Down, But Not Out
Jonathan >
First a fortnight of mostly fine weather, blighted by a string of calamitous problems with the new fencing, and then a back injury that left me scarcely able to stand straight, walk properly, or sleep at night. Other tasks, too, have had to be left to the goodwill of the elves. As the pressure guage has swung into the red, the body has responded with painful joints and sore glands, muscle pain, chronic lethargy and fatigue, blurred vision, inability to concentrate, dulled thinking, slow speech, vertigo, headaches, depression … the whole gamut of symptoms that, back in 2015, forced me to ‘retire’ from civil engineering – essentially to give up my profession due to ill health. The symptoms have ebbed and flowed with the seasons and the circumstances, but this recent episode has been the worst I recall since the first onset, two years ago.
Test have furnished neither cause nor diagnosis – just a shelf-full of repeat prescriptions. A working explanation (at least on my part – based on my own research), was that it’s a neurological condition that can be traced back about 12 years to when I was infected with Lyme Disease: back then it was quite new to the UK, and my infection wasn’t diagonosed (let alone treated) until the ‘infection aura’ had spread all the way from ankle to groin. Now, reluctantly, I have to admit that it seems more consistent with ME / CFS – though a formal diagnosis wouldn’t make any difference. Perhaps its best, as the doctor says, just to treat the symptoms.
This weekend the UK is basking in a heat wave, at the fringe of a high pressure system that’s centred over the Iberian peninsula. Our daughter Catherine and her Basque partner Ion, who live in a mediavel village perched high up in the hills of Navarra, are struggling to cope with temperatures around 40degC. In the UK, it’s been in the upper 20s – low 30s, even reaching 34degC. Except, that is,
in the Highlands and Islands of Scotland: here the temperature is about 14degC. Well, that’s not so bad, you’re thinking (I know you are!), for the Outer Hebrides. Well, we have known it much warmer than that … but I take your point. Or I would, were it sunny too, here. But it ain’t! Persistent winds, swirling low cloud or sea fog – resulting in humidity at 99%, and very poor light. The grass is growing like Topsy, and there’s nothing we can do but stop indoors with the lights on, the wood-burning stove lit to try and invoke the winter we’re-just-so-grateful-to-be-tucked-up-indoors-where-its-warm-and-dry spirit – and pick up the books and weaving (for me, just to be on the safe side, it’s books about weaving) that we put aside months ago when Spring finally sprung.
That, then, was the context for this morning’s discovery of Rhubarb dead in his sleep.
So yes, I’m feeling down. But not out.
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I follow a blog from Australia that is written by a woman who went so very many years with undiagnosed Lyme because Australia does not recognize that it’s a disease there. We compared some of our symptoms that doctors thought at first I might have Lyme. It was not. But I do understand the frustration with practicing physicians practicing on you. They have no answers so they just keep throwing pills at you. I am 7 years in with the remaining symptoms of Bells Palsy. It normally goes away in a few weeks or months. Mine has debilitated me profoundly and it gets worse if I don’t eat well or rest enough. When you look “healthy” people assume you can do everything. Taking time for yourself when you have a flair up is just so important. Hope you are continuing toward wellness. I agree, I also don’t want sympathy, just a bit of understanding when you just can’t keep pushing through. Good thoughts coming your way.
J > Ah yes that’s so right: not sympathy, just understanding or at least making allowance. Thank you for sharing your experience and insight – it’s very helpful.
Hi Jonathon, my form of CFS is Fibromyalgia which I have been able to manage thanks to a great doctors back in the 80’s. As soon as I have flair ups that sound identical to yours I grudgingly take to my bed, then in a few days, never less than 2 I find it’s time to work at getting going. I am not sure if you can manage it with your life style but it helps when it is at its worse to get on a rigid schedule. Eat at same time every day, get good night sleep and get up everyday at the same time. When I am well I forget what it is like to have a flare up. When I am in flare up I can’t remember what it feels like to be well. The pain is all consuming. The good news is that it has gotten better over the years in so much as flare ups are less often – maybe 3 times or four times a year as long as I respond to my regime, and don’t last as long. Years ago it would take a week or more to get better and now it is 2 days or so.
J > Well, well, it is good to get word back from those who don’t just sympathize (which of course is welcome and appreciated), but empathize, because they know full well what it’s about. So 30-odd years of similar makes me sit up and pay attention: it’s interesting what you say about regularity and sleep. I’ve been trying out the ‘pacing’ method – which is more spontaneous than routine: it seems to limit the severity of the episode, but doesn’t break the cycle. I shall have to look into the technique you describe. Thank you very much for your comment, Chris.
Jonathan, how I relate! I haven’t blogged for many weeks – a casualty of the return of a gamut of seemingly random symptoms which led me also to consider cfs/me among other things. (Now looking like an underactive thyroid. Such a common condition, so debilitating and so poorly understood/treated. I’m clinging to the possibility that the right level of medication will put everything to rights…) Anyway, illness for you is so much more difficult to manage alongside your busy lifestyle, with other lives requiring food and shelter. I’m glad to hear you’re feeling more energetic and positive. Take good care. (And maybe get your thyroid checked – but read up on it first!)
J > Thanks verey much Sandra. It’s good to know someone understands, although I’m sorry you too feel caught up in a maelstrom of physical complaints. The doctor did mention about the thyroid gland, so I really ought to have looked that up.
J > Thanks very much for your kind thoughts and info, Sandra. I hope you find a lasting relief that frees you to get the most out of life.
I’m so sorry you have been ill. Being sick is so hard, for sure in the summer when everything needs attention. But I’m thinking along the lines with you that you must still be suffering from the tick bite of so many years ago. Rocky Mountain Spotted Fever is terrible here (tick born) and lingers in one’s body forever.
I am glad to see you are feeling better, it has been a long haul, I”m sure.
J > I have to be grateful for small mercies. For a start that I don’t have Rocky Mountain Spotted Fever – not least because it is such a mouthful! Seriously, though, in the scale of human suffering, I’m not. Especially as here the medical bills are zero.
Thank heavens for Zero medical bills.
Oh, I hope you feel better! It is amazing what stress can do to a body and our minds. Our daughter contracted Lymes last spring, but we were able to treat it right away, it appears mostly successfully. She sometimes gets body aches that wipe her out…the worst one being some neck pain that causes her to lay down all day. Thankfully those episodes have been few and far between. Enjoy some rest!
J > Yup, body aches. And yes at times they are concentrated in certain places – neck, or lower back, for example. I have found gabapentin extremely effective at controlling that background joint/muscle ache – and that means I only have the severe episodes to cope with, not the everyday nagging of body pain. Thanks for your thoughts! Mmmm, a week in bed with my pile of unread or unfinished books sounds good – but very unlikely!
Sorry to hear of the return of your illness and its effects. Pleased to hear that there is some improvement and that the spring is back in your step. Looking forward to many more posts.
J > Yup, life is good again. Feeling good means we see good. If I could do the latter without the former, I’d be a saint.
J > I’m a week behind publishing this post. Back then, I was on the point of giving up blogging altogether. I decided to set the post on one side until the next morning – and see if I was in a better frame of mind. Next morning … I wasn’t. But just a few mornings later, I woke up with a new spring in my step – literally: I found myself running across very uneven ground to catch a lamb that didn’t want to be, eagerly working through the many tasks that had been left undone and generally feeling I’d had another ten years added to my allowance. Why the sudden improvement? Difficult to say: most likely a combination of physical and psychological changes, but chief amongst them a good talk with Denise about how we can get our excessive workload back under control, without giving up the essential benefits of our way of life.