So I’ve been thinking about starting a blog for a couple of years. I think about a lot of things; like doing the housework, cutting out processed sugar and what it would be like to go outside in the rain dressed only in socks. Most of the things I think about I never actually do but my husband has suggested a number of times that I just get on and write something. Maybe it will help someone, maybe it’ll let someone know there’s someone else in a similar situation, maybe it’ll be lost forever amongst all the other blogs in the world…who knows?
I called this blog a Silhouette of Me for a couple of reasons: the main one being that since developing ME, I feel like I’m just an outline of the person I used to be. I developed ME in June 2017 after a year of feeling unwell and exhausted. Before that I was always busy doing something – I started up children’s groups and knitting groups, I went running every morning before the children were awake, I did circuits 3 times a week, I cycled or walked every where and I thoroughly enjoyed life. Now I wake up and have to gauge whether I have enough oompf to teach the children or whether it’s going to be a “creative writing” and science film day. I used to think nothing of a 5 mile run, now most days I can’t even walk 500 yards down the street. Life seems to have lost a lot of its colour and flavour, it’s just not as much fun. Just like a silhouette is still recognisable, I still look like myself but on the inside, I feel like a shadow.
The other reason is that this blog is about me. Over time I hope to have a couple of tabs going, one about recovery, one about homeschooling, one about baking and maybe one just reviewing stuff I like or find useful. You won’t get the whole of me on this blog, but you’ll get a suggestion of who I am.
And finally, hopefully if I do my research and writing properly, you might get a silhouette of ME – a totally misunderstood and under-studied illness that an awful lot of doctors don’t even believe exists.
So that’s it. Join me if you like and let’s see where this takes us!
I read something somewhere that our brain can’t visualize a negative. “Don’t shout” is harder to process than “Speak quietly”. It makes sense to me, so following that, this post is about Being Imperfect.
Right now as I type, my ADHD child is “doing Maths” behind me. That’s to say, he’s singing at the top of his lungs, asking me a million questions (“How long is summer?” “Why does this Cheerio always land this way up when I drop it, when this Cheerio lands both ways?” “When will that tree outside have leaves on instead of just flowers?” “What makes those batteries charge?”) and doing a Level Up celebration on my bed everytime he answers one question.
I woke up this morning and almost immediately had to wash cat poo off one of our cats, go out and rearrange the rain cover on the chicken coop and take a phone call from the GP as well as coaxing my recalcitrant 12 year old to open her Grammar book and teach my 10 year old how to divide decimals by a 2-digit whole number (why-oh-why?????).
Life is BUSY.
And in all that busy-ness, there’s also the need to meditate, to work on eating clean, to scrape out some time to do something I love and get to bed on time.
It’s not easy.
A few years ago I was watching various recovery things on YouTube from people who’d been where I was and recovered and one particular video stuck with me. He repeated several times throughout that “You can’t cheat, you just can’t cheat”. The trouble with that is that when you’re bone-shatteringly exhausted and you crawl downstairs, grab a bowl and all you can manage is to pour in some Weetos, add milk and eat it spoonful by knackered spoonful, the whole time you’re so aware that you’re cheating. You have gluten in the cereal, plus sugar, plus dairy – all things you’re told to avoid if you’re trying to recover. So not only do you feel like every last speck of energy has been siphoned from you, you also feel guilty knowing that your body would appreciate a fresh smoothie far more.
But you know what? You CAN cheat. You CAN be imperfect. It’s ok to fail at doing everything we’re supposed to in order to recover. Yes, recovery might take you longer but on the other hand, not dealing with the guilt or the pressure to get it right might mean you recover quicker.
Right now my house is a mess (still/again, choose your favourite adverb) and I really could do with cleaning the bath. It’s easy to look at all the stuff I haven’t done or I still need to do and let that frustration eat away at me but I’m learning two things at the moment.
Work out what I HAVE to do and focus on that.
I know I need my hour’s meditation every morning. I need that like I need vegetables, clean water and sleep. I do that at 11am, every day. If we’re half-way through maths, I stop, go and have my hour, then we pick it up again afterwards. I try my best to book any appointments to leave that hour free, and if we’re out then ok, I try and fit it in later in the day. The only way I can make sure I get that meditation in is by having a set time that I do it, otherwise I don’t get it done.
I know I have to teach my children. That’s harder. I have one child who just does what he needs to, I have two that need constant chivvying so if I go and do some housework, I’ll come back to find neither of them have done a single thing. But, this home ed thing is what we have to do right now, so that’s something I make time for.
I have to get a decent night’s sleep. For me this means getting to bed before 10pm every night (I do best going to bed at 9.30pm but evenings just fly by and that doesn’t happen as often as I need it). It also means getting a bit of daylight on my eyeballs in the morning to try and regulate sleep hormones etc.
So those are the things I make sure to get squared away every day, other things can slide a bit if necessary or my husband can pick up the slack. I home cook everything, but if it’s a choice between having the energy to cook or teach, I’ll choose to teach and throw something quick together.
2. I focus on what I have done, rather than on what I haven’t done.
This is definitely a work in progress but learning to see what you’ve succeeded with is far better for your recovery than dwelling on what you haven’t managed. If I managed an hour’s walk yesterday, but today could only go out and sit and watch the chickens for a couple of minutes, that’s great! I love watching the chickens. If I had to rely on supermarket pre-prepared stir-fry vegetables because fibro made my joints so sore I couldn’t peel carrots or cut cabbage, that’s great! I made a stir-fry!
Little by little it gets easier to appreciate the things you’ve done during the day. Writing them down can help so every evening you take the time to notice what you can do instead of picking through what you can’t.
I have spent enough time stuck in bed with the curtains closed to never want to go back to that again. I have spent far too many months living life in 3 minute segments with rests in between to ever want to do it again. I also am imperfect. I struggle with self-motivation. But even with a bit of cheating, I am recovering.
Recovery is S-L-O-W but I also firmly believe that it’s possible.
Focus on what you need to do and notice what you have done.
(Sorry if this comes across as disjointed…hard to concentrate with your own mini Mario chirruping away in the background)
Ok, so the title clearly doesn’t apply to blog post-writing.
Pre-ME, I used to have a tiny kitchen business making iced biscuits for special occasions. Like these…
In order to get the different textures in the royal icing, I had to change the consistency; either to a watery flooding liquid, or a stiff toothpast-y one for the little lines and swirls. And this leads me somewhat into this blog post – consistency (not biscuits).
Ok, I admit, the biscuits are because I’m feeling a bit nostalgic about all the orders I made and the fun I had doing them.
I first got ill just over 4 years ago. For about 10 months I had no idea what was happening. I couldn’t work out why I couldn’t handle the circuits classes I loved, and then I couldn’t drive places without feeling shakey and nauseous, and then I couldn’t walk up the big hill to the cafe at the top, and then finally I couldn’t teach my children for a full day and still have the energy to cook a meal in the evening. I went to the GP who patronisingly told me that I’m tired because I’m home educating 3 young children and I just needed to suck it up. I went to another GP, and another, who basically all told me the same thing. So I turned to Dr Google who told me I had ME. It took about a year of feeling rubbish to get a suggestion from a medical professional and that was enough for me. I researched it, read books about it, followed blogs and joined Facebooks groups.
And then of course, the hard part: actually following the advice. By the time I had a tentative suggestion from my then GP that it could be ME, I was barely functioning. I would wake up, take an hour to get up, get dressed piece by piece, sitting on the bed and lying down again after each item of clothing. I would bump my way downstairs and sit on the the sofa for 15 mins, then I would get to the kitchen and pour myself a bowl of cereal, then rest again for 10 mins, eat a couple of spoonfuls and have to go and lie down again. That was how my day went, every day, eeking out my meagre energy into tiny little chunks of “activity” and huge chunks of rest/sleep. I could easily sleep for 20 hours a day.
But I realised that all the recovery stories had common threads and the main one was Be Consistent.
I decided the best course of action needed to be simple and broken down into little chunks. I focused on sleep first, because my sleep then was absolutely horrendous – to the point where I would start to panic around bed time because I just knew sleep was going to be scary and pointless. I had ocular migraines all the time that freaked me out, insomnia made sure that I would lie in bed for hours, joint pain, horrendous nightmares when I did sleep, and waking up “fizzing” with cortisol surges in the early hours.
Then I worked on mediation, and then pacing and finally diet. I’m going to be honest, the diet thing has taken me 4 years to crack down on. I’ve tried in the past but sticking to it when you’re exhausted is really hard. When all you can do is get downstairs, you don’t have the energy to make anything, you just eat biscuits…and not the royal icing kind.
Since September I have been gluten, sugar, caffeine, alcohol and dairy free and I’ve stuck with it.
I did more last week than I did in the whole of 2018.
And I also went to the shops twice, took the cat to the vet’s twice, popped out to the post office and did a nighttime walk almost every evening.
I’m not recovered. Not yet. But I’m recovering, and the better I feel, the more I want to stick with what I’m doing.
The diet changes are one small part of it, but an important one, as are the sleep changes, the mediation and the pacing. Every little action you choose makes recovery that much closer but you have to stick with it.
I’ve been meditating for just over 3 years now. I’ve been sticking to a 2130-2200 bedtime for 4 years, I’ve been planning my life and pacing for around 4 years and I’ve been mega-strict with my diet for around 3 months and I can FINALLY see the difference.
I actually choose to go and clean the chickens out because I can, I have the energy to. The walk we went on was so muddy, my boots and the children’s shoes were revolting but straight after we got back, I went out into the cold garden and I scrubbed them all clean because I could – and it felt good to have the energy to do it and not have to go straight back to bed.
I don’t know how linear this recovery will be from now on, for all I now the last 4 weeks have been amazing but I’ll topple back down for a bit. But I know I can get here, I love the feeling of having enough energy to leave the house every day and have spare for a shower. So I’ll stick with what I’m doing, and at some point I’ll get there.
My current plan:
1100 every day – 50 minutes meditation
15 minutes red light therapy
1300 every day- chill upstairs for an hour or so (it used to be naptime but I haven’t napped in months now)
7s as I call them (7 lunges on each side, 7 squats, 7 press ups, 7 tricep dips – I started with 2 a day and have built up sloooowwwwwllllyyy)
Bed by 2130
(There might be something else but my children have given me an hour and now have decided that’s all the peace I’m getting today!)
I truly, truly do. There’s a difference, I’ve noticed, between liking food and liking to eat. My husband likes to eat. He’ll spend all morning working, and then come downstairs ravenous and make himself some toast and thoroughly enjoy eating it. I, however, like food. I wake up thinking about what I’m going to breakfast on, what I’ll do for lunch and then what I’ll make for tea. I play around in my head with what tweaks I’ll make to something I’ve made a thousand times before. I think about food an awful lot.
Baking is also a hobby of mine. I enjoy the whole process from concept to finished product. My youngest brother commented about a month ago that he knew I was feeling better by how many pictures of bakes I was sending him :D.
A lot of what I’ve read about recovery is based around what you eat. Most people agree that you should cut out gluten, dairy, sugar, caffeine and alcohol as an absolute minimum. When I first got sick and was doing all the reading about what I had and how to fix it, I came across these suggestions again and again, and being a foodphile, I just couldn’t take that step. Caffeine and alcohol are no-brainers…no one wants to feel like they’re dying for the sake of a mug of coffee, but sugar? dairy? gluten? Are you INSANE?
Since I started my recovery, I switched to sourdough. It took a year after I got ill to make the move because I couldn’t get my head around the instructions. Sourdough is delicious – crusty, golden and just so tasty smothered in butter and marmalade. But this year I was making progress in my energy levels and I decided that May was the month to take my eating habits more seriously.
Up until then I was eating healthy meals but still fitting in gluten-free Nairns biscuits, or cakes that I made, milk on my cereal and lots of butter. I decided May was going to be gluten, dairy and processed sugar free. That meant that I was going to have to make a concerted effort NOT to eat what I bake.
It has paid off, I actually lost weight that month whereas up until now I’ve been maintaining with Intermittent Fasting. I’ve put on a lot since getting ill so maintaining excess weight isn’t ideal. I’ve also become a lot more creative with what I make, and I’ve broken free from sugar. I still bake for the family, that loaf up there is what I make for them, but I don’t eat it. I bake a different cake for afternoon tea every Sunday, but I don’t eat it, and I genuinely don’t feel hard done by.
I now have a gluten-free sourdough starter running alongside my other one, and it’s not as bad as I expected. I make oat waffles when I fancy them, buckwheat pancakes, amaranth porridge and I use honey or maple syrup when I just want something sweet. I have 90% dark chocolate and enjoy it. I settled on coconut milk, I already eat a lot of oats and I didn’t want oat milk on top of that, and the coconut tastes lovely with the buckwheat granola I make.
The big problem you might have noticed with all this is that I currently have the energy to make a lot of food from scratch. That isn’t always the case, and I’m aware that I might drop back down to “survival mode”, in which case, I hope my husband will be up for making the granola and I’ll just make do with what I can. In the meantime, I have more energy, less brain fog and no gut issues whatsoever. I’m sticking with this way of eating for the time being and we’ll see where it takes me.
I’ve written this blog post a thousand times over the last 5 months. I lie in bed at night and think “I must write another post” and then morning comes and I forget all about it. Or I’ll be meditating and think “after this I’ll get that next post written” and then forget again. I spend a lot of my life forgetting. Just this morning I forgot (again) that Granny was ringing at 11 to give my eldest an online piano lesson (oops).
Part of the problem is that I don’t know what to write about in this one. I keep thinking diet and food would be a great one, but then there’s more about acceptance, more about meditation, a whole post on Intermittent Fasting, lots to say about exercise and stages of recovering and rest … and so on and so forth.
Another part of the trouble is that I have more energy now so I’m doing things. That photo above is from a bike ride I went on last week. A Bike Ride! So exciting (and only 30 minutes on the flat but hey!).
Today I’m just writing and I’ll pick one thing and go for it. Bear with me as I ramble on.
This year I decided I would change one thing a month.
January I listened to a talk a day from the wonderful ANS rewire,
February I decided to do a 5 minute yoga sequence every morning,
March I worked on doing 50 minutes of meditation every day,
April I built in 20 minutes of yoga every evening,
May I finally got around to cutting out all dairy, gluten and processed sugar (that’s been an adventure!)
June I incorporated sit-ups/squats/lunges/tricep dips x5 once a day
This coming month I’m going to try and do 7 stretches every day because my back ACHES all the time and I know it’s because I spend most of my day like this:
Habits apparently take over 2 weeks to make and I have brain fog so y’know, I forget a lot. By just adding one thing a month it helps me not to get confused with what I’m doing and it also means that I have enough energy to do that one thing because I’m not adding tons in at once.
I’m not listening to the sessions from January at the moment but that was a good habit to get into, and the evening Chi gong I’ve been too tired for recently but I did enjoy them during that month.
I’m learning, slowly, that this recovery is a way of life. Some months I’m going to do great and feel amazing and other months will be slow and frustrating. If I eat an ice cream one day, that doesn’t blow my processed sugar free eating out the window, it’s okay! If I end up napping instead of meditating one day, that’s okay too.
The habits I want to keep up at the moment are the diet changes, the meditation and the exercise but I’m aware that my body might tell me otherwise. I’ll continue to try and take each day at face value and not feel duty-bound to do something on a day I don’t feel well enough.
(I feel I should apologise for the lack of images, t’internet won’t let me load any.)
I was never an anxious person. I had several traumatic events in my childhood, I’ve worked in stressful jobs, my husband is in the Armed Forces and has been deployed several times to war zones, I volunteered in the police for a few years – I wasn’t anxious during any of these times. Since getting ill however, my anxiety is through the roof. I’ve had panic attacks where I felt like I was dying, I have near-constant underlying anxiety and it’s not me, it’s not who I am.
But it’s here. And I have to learn to deal with it.
Symptoms of anxiety are scary:
Shortness of breath
Feelings of doom
Pins and needles in arms and legs
And plenty, plenty more. You can sometimes feel like there’s something really badly wrong with you, even though it’s “just” anxiety.
Sometimes though, you don’t have any physical symptoms but you have bad thoughts that go round and round in your head. “What if…?” All those what if’s that if you indulge in them, will scoop you up and carry you off.
So what can you do about anxiety?
I’ve googled a lot. A lot. Alot.
Talking about it can help, but not all of us can afford counselling. The waiting list for anything on the NHS is reallyreallyreally long, and even then, they might decide after your initial visit that you’re good to go.
So, as with most thing ME/CFS related, it’s up to you.
– Exercise is one thing. Obviously if you’re metabolically challenged (like me), this feels like a kick in the teeth. If I could exercise, I wouldn’t be ill and I wouldn’t have anxiety issues. There’s always yoga, tai chi or qi gong, exercise that can be done even if you can’t get out of bed. I currently use Movement for Modern Life app, as well as follow a lot of Mimi Kuo-Deemer’s videos on YouTube. She’s very gentle and soothing, perfect level for me at the moment! Here’s a link if you need it.
– Meditation is another although sometimes I find I’m waaaaaay too anxious to sit quietly. I feel jittery like I’m about to cry so sitting still isn’t going to work. Meditation is great when you’re not overly anxious but you want to maintain a level baseline.
– Get outside! Even when I’m having a really bad day, once I’ve spent the morning and most of the afternoon in bed, I can usually at least stand outside and enjoy a warm drink while listening to birds, feeling the wind on my face. Sometimes I can’t manage to stay out for the whole drink, but even 3 minutes is better than nothing I reckon.
– Eat lots of vegetables and fruits, and keep to a good sleep routine.
So that’s what I’ve found useful, I know this post is a bit all over the place – I actually started writing this in mid-January but I’m in a loooooong dip at the moment and I don’t have the spoons to do the basics, let alone blog posts.
In a weird way I’m actually sort of grateful that I’m struggling with this. Two of my children have really bad anxiety and I NEVER would have understood them without going through it myself.
Carrying on from the first post where I wrote about different things I’m trying in order to recover, I thought I’d tackle Meditation next.
Anyone who’s known me for any length of time will know that I’m NOT a meditating kind of person. I don’t Ommmmmmmmmmmmm. I don’t sit and watch candle flame for hours on end. I don’t do silence.
It turns out I kind of like meditating. It took me a long time to get used to it. I’d read plenty of books and listened to recovery stories where they all said to meditate. I had in my mind a monk sitting cross-legged in the snow balancing his hands on his knees and I reckoned I couldn’t stop talking long enough to manage 5 minutes! But I thought I should try. I started off with a short track that came as part of the Optimum Health Clinic package and then ended up using the Headspace app. I set a dedicated time every day when I would go upstairs, shut the door and give it a try. I home educate 3 children, one of whom has attention issues so I didn’t (and still don’t) always get a full clear 30 minutes, but setting a time meant I would make sure everything was done ready to go and sit.
Meditation can lower blood pressure, lower cortisol levels, increase memory and concentration, improve sleep and reduce anxiety. Why wouldn’t you try it?
For me personally, I’ve found over time that the constant chatter in my head just gets a chance to shush. I always have a running commentary in my head, either discussing what I’m doing, or listing what I need to do next, or worrying about stuff that doesn’t need to be worried about.
Meditating gives me the chance to just be. I’m not doing, just being. Of course I still run away with thoughts but then I catch myself, grin at my chattiness and get back to just being. It’s truly liberating.
I really recommend the Headspace app, or the Calm app that I’ve recently subscribed to. Calm has more sleep stories that my daughter loves so I’m running both at the moment.
There are plenty of youTube videos if you’d rather do free things than pay for the chance to sit quietly with your own breath – I’m not disciplined enough not to have someone encouraging me along the way.
My top tips:
Choose a time to do it, otherwise you won’t.
Pick somewhere warm and comfortable.
Don’t berate yourself for running away with your thoughts.
Do it every day.
So give it a try! Whether you’re ill or healthy, whether you think you can or you don’t reckon you know how, whether you’ve always looked at meditation as a bit weird, Try It! Goodness knows I was as sceptical as they come, and now look at me!
Christmas is a tricky time of year for energy-compromised people. I had my first crash in June and I was convinced I’d be fine for Christmas. Roll on 3 Christmases later, and I’m sure I’ll be fine by this summer…but still, another Christmas is over, and New Year beckons.
This year I was really lucky as my parents came to stay for the week. My dad cooked the roast dinner, my mum washed the dishes and did the housework and I napped, read books and generally flopped around the house feeling spoilt.
Interestingly enough, two of the four nights they were here we watched a film in the evening, and both of those nights I had a really bad sleep afterwards. The first time, I’d also had a tiny glass of mulled wine so I blamed that, but last night it happened again. I don’t usually watch much television, I wonder if the films were just too much stimulation before bed, even though they finished an hour before I turned my light off and snuggled down.
I thought I’d do a quick post with a “secondly” following on from the “firstly” I did about the sleep tracking. The second point is this:
Life works on a rhythm. As I’ve been tracking now for about 8-9 months, I can clearly see that my life works on a 4 week rhythm. The months I’ve been feeling better, there is less distinction between the peaks and troughs, the months I felt worse, the peaks are higher and the troughs are lower. (This graph shows my Heart Rate Variability overnight)
This is helpful so I can plan things around the better weeks, and chill out more on the down weeks. It’s also very obvious that menstruation plays a big part in my energy levels and sleep quality at the moment. I have to write off that week, and a large part of ovulation week as well, as a rest week rather than a doing week.
I think though, that this is really useful to see. We all know we have rhythm to our lives, circadian, menstrual, winter/summer etc and seeing it all graphed out just brings home that our bodies don’t need the same things every single day. I’m learning to be more aware of what my body is telling me, and giving it what it needs. Nurturing my body rather than just co-existing with it will hopefully lead to a more aware and fulfilling life.
I grew up abroad, in a place much warmer than the UK, where my dad grew pineapples in the back garden. We could buy pineapples all year round (unlike apples and oranges that were ridiculously seasonal). Sometimes you’d bite into a piece of pineapple and it was as sweet as Haribo. Other times, it would be so sour it felt like your mouth was turning inside out and your eyeballs were getting sucked back into your skull. The thing is, because these fruity beauties were ripened under a hot tropical sun, they all looked golden yellow-orange; you couldn’t tell how sweet they were going to be until you actually bit into it. Even now, nearly 20 years after I moved back to the UK, I only have to think about pineapple and my mouth starts watering at the thought of the horrendous, eye-watering sourness.
“But how on earth is this relevant to anything other than old lady reminisces?” (That was our front patch, complete with duck, papaya tree and yet another puppy) I hear you cry. Well, I do actually salivate just at thinking about pineapples (doing it right now you’ll be pleased to hear), and it gets worse if I pick a pineapple up, and even worse as I cut one, smell it and am just about to bite into it.
This is the power of my mind. I think about a pineapple and my mouth starts juicing up, ready to swallow down the horror should it turn out to be a lime, not a Haribo. I don’t even have to see one, or touch it, or smell it, just the memory makes my mouth go for it.
So my brain makes my body react. My thoughts alone can give my body a symptom.
Ha! I bet you can see where I’m going with this.
I recently started yet another recovery attempt, this time with ANS Rewire by Dan Neuffer ( https://ansrewire.com/ ) . He goes into detail on the mind-body connection. I have no problem with this at all. It’s not all in my head as in I’m imagining it, but it IS a neurological dysfunction. My symptoms are real, scary, painful and affect every aspect of my life but my brain has a lot to do with it.
When people ask me how I am, if I’m feeling a bit shaky and I start telling them about it, I feel worse. That’s not to say that my joints weren’t burning already, but talking about it, makes them hurt worse. While I’m typing this, my neck pain is getting worse simply because I’m thinking about it.
So I’m trying to harness the power of the pineapple and use my brain power for me, instead of against me. Trying to stop the negative, symptom-checking and assessing thoughts and concentrating on making good choices for health is hard work. I’ve realised I’m constantly scanning for problems but I’m hoping with practice, this will lessen off.
I bought a sleep tracker in April. It wasn’t cheap, in fact it cost a lot more than I ever thought I would spend on something like this, but it’s made a real difference. Every night I tuck myself up ready to go, and every morning it gives me a readiness score out of 100. Now…this is designed for healthy people so 97…what?? Amazing! I’ll go horseriding, then walk to town, paint the spare room and mow the lawn before lunch – or not. (This was today and I didn’t feel that great to be honest, I’m in a long lasting dip at the moment which is why I’m not posting often).
So if the readiness score isn’t massively accurate, what’s the point?
Firstly, this 👆 . From tracking sleep every night, I’ve noticed that a lot, if not all of my deep (restorative) sleep is before midnight. I usually get 20 minutes or so after midnight, but most is before. If I get to sleep too late, I get no deep sleep and wake up feeling really ill.
This was the night before, I felt rubbish and couldn’t get to sleep for ages. My heart was beating like a crazy thing, I felt dizzy, nauseous, my joints were burning, I had pins and needles in my feet and then the panic started up, so all in all it was a bit hokey til just after midnight. The tracker shows 15 minutes of deep sleep. Ideally you want over an hour and a half a night. This is something that I’ve seen over and over again, if I don’t get to sleep early enough, my sleep suffers and then I feel ill the day afterwards.
It certainly helps to see where the different stages of sleep lie each night and tailor my sleep schedule as best I can to fit in with it.
I’ll write the “secondly” bit later, not a great day today! Sorry about the size of the images, I can’t shrink them on the ipad and I’m too tired to go and sit at the PC.
I had planned to write about meditation next. But, last week I felt ok – tired, but not ill or weak or anything sinister. On Wednesday night I finally went to join the local choir that I’d been thinking of for a while. I sang, (loudly) for 2 hours, in a small-ish room filled with people I don’t know under artificial light – and it ended at 9pm, right on my bedtime, and then of course I chatted for a while and didn’t get home til after 9.30pm.
I fully expected to spend Thursday in bed paying for that fun, but I didn’t! I woke up fine, went to the post office and decided to drop into the local coffee morning and met up with someone I sort of know who I haven’t seen for over 2 years, and we chatted for an hour or so.
So I expected to crash on Friday…but I didn’t, my daughter was keen to go to the thrift shop so we walked there, spent an hour talking to the lonely lady there, and then walked home (carrying bargains obviously!).
Well anyway, on Saturday morning I still was ready to crash but I didn’t, so we went to IKEA (what?!?) and bought a load of furniture, then I spent the afternoon building it.
(We bought more than just a peg board but photos of tables and shelves are boring)
And on Sunday (you guessed it) I felt ok still, so I baked a birthday cake, 50 advent cookies, a brioche and a sourdough.
So I crashed on Monday.
And the cake is hokey cos I decorated it whilst feeling horrendous.
I told you I sucked at pacing.
Anyway, so in the spirit of “not what have I done, but what did I learn”:
– I didn’t nap, on Thursday, Friday, Saturday or Sunday. You know when I said that naps are non-negotiable? It’s true, they’re really really not debatable – nap on peeps.
– Singing loudly in a group made me feel amazing. I might do it again tonight if I can find the energy. I might even make some friends.
– Maybe I should stick to doing things for 2 days, then resting. I didn’t have to go to the thrift shop, I could have put it off for a couple of weeks.
– IKEA is not for people with ME/CFS at all, ever. I survived it but I didn’t enjoy it like I used to. It’s loud, bright, busy and full of people.
So there we go, 4 lessons to take away, probably won’t have learnt them cos it turns out I’m a slow learner…
In my defence, we moved at the beginning of October, it hit me harder than I thought it would. I’ve spent most of October and November in bed or weebling around the house. This was my first week where I felt like I could actually DO stuff so I did, and then I paid for it (I haven’t had the energy to decorate the advent cookies and we’re going away to see family for the next 2 days so they won’t be ready for advent…)