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!)