and I wish I could bear some of the physical and psychological pain for you but of course that wouldn’t really help either of us! What I would say is that I’m an advocate for self-pity and believe it’s necessary to feel it every so often. It can be a way to gird the loins and look at life afresh and I’m keeping my fingers crossed that this will be the case for you. And writing it out as you have in this post is therapeutic, as you say. I have been where you are now and that’s with a condition that comes nowhere near yours in the pain and anguish stakes. This to me shows how incredible you have been so far and that you are very strong and can overcome this impasse. Thinking of you and hope I’m making sense.
    Sarah

    • Thanks Sarah.

      With hindsight it was a mistake publishing this last night – no sleep to be had at all (except when I was supposed to get up, so I overslept!) so feeling like my brain’s turned to mush today.

      You know, people tell me how strong I am, how brave (I don’t agree, I’m just a very sick guy getting by the best way he can, but the consensus is overwhelming so I’ve stopped arguing 😉 ), but, you know, I wish with all my heart I didn’t have to be either of those things.

      Ron.

      • I feel the same about words like ‘strong’ and ‘brave’. We are just coping with what we have to. But I do think strong is different to brave and you should take what you can from that. If you wish you hadn’t published this post, just delete it and move on. It might make you feel better! (I think you should be writing your memoirs as a cook book for spoonies. You can certainly write and the recipes are good for anyone.)

        • No, I just wish I’d waited until this morning to publish the post – then it wouldn’t have kept me awake.

          The book’s on the way. Don’t know how long it’ll take as many of my recipes have metamorphosed somewhat over time, and need to be rewritten (plus some have a terrifying number of typos that I’ve somehow missed), and all have to be sent to Amazon for conversion to Kindle format, partly because I want to load them on my kitchen Kindle which keeps all my recipes above my workspace – those that aren’t still in my head, anyway (more typing). When I get it finished I’ll stitch all the parts together and get the whole thing converted. At the moment I’m still trying to find a narrative structure on which to hang the recipes.

          I’ve an old Keith Floyd book (1981), which says, basically, “Here’s some recipes, damn, I’m good, get on with it!” but that approach won’t fly these days. Maybe I can capitalise on the absurd smallness of my kitchen (the size of a single bed, and my workspace is the size of a pillowcase)? Something to think about. At the moment I’m browsing through my cookbook collection (over a century’s worth – I used to collect them before running out of space), looking for inspiration.

          • If I’d responded to this post last night, you might have been able to sleep! But I was too tired to put into words what I wanted to say. I’ll reply properly to the above anon as I might have some suggestions but I must try and finish my post before I run out of energy!

                • Ah – sussed. As in “I’ll reply properly to the above, anon, as I might have some suggestions.”

                  Commas matter!

                  But why anonymously anyway?

                  • ‘Anon’ meaning ”at a later stage, not as in anonymously. Old fashioned, I suppose but I’ve used it all my life. The commas make sense in this instance. If I’d meant a commenter by the name of Anon, I’d have capitalised the ‘A’. So there!

                    • I’ll polish my crystal ball 😉

                      I must refer you to one of my tweeps who gets extremely peeved when I use words not in her vocabulary. I once complained, in a tweet, that, not content with taking my money, Amazon was “constantly seeking my approbation” for the products I’d bought.

                      Luckily, it was someone I knew, though at the time only slightly, so I explained, politely, what it meant, and that far too many words were being allowed to fall into disuse, that it was a crime against language that nobody cared overmuch, but I did, and the fact that a word isn’t in everyday use is no reason to pretend it doesn’t exist. Rather than use the same few words all the time, we should introduce variety, to try to ensure that perfectly serviceable words simply don’t fade away through ignorance.

                      She wasn’t entirely happy, but she took my point.

                      Around that time I wrote this https://ronsrants.wordpress.com/2012/06/05/the-queens-english-society-is-wrong-to-just-give-up/ about the dumbing down of the English language. I’ve just re-read it and it is, arguably, one of the best things I’ve written. And there’s a fun link in my first reply to a comment.

  2. I’m with you all the way. I can’t pretend to be perfect these days and that’s partly because of seeing and reading so many howlers on the net. I find myself writing ‘you’re’ instead of ‘your’, or vice versa, which disgusts me. As for the tweep you mention, don’t get me started! I could say much more but I’m saving it for my own use-of-English post which I’ve been mulling over for months, fury being the spur. And if I see another ‘1960’s’ or ‘1800’s’ …

    • What baffles me about Twitter is that most of the cock-ups use more characters than getting it right would – yet it never seems to register. And almost everyone who is challenged about their spelling, punctuation, or whatever (not that I would, publicly, but some do), immediately claims to be dyslexic!

      That or they defiantly claim they’re right and the rest of the world is wrong and, yet, getting it right is easier than it’s ever been – just go to http://www.oxforddictionaries.com/

  3. Man! I really dont know what to say to you to express my concern and sorrow for all the shite you have had to deal with for the longest time. I found your blog through looking at your user account on The Guardian and your bio comments brought me here. There’s not a great deal I can say beyond what I’ve put here already…there’s nowt that I can say that’ll be any comfort to you (I dont think) so I wont go on. Except to say that I’m gonna keep an eye on this blog to see how you are.

    Hoping your days get better for longer.

    Edd

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