The doctor diagnosed “nerve pain” and offered me a variety of drugs, one of which I’ve already tried as an insomnia remedy and found the side effects outweighed the benefits. I looked up the other options on the internet and decided that my current sufferings aren’t bad enough to risk the possible side effects.
There appears to be no treatment available to repair the damage or prevent further decline, so my decision for now is to manage the symptoms as best I can. Most of the time I’m not completely immobilised by pain and, although things are getting worse, I think my quality of life will probably be better without adding an extra burden of toxicity to my system.
Like many other people with ME/CFS my body doesn’t handle drugs well and I only try new things if and when absolutely necessary. Past experience has taught me to be extremely cautious and to start with the smallest dose possible. It’s a family thing – my very healthy brother was once hospitalised after a bad reaction to prescribed drugs and other relations have similar sensitivities.
I do take take over-the-counter painkillers when necessary, and diazepam to help me relax and sleep occasionally, but I’ll save the heavy duty drugs for later. In the meantime I must heed the wake-up call and take better care of myself. I must take time out to relax my muscles thoroughly, do more gentle yoga stretches and maybe get a massage occasionally.
To be honest I hate it. The heat is debilitating in itself, especially with such a sudden change from rather cool to very warm. Opening windows to let in what breeze there is also lets in the sound of traffic, lawnmowers, power tools, children playing, outdoor conversations, music, burglar and car alarms, adults partying, seagulls screaming, cats yowling etc etc.
The more exhausted I am the harder it is to rest. I’m writing this because someone is cutting a lawn nearby and the uneven whine of the mower is driving me nuts. I’d rather be lying on my bed, but it too hot up there with the windows closed, so I’m marginally more comfortable sitting downstairs. Though I can still hear the bloody thing even with the doors and windows shut.
The more exhausted I am the harder it is to ignore irritations and getting irritated makes it even harder to rest or to organise irritation-mitigation strategies. I’m pretty much at the end of my rope at the moment, but I will get past this, no matter how many days of living at basic ME/CFS survival level it takes. If nothing else, the weather will change, even if not until autumn!
In the meantime I must grab what rest I can, when I can. The lawnmower has stopped and I’ve hopefully got a few hours of relative peace and quiet until 3:30pm when the football-kicking starts… Bah humbug to hot weather and noise!
I didn’t see my doctor yesterday because a random mutation in the appointment system meant that what I was told on Monday no longer applied. But I did get an appointment for next Tuesday. At a time of day that suits me. So that’s good. As long as I don’t forget why I made the appointment, which I’m inclined to do once I feel better. And I was very glad not to have to get dressed and go out yesterday because I had a filthy migraine to top out my misery.
But the good news is that I woke up this morning with only an ignorable amount of pain and feeling more like my “normal” self. Which is not normal as in healthy, just “not feeling too shitty to function except at the most basic level”. So today’s challenge is to restart from when I was forced to pause on Monday morning and NOT to try to “catch up” on all the things I would have done had I not been in collapso mode (plus a few that I merely imagine I could have done if I hadn’t been so poorly).
Which is what “pause and restart” is about. One of the toughest lessons I’ve had to learn over the last few years is that I cannot “catch up”. And that trying to do so generally results in me achieving less rather than more. When I have to take a pause it’s not as simple as just picking up where I left off as soon as I feel better – some plans are date-dependent and it’s just not possible to arrive three days late for a party or other one-off event. It’s hard to shrug off such disappointments, but it has to be done – grieving over such things uses energy that can’t be spared. Getting angry about what you can’t change is like burning the money in your wallet because your mobile phone has been stolen.
Other things shift in priority. For example, food shopping may be delayed for several days, but not indefinitely. I try to always keep a good store cupboard and plenty of no-effort food in the freezer, but sooner or later shopping has to be done. Ditto anything to do with finances – I pay most bills by direct debit so I don’t get caught out by late payment charges if I’m not well enough to keep up with things, but I still have to make sure that there’s enough money in the account to make the payments. So what wasn’t urgent when I paused may well be top priority when I restart.
Which makes planning anything at all difficult. Basically, most of what I plan has to be provisional, depending on how I feel on the day. I used to get terribly anxious about fixed-date-and-time events whether they were enjoyable or not – I hate cancelling things at the last moment and being unreliable. But I’ve learnt, slowly and painfully, to just wait and see. Stressing about whether I’ll be able to go meet with friends or get blood tests done or see an exhibition before it ends actually increases the likelihood of a sleepless night and failure.
I’ve got loads more to say on this subject, but I need to pause now and rest, then get on with things that are probably more important than blogging about my life-management problems. Though I’m thinking that it might be worth writing down some of what I’ve learnt over the years about managing the challenges of chronic ill health in the hope of helping other people. Incurable Optimism strikes again and I add yet another possible project to my already immense list!
And where is that?
In bed, in pain and jolly pissed off.
As you may know, I have ME, which is a chronic, fluctuating condition with a myriad of symptoms. I’ve had it for at least 16 years and you’d think I’d have learnt by now that a spell of feeling a bit better than usual DOESN’T MEAN I’M CURED. But the incurable optimism (IO) that I can beat the illness just won’t lie down and die.
So what happened?
Last week I had a relatively good week – a couple of late nights, all goals achieved plus a few extras and I was feeling on more or less on top of the necessities. I even made some progress with things on my “when I have some spare energy” list. Which was very nice indeed.
Then the blasted IO kicked in. It was the monthly open day at the local community garden on Saturday and despite feeling somewhat weary, I went along and actually did some work! (I usually just visit, if I manage to get there at all). I knew I was pushing it a bit after a busy week, but IO whispered in my ear that I’d be OK, all those years of illness WERE all in my mind, I’m CURED now and I can do NORMAL things. Well, the sort of thing that feels normal when your life is, in fact, very abnormal. I did about 45mins weeding and half an hour’s chatting. Which is A LOT by my usual standards and after a restless night.
And it was great, I thoroughly enjoyed cutting back nettles that were encroaching the entrance path and carefully removing bindweed from a clump of cuckoo pint. Not to mention taking a few photos and talking to various other volunteers and visitors. It was wonderful to be outdoors digging in the dirt on a sunny May morning. Normality. How I crave normality.
I spent the afternoon sensibly resting, chatted to a friend on the phone, had supper and planned an early night. Then the neighbours lit a barbeque… When they’d finished eating they started burning wood from shrubs they’d cut down months ago and sat chatting until nearly midnight. Which I have no doubt was a lovely thing to do when you’ve been at working hard and it’s the first sunny weekend in weeks. I couldn’t begrudge them their fun. But it did mean that my bedroom was (even with the windows tight shut) too full of smoke and noise for me to contemplate going to bed until they did.
I try to go with the flow, stuff happens and it’s no good getting ratty about it (that just consumes more energy), so I accepted that Sunday would be a write-off and I stayed up surfing the net, watching 80s music videos and eating the contents of the fridge (overeating can compensate for fatigue in the short term). I enjoyed it and chose not to dwell on about the likely consequences of failing to rest when necessary. IO told me that as long as I was sensible and rested properly on Sunday I’d be fine – I had a great week, what was one more late night? Late nights are fun – they are normal. And I was only sitting on my arse clicking a mouse – not exactly strenuous activity.
I slept OK, had a restful Sunday and felt quite pleased with how well I’d coped with the unexpected event. Time was when I would have been beside myself with rage at having my routine disturbed by noisy neighbours, but I’ve gradually developed a Zen-like acceptance of shit I can’t control. IO was in full flow!
Am I boring you? Having ME is boring – you have to micro-manage every aspect of your life whilst trying not to become a neurotic over-anxious control freak.
So, back to the story. On Monday morning I felt a tad groggy, but I’d slept reasonably well and dear old IO was telling me that all would be well, I was CURED, doing MORE would be good for me, think positive, push those stupid limiting boundaries, it’s all in your mind, just do it. Etc.
It was a bright morning, but rain was forecast and the scruffy patch of grass near my back door needed strimming. The landlord’s gardener cuts the lawns, but he won’t touch the grass that grows through the crumbling concrete by the back door in case a stone flies up and breaks a window. So I have to do it. It’s not a big job, 20-30 minutes including preparation and clearing up, but it’s hard work for a weed like me. Still, IO was cheering me on, and I manage it OK a few times a year don’t I? Just a quick burst of exertion and it would be done before the rain came and not reproaching me as a job undone every time I looked out of the kitchen window.
Well I did do it. It took less than 30 minutes (I wasn’t really timing it, but, really half an hour max) and by the time I’d finished I was in such pain I could hardly move. Quite scary pain considering one of the key features of ME is that pain and fatigue are delayed by 24-48 hours after exertion. This pain in my joints and muscles had immediate and quite vicious onset. I immediately took some ibuprofen, but I could only move using will power until they kicked in. I spent most of the rest of the day lying on my bed apart from essential forays for drugs and food, and going to the loo.
In my case the delay from exertion to consequences is usually about 36 hours. This is my “normality” – if I overdo it (and that’s not difficult), it catches up with me a day and a half later. Ish. Up to a point I can plan my life around it, but it’s impossible to completely avoid overdoing it if you live alone and want to have a life that doesn’t totally revolve around your heath issues.
Events tend to overlap so I might be expecting a mild, but manageable, period of malaise from one event and then have to react to an unexpected event which compounds and prolongs the first malaise. Or I just overdo it a tiny bit several days running, then crash for no obvious reason. Or, and this is where I am now, I have a run of good days when I appear to get away with doing more than my usual baseline of activity. Which is when the IO that I’m cured at last tends to kick in…
The more overdone I am the longer it takes to recover, and sometimes one event runs into another and it all gets horribly tangled up. When that happens all I can do is accept that IO was wrong (again) and retreat to basics (rest, food and what personal hygiene I can manage – it’s not pretty!). What scared me this time round (enough to make me plan to see my GP asap) is the change in severity and onset of symptoms.
There’s no cure for ME and recovery for someone of my age and in my situation, whilst not impossible, is unlikely, so I don’t usually bother seeing my doctor except for routine tests and prescriptions. Apart from anything else it’s difficult to make an appointment. I’m lucky to be on the list of a good GP who is not unsympathetic to ME patients, but his working hours are of the “every third Monday, unless it’s a bank holiday, in which case it’s Tuesday, and Thursday afternoons, except when he’s on holiday or on a training course or it’s a full moon” variety. He’s duty doctor tomorrow so, if I can get through on the phone between 8:00 and 8:05am before all the days’ appointments are booked, I’ll see him tomorrow. If not, I can choose between seeing a random doctor or waiting for an indeterminate period of time (Dr is on holiday for the next two weeks).
Are you bored yet? I am. Well, maybe not bored, just a bit sick of dwelling on the dreary details of Life with ME, but I think I need to get this stuff out of my head. If you are still reading, thank you. Having ME is boring, mostly I prefer to concentrate on the non-ME aspects of my life, but today I’m stuck in bed and feel like telling it like it really is for a change. And this is still a sanitised version. I haven’t (yet) mentioned the fact that I’m well overdue for a bath and hairwash, but it was buy food or have a bath this morning and I chose food. And yes, I know you can have groceries delivered, but in my experience it’s less stressful overall to go and do my own shopping than to shop online. Home delivery is for when I’m past caring whether they bring the wrong kind of pears or the yoghurt is short-dated.
IO is still busy – it’s telling me that it’s OK for me to write this because I’m resting on my bed, it’s not physical exertion and I don’t really feel nauseous with fatigue (well, writing helps me ignore the nausea). And if I feel well enough to go to the doctors tomorrow (and if that sounds daft, fellow Spoonies will know what I mean), IO will probably try to convince me that I don’t really need to worry about the increasing bouts of increasingly unpleasant pain I’ve been experiencing lately and that I’d be better of using the time for something more interesting (or just having a bath and washing my hair). After all, it’s probably “just” a progression of the ME combined with aging, and if I’ve developed some other ailment, maybe I don’t really want to know yet. But I do need another prescription, which is not allowed on repeat – I have to see the doctor so he can confirm that I haven’t become a raving junkie as a result of taking 50 odd diazepam tablets a year. Sigh.
Still, that old IO keeps me going really – life would be bleak indeed without the hope that one day I will be completely well again, but as I’ve been writing it’s occurred to me that although I’m pretty good at managing the bad stuff I also need to learn to manage the IO. It’s heady stuff, optimism, and on balance I’m glad it’s incurable, but like chronic illness it needs to be tamed a bit, so it doesn’t lead me into bad places. It’s good to feel better, but I really, really need to learn to let it happen slowly, to enjoy the feeling of making progress without getting carried away and falling off the mountain. Again. Wish me luck, and thanks for reading, if you’ve got this far. Useful hints and tips for taming IO welcome in the comments section 🙂 .
After two consecutive nights when I’ve hardly slept a wink due to relentless restless leg syndrome, compounded by a flare up of irritable bowel syndrome last night, I am very aware today of having chronic fatigue syndrome. I feel utterly bloody awful. Why is is that the more you need to sleep the harder it is to do so?
I’m going to take some time out, but normal service will be resumed as soon as possible…
(And yes, I do take drugs for the RLS, but sometimes they make no difference at all).
On bad days when I have to pretty much stay in bed all day, listening to an audio book is my favourite low-energy-demand activity. If I fall asleep I can just rewind and start again, if I can’t sleep the story takes my mind off how shite I feel and transports me out of the four walls of my bedroom.
Today has been a bit short of a fully fledged “bad day”, but definitely a “rest as much as possible day” and I have been away in the Shetland Islands solving a mystery with Jimmy Perez, via Red Bones by Anne Cleeves on cassette tapes. It’s not as good as having a real life, but it makes the long hours of convalescence pass quicker.
Today the sun shone and the snow sparkled, but I was ME-weary and spent most of the day lying on my bed listening to an audio book and watching the icicles drip. The local weather forecast for tomorrow predicts rain and a big rise in temperature (-7 to +9 degrees Celsius), so the snow will vanish and normal December will resume.