When I am in the depths of fatigue, I find it hard to sleep. Brilliant.
When I was pregnant, I had absolutely no MS symptoms whatsoever.
No-one else in my family has MS.
When I’m feeling MS-shit, I don’t look ill.
Whilst I am teaching or practising yoga, my MS disappears.
When my leg weakens after walking it recovers completely after a little rest and a chocolate biscuit. I’ve yet to work out whether it’s the chocolate biscuit or the rest…
Caffeinated coffee makes my right hand buzz.
I can remember 5,000 things to do with the house, school, work and multi-task the fuck out of my to-do list, but if you ask me to fill in a simple form, my brain turns to mashed potato and I have to get my husband to do it for me.
One of the hardest things for me to do when I’m MS-y is concentrate on anything longer than a simple sentence. Hence the lists.
Ironically I’ve been feeling too MS-y to spread the word (the messy hair and lack of make-up is always a giveaway).
Anyway, I’ve decided it doesn’t really matter when I try to increase awareness, so I’m doing it this week instead.
Share and comment and do all of those lovely social-media-spreading-of-words if you fancy it. The more people know about it, the less scary and misunderstood MS will be. I for one was terrified when I was first diagnosed. And even more so when I was waiting to find out why I couldn’t feel my fingers and toes sometimes.
MS Trust and MS Society have been doing great work in the form of research and raising awareness for years. And they continue to do so. This is such a valuable tool for anyone affected by MS. Brilliantly straightforward information that you can read at your own pace – which is essential when newly diagnosed – when all information is scary information.
And for those of you who are more local to me, here is a link to my local MS centre.
I was too scared to walk in for the first few years that I lived here. I’m not sure what I was scared of. Maybe the feeling that I really and truly had MS. I didn’t need to feel scared. It’s one of the most warm, welcoming and supportive places I have come across.
Is it ok for (MS-y) me to have a week off being as healthy as possible?
Every Christmas, Easter, birthday or occasion-of-any-sort equals more sugar, wine (I can feel hungover after a small glass, so I’m not talking a lot of booze here), less helpful food choices and uncomfortably NOT doing yoga (I start to feel uneasy by day 2 of not yoga-ing).
During these times, I end up gradually ignoring everything I know about how to take care of myself and eating myself into a state of headachey-fatigue.
So here I am. All slumped and exhausted. My rubbish bin full of Easter egg foil.
Apparently some mice with autoimmune disease have been seen to increase levels of myelin through fasting, and in some cases have completely reversed the disease process. I am currently way too foggy and auto-immuney to work out how the hell they know this about these tiny little creatures with their tiny little myelin sheaths.
I wish they would put me on a fasting experiment. It might sort out my unstoppable sweet tooth.
So here we go again. Back to the beginning. Back to cutting down on all those delicious energy -sapping culprits.
I didn’t have MS when I used to come here as a child. Nowadays it’s hard to remember what that was like. Sometimes I daydream that if I moved back here I might not have it anymore.
And even though I know that’s not in any way possible, I still love dreamily watching my little family explore the rock pools in the distance whilst I sit and contemplate the ancient castle ruins behind me, without a single MS symptom to spoil my view.
It’s good to come home.
And it’s great to have a few quiet moments to re-feel how it felt all those years ago before MS started to attack my poor nervous system.
There aren’t many days that go by when I don’t feel guilty about something:
Every school morning I find myself bellowing “shoes”, “teeth”, “bookbag” at about 8.30am and then by 8.55 I’m apologising for being grumpy and wishing I’d stayed calmer as your little face goes into school.
“Yes you do have to go to nursery this morning. Mummy is working”. (I will also be cycling, drinking a peaceful coffee, tidying downstairs so I can work with a clear head and loving the fact that it’s still that way for the rest of the day without the usual splattering of toys and cheerios )
“Mummy, run with me. Run faster”. Well I could try, but I would probably fall on my face. So I don’t do anymore than an occasional jog. And I wish I could. With you. Every day.
“Mummy, are you going to hospital again this year? I don’t want you to” “No I’m not. It’s all done”.
I wish I had more time, energy and patience. And I sometimes wonder whether I’m doing a good job. I know that I’m not the only one thinking this.
Apparently my little girl thinks I’m doing ok. In fact she thinks I’m amazing. This little family of mine is the best thing I’ve ever done.
So just for today I won’t feel guilty, and I will happily text my husband to bring me a large cup of tea in bed without a hint of guilt or trying to do it myself because he’s been up with the kids since the new summery 7am. Which is of course is actually 6 bloody am.
I’ve tried all sorts to try and stay on top of my health. Ayurveda, The Jelinek plan (Overcoming Multiple Sclerosis), Deliciously Ella, Clean Eating, all different types of fasting and The Wahls Protocol (way too meaty for me).
After many a month of trying to stick to these really awkward diets cutting out this and that for a bit and undoubtedly sounding like an obsessive nutter and a total pain in the arse to socialise with, I always ended up feeling stressed, exhausted and in need of a large pizza.
But they all had a common and totally brilliant and simple message.
Eat more fruit and veg. Cook from scratch. Avoid processed food like the plague.
So this is what I’ve taken from all those books and articles I’ve read. And these little nuggets above are what gives me the most energy and the fewest MS symptoms, without the faff. If I am feeding my body with stacks and stacks of vitamins and nourishing food it makes sense that my body will thank me for it and I will feel better.
So here’s to scrapping the idea of “5 a day” and replacing it with “as much as you can fit into your day” a day. I have definitely had it with counting portions of anything, weighing chia seeds and only eating oil from a farm that guarantees the freshest of flax (although I will probably keep this one up when I can as it’s healthy and local and great).
This article has some great ideas on how to add a few more fruit and veg into your diet.