Your thoughts; How to make recovery progress when bedbound with MECFS Fibromyalgia POTS or Long Covid

Hi Dan
I have had two separate periods of being bedbound. Both lasted around 3 months. The first was when I became ill overnight. I woke up to being bedbound, after taking a nitrate, prescribed by a doctor. The other was 9 months later. I had started to improve, but I now realise that I pushed myself way too far. Once again, I woke up to being bedbound.

As you are aware, these are very scary times. I will be frank and say that I just didn’t want to go on.

I have had a good think and this is what I feel made the difference. 22 months on, I still have a way to go, but I am confident that I will fully recover. I am now at the stage where I can walk 2 miles, leave the house daily, read, go out for meals etc.
I will lay my thoughts out in my next post.

1) emotionally practice trust to the process even if it’s super hard. With that I mean trust in that this isn’t forever and that you will get through this. According to me the biggest suffering is the deep hopelessness and powerlessness not especially the symptoms. Of course the symptoms are very painful but the feeling of not knowing when they end and if they will end are the horrific part and put us in a mental hell .For me my trust increased by one, knowledge and you don’t have to understand the hole dysfunction you just need someone (you Dan) as you did in your program, to say “I understand you, I feel you, you can do it, I am a living proof that you can” because that gives us hope and the bravery to dream again witch are the most important thing when we are bed bound and on the lowest point in our life. And tow, I often thought about the quote “the better it gets the better it gets”. It may sound silly but everything that wasn’t bed bound would be a victory. And the potential time to be in this situation suddenly went from 1-2 years of recovery to 2 month and I will not be bound anymore. In your program you write a commitment letter and that is important because we will end up in situations where we have to take really hard emotional decision for our recovery and to do that takes commitment and seeing the bigger picture. “The right decision isn’t always the easiest”. A spiritual leader named Almas talks about “basic trust” short explained its a feeling we have when we are babies but a feeling we get disconnected to when we grow older. It’s a feeling of being held and protected and that everything that happens has a meaning even if we can’t se it right now. Religious People have a clear basic trust to god. Therefore you see people recover faster that are religious. Basic trust can be trust in science, trust in your program, trust in Dan, trust in the universe, it’s a trust to something that makes what every you go through less lonely and a faith that it will pas eventually. A feeling that you are held by something loving and that the suffering has a higher purpose. You don’t have to feel ore see it but you trust that this isn’t forever.

2) Diet!!! Diet was the start of a positive snowball effect. And the first effect as I remember wasn’t a perfect diet, it was that I ate regularly. Thanks to that my sleep improved.

3) I escaped reality by watching stupid shows were you didn’t have to focus to keep up in the program and then I sleepy and hade mental breakdown every day. Don’t now I’f I would recommend that but a believe it’s important to let yourself bee and try to let go of the demand you mentally set on your self because it will decrease the resistance to the situation you’re in and decrease the suffering by not prisoning yourself in a constant mental conflict with yourself. A thing I didn’t know then but know now as I think would have help a lot is “yoga nidra” ore NSDR (none sleep deep rest) it’s a form of deep relaxation that is is unwiring your nervous system. You lay in you bed with an eye pillow and cut of al the impressions and just drift away. This have help with a lot of things but was fantastic for brain fog and the extreme fatigue. When you are light and sound sensitive and feel constant overwhelmed this will be a life saver. After one hour you “wake up” and you feel a lot better.

4) I don’t really remember but I pushed my self to do your program. Maybe I hade a bit more energy at that time but it was very hard. I forced my self to eat regularly but I tried to not force my self to do every thing in the program when the reality was at that time that I couldn’t do it. I tied to work with my perfectionism mentally through the program.

Most of my worst time bedbound was spent like a baby. A sort of conscious pre-awareness. Unable to form coherent thoughts. I could not tolerate ANYone near me. I chose to remain living alone, struggling. A weekly; bath, laundry, washing up and eating cold/microwave meals left me in that state. It DID mean i had full autonomy and control over my environment, i had absolutely no stress except that which i caused myself and carried within me from my past. By this point i had won my case in court and won enhanced ESA (disability) this crash resulting from the stress that winning benefits caused me left me bedbound for almost a year. I had another major 8+month relapse approx 1 year later and several 1-90day bed/sofa bound episodes up until the second covid lockdown in the uk.
Gradually, i could grab 5-10mins here n there of thinking time. I was lost, i had no plan of action, didnt know what to do. I lived in a state of existence, i was surviving at best and stuck in survival mode physically, mentally and emotionally.
First i learnt obvious things to avoid; coffee made me nauseous, allergic reactions to normal stuff like shampoo and soap. I found alternatives.
1- Activities i did when i could do nothing;
Erroneously, at this stage, i wasted my energy and time using those precious moments to research and get mainstream understanding of MECFS. I wrote everything down on million bits of paper over those months. This research i did i feel WAS wasted, except it gave me a platform of knowledge i could use 4 years later It DID give me a sense of purpose. But i believe it kept me stuck at this stage longer than i wouldve otherwise been. (i was trying to do the right thing, be the good girl, find the cure)
I am a thinking type person vrs a physical person, so this situation of losing my ability to understand language, to speak, to use my mind, something i took pride in, albeit average intellect was traumatic. It was my identity.
I am an avid learner, fantasy reader and creative sort. So when i gave up on the research during those 5-10minutes i had (nothing related to healing journey, except Lightning process, which i distrusted.) I went back to childhood activities i had enjoyed. I drew, i coloured, i read, i slept, i stared at the walls and the ceiling, making images out of shadows and cracks and patterns, daydreaming or completely blank-minded.
Other than my own thoughts and the lengths to which i pushed myself to stay alive, i had no other stressors. My mum took charge of my finances and bills, prompting me to pay them. She sometimes did my chores, so that i had energy for understanding vital conversations. Everything was about priority and trading the priorities. I gave up everything else. Often these 10mins would cause me to sleep for a few hours/2 days straight. I let my circadian rhythm do what it wanted to do, i had no option, no choice. I needed to avoid light, sound and stimulation to handle the essential tasks of staying alive.
One mantra kept me sane;
Dum spiro, spero -Latin for ‘while i breathe i hope’ (Hope for positive change, change is the only constant to life except death and taxes). I came across this while a young teen in a book and it kept me alive back then as i was ‘semi-suicidal’ during my teen years. Wanting to not exist.

2;what worked for me to make progress with other strategies;
Identifying what my stressors were and avoiding them, pacing myself, living within my limits. Food, light, noise and chemical intolerances were reasonably obvious, less so was people, emotions (including positive ones) and stimulation (news, social media).
The others were harder; posture, diet and stress management are my 3 big improvers,. As well as the understanding gained from ANSrewire course (and therapy). It corroborated and improved upon what i learnt for myself and combined the techniques i had sussed were the most likely to work. By the time i bought ANSrewire, i knew about cell danger response, CPTSD, ACEs etc but Dan brought it all together, plus more and gave me the blueprint/roadmap i was lacking.
I was in ALOT of pain due to being bed/sofa bound for so long. I tried massage to no avail. Cranial-sacral osteo sent me to sleep. she was brilliant n let me sleep, she knew it was the first stage for me learning to relax my body i believe. She focused on stretching out the arches of my back n the back of my neck ever so gently. So much tension in my body from at least the age of 6, if not 4yrs old. I was 32 when i was diagnosed.
I believe this gave me enough energy to switch to Alexander technique autumn/winter 2018. This is a practice which teaches ‘correct’ posture without tension. I personally prefer Feldenkrais as it seems more comprehensive and instinctive, more about rewiring the physical ANS, but Alexander Technique was suitable for my needs and local. It taught me how to relax and hold my body without sending stress/danger signals to my ANS. During the 2 years of alexander technique, i gained 3inches height! I did start the Alexander Technique for vanity reasons. I wanted to become the woman i should be and that included getting rid of my ‘doormat’ posture. The practice i did at home was combined with meditation. This was pure fluke/serendipity/lady luck for me. Until the 5th rewatching of Dans’ video course, i did not ‘hear’ him talk about ‘bracing’ the body.
[Feel free to edit this out Dan] I am semi-shamed to say i also used weed. Weed was a false crutch, unhelpful escapism. Short term useful as it ‘forced’ me to relax. But it meant i had to later on re-learn how to relax my body when i quit the weed. It also impacted my cognition once i became addicted to the ‘benefits’ of weed. It also had the other questionable ‘benefit’ of relaxing my mind, such i re-visited past painful memories and forged new understandings. Weed was not essential, in hindsight it was an understandable mistake that wasted my time. I wouldve done much better to have simply stuck to pure meditation/hypnosis.
Diet got ‘twigged’ when i recalled that i had never felt i had fully recovered after an operation to remove my appendix 2 years prior to diagnosis. I learnt what the appendix does for gut health. I’d had multiple courses of antibiotics ever since. I learnt about the effects of ‘antiobiotic abuse’, also leaky gut and candida overgrowth, which i suspected i had. I came across a TEDtalk vid on youtube about a doctor who was diagnosed with MS and cured herself such she was able to give up her wheelchair and go on a riding holiday. For her it was all down to diet. She ate ‘paleo’ foods. Organic fruit, veg, meat, fish and offal. I adapted the diet to my tastes and ‘went paleo’. I saw enough improvement i went abroad to visit a friend. I relapsed once home and quit the diet, but i DID eat cleaner than previously.
I had also come across ‘paleo-keto’ diet, but it went so against what i had been taught my whole life, i didnt trust the research i was doing around it, my ability to sift fact from fiction. 3 years later, desperate to win my ex back, i started the paleo-keto diet with auto-immune protocol diet elements. Dr Sarah Myhill’s mitochondria based MECFS theory resonated with me and she laid out the diet in easy MECFS focused steps along with supplements. I also started alexander technique at this time. Albeit i had not been fully bed/sofa bound, i had had several of the minor episodes of being bed/sofa bound prior to changing my diet, i had been considering a wheelchair so i could leave the flat -this scared my ex into thinking he was making me worse, so he did the honourable thing and broke up with me.
3 months later of the diet, supplements and alexander technique i felt i had energy to bounce off walls! i felt i had access to more of my brain than i ever had! I pushed myself too hard to do a 3mile walk, got lost, ended up being 5miles, relapsed to almost sofa-bound level. At this point, i bought ANSrewire course. Christmas came and went, i lost hope winning my ex back, i have never since been 100% consistent with the diet since. But i do dip in and out of the diet and i have never been fully bed/sofa bound since. Maybe the odd day here n there. For me, now, autumn 2023 age 41, a ‘relapse’ consists of watching films in my chair and next day at worst 2 days i can do chores. I do not yet live a normal life. But 3 days ago, i brought my stepdad home from hospital via train bringing both our luggage, due to his operation. Today i did chores and writing this essay and i will be driving to my local for a food shop shortly.
In hindsight, i now know that the desperation i felt to win my ex back caused a constant elevation of adrenaline, giving me false energy. Again, i was not doing the healing journey for myself, but for others. Hence i quit the diet that works so well for me. But along with Dan’s ANSrewire course it gave me the empirical evidence, blueprint and knowledge i needed for a more stable recovery. It was my catalyst season. Prior to this i had had some very good episodes. I even went abroad twice. But i had always relapsed and ended up bed/sofa bound after each good episode. I do not KNOW how i got out of those bedbound moments, i only know what keeps me OUT from returning and what i did during those episodes.
I hated myself growing up. I was my own worst enemy, self-sabotage, self-harm, highly self-critical -worse than the bullies. Everything was my fault, submissive, no boundries, people-pleaser, lacking in joy, perfectionist, survival-obsessed (which is why covid was a big deal for me -ANXIETY! such i barely avoided being sofa/bed-bound, but the empirical knowledge n understandings gained, plus Dan making the course re-accessible meant i managed to avoid it ), I had all of Dan’s listed personality traits and a whole bunch of cognitive distortions and negative beliefs.
Knowing some of the above, I got the full whack of NHS CBT sessions -the third time ive been in therapy in my life. It put me on the path to identifying all of the above, though i did not accept the highly self-critical/mentally self-abusive. Dan taught me about the personality traits the following year when i bought the course.
After the CBT therapy, i self-taught myself self-love and gratitude through a daily diary/journal. Each day 5 things i liked bout myself. 5 things i had done which brought me joy, 5 things i was grateful for. I no longer do this journal and i am in private therapy thanks to my nan. i no longer hate myself, call myself ugly etc. I am grateful that MECFS is teaching me, forcing me to become the woman i shouldve always been. i’m learning the lessons i could not would not learn in more conventional ways.
At first it was difficult. “i was bedbound! what on earth could i be grateful about? i hated my life, if you could call it a life!” I started with the little things; grateful for my kettle and tap so i could have a hot drink in the winter, a roof over my head, benefits so i was not on the streets starving/dead, that i had hope for recovery.
Despite having a diploma in hypnotherapy and NLP, meditation and self-hypnosis have been highly challenging. It FEELS like time ‘wasted’ even though i know it is not. This is an emotional response i have due to years of my life ‘lost’. My brain was either not working, perfectionist, or monkey-minded. Instead, when i was able to use my ears without pain, i would listen to classical and meditative binaural music and daydream – a child’s game i used to play with my nan’s classical music, what story was the music telling me? I would also listen to my tinnitus when i couldnt handle audio input.
The first ‘success’ i had with meditation was a version of box breathing combined with alternate nostril breathing. I needed this level of complexity/aspect to keep my mind on track and away from perfectionism. Years later, Dan taught me another way to meditate, but i still prefer box breathing. This was while i was sofa-bound, but still living as before.
Nowadays i combine meditation with exercise, as i still hold the ‘time wasted’ belief -it stubbornly refuses my every attempt at rewiring!. Yin Yoga, Qi Gong, Nature Walks and Vasovagal exercises for variety. I found all i needed online. Mostly Youtube. ‘Box Breathing’ meditation is something i now only use when i notice i have adrenaline/anxiety, as well as ‘the physiological sigh’ if i am emotionally upset.

3; How did i cope?
While bedbound, i mostly had no thoughts, no emotions. It was all about the practical stuff, existing. i had no energy for anything more. Avoiding any and all stressors and non-essential activity was my only strategy, doing the absolute bare minimum, living in a filthy flat. The carpet was not hoovered/swept for 5 years! i could not afford to have pride, i could not afford to have people around me to do things for me that i couldnt do.
I used alot of escapism, mostly reading fantasy books. Later, as my brain improved, also with research, social media, politics, learning french and spanish. -Distraction was key, so i did not dwell on my situation all day every day. I would often get depressive/emotional episodes. i worked through them to the best of my ability. i allowed myself to process the rage, to feel the feelings when i could not avoid them. I made best use of the times when i was ‘wired and tired’ or had false adrenaline or anger based energy. I tried to share what i was going through with others.
I watched recovery stories when id lost hope, trying to find patterns, or sift through the research papers or MECFS social media pages, looking for new ideas to try. In later years i re-watched all 40-ish of Dan’s ANSrewire vids and even did nothing but take notes on all his vids back to back for an entire year to cement things in my head.
After 9.5 years being on disability benefits, every square meter of every wall in every room and every door now has a recovery/mental health focused list, mnemonic, expression/saying. In order to keep my recovery journey my priority. I properly started doing this when i realised how desperate i was to win my ex back and started understanding what it was going to take for me to heal fully. To help me remember, to keep my plans front and centre. I have started replacing them with DIY posters and scrubbing the walls as of last 2 weeks.

4; Did i push or withdraw?
I did a combination. Having ‘broken in’ 2 young horses and a family habit of rescue dogs as pets, i instinctively knew there was an element of desensitisation/overwhelm. Initially, after diagnosis, i did push too much which resulted in me becoming severely bedbound. many many timesi pushed myself too hard at the first opportunity, other times i did too little and there were times i got the balance right.
I HAVE learnt to fear doing too much, too soon. I was forced to listen to my body’s signals too many times. This is another reason why i am in therapy. I have always feared the adult world as a child. I believed that adults were secretly monsters wearing human suits so as to not scare children. Reintegration is a stage i have been stuck at for some time. I fear abusive bosses, as everyone except my last boss was abusive (i already had MECFS symptoms).
Other people are my biggest ‘issue’ i guess. Which is why i have thus far avoided them and now have a plan of action to study and become self-employed. so i can have full autonomy over the people i interact with. I have overtime realised my new life will require this if i am to avoid a re-emergence of MECFS, once i am in full remission/fully healed. I also have to find a new way to ‘deal’ with my mum, a recent discovery.
Success about walking this knife’s edge of extending one’s limits came when i started treating myself like a science experiment, trial and error. I found my baseline. I learnt to pace myself, to take smaller steps forwards, i learnt when to pull back and revert to a previous level.
Ultimately, withdrawing worked best for me regards leaving the bedbound situation. i truthfully had no other option. Eventually, something occurred whereby i did more than usual and found i hadnt even noticed the effort. My progress was not linear. Seasons would go by where all i could see was backwards or no progress. those times were the hardest, but ultimately it meant i hadnt fully learnt something, or was not being consistent, seeing what i could get away without doing regards good habits.
I have had HUGE difficulties with things like self-care, routines, time management, my entire life. I only did those things when i was pre MECFS out of fear.
I have not been 100% consistent with all of the strategies for more than 3 months at any one time. But i am 100% consistent in my determination and hope. Soon as i notice a reversal, i reimplement the strategies im missing. I am a black-white type, a perfectionist, or i give up. Finding middle-ground i think i am only this year finding, 9.5 years after diagnosis, due to the baggage i carried from childhood. Perfectionism stresses me out. so as with my activities, i’ve been finding the baseline of the strategies to employ. A slower trajectory is better than none.
Had i not had this extra personality/mental health issue/s, this lack of agency and adulting, my belief is i wouldve been working 3-4 years ago.

Sarah, again…
Looking back I think it would have been helpful to have a nurse come in at least every 2 weeks and give me liter of IV saline. If I had known then, I would have.

Now, years later I get an IV saline (nothing added) once a month. Helps a lot. Especially with blood pressure issues (low), dizziness, etc. Helps the ANS.

Rest, hope, determination, goals, love of family were the major factors for me in getting past being bedbound. (But at the most severe level of illness, not knowing any way out, I was close to despair.) Hope seems to be a common theme here.
When bedbound at my most severe level of illness, especially at onset which was sudden, I could do nothing but rest mostly in a darkened room. I looked outside at a lovely tree when I could. This was in 1981, pre-diagnosis, pre-internet. I think I gradually improved with rest. I was motivated to improve, my children were 8, 10 and 12. (Now they’re in their 50s, I’m motivated to fully recover as I’ve made progress over 2 years with ANS Rewire). I luckily had a supportive partner back then who took care of us all. A doctor told me I was sick because of stress. I had a stressful teaching job when I got sick and a custody case in progress. But this didn’t make sense because of the severity and nature of my symptoms. But at least I hand’t been told I’d never recover.
The next time I was bedbound, not having been diagnosed nor yet told I would never recover, I had hope and experience of at least improvement and was determined to recover. Again I used nature for inspiration, imagining in spring my health blossoming like the opening buds on the tree outside. I wanted to be a writer and had published poems some years before. I read in bits lying down, even a page at a time, and made notes about what I read, a line at a time. I rested a lot. I read the diaries of writers who had had illnesses, like Virginia Woolf. I was determined to recover and write fiction. I had several serves of protein powder a day (hasn’t worked since!?) After a couple of years I went into a remission so amazing I did the Jane Fonda workout every day (1980s!) but had to earn money asap so got a full-time job requiring a long commute. My symptoms returned but I persisted, going to bed when I got home and lying in the sick bay at the College at lunch- time. Then I had to go part-time. Then I collapsed. Then I was diagnosed and told I would never work again and would never recover.
So I was bedbound again for another couple of years. But I knew from my previous remission I could improve. With rest and hope and determination and motivation to write and be available to my family, I did improve but not to the extent of remission as before when I temporarily had no symptoms, but got mostly out of bed. I had some therapy but not yet for complex trauma as I am still having now. I think pushing through to work for 2 and a half years had been too much and I didn’t yet have access to recovery stories and programs. Because of what I’d learnt last time about writing, snail-pace, I managed to write 3 short stories and got them published in the best literary magazines. After the editing process I crashed.
Bedbound again. Rested again. But my previous experience of remission and my achievement again fuelled hope and determination. I listened to the entire library of what the Blind Institute back then called ‘talking books’ with a special machine, because eye pain, fatigue and brain fog made reading books too challenging. I looked at the trees outside my room. I worked snail-pace in bed again on what was my passion: writing, as teaching had not been what I wanted to do (a part of the problem I think). In defiance of the diagnosis and prognosis I started a novel. From resting in bed I progressed to walking a bit in the nearby park, dusting and washing, reading and writing (very challenging). I spent as much time with my growing children as symptoms allowed and made that a priority. Then I was out of bed for about 8 years.
2002 by now, my relationship had become very stressful and I became bedbound again. I knew I had to relieve the stress and managed an amicable enough separation. My children had grown up and left home. As soon as I left the relationship my health improved and although I’ve had ups and downs I have never been bedbound since.
PS: My novel, MAGGE was published in February 2023.