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!

Anxiety

Anxiety sucks.

There’s no two ways about it. Anxiety sucks.

(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:

  • Palpitations
  • Shortness of breath
  • Chest pain
  • Blurred vision
  • Dizziness
  • Shaking
  • Difficulty concentrating
  • 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.

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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.

– EFT or tapping is really good. Brad Yates is easy to follow.

– 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.

Ommmm…

 

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.

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Photo by nicollazzi xiong on Pexels.com

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.

Well…I didn’t.

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Photo by Pixabay on Pexels.com

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?

There are a ton of benefits to meditating, this website lists some of the good ones: https://www.alustforlife.com/mental-health/meditation/20-reasons-why-meditation-is-the-best-thing-you-could-be-doing-right-now

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.

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Photo by Pixabay on Pexels.com

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!

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Photo by Chevanon Photography on Pexels.com

(Not actually me)

Christmas

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:

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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.

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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.

Pineapples

And the power of your mind…

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Photo by Carlo Martin Alcordo on Pexels.com

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.

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“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’ll keep you posted.

Sleep tracking

AE0917EF-D083-487B-9A2E-14F068533241I 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?

323D3869-7D72-47D8-B609-E822094A23A1Firstly, 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.

B53E85AE-4962-4ED8-803C-CC177376B5A4This 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.

 

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.

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(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.

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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…)

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.

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This is the school work section of our house…

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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! 😀 )