You may have noticed a drop-off in blog posting round here recently…. Well, I’ve not been too well. Nothing serious or life threatening, just notably sub-par. I don’t talk about it much here, but I have ME (also known as chronic fatigue syndrome, or CFS/ME). It waxes; it wanes, and generally I think I’m doing pretty well.
At the beginning of this month, though, I had my first occupational therapist appointment at a specialist CFS/ME clinic. It was eye opening. I’m on three scheduled rests per day (and you would be amazed at the things that do not count as resting. Not Ravelry, not knitting, not television, not reading, not audiobooks!), and I’m slowly realising that things that have just faded into the background – things I have considered ‘normal’ for years – are actually symptoms. Anyway, I don’t intend to blog about this here, (if you are interested, I have started a new blog* to chronicle my journey back to normal functioning), but suffice it to say that I have not been keeping up with the online world. Shop listings, blog posting, Ravelry, blog reading and commenting – all have fallen by the wayside. And it’s November! When a whole bunch of you nutters join in with NaNoBloPoMo, and try to post daily!! Talk about bad timing. My RSS reader currently shows over 350 unread posts.
Anyway, I’ve decided that there is no point in trying to catch up with everything whilst the whole world rattles onwards without me. So I will be working my way through the backlogs, whilst simultaneously attempting to keep up with stuff coming in from now onwards.
In related news, I realised that Saturday came and went without me saying anything more about the current Saturday Giveaway competition. Oh, dear. That is very much ‘my bad’. Well, I’ve decided that I will extend the competition until *this* Saturday, so get on over there, read about the Farm Animal Sanctuary, and see if you can help them out. Remember- you don’t actually need to spend anything to enter the competition: Spreading the word on Twitter, or Facebook, or your blog counts, too! (but don’t forget to come back here and let me know, so I can enter you in the draw!)
Well, enough rambling – I will be back soon (I sincerely hope!) to update you on my recent adventures.
I keep thinking that I’ve beaten my CFS (chronic fatigue syndrome, post-viral chronic fatigue – call it what you will), or at least that I’ve gotten it under control, but every so often, up it pops and bites me on the bum.
Let’s be clear: I am so, so, so much better than I was. But bad days, and weeks still happen, and I’m not 100% of my former capacity. And I don’t know if I ever will be again.
I’m deep in another fatigue-dip, the first since, oohh, October last year. I’ve been here for a week. Last Monday, I felt, well, a bit crappy. On Tuesday, I woke up and felt as if I’d run into a brick wall. Actually, I’m sure there are better descriptions. Let’s see. Imagine you wake up, and a switch has been flipped. All of a sudden:
- You are moving through thick treacle, so it takes twice as long as usual to get ready for the day;
- Simple mental tasks, such as adding two numbers, are impossible;
- Your arms feel weak and heavy; even winding yarn feels like far too much work;
- You feel, inexplicably, as if your centre of awareness has been moved to the back of your own skull, so you are looking out down a long, poorly lit tunnel;
- You are so clumsy! You are liable to smack your arm on the doorframe as you walk through, or stab your hand on the contents of the dishwasher as you put something else in it;
- Walking up the stairs makes you breathless – yet normally, you can run a mile or so;
I could go on, but I can’t think straight. I can’t remember the other things I could list. I have brain fog.
There’s an irony in the fact that it’s only as I get generally better that I realise how ill I have been, and how genuinely crappy this makes me feel. I used to feel like this every single day, and yet I vaguely felt that I should be able to put on my big-girl panties, and just deal with it.
Part of the problem, I think, is that chronic fatigue is insidious in onset, and because most symptoms are are mind-issues rather than body-issues. It’s hard to recognise that the symptoms really are present and to give them their due. And there is the ‘psychological fatigue trap’; I have no pain, just fatigue (and there we go. Just fatigue.) Everyone’s tired, right? Why can’t I just have an extra cup of coffee and deal with it? How tired could I possibly be, anyway? Feeling tired isn’t feeling ill, surely?
So your symptoms are difficult even to discuss. On top of the actual symptoms, you have secondary, additional symptoms, like shame. Would I rather have a chronic pain condition? Hell no! I am so glad that I am no more in pain than the average man on the street – but sometimes, I think it would make things easier to explain, even to myself. I wouldn’t have to apologise for only feeling tired, or rate my illness as less bad than someone else’s, just because everyone gets tired.
My recovery from the worst of the chronic fatigue has been like climbing out from the centre of an onion. Each time I escape a layer, I look back and see the difference, and am amazed that that’s how it was. And think, “But I’m better now”. Except I haven’t been, really, not yet – and a few months, or a year, later, I shed another layer. At no point have I realised how not-right I’ve been; I only see it when I’m past it.
For years, I have been frustrated with the very typical CFS ‘survivor’ quote, which boils down to, “The key to getting better was to accept that I would never be able to do as much again”. In my mind, that translates as, “I am not better, but I am as good as I’m going to get”. That takes a lot of accepting, and I’m definitely not there yet.
But there are parallels between living within your health means, and living within your financial means, in that accepting today’s limitation usually means that tomorrow will be sweeter. There is no point in borrowing against your future energy (or money), because if you do, you will lose a lot of it to the interest repayments.
I’ll continue to get better, and I’ll continue to have bad times. But, whilst respecting my limits (Ha! Or trying to), I need to stop letting the fatigue stand between me and the best bits of my life. When I’m tired, I get withdrawn. I stop posting here, stop socialising online or in person. And it doesn’t help.
Also, if I can document the course of this illness, maybe – just maybe – someone else can find some hope, or comfort, or guidance in my ramblings. And maybe I can encourage a tiny bit more openness about these weird conditions, that no-one can really understand, or cure, and which even the sufferers find it difficult to take seriously.
Again – just a statement of the way things are… I don’t intend to change all (or even most) of these things, but I do want to have a record of how things are now, for comparison.
- This is the first year that my weight has gone steadily upwards since the worst of the chronic fatigue; that needs to turn around. I’m not enough of an exhibitionist to state my weight in public, but let’s state that it has been noted. I’m actually right in the middle of the healthy weight range for my height, but since I currently carry little muscle and am of a light-boned build, that means my body fat percentage is probably higher than it should be.
- Other than (sporadic) running, dog walking is my main exercise year round, supplemented by gardening. I’m still stuck around the week 4-5 area of the couch to 5k programme; if I’m lucky, I run two or three times per week, but I’ve not done much at all since mid November. I’m not practising Pilates or Yoga on a regular basis, and nor am I doing any weight training. My bike hasn’t moved in months. I’m pretty darned inflexible right now, particularly in my hips and upper back.
- I’m taking a complicated set of supplements designed to combat the worst of the chronic fatigue, and have finally got into a steady habit with them. They definitely help, and I have no intention of messing with them right now.
- As well as the supplements, the quality of the food I eat is generally good. I feel I would benefit from increasing my vegetable and whole grain intake. I succumb too often to the ‘tuck box’ at work, eating cakes/chocolate around three times a week, I estimate. I’d rather that was two to three times per month, though I don’t plan to record details. I’m also on the near-permanent hunt for a healthy, savoury snack which stores well. A tricky ask, I know.
- Fatigue-wise, I haven’t had any major setbacks in the last three months, and only one moderate one. My major concern is that I’m about at capacity with my energy expenditure, and that attempting to boost my fitness by doing more exercise, or losing weight at any but the slowest rate, will push me back into another bad place. Add in Textiles In Focus in February, and I’ve got a narrow tightrope to walk for a while.
Now, her post isn't really about getting up earlier. It's about implementing incremental change. It's about being kind to yourself, making things easier, not expecting huge changes to happen (literally) overnight. And I love it, and agree with it, I really do. Incremental change is about the only way I can achieve anything, which is why my lazy-ass sourdough method is working so well, and why this shouldn't be read as an attack on the wonderful Havi (or on Selma, the fabulous duck). I am not throwing shoes. But this has reminded me of a thought which has come round and round again recently, and which I think bears stating.
[disclaimer: I have Chronic Fatigue Syndrome, which is fairly well
managed by balancing all my activities over the week. It's possible that
some folks could happily trim their sleep in the week and catch up at
the weekend. That wouldn't work for me.]
So. Getting up earlier to do more is a bit of a sore point for me. If you want to get up two hours earlier, what else is going to have to give? Most people I know have over-busy lives. They have jobs, families, homes, hobbies. Most people are a little bit tired all the time, yet we still want to fit more in.
There is an assumption in this world that getting up earlier is Virtuous. It is somehow Healthy and Productive and Laudable. Going to bed late, though, is regarded as Foolish. The Lazy, Feckless and Irresponsible stay up till two in the morning. But, whenever you hit the sack, whenever the alarm clock goes off, there are still only 24 hours in the day, and you are still going to need to sleep for around 8 of them (six if you're lucky). If you find getting up is too hard, it's probably not because you're lazy, it's more likely because you're tired. And needing sleep is not a moral failing.
What would your reaction be if a friend said, "I'm going to start going to bed two hours later so that I can get more done"?
In short, getting up two hours earlier doesn't add two hours into the day. It probably means you're going to need to go to bed two hours earlier as well. Sure, if you don't use your time well in the evenings, but are productive in the mornings, then it might well help you to change your hours, but why not just look at the way you use your time? It might be easier.
OK, my alphabet challenge isn't goign to be finished in a month. Surpriiise!
I've started a few P-posts, about post offices, parcels, postage, packaging (as in, excessive), but they were all snarky and snide and not really 'me', so I binned 'em.
I'd got stuck on 'P', so I was pouty and petulant and peeved. And I've spent the last few days feeling slightly panicky – though it's nothing to do with silly alphabet challenges (or even Pyjamas! Now, that would have been a good P…).
I'm a bit …ill-ish. I really don't want to sound all dramatic, but I can't quite breathe properly. My lungs are achey and feel 'clenched', somehow, and it seems there isn't quite as much oxygen in the air as there should be. It feels like the symptoms of acute, panicky anxiety, and so in a fit of extreme conditioning, my emotions are following suit. So I've been wandering around feeling anxious and sad and panicky, all because my lungs have led the way.
I have a doctor's appointment in about an hour, and I'm suspecting some sort of chest infection. Pneumonia would fit the P-theme nicely, but the universe doesn't have to play along with quite such enthusiasm really.
In the meantime, I'm going to continue with the alphabet, but more slowly. I was failing to keep up with the comments anyway.
Oh – and the person who found this blog by Googling "Can you do 4 shaft patterns on an 8 shaft loom?" – yes. Yes, you certainly can!
Today, I started it again. Back at week 1. And it felt good1.
In fact, reading last year's post has made me realise exactly how far I've come in a year. I'm about 4 kilos lighter than I was then. I'm certainly fitter; the workout today was strenuous, but it didn't come close to painful, which it certainly was 51 weeks ago. All that digging in the garden must have paid off.
Anyway, I ran. I liked it. And, with any luck, I'll manage to build up a habit that will see me finish the programme and keep me exercising through the winter, apart from during the really slippery bits.
1 Also fluffy. The towel I had at work was a total disaster. It's a freebie that came with some dog food
(OK, no, I'm not surprised it's cr@p!) and as well as having that
weirdly slick 'new towel' feel that doesn't actually dry you at all, it
shed green fuzzies all over me, all over the shower cubicle and all
over everywhere. I had to
use my (similarly green) t-shirt to finish off with, and I'm sure that
there is still green fuzz stuck to me in places I cannot see.
This *is* getting better, I promise. It's just taking its time. This brace is doing a much better job, but is much more irritating. I need to wear a glove under it, to protect my skin.
Also, I cannot knit, spin, crochet, type with any speed or accuracy, brush my teeth normally, hold a knife or write with a pen.
It is driving me nucking futz. But it will get better.
That sucks! I need to rest it, but cannot be supplied with a splinted brace until Friday at least, and cannot take aspirin-based anti-inflammatories.
So I'm typing slowly, one-handed, and knitting, spinning and crochet are completely verboten for now. Gah!
Health and fitness… Not a subject of this blog, really. At least, not lately. But I think about it a lot.
I think I used to be pretty fit. I cycled literally everywhere, including my work commute, danced regularly, went to the gym three days a week. Three years ago I was training for the London to Cambridge bike ride. I got shingles, and never made it to the race itself. In fact, I've hardly cycled since.
The shingles segue'd smoothly into Chronic Fatigue Syndrome, which wasn't diagnosed for a full 18 months. I stopped dancing, stopped cycling, stopped going to the gym – pretty much stopped exercising. I was incapable of spending a full day at work, and I got very, very depressed.
Fairly unsurprisingly, my weight went up significantly – from around 68 kg (150 lb for you who are still fighting the metric system) to something over 83 kg (183 lb). It's still not really come down again; I'm hovering somewhere around 77 – 78 kg (c. 171 lb).
I still have fatigue issues – starting my new job has been very, very hard indeed. But anyone can make excuses, right? I've done my time reading inspirational websites, and it's about time I started making my own changes.
Lilith has inspired me. So has PastaQueen. Neither of them know, though, because I'm too shy to comment (some blogger, eh?). For anyone that doesn't know, Lilith has just completed a 5k run – following CoolRunning's Couch to 5k programme. PastaQueen has lost more weight than my TOTAL BODY WEIGHT HAS EVER BEEN. She has lost a whole 'me' at my heaviest, and then some. I cannot even begin to imagine the fortitude it must have taken to take that first step on what she knew – right at the beginning – was going to be a really, REALLY long journey. Oh, and she's just completed a half marathon1.
So yesterday, I took the plunge. I tried to talk myself out of it so many times. My heart rate monitor has no battery – it would be a shame to start training with no record, wouldn't it? The ladies' shower is on a different floor at work – am I really allowed to use it? Oh – maybe I should just walk to the shops instead, because I've just realised, I have no tampons at work – shouldn't I maybe buy some, just in case?
OK, we're getting ridiculous now. But those are *all* 'reasons' I tried to use not to start, not to take *my* first step. Because I want to be able to run 5k, too. (Actually, I want to complete a triathlon one day, but let's start small, OK? I've always been a good swimmer and a competent cyclist, but even at school, running made me want to throw up. I also want to lose the last of that illness-weight, which is why I'm drinking a beer right now…)
So. Couch to 5k. First workout: jog 60 seconds, walk 90 seconds. Repeat for 20 minutes. Sounds like I should be able to do it, right?
Except I thought the first jog was going to kill me. The second and third were better, especially after I realised that the total set was going to be eight 'reps' total, not thirteen (don't ask). The fourth was *hideous*. I really had to fight even to keep walking after it; I had a truly evil stitch. So I slowed for the fifth, but kept the 'rhythm' going. Then, the sixth was done, and I was on the next to last! And I DID it! I totally managed to finish the workout!
Today, my biceps are sore. Huh?? Tomorrow I get to do it again. Um, good?
1This woman is really, really awesome. Seriously. I am now a total fan-girl, and if I don't win a copy of her book by entering her competition, I will most definitely buy one. Once I found her website, I *had* to finish reading the *entire* archive. I did not do any knitting last night because I know me and these addictions, and if I didn't get through the archive, I'd find myself secretly reading it at work today. Like I did on Friday. You can witness her amazing transformation (twice!) here:
..and enter her contest for yourself, too.
OK, walking is proving an interesting challenge today. This is because I spent almost *all* Saturday doing Scottish dancing (for the first time in nearly 10 years, I'd guess). Scottish dancing is very on-the-toes – your heels don't touch down much when you're moving, which is tough on the calves.
I have never, ever in my life prior to this weekend made my calves so sore with exercise that it takes two attempts to get out of bed because I can't actually stand up. Two mornings in a row. And I didn't even dance yesterday. I'm so glad I don't sleep on the top of a bunk bed any more.
Now, it's fairly humbling to know that I *can* actually do this to myself – I prefer to exist in the state of happy delusionment that says I can take as much of any kind of dancing as you can throw at me, and bounce right back. Admittedly, I was extra-tired to start with this Saturday due to the recent hectic decorating schedule. And I don't have quite the calves of steel that I had when I was doing ballet n times a week, but even so… But the truly gobsmacking moment didn't come till I was trying to explain to my boss (who finds my chorus of "Ow! Ow! Ow!" every time I stand up truly hilarious) what I'd done to myself. His response?? "You have absolutely no respect for your body, you know."
Who, me?!?? I am almost the most body-respecty person I know! It has never occurred to me that making my calves (or other muscles) ridiculously stiff with unaccustomed exercise might be considered 'lack of respect for my body'. They're only stiff! Not torn or sprained or anything!! It's a normal after effect of exercise! I take such good care of my body I simply expect it to keep up with me, goshdarnit! Hmmmph. No respect, huh.
Anyway, clearly I need to dance *more* to keep myself in trim for this kind of thing. And thankyou *very* much, Ruth, for dragging me along. It was a great weekend, and lovely to see you!