I'm about to share what I have found most crucial in my recovery - and I've narrowed it down to my top five.... or I don't think I would ever stop writing! I've been project managing this recovery for nearly the last 3 years after all. This is going to be a fairly detailed, very personal and conversational post - and it might be fairly long. I'm going to get as much down as I can. If there's even one suggestion that makes a difference to someone out there then this is worth it.
A few caveats before I finally write this.
Firstly, I still live with ME/CFS every day. Recovery is rarely (anything!) like a smooth trajectory. In August I needed a mobility scooter again after a small crash, a few weeks before that I climbed a little mountain and swam in nearly every New Hampshire Lake I wanted to on my last stop of a successfully completed round the world trip, much of which was solo. Now, in October I am enjoying walks most days, often around 4K. Right now, Post Exertional Malaise is more or less a thing of the past. But I wouldn't try running for more than about a minute. My body is still a bit slowed down and in recovery mode.
I am still learning, failing, balancing, accepting, despairing and celebrating almost daily. But it feels as if it is time to share part of what got me here .. because there is no doubt that I am on the way out of the worst when it comes to life with ME.
Everyone with ME/CFS has a different way in and therefore a very different way out. There are still commonalities, I have noticed, with almost anyone I meet who lives with the condition. For many, CFS is triggered by a virus and many of us were once what some would describe as passionate and driven 'high achievers'. But people with ME are all so different - this is where conventional medicine has so often struggled to find adequate answers. If you can unravel how you got to wherever you are, then you can start to find your way back.
There are very different stages to the illness (which I'm sure I will cover later). It is crucial to be sensitive to this when working out where to go next when finding your way through. I wouldn't recommend detoxing when your body is going through the 'crash' phase. For the first 6 months I found meditation virtually impossible my mind was so exhausted and in later months it was too wired to even attempt it. Later on, meditation has became central to being able to make it through each day. The EMDR therapy that helped my hugely would have been far too exhausting had I gone through it at an earlier stage.
Finally, I used conventional medicine all I could. I fought hard (I needed help with this because, of course, I was too ill to fight much at all) to be properly referred to an NHS CFS service. While my consultant promptly told me to be aware that "there was no cure", the physio the service provided helped a great deal (it's number two in my top 5!). It has helped me to be in 'the system', for my condition to be properly recognised. I know how hard many people have to struggle with this, but my advice would be to make sure you are diagnosed properly. And none of my advice is intended to contradict or conflict with what conventional medicine may have to offer you.
ME/CFS Resources for Recovery. Part 1: Naturopathic Medicine
This isn't a comprehensive breakdown of everything I did in terms of Natural Medicine (that would be an exhausting as well as exhaustive list!). But here are the big hitters that have helped the most and how it happened...
Finding the Right Naturopath
I first found out about Mike when I had dragged myself to dinner with friends a month after my diagnosis. (The main reason I'll never forget this was that were all on the 20th Floor of Grenfell Tower - David moved out before the fire but he was the chair of the Residents' Association that desperately tried to warn the local authorities that the flats were unsafe).
Mike Bradshaw, a Naturopath had helped a friend's mother recover from Chronic Fatigue and I was promptly handed his number. I have seen Naturopaths before... but Mike is very different and highly unconventional as a healer and therapist. When it comes to Natural Medicine, I think the practitioner really is 'everything'. I have seen practitioners who have made a mild difference to my health, some who have possibly even mucked things up and then people like Mike who have transformed my life. Through Mike and natural medicine I was able to create a picture of all the main health events, pressures and circumstances that had gradually left me so vulnerable to a virus developing into ME (I have also often been told that bad luck and leading a busy life may have simply been enough). And then we started tackling everything bit by bit, integrating the work on the physical body work with an equal focus on my emotions and mental health. He's also something of a wizard - through energy healing he has helped in ways only quantum physics could explain. Except that I believe I am walking evidence this can work.
The first area of focus was the gut. I had had IBS and gut issues since the early days and a childhood in India and Africa (according to an old friend, the very first time we met, I ran up to her and shouted with a scrunched up face delighted with disgust, "I've got worms". Lovely). If your ability to produce and sustain energy is an issue the gut is the first place to look. There could be a combination of issues from 'leaky gut' to over-fermentation or Candida (I tried this bastard diet for years in the past - I'm still somewhere between sceptical about Candida and convinced the diet made a difference). The NHS is dire when it comes properly testing for and understanding the seriousness of parasites. While we're not exactly living in the Elizabethan era when people practically made friends with their inner creepy crawlies, a huge percentage of the population have a problem with parasites. And it's complicated - I don't even have the sense that all parasites necessarily do harm. But parasites can deprive the body of key nutrients and some wreck havoc. Many will send signals to the brain to be fed the foods they most like - you might want to check that craving for sweet and starchy food.
I'm not going to put down all the ways of repairing and strengthening the gut lining, treating Candida or parasites here but do get in touch if you would like to know more. It's for practitioners to prescribe treatments of any kind. And because this blog is for people with ME and very low levels of energy, this needs to be the main concern. The steps I took to repair my gut and digestion made a big difference within the space of less than 6 weeks. I still believe it's the first place to start.
My consultant argued that diet made absolutely no difference to his patient's recoveries. But then again I don't have the figures on how many of his patients recovered. And I think suggesting that diet has no part to play in recovery is, well, freaking ridiculous. I think you need to be sensitive to the stages of the illness. During the dark and bed-ridden 'crash phase' of the first few months (and on and off during serious dips afterwards) I stuck with simple, nutritious home cooking. I still do - but I don't feel this was or is the time for whacky diets. I had scrambled eggs on toast, porridge.. lots of nursery food as long as fruit and veg was still a big part of my meals. I felt as if I benefited from a lot of healthy fats and protein (and still do) but still ate a moderate amount of wholegrain carbohydrates. I certainly do currently consume protein when I am recovering from activity (usually as soon after I stop exercising as I can manage) and find it helps, along with rest, to shorten the recovery time. During what are now very rare crashes (I always assume I've had my last crash.... could that be it?) eating regular protein is essential.
I think regulating blood sugar levels are vital during all stages of ME/CFS. My appetite has never suffered during this illness (that's when you'll really know I'm dying!!). It is vital to eat little and often. I still, very much have hypo-glycemic tendencies and I can imagine how other people with the condition could well be the same. That means I can fade very fast or even crash a bit like a toddler without regular meals. I should really walk around with hard-boiled eggs in my bag to keep my blood sugar stable (a practitioner called the Medical Medium is convinced that eggs feed viruses - I'm on the fence and still love my eggs). I aim to never either over-load or under-load the body with food. Cutting out nearly all sugar and absolutely all caffeine (and tragically in my case, chocolate) was essential to avoid any surges and crashes in energy levels. But everyone is different. Coffee and alcohol will probably be out of bounds for me for a long time yet.
As I became stronger I started to detox my body a bit more. I am not suggesting that everyone with ME or CFS has an issue with too many toxins in the body, but although this isn't something that conventional medicine will easily acknowledge, I do think it's something you absolutely want to investigate. My aim was to remove every physical stressor my body had to cope with that I could. Of course I am not saying that being exposed to too many toxins through either environment or food is a cause of ME - but I believe it forms part of a multi-faceted solution for many.
It's important to wait until the body will be able to cope with any 'die off' or symptoms if you are trying any form of elimination diet. I started by cutting out milk (which apart from butter I have never been able to digest), wheat, all sugars, all processed foods and ate lots of fruit and veg (organic if possible). There are practitioners who prescribe specific diets to help beat viruses that might be worth investigating if the initial trigger virus takes (as mine did) eons to finally move on. I hate the term 'clean eating' (as if everything else on offer is 'dirty'!). I was on an anti-candida and anti-parasite diet for many months (they're almost the same thing) and I noticed bodily changes that were very much positive. I have almost no exhaustion coming from my digestive system at all now and I used to live feeling that way all the time. And, in answer to my consultant - the best my digestive system has ever felt? Well it was the time I was living on a mountaintop in New Zealand, drinking fresh water bored from deep below the rock, eating a vegetarian and mostly plant based diet that was largely grown on the grounds of the semi-ashram where we were all living. I wasn't a complete purist and ate the odd bit of locally farmed meat pie when I went into town. The food was also made with a great deal of love and the whole environment was designed around calming the nervous system. We often ate meals in total silence, sitting outside on the deck overlooking the other mountains. The wider picture of where our food comes from and how it is cooked and eaten all has a big part to play.
Jess' Hippy Porridge Ritual
I learned this early on and made an almost ritualistic point of making my own breakfast and enjoying the process even if I had to rest for a couple of hours afterwards to recover. I've since seen 'tiger milk' (made with turmeric) everywhere.. but this porridge recipe combines the two. And why is it so helpful? Turmeric is a natural anti-inflammatory and when combined with black pepper in a small amount of fat, the bioavailability and anti-inflamatory properties are intensified by up to 2000%. Why am I putting in the option of adding organic whey powder when I have a milk allergy? I seem to be able to tolerate whey powder perfectly well and have often found the extra protein really helps. If you are using normal milk you would be unlikely to need protein powder though.
Turmeric (half a teaspoon? Use your own instincts)
Black pepper (at least a 1/4 teaspoon full)
3-4 Freshly ground cardamon seeds (I love crushing these seeds and the aromas)
A pinch of cinnamon
A teaspoon of organic coconut oil
A generous hand-full of (organic?) oats per person
Milk - as much as desired (or more likely coconut, rice or sugar free almond milk)
2 tablespoons of vegan or organic whey powder for extra protein is always an option
Almonds (or other nuts) and seeds as desired, ideally soaked over night
I mostly found this sweet enough as it is but honey and tahini can be added as desired
A pinch of salt to taste
Ideally soak the right amount of oats, almonds and any seeds in water overnight. This makes everything far easier to digest and 'activates' the nuts.
In a small saucepan over the gas, melt the coconut oil and add the turmeric and then black pepper. Stir it all around.
If you're going for added protein, put the milk in now (less is always better than more) before spooning in the whey powder. Whisk it up until well mixed in and frothy.
Add the soaked oats, nuts and seeds (add the milk to this and stir around if not using protein powder).
Keep stirring on a low heat. At this point add the crushed cardamon and any other spices. Add any more milk or water if needed.
Once the oats and other ingredients are well mixed in and thoroughly cooked (I find around 5 mins or even less is fine), remove from the heat and serve.
Other systems of the body
Of course dealing with digestion is only the start. Using natural medicine and with Mike's guidance over 2 years, I have worked through the lymphatic, endocrine and immune systems and have also done a great deal to bring the nervous system into balance. We worked on the trigger virus (and all the other nasties that followed as my immune system stopped being able to prevent them), heavy metal poisoning (a mild rather than serious problem in my case but still important).
Something else I will mention, with caution because I don't want to get into an anti-vaccination debate is the impact of a Hep C/Tetanus jab I had before leaving for India, only 3 weeks before I fell seriously ill. I thought I was being responsible and as it was India, booked an appointment with my local surgery. I felt instantly weakened by the jab, had flu symptoms and a couple of days where I needed intensive rest. I felt incredibly weak throughout the trip until I finally fell ill. It's almost as if that was the trigger - that that's where the ME/CFS started. I know it's a complex issue, all I can't deny is the evidence of what very clearly presented in my body.
So, that's it....a little intro into my number one recovery tool. But, the whole point is that alone this isn't enough... it was this combined with everything else that has helped to bring my life back to me. More to come...
ME/CFS Resources for Recovery. Part 2: Stabilising Your Activity Levels
ME practitioners often refer to this as 'finding your baseline'. That's the amount of activity you can safely do in a day without getting too tired. That's if you have to get tired at all. I also know that even when lying there, you are likely to be feeling shattered. Completely broken.
That's hardly surprising when this practitioner from the Optimum Health Clinic described that at a cellular level, many people with ME are going through exactly the same physiological process as Marathon runners do when they 'hit the wall'.
Your baseline will all depend how extreme your condition is. If you are unable to leave your bed it may be a case of making sure you turn over or lift up your arms once an hour. If you are very used to pushing yourself in everyday life, it might be more likely that you need to do less, or as I like to call it, turn your sense of determination completely inside out.
In my case I had to learn to limit any walking to 20 mins a day. And, unless it felt as if it would be a serious mistake, I went on that short walk virtually everyday that I needed to. I kept this up for about 6 weeks until I upped my time to 25-30 mins.
Start by doing less than you think. And sustain it. Even if it feels as if you're going stir-crazy with cabin fever as I did. I felt as if I was almost under house arrest at times. If it feels as if a bit of excess energy is bashing around inside you, that's exactly what should be happening. Eventually the self imposed limits will start to free you, but only if you give them enough time.
What I am describing could come under the banner of the highly controversial Graded Exercise Therapy or less derided 'Pacing'. The reason why many in the ME community find GET so upsetting is that firstly the trial it came from has been widely discredited. It clearly rarely works and implies that all people need to recover from this severe, neurological illness that effects multiple systems of the body... is a spot of exercise and CBT. Or even to overcome their laziness and aversion to it by introducing it in stages.
In my case, stabilising my activity would never have got me there alone, but it was a vital component. Also in my case, the emphasis was far more on what I didn't do, or restricted myself from doing than making myself do more. I had normalised feeling the most severe, deep exhaustion. All I knew was pushing through that exhaustion..... to go out or even work as much as pushing through the exhaustion to dress myself, to shower, have breakfast, to actually pee in a toilet.
You need to create an environment where your body has to push as little as possible. Life will boil down to its essentials - going to the toilet and eating are inevitable - but in general you need to create an environment where the body learns that it can start to heal.
I started to use mobility scooters and wheelchairs whenever I could find them. These were tools that meant I was able to do more normal things such as go to an art gallery and even the best Glastonbury of my life.
I didn't have much say in this, but as my teaching job, my music career, the flat I shared my social life all fell away I started to get more deliberate about the process. If you want things to change you will have to make changes. Moment by moment but you will also have to change the architecture of your life. We all have all sorts of challenges. With kids? No idea how I would have done this. It has been utterly shit not being able to work much... but I had to get better to get my life back. I had no choice but to put my body first. I would rather get back to work after 3 years of doing very little than struggle on, through a marathon runner's wall every day for a decade.
Find a practitioner who can guide you in establishing a baseline that is right for you and then do whatever it takes to stick to the activity levels you have agreed on. There are also some great people online from Toby Morrison at CFS Health in Australia to The Optimum Health Clinic in London. Both have an abundance of free online videos and lots of resources to use.
If you don't arrange your life around getting completely better, it's very unlikely that you will. It's hard enough when you do. But you can!
My sister is an EMDR therapist. Not that she could ever treat me as such, but she very gently sent me articles and studies about the efficacy of EMDR in treating ME. There are actually some subtle medical parallels between PTSD and ME. It's as if your body, perhaps through illness or some other trigger, is locked into a permanent stress response that it is unable to break out of without the right help. I was too broke to go ahead for a long time and also more than a little bit cautious and sceptical in how appropriate or even necessary EMDR would be. I had found counselling very helpful in the early stages of my illness and eventually took the plunge. I can safely say that EMDR and the work I did with my therapist was a fundamental part of recovery. I don't think I could have come this far without it.
EMDR stands for Eye Movement Desensitisation and Reprocessing Therapy (yes, apparently, Francine Shapiro who developed the therapy in 1987 wishes he had called it something else!). Of course any excellent therapist will use whatever psychotherapy tools their client needs most. An EMDR therapist will also use specific physical tools, perhaps tapping the client's knees, the use of a gentle bleeping sound that will ping-pong backwards and forwards in headphones in the client's ears. The client can also hold buzzers that buzz rhythmically and flash red lights intermittently. It all sounds a bit stressful! But the idea is to replicate the REM state that allows for trauma and distressing emotions to be properly integrated and processed. I'm giving you a shoddily rough outline but you can see a lot more detailed info (including the stages of treatment) here.
What interested me was becoming aware of just how much impact small stressors and every day trauma can have on us. I have been spared a lot of trauma in my life. In the end, the main traumatic event I went to therapy to better cope with, turned out to be one of the last things we looked at. I was amazed by how much I had been carrying - and my life hasn't been particularly 'difficult' on paper. But as Amanda, my therapist said, "chronic illness is an ongoing trauma". She's right; you can't escape your body. You are the battle ground, day in and day out. Not that I usually use the 'battle' metaphors in dealing with illness. I was also made very aware of the impact of my experiences as a baby and family dynamics. The role of epigenetics - inter-generational traumas that had been passed down through me was pretty mind-boggling. Everyone is different and may have a different process. Mine was really creative - lots of imagery - but however you work, a good therapist will make sure it's right for you and at the right pace.
I usually felt completely shattered after therapy. Interesting how my physical symptoms would be exacerbated and it usually meant the rest of the day being bedridden and feeling incredibly fragile. I would be extremely careful about using EMDR at an earlier stage of ME/CFS. But in my case, as the sessions went on (I think I had about 10 or so all together) I started to feel lighter and lighter.