Long time no post, right?
I’ve been meaning to get on here for a while and give some closure to my silence over the last year.
Basically, I’m better.
Like, really. I’m actually better. Healthy, awake, energised, fit, happy and FREE! And it’s amazing.
I said when I turned 30 that my M.E life was unrecognisable from what I previously knew. Well now I can confidently say that once again, my life is unrecognisable from my M.E years, and you won’t be surprised to know that comparing my pre-M.E and post-M.E lives are also different. Obviously some things are the same (I can’t change me!) but some important things are very different and they will stay that way. I’m a changed woman, in most of the ways I needed to change [just didn’t see it], and I’m finally comfortable and confident in being myself again.
It’s bloody lovely.
I wrote a post ages ago about how having M.E is really hard not only because of all the physical, mental and emotional drains, pains and misery, but because there is no positive stories on the internet. My post basically highlighted that the reason for that is when you get better, you get busy with carrying on with your life – and doing all of the things that have been on hold during your illness …. lose lose! (Or win for the recovery folk)
I don’t want to come across as insensitive. I absolutely recognise my luck here, and I’m happy on a daily basis that I can get out of bed (I almost said “leap” but who does that anyway?”) I’m happy even before I roll my yoga mat out, do 45 mins of yoga practise, all before I’ve eaten anything and then gone to work. For a WHOLE DAY! [During my M.E I had no ability to make or store energy and so to do anything I needed food – I was literally hand-to-mouth).
I practise yoga 6-7 times a week. I go to yoga classes without being the one in Childs Pose for 60 minutes. I see friends for dinner, as in, I can go out at 7pm not to bed (yey!) I go away at weekends. I can travel – and I’m talking commutes and actual taxi-flight-bus-train-all-of-it travel.
I no longer have anxiety about cooking, cleaning, eating, preparing food, sleeping, resting, reading, standing up, speaking, listening, remembering (ok, still working on that) or general everyone-else-takes-forgranted functioning. I can even have 2 glasses of wine, and yes there are yawns, but only normal ones, not the ones that stretch your cheek-skin as if your mouth wants to eat a watermelon.
It’s quite amazing how easy ‘normal’ is.
Dont we always say, M.E Sufferers, that the dream of recovery is to not have to think about the small stuff? I used to define my illness as having to think about the small stuff, and now, it’s back to being outwardly insignificant but inwardly a huge big pile of mini achievements 🙂 (The person inside still screams YEY when I stay awake past midnight, AND, realise I’ve stood up for most of it).
TOP TIPS FOR M.E RECOVERY
I’ve listed below the 5 things I think have brought me back to life.
Yes, seriously. Yoga isn’t just exercise. Yoga is the one thing that made all of the little findings I’ve mentioned above and below, come together. Physical, mental and emotional; sensible, abstract and odd, and everything in between.
- Yoga taught me how to breathe, sit and be still. Yoga taught me, at age 29, how to actually rest.
- Yoga taught my mindfulness; to be present, be in the now and stop making everything about my apparently-now-rubbish future.
- Yoga gave me a purpose right at the beginning of my M.E journey when I was totally lost, depressed and frustrated – get up and go to class. Simple steps.
- Yoga maintained, very minimally, my muscle memory which was important to me given my fitness history.
- Yoga challenges me physically, it pushes me. It not shows me that my body can do more than I think, but also surprises me daily because I think deep down I’d given up on my fitness. Yoga now gives me a physical routine every single day (and I mean this totally honestly, it’s my coffee – I’m a nicer person with it!)
- Yoga gives me emotional clarity and mental freedom that I just never knew before. It’s like I finally know and understand my mind and its precious relationship with my body.
Are you thinking “But-I’m-too-weak-to-Yoga”?
You don’t have to be physically able to do yoga.
Yoga really isn’t just physical.
Types: Avoid the more physical types to begin with (Ashtanga, Dynamic Vinyasa) – instead, look at Iyengar yoga, Yin, Hatha and Restorative yoga styles.
Teacher: Find a teacher you like. Honestly, this is so important. Try a few different classes, different teachers until you find a style and teacher that you get on with. You need a teacher that you feel understands your situation. I was told by my first teacher (Tom Logan, Clapham South, you legend) that I could stay in child’s pose for an entire class if I wanted to. He allowed flexible payments so I didn’t pay for classes I inevitably missed. He researched M.E sufferers and suggested poses that would help me really relax. Or more suitable for me, to help me CHILL THE HELL OUT.
I’m talking poses that would boost my parasympathetic-nervous-system, a system I think had forgotten how to function with me. My body only knew stress and cortisol! Levelling up my Central Nervous System was key to beating the tired-and-wired type restlessness that is so common with M.E, and was a daily symptom for me given I was used to being so active/stressed/on-the-go.
Yoga offered me a type of mental and physical relaxation that I just never knew about before. When I then mixed this with my learnings at the Optimum Health Clinic (see #4 below), I knew that this was putting me into Healing Mode. So more yoga meant more healing, and healing was all I was after.
Go try, keep seeking until you find a teacher you gel with. You won’t regret it even a tiny bit.
So much is now habit that it’s hard to list things down as ‘to dos’ but I’ll try!
- High protein diet: To support gland function and muscle function, but also to curb appetite so you don’t eat loads of carbs that will add to the feeling of lethargy.
- Smoothies: Ignore the hype, it always focuses on different things. Here are my smoothie tips which come from everything I’ve learned over the last 4 years about steady energy release, protein, digestion – it’s all in here and I genuinely swear by this. I’ve paid good money and spent considerable time trying and testing, so see this as a little nutritious gift 🙂
- Vegetables, fruit and more vegetables and fruit: All about the vitamins! Takes no genius to explain this. Think bright colours, eat the rainbow.
- Low GI: When you eat sweet hings, always ‘chase’ them with something savoury so that you don’t waste precious energy on a sugar-peak. Think fruit-with-cheese, treat-with-nuts. Low GI is your best friend for energy maintenance.
- Green juice: Spirulina, Chorella, Wheat Grass & Barley Grass powder – 1 tsp a day of a mixture of these 4 supergreens, in water. If you can’t handle the taste then I get bored. Get over it. Get better! It’s really not that bad. If you want the benefits of the purest forms of animo acids and healing stuff, this is it, just drink. You’ve had worse.
- Gluten/wheat free: Personally, I gave this up as a last resort at Christmas last year. I’m a changed woman. I don’t think gluten made me ill, not at all, but my entire being is just more pathetic than it used to be (!) and so I don’t think it can tolerate everything it used to. I gave up gluten and feel better daily. I am NOT Coeliac. But on days I eat gluten accidentally, I feel M.E-style symptoms in the 2 days following. I’m so glad I finally gave into my own stubbornness and questioned what I was eating. And GF is really not that hard if you really want to do it. If you’re not Coeliac, you can fall off the wagon and take the consequences, I accept that.
- Healthy Digestion: Question your digestion. Could it improve? Are your enzymes working as well as they should? Is your gut bacteria working? Are you allergic to anything that you’re not aware of? Ask these questions, think, speak to people. I found, much later in this whole recovery process that I was filling my body with fabulous, healthy, nutritious foods but it felt like my body wasn’t taking any of them in? What a disappointment (and not to mention a waste of money!)
I spoke with my OHC Nutritionist and we discussed increasing the health of my gut. Then I started reading books on the health of the gut, and turns out, it’s like our main brain. Everything happens down there! Relevant for me, immunity, mood-boosting hormones, energy releasing ability… I was very definitely listening. I went through a period of taking high intensity garlic supplements [these are great for promoting good gut bacteria] and other gut-dwelling-bacteria [like the ones you hear about with the yogurt drinks but don’t be fooled, there’s not actually enough of the good stuff in those to make a difference, plus by the time it gets to your gut, all the good stuff has been heated up by the tummy.] I digress (but seriously, research, go play in a Health Food Shop, they know their stuff). Gut-health is paramount to a healthy immune system so in my case this was probably the final part of my puzzle. READ.
- Avoid all white foods/carbs: They didn’t give you good energy release when you were healthy, so they certainly aren’t going to help you energy levels now. Get rid – they offer nothing good. Choose wholemeal/brown variations of bread, rice, pasta [if you’re still eating those].
- Remove refined sugar: As much as physically possible. We don’t need ANY OF IT! You can replace sugar with slightly healthier varieties, and importantly, low-GI alternatives, such as brown rice syrup. Giving up sugar is really really hard and it is the only thing on this entire list that I am still constantly struggling with. For me – a genuine chocolate addict – I now make homemade organic, raw dark chocolate. And I can’t tell you enough, it’s SO EASY TO MAKE it’s almost funny. Or just buy dark chocolate varieties, I do when I want to. I wrote about this in detail in a post Aspiring To Be #RefinedSugarFree because friends were curious and they, I think, assumed it was easy (for a yoga teacher?!) See these easy recipes I posted on my Yoga site recently, plus a choc mousse fail-safe recipe that takes 3 mins to make and fools people with its brilliance.
- Minimise/remove alcohol: I find vodka to be the least ‘tiring’. Wine makes me sleepy (but it’s sometimes worth it) and fizz is fun until the sugar low gets you…. As my mum once said, the sooner you order a soda-water-with-fresh-lime, the less battles you’ll have with your will power and the quicker your friends/colleagues/acquaintances can move onto something that’s actually worth talking about.
- Avoid caffeine: Just as much as you can. We honestly don’t need it. It’s a habit, break the habit.
Favourite cookbooks for learning how to eat simply but healthily and GF/SF were the really common ones. So easily accessible! They won’t turn you into a chef overnight, but the recipes are simple and encourage you to seek good quality, nutritious ingredients – and ultimately they start to teach you about cooking again, I think they’re a great entry point into learning to eat differently:
I’m not sure I can explain this one. I’ll say you need to trust the process. Be open-minded. If the stuff you’re trying currently isn’t working, look down other roads. The support, advice and clarity I got from my sessions were pivotal for my entire recovery – nothing was rushed, and I think that is the way it was supposed to be. I trusted the process entirely and was overwhelmed with how much she told me about my own body.
(4) The Optimum Health Clinic
The Optimum Health Clinic (OHC) is a bespoke M.E specific recovery clinic, in Archway, North London. I found the clinic via a book my mum gave me right at the beginning of my diagnosis, which I read cover to cover. The book was WHY ME by Alex Howard.
I didn’t go to the clinic until over a year later but I’ll explain later. OHC was set up by an M.E sufferer, Alex Howard, who battled with M.E during his late teens and for a long while after then. Such a debilitating disease at such a pivotal time. For him, he read and read and read until over a long period of time, he had bundles of impressive determinations, and eventually he put of all his learnings and subsequent professional trainings together to help other people with M.E.
I think most people who attend the courses I did at the OHC (Specifically for me, the 90 Day Programme & Nutritional guidance) assume that you leave the 90 days and bounce back into normal life. It wasn’t like that for me, BUT, everything I learnt there has found its place in the 2 years following my sessions with them.
The Kinesiology (#3) had revealed what my body was screaming out to tell me, and this course taught me that the body and mind are in a relationship, and if that relationship isn’t harmonious, it won’t end pretty. Like times (pre-M.E) that I would work 45+ hours a week, go out every single night – and I don’t mean drinking (that was only 1-2 nights…) but 1 night Boxing, 1 night running (7-15 mile type distances), 1 night swimming, another night out for dinner… Sometimes if I look back there were nights when my body was thinking “I’m feeling a little weak/heavy/hormonal/tired today, maybe it’s a sofa night?” but my mind was ALWAYS saying “No, you know you’ll have a great time, you always do! You’ll see friends, sweat, smile, laugh, go, go, go!” And of course my mind always won…
What exactly was involved?
The Psychology course covered NLP (Neuro Linguistic Programming), EFT (Emotional Freedom Technique), hypnotherapy and various other techniques. And 10% honestly, I wouldn’t have believed everything has I not seen progress in my own illness. IT WORKED.
Everything was made clear; from why the illness came to me, how tiny things on my life had contributed, how it wasn’t my fault. Also how I could help myself, slowly but surely, pave new thought pathways to a healthier me. When you’ve been ill for ages it isn’t your fault that your brain jumps to conclusions as soon as you get out of bed and realise your body feels heavy like lead. It’s a natural process that with careful and professional coaching, you can turn in the right direction.
2 other great things about the OHC? (1) You find yourself in a room with other M.E sufferers,. Don’t underestimate that – it’s overwhelmingly refreshing, comforting and an oddly huge relief – something I didn’t realise I was waiting for but could have cried when I got there and suddenly everyone just got it! (2). All of the Practitioners have recovered from M.E themselves. Awesome, right?
I’ll be honest too, it’s not free. Since I went, the clinic is seeking NHS funding and that would just be amazing. But it is currently still a private M.E-speific clininc. I was lucky enough for my parents to agree to foot half of the bill for me, and I know other people aren’t so lucky.
It took me a year from reading his book to actually realising I couldn’t beat this on my own. Initially it felt too expensive. I remember saying I could go on 3 great holidays with that much money. But then the morbid realisation comes that when your body is in no fit state to even consider boarding a plane, your priorities suddenly become clear.
M.E didn’t make any sense until I attended their course.
Without the OHC I don’t think my recovery would have been as successful or as thorough. I think this course helped me organise my ‘toolbox’ and then it was up to me to use it all correctly.
I recommend them without a doubt, I just suggest that you only go once you are ready to accept what they have to say.
They know their sh*t. They know M.E better than anyone in the medicinal (physical or mental) field I had or since have encountered throughout this whole process.
Sounds wanky doesn’t it?
But seriously. I did this. I obviously did it with the support of my family, boyfriend and loyal friends, and I couldn’t have done it without them but essentially, I was the only one who would implement all of these things and keep making them happen. Where there is a will there is a way.
Please don’t think I had it easy because I say this – I remember at my rock bottom thinking that I couldn’t bear the idea of a life like this and I already knew that I wasn’t going to settle for it.
You have to have the right attitude to make it work. All the love and support in the world won’t help you if you have decided that you won’t get better. If that is your attitude, I truly believe thatyou won’t. This is why my Tip #4 was so helpful – the Optimum Health Clinic – because they help you recognise your own patterns. Thought patterns you may have had your whole life that don’t have to be linked to M.E particularly but that could be unknowingly hindering you in many ways.
I’m not saying I wasn’t a depressed wreck through most of this because I was (but I obviously hid it really well – don’t we all?) but evidently there were more days of ‘get me the hell out of this’ than ‘this is now my life’.
You are the person that will keep up the fight, and if you’re lucky enough you’ll have a strong-willed, determined bunch of family and friends around you to fight it with you 🙂
I came back to finish my story. Obviously I’m thinking “I just hope this is the end”, and I’m going to do everything I possibly can to make it so.
I decided on NYE 2015 that I wasn’t taking M.E into 2016. I wasn’t fully there yet but I was so very close to normal function that I was hopeful that I was almost there. I’d never allowed myself to think that before so that just shows how much better I was.
My little brother (19) got Glandular Fever around that time and had to cancel all of his travel-the-world plans. I was totally gutted for him, especially because after 4 months he still wasn’t over the fatigue and his blood test showed his white blood count was so low he wasn’t insurable. (I won’t go into the shockingly poor diagnosis skills of his Doctor, or lack thereof, because I think it was the doctor himself not the NHS, but I do worry that if I wasn’t there to be the firm experienced-had-M.E-sister at this point, I don’t know how long he’d have been out of action. I say this because honestly, we’d all forgotten about my M.E. Not in a mean way or an uncaring way, but we’d moved on. I had to dig deep to convince them that this could be bad and that losing 4 years at the age of 20 to fatigue would be awful).
So anyway, he saw our Kinesiologist. She gave him things to eat, drink, avoid, do (exercise included). He adhered to all of them. Within a few months his blood tests showed his counts were totally healthy, and within the month he flew off on his travels.
I decided to onboard his some of his Kinesiology prescription, and by the I mean I would add the things I didn’t already do. I swear this was the final kick I needed. Throughout my illness right from the beginning with the glandular Fever and Anaemia diagnosis, my blood count was poor. My white blood cell count over 4 years hadn’t got close to ‘normal’ so I set myself a target of May 2016 to change that. Every single day I drank green powder, carried on with my now-4-years-and-counting smoothie habit, practised yoga, tried not to get stressed, ate well, didn’t drink booze, avoided caffeine [the latter two now both habits and not as dire as everyone thinks – basically it means you’re not tired all the time so it’s a small price to pay.].
To add, deep down I knew that I was better and you’ll know as well as I do that there isn’t an “M.E Blood Test”. No, I knew my immunity had been a big problem throughout so I wanted the blood tests to confirm my hopes that I was indeed all-round HEALTHY.
May 2016 came. I was to busy for my blood test (!) so only this month (June 2016) were my hopes confirmed. White blood cell count well within the normal range and everything else wonderfully normal.
BOOM! 2016 is here and M.E is not. Goal achieved, life resumed.
I was inspired to ‘close’ this story when I was recently interviewed by one of my yoga students for an assignment she is writing at university. She interviewed me over a period of a few hours about my M.E journey and I found myself in tears. I’d forgotten (/pushed away/buried) all of the sh*tty, dark parts of my illness because I think that made the positive focus easier. I was surprised to find myself emotional when I remembered parts of my 4 years of M.E that I hadn’t recollected in 2-3 years.
Incidentally, I’ve now been subject to interview by 3 people, all studying PHD or Masters equivalents (see my previous write up of my video interview for PHD Biomedical Research here). It seems that M.E really is still a question mark. When I see the output of the studies I will post about them – they were SO interesting to be part of. And as I said to this recent and 3rd interviewer (and yoga student and now friend), I honestly think she was meant to be part of my recovery! It was humbling to go back and realise how totally SH*T things were for a long time, and how great the good friends were, and how many things I kept trying and trying and trying in my refusal to accept that I’d be tired forever.
So there you go. Inspired to share by the 3rd interview of its kind, and although possibly punchy in my ‘tips’ at times, find the right attitude, the right team to suppose you and start organising your tool box.
I wanted to post something that was positive for M.E sufferers to find online because there is a severe lack of it. I hope my blabbering offers some positive pointers to recovery. Here’s hoping.