IKEA and “doing stuff”

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…)

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Pacing

Can we talk about pacing?

 

One thing I hear often from various medical people is: pace yourself.

Ok, great. When I ask what this looks like in actuality, it’s something along the lines of working out what your body can handle and doing less than that repeatedly.

I home educate 3 primary age children, 2 of whom come with added extras. There is no possible way I can work out a base line to work from. So how on earth can I pace in an environment that is in no way stable?

I’ve read a few recovery stories and I’m often pretty jealous of the way the writer establishes a baseline and refuses to go over it. You know, the kind where they can walk for 10 mins a day and they stick with that until they add another minute, and then they hold there until they can add another etc. That’s great, and I’m sure it works really well but for a lot of us, that’s not an option.

I have, on occasion, had the luxury of finding out where my baseline is – the level of activity where I feel almost well – and it’s depressingly low. I spent one beautiful birthday weekend snuggled up on the sofa with a pile of books while my husband brought me cups of tea at regular intervals. I’d been ill for several weeks and he took a couple of days off work just to see to the kiddies and leave me be. By the time Monday came round, I felt amazing! Still ill, but better than I had been for months and months.

When I took stock of that baseline though, I hadn’t cooked, hadn’t taught the molies, hadn’t done any housework, hadn’t read the news, hadn’t phoned anyone, hadn’t left the house except to sit in the garden and drink the first cuppa of the day. That is a fantastical baseline…totally unworkable.

I’ve also heard different advice: plan out your day, then cut the list in half. Or only do 50% of what you think you can. Therein lies a different sort of problem…planning. I’m not a planner.

This is the school work section of our house…

This is the Menu plan that hasn’t been changed in 5 weeks.

So if you don’t plan, how can you work out what’s half of the amount you think yourself capable of? And if your life isn’t predictable, how can you plan?

I’m rubbish at this – better than I was, but still rubbish. I quite often think I’m ok, we all set off to town and within 5 minutes of parking up, I’m telling my husband we need to go home. Or, I’m ok, I walk for ages and then suddenly hit the wall and pay for it for the next day or 6.

My few tips for what they’re worth are these:

• If you go out somewhere, or do something you don’t usually do, rest As Soon As You Get Home.
• While you’re doing that activity, stop regularly and rest. So sit down after chopping your veg for tea, or park your buns on a bench while you’re out in town
• Don’t plan one activity after another. If you’ve had a busy day, take the next one off (if you can)
• Choose a couple of days a week as Nothing days, where you don’t cook/clean/go out, you just rest
• Also, it’s ok to feed your children cereal twice a day. You don’t have to home cook every meal and make sure they’re getting 7+ vegetables every single day.
• Rest, several times a day even when you don’t feel tired (this is really important!).
• Change your challenges – if you’re doing brain work, switch to something more body oriented for a while.

 

Having read a bit about it, I’m trying to move away from my single 2-hour nap in the afternoon, and work on having maybe 2 rest breaks in the morning and 2 in the afternoon and see where that takes me.

 

Like I said, I’m still learning but there are a couple of good websites I’ve read that go into pacing in depth and explain it well:

http://www.cfsselfhelp.org/library/how-i-use-pacing-manage-cfs

http://www.cfsselfhelp.org/library/9-pacing-strategies

 

This is a really good website too

http://recoveryfromcfs.org/ch06/

 

And finally, this is what I’m trying to do more of at the moment; several small rests rather than one longer nap.

https://laurachamberlain.co.uk/2016/07/08/the-benefits-of-rest-in-mecfs/  (I don’t know why this isn’t a link and I’m not using spoons working out how to change it, sorry! 😀 )

Sleep

Sleep…(precious, elusive, rarely satisfying precious precious sleep)

Photo by Kristin Vogt on Pexels.com

This post is all about sleep, did you catch the clues in the title?

No seriously, sleep is precious.

I never knew how precious until I had babies (hah!). And even then, with a just turned 3 year old, an 18 month old and a newborn…even then…I didn’t really know exhaustion. I thought I did, but nope – turns out it actually is possible to be more tired.

When I first got ill, I was tired-fatigued-exhausted all the time. Despite the English language having more words than any other in the world, there’s still a lack of words in the “jaw-achingly-tired-right-through-to-the-bones” exhaustion category. And to add insult to injury, I couldn’t sleep hardly at all (I know I started a sentence with “and”…sorry).

So what is it with ME that leaves you so tired you can’t even remember your own name, and yet at the same time causes you to lie in bed awake and utterly shattered? Not fun. Not cool.

It was through the Optimum Health Clinic that I first heard it described as “tired but wired” and I began to understand a bit about calming the nervous system down from its constant state of high alert. Although my body was knackered, my brain wasn’t trusting enough to relax enough to sleep.  I started doing a bit of meditation (really just lying in bed listening to someone talking) and read a bucket-load of information about how to sleep better.

Turns out all the information is pretty much the same (unless they’re trying to sell you something), and it’s all stuff we know already.

Ready?

• Keep your bedroom just for sleeping
• Make your bedroom as dark as possible
• Turn ALL screens off at least an hour before bedtime
• Stick to the same bedtime as much as possible
• Get daylight on your face, especially in the morning
• Make a bedtime routine and stick to it
• No caffeine (if you’re lucky enough to tolerate it) after 12
• No emotive input in the evening

This is my sleeping space (I promised you honest, no Insta-worthy bedrooms here!)

There are a couple of things that made a huge difference to me: sticking to a lights-out at 21:30, and turning off screens at 20:30. If I glue myself to that, I sleep a lot better. I also read the news in the morning and refuse to discuss news or politics or anything heavy after dark, no matter how much the other person wants to.

I’ve been bedbound in the past and I realise that when your bed is your whole life, you can’t just keep it for sleeping. In that case, maybe you could try and work out a simple bedtime routine, even if it’s just doing some slow stretches, deep breathing and then sleep.

I really recommend Dr Rangan Chatterjee’s book – The 4 Pillar Plan. It’s a very simple, easy read and I found it useful. One of the 4 pillars he writes about is sleep.

In case you’re interested, this is my bedtime routine:

2100. screens off (this has slid from 20.30 as the children haven’t been sleeping so well and everything’s a bit later…). Most days this doesn’t matter as I’m not a huge TV watcher anyway.

-clean teeth/wash

-jammies on

-simple Tai Chi sequence (I’m no expert, just one I found online that’s very gentle)

-read 20 mins

-set clock to sunset mode and lights out by 22.00

It doesn’t have to be complicated, just be consistent with it and try different things if you’re not getting into bed in the right frame of mind to sleep!

 

Things I’ve done so far

(Catchy title, I know…)

 

When I first went to the doctor’s about the ongoing, never-ending, soul-sucking exhaustion, I was told that everyone feels like this sometimes (and besides, you’re home educating 3 children so of course you’re tired). As any of you who have this will know, there’s a WHOLE lot of difference between being exhausted, and having ME. Sometimes when my husband asks how I am, I’ll say “I’m just tired, not ill-tired” – there’s a difference.

Photo by Edoardo Tommasini on Pexels.com

Having been generally fobbed off by every doctor I went to, I started consulting Dr Google and decided that all the symptoms probably suggested I had CFS/ME. I then went to yet another doctor I hadn’t seen before and asked if that could be a possibility. She looked at the blood tests I’d had and agreed that yes, possibly it was that, handed me a print-off from patient.co.uk and told me to come back if it got worse. Well…it had taken me all week to save up the oompf to get there in the first place, and I had to lie down in the waiting room, totter into her room and lie down while she did her thing – how much worse did it need to get to warrant a return visit?

But armed with a potential diagnosis, I started reading and researching. A family member had recovered from CFS in the past and suggested I try the Optimum Health Clinic in London. I lived in West Wales at the time and couldn’t go downstairs without needing a nap so London may as well have been the far side of Saturn. They run a phone service though so I had an intro chat with them and booked into both the psychological and the nutrition services.

They’re not cheap by any stretch but that was the start of something for me. For the first time, I understood that the psychological side doesn’t mean you’re going bonkers, or that you’re weak-minded. In order to recover, or at the very least, regain a bit of energy, you need to calm your nervous system down. I could only manage three phone sessions and then I couldn’t fund it any more but they started me along the road and for that I’m grateful.

 

Since then, I have factored the following into my life:

• Naps – these are non-negotiable, even if I’m not tired I have a rest at 1pm.
• Meditation – this is good for calming the nervous system.
• Pacing – argh, horrible thing but annoyingly necessary.
• Intermittent Fasting – only a very weak 16:8 but that’s all my body can manage.
• Gluten-free – this is intermittent too but only because I love bread, I feel much better off gluten.
• Sleep hygiene – this is HUGE, tidying up my sleep routine made a massive difference to the quality of sleep I get each night.
• Cutting back on processed sugar
• Tai-chi/Yoga
• Red Light Therapy
• Acceptance – this is not weakly submitting, but admitting that the illness is currently stronger than I am.

I have also tried Acupunture and Bowen Technique but I’m never well enough to go regularly so they only lasted 2 weeks and 4 weeks respectively before I stopped. Also expensive.

Over the next few blog posts I’m going to potter through each of these in more detail and possibly add more that I’ve forgotten about.

Also I’m sorry for the shoddy work on the blog, I will learn how to wrap text and make it look prettier – just not this week.

 

 

An Introduction

Hello!

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?

Can we pretend that’s a cat?

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!