Starting the paleo keto diet and Dr Myhills basic protocol - a diary of the first week then - disaster

 I thought it might be useful to keep a kind of diary blog of  my experience in starting this new protocol, partially as it helps me to look back amd reflect, note what works and what doesnt - as my memory and brain fog are dire, so having it all documented will help me. Plus just in case it helps others to see how this journey goes. 

Firstly I am not advocating anyone else try this. I have thoroughly researched it myself, but based upon my own body, symptoms, diagnosis and experience. If you are looking for your own answers to recover from CFS/M.E. I recommend that you start with looking at the M.E Associations website first, do your own research looking at the experts protocols from around the world, and discuss with your Dr and own health professionals. I have discussed most of this with my own GP practice back in 2021 whilst I was seeking advice from a private nutritional therapist. Whilst things did not work out then, I think that I have determined the cause of one of the issues that I had at the time and with a better understanding of how not having a gall bladder works with this diet plus how timing of taking supplements such as ox bile and other factors all add up. I feel that I am a bit better prepared this time with a better knowledge base. 

I  believe that a key reason that I was experiencing worsenning digestive issue last time I was working towards starting the paleo keto diet was mostly because of timing of when I took things like Betaine hcl and ox bile, as well as some other factors all to do with my gall bladder removal. I am amazed now with what I now understand that hospital consultants and GPs did not ever mention/suggest to the use of either of the above in order to help my body to digest at  its optimum. Here is a link which explains it quite well

Digestion following gall bladder removal

There is a lot of good information out there about this link is simply one that is well explained and easy to understand, the same channel has further videos explaining in more depth a few factors to take into account when getting timing right. 

Armed with this info I have started taking 1 ox bile tablet 90 minutes following my largest meal to see how things go. So far Ive had not experienced any new digestive issues/symptoms like I did previously, but its only been 2 days of doing this. 

This is a  list of what I am taking - Im not adding doses because you need to look into these yourself and look at the reasoning behind each item to understand why etc. Check out Dr Myhills website for yourself for her protocol. These are what is approprate for me, I am considering adding in a further few items but just want to ensure I tolerate everything here first, manage to get into ketosis and stabilise my system on that diet. 

Thyroxine, 

vitamin C, 

vitamin D3, 

a high quality multivitamin and mineral, 

high quality CoQ10,

 essential fatty acids /omega 3 & 6 & 9 from fish oils, hemp seed oils, and evening primrose oil. 

vitamin B12 sublingual spray - better absorbed this way. 

Acetyl L carnitine

ox bile 90 minutes following main meal

apple cider vinegar

sunshine salt 

Day 1 

I found day 1 easy diet wise, I was not hungry at all. Most of what I ate was super easy because I have no energy at all and needing to lie down much of the day. I followed DR Myhills suggested calculations to determine how much fat, protein and carbs I should be getting daily based upon height, weight, age, activity etc. 

I started out with a meal of tuna, sweetcorn, lemon juice, apple cider vinegar, olive oil, mayonnaise, kimchi and coriander. its one of my favourite easy meals which I just added the oil and mayo to - I usually have it with a mashed avocado instead of mayo.

Tea was  chicken and avocado with a dressing of olive oil and lemon juice. Followed by Alpro vanilla with raspberries.

All my macros were calculated as best as possible, weighing everything. It wasnt perfect as I was awaiting food delivery. I use Myfitnesspal to log all meals, calculate my macro goals and ensure I get as close to what I need as possible. It is a lot to calculate and keep on top of all the food macros and supplements etc, and I struggle a lot with this due to my brain fog, so everything is written down on a chart, with alarms set on my phone to remind me of timings etc and luckily I have assistance at home from my partner.

Meanwhile I am still using the Visible health app with Garmin armband to monitor my pacing. Its been extremely difficult keeping my pacepoints down to a level where I wont crash or get worse, never mind being able to bank up energy. Sitting up puts my heart rate between 90 & 100 which uses too many points/energy. I have to lie down to get it under 80. So whilst recovering from this latest crash and head injury I am resting on my bed, mostly lying down. I managed to keep it to 15 points today

Day 2 

Todays meals consisted of eggs, cooked chicken, pk butter, olive oil, alpro dairy free yoghurt, flaxseeds ground, raspberries, blueberries, pastrami. Not very varied as I launched into this before organising all the foods I needed. But I will catch up nutritionaly in coming days. I tried ox bile 90 minutes following my largest meal and experienced no issues.

I have noticed pain levels creeping up folloowing the Alpro soya yoghurt yesterday and today, so will look at alternatives in my next shopping. This is the only food new to me so easy to work out. 

I am drinking lots - around 3 litres and ensuring I have the PK salts to help.

My carbs were kept to 41 total but if you remove the fibre of 29 that makes just 12 net carbs. I think I may aim for slightly higher net carbs so as not to overdo the ketosis. The ex nurse in me still freaks out at eating all this fat and having ketones in my urine. But knowledge increases as time passes and whilst the majority of the health profession havent caught up with the whole microbiome and nutrition aspects actually solving health issues. Hopefully the NHS will catch up soon but I think it may be many years away, so I'm taking my health into my own hands fully. It will be interesting to see the difference in my blood results in 6 months as well as seeing how my health is.

By 10pm despite having close to my full alotted calories I was ravenous, with a rumbling hungry tummy keeping me awake until about 2am. I expected this because there is a period where your body still expects carbs as fuel and isnt using the fats fully as fuel yet.

I managed to keep to 9.5 pace points which is great, meaning some energy could go to healing.

Day 3

After a dreadful nights sleep due to muscle aches, twitches, hip pains which I rarely get these days and hunger, I finally got some decent sleep between 5 and 12 noon. I awoke with full on flu like symptoms, which can happen when starting keto. Although, I feel like this much of the time , especially when I have overdone things, but this was right up there symptoms wise. Again it was expected. I was super hungry too, with major brain fog, memory problems, sore throat, swollen glands all around my neck and 9/10 exhaustion. I tested my urine this morning and I am not in ketosis yet.

This mornings breakfast was scrambled eggs, pastrami, mushrooms and tomatoes in pk butter which I enjoyed.  I took ox bile 90 minutes later and again no issues with this.

My afternoon meal consisted of Tuna, Kimchi, Sauerkraut, beetroot, pea shoot salad, olive oil, mayonnaise, sweetcorn and apple cider vinegar - all carefully measured out. Coconut collaborative plain dairy free yoghurt, blueberries.  My total carbs for the day were 41 minus the fibre of 10 meant 31 net carbs which is a good starting point to see how my body can manage whilst getting into ketosis. Hopefully I can increase this slightly. I had my full allotted protein, fats and calorie amounts. 

The Visible app recognised my body is out of balance at 2/5 this morning. I tried taking it easy but it didnt make much difference, my heart rate was soaring even whilst resting on my bed and went through the roof every time I sat up, stood up and attempted anything. My pace points by the end of the day were 25 - thats 10 over  my safe limit.

Urine test strips indicated no ketones so far. I have ordered a ketone breath monitor as well, which arrives tomorrow. By late evening I was ravenous and this combined with flu symptoms plus constant hip pains kept me awake most of the night. I only had 4 hours sleep.

Day 4

Still experiencing rough flu symptoms, no energy etc. No ketones showing yet.

Todays breakfast/lunch was eggs, bacon, tomatoes, mushrooms with pk allowed fats. I made the mistake of using some coconut oil and it was pretty unpleasant. I struggled with the amount of oil/fat with this meal and felt nauseaous as a result, but still ate it all. We attempted making the PK bread with ground linseeds, its very easy to do, but is wasnt cooked at all inside after the hour, so we gave it quite a bit extra time. It doesnt have much taste but Im sure it will do for soaking things up, I think the addition of herbs and spices might help. I do like the crispy crusts on it. 

Tea was a tin of tuna with beetroot, sauerkraut, kimchi, avocado, mayonnaise, olive oil, followed by CC yoghurt, linseeds, almond nut butter and blueberries. My total carbs are 40 today, but fibre is 25 making only 15 net carbs, I managed to meet all my other macros as targetted.

As my pacing points were extremely high from having a short sit down shower - 9.5 points which is worse than usual. I have no choice but to lie down for the rest of the day and try to avoid going too far over my limit, esecially as yesterdays were high. I will likely experience repercussions tomorrow. Its 7pm now and my points are at 19.5

This evening I am in ketosis, ketones of 3 showing on my urine test stick. I thrilled that Ive got this far with a migraine this time.

The ox bile at 90 minutes following my largest meal seems to be working well.

I hope you are enjoying my intentional camera movement photos of ribbons, all shot from my sofa, resting a camera on my knees. Its the only photography Ive managed lately, fingers crossed that I will manage more soon. In the meantime Im thinking of creating some watercolour textures and brushes.

Day 5

I had a rough nights sleep again and I am unsure if this is anything to do with my change in diet. I had horrific nightmares which I dont tend to have normally and hip pain around 6-7/10 all night, given these are both new things since starting this protocol I thought I would note them. The hip pains ( both) has not been an issue in recent years, although it was a lot when I was younger ( my 20s & 30s). I am curious to see if it settles once my body is stabilised on this diet. I had forgotten about reintroducing whole tomatoes into my diet and this could be a causative factor of pain, given that when I was on a lectin free diet it reduced most of my pain. I havent eaten whole tomatoes more than a couple of times since, but have had passata or tomato purree in meals occassionally - with seeds and skin removed this reduces lectins, and if pressure cooked removes most too. I will stop eating these just to see if anything changes as my body is hypersensitive to various foods and I do have multiple chemical sensitivities. I woke with flu symptoms quite strong again, with lots of issues around swollen glands in my neck, very sore throat, headache.  Another new thing to me since yesterday is an uncomfortable feeling as if I have cystitis, possibly due to the changes in my body chemistry, I am drinking a lot more than usual - 4 litres yesterday as I was thirsty, thirst is a common sign in early days of this diet.

My breath ketones are 6 on waking and urine test says no ketones.

Interestingly my body is tolerating being sat up this morning and my heart rate is stabilising between 60 & 70 with my legs up too, which is great for resting and hopefully today I can pace well whilst my heart rate isnt too high.

Todays breakfast was fried bacon, eggs and mushrooms with some fried PK bread which crisped up nicely - it tastes much better fried. This evenings meal was chicken cooked in coconut oil and lemon juice with pesto, plus sauerkraut and peashoot salad in olive oil and lemon juice followed by CC yoghurt, flaxseed, almond butter and raspberries. All my macros are pretty much spot on and total carb intake is 30 today.

 Ketones through the breathalyser were 6 this afternoon, 6 at 7pm and 13 at 10pm. 

 Still extremely fluey this evening with a mild migraine and all the usual M.E symptoms. I have had less hip pain this afternoon and evening.

According to my Visible app my heart has behaved itself today, I can sit up without over exerting myself, as of 10pm I have ued 14 points, so I have been able to pace properly today.

I managed a little ICM ( intentional camera movement ) photography from my bed this afternoon, I'm feeling very inspired to create more abstract images. ( see below) The colourful abstracts above are ICM photos of ribbons taken a few days ago.

 

Day 6 

The keto flu symptoms continue today along with a headache, but I did sleep a bit better last night.

I remain in mild ketosis - breath tests 8 on waking, 8 late afternoon and 13 late evening, urine tests just a trace through the day and 1.5 in the evening. 

I have continued with a similar choice of foods as in the previous days, keeping all my macro measured out. I'm drinking closer to 4 litres with some sprinkles of sunshine salt added to help me stay hydrated.

I actually managed to get out for 3 hours today, my first time doing some light photography in Newcastle in about 2 years.  I did some simple ICM images to try and refrain from using too much energy, all sat on my mobility scooter. This did push me over my pacing points for the day ( 23), but I paced myself well and it distracted me from all my symptoms, plus Ive needed to get out and do something fun for a long time. I am feeling it this evening already with worsenning M.E symptoms of PEM, brain fog, pain etc. Although I did feel that I had the stamina to take photos whilst out, which Ive not had very often in the last 18 months, this could be partly down to adrenaline and the joy of actually getting out - and seeing people Ive not seen in years too. The next couple of days will need to be strict rest days to recouperate. 

- later on day 6 - I started with muscle cramps in my legs, stomach muscles, arm muscles, up by my ribs, and peculiar twitches in my muscles that felt like electrical impulses, these progressively got worse over a few hours. I assumed that maybe I was a bit dehydrated, I had drank over 3 litres during the day, but still I decided to drink a litre in the next couple of hours but I started feeling extremely ill. My ketones were 16 so I did not think this was the issue, but with the cramps I thought maybe electrolytes were unbalanced, as a result of the new eating plan etc. So I had a multi vitamin and mineral tablet and kept drinking. Then I started shaking uncontrollably, very much like a riggor that is experienced with a very high fever, but I was not hot, I was frozen. This got worse until I was shaking violently. I ended up ringing 111 for advice and was advised to get myself along to A & E, where I ended up overnight as a minor medical emergency. It looks like it had been partially down to some electrolyte imbalance, my sodium levels in particular were low - even though I had been supplementing with sunshine salt. I had drank so much thinking I might be dehydrated and that likely exacerbated it. From there the Dr expressed concerns at the neurological exam that she carried out, suggesting I may need EMG muscle testing  to help determine what is going on  as the cramps have been an issue a few times this last year. I was told to see my GP within two weeks to discuss this and other things that cropped up. 

I was so unwell over the next 6 days, barely able to tolerate any time out of bed in the first few days. The twitches in my muscles continued for several days and it felt like cramps were going to start at any minute. My autonomic nervous system when into overdrive, with the least little thing setting off panic feelings - in my mind I did not feel panicky, but when this was contactly happenning I ended up in a state of high anxiety  for a lot of the week and meditation was not helping. Strangely my pain levels did an about turn and I've had barely any pain all week, more just discomfort - I dont think Ive had this little pain in about 4 years.  I decided to stop the keto diet, feeling 100% sure this is what caused or triggered the issues, plus I was incapable of organising meals or calculating macros as I crashed severely - if I went downstairs I had to crawl back upstairs, just a few stairs at a time. Even sitting up in bed made my heart rate shoot through the roof at first. So I ended up resting in bed more most of 6/7 days.

I have to say that after this experience I will never try Keto diet again, there must be some reasons my body cannot function or cope with it. I was so careful following the protocol to the letter. I may reach out to Dr Myhill with my experiences, as having electrolytes so out of whack that it causes such symptoms is actually a medical emergency, so I would like to hear her thoughts. I am not diabetic, although I have had two nurses inform me that I am diabetic in two completely different occassions, my GP assures me that I am not, it was simply that my results were off due to medical issues ( ie my gall bladder was blocked etc). But I cannot risk anything making me this unwell and causing a severe crash again. So just going to eat as healthy as possible. My Gp and already requested to see me - not surprisingly after 2 visits to A & E in a month ( I had an accident a couple of weeks ago with a head injury resulting in around 6 days of concussion).

The Visible app has been extremely useful in monitoring and helping me to pace this week. I have managed to stay within my 16 pacing points 5 days out of 7. The other days I have gone over were not my fault, as just sitting upright used so many points and one day eating a meal containing tomatoes and gluten resulted in my heart rate soaring - I had long since suspected tomatoes might be an issue for me and seeing this reaction in bodily signs seems to support my suspicion. 

If anyone is considering trying the paleo keto diet alongside Dr Myhills protocol themselves - I would definately  highly recommend a check in with your health team first and ensuring you have support. What happenned to me could easily have got worse rapidly, at one point I actually thought I might end up having a heart attack - at its worst it was terrifying, having full muscle cramps in so many muscles at once.

Its difficult getting help with M.E. and when we dont get any help we are forced into either accepting and having no life, or trying to research our options as best we can with our brain fog, and taking matters into our own hands in desperate attempts to feel even a little bit better. Its a ridiculous situation, which many of the M.E community hoped would improve once we knew that people with long covid were going on to develop M.E. too. Hoping for more research, more answers and hopefully solutions. I never give up hope. 

ICM of roses in our neighbours garden

Below are a few abstract ICM photos I took on my brief visit to Newcastle

Update from the last year and my latest plans

Following on from last Junes blog.

A brief catch up/summary

I did continue trying pacing using my heart rate, although found my chest strap to be faulty, then following some life events my focus changed for a few months, whilst I navigated some changing circumstances and emotional hurdles. But in the last couple of months I have come back to this in a different way - I will explain further along.  

I also tried cold showers for around a month which initially  gave me a kind of seretonin / dopamine high, but ultimately ended up causing crashes after the first week. For me, I know now I can use a cold shower to help boost my system for a one off event occassionally, to help me to get through it, but knowing I will pay the price afterwards. Maybe I can revisit the cold showers/dips in the future when my health is in a better state, but for now I cant. 

I have continued to meditate for 2-3 hours pretty much daily most of the time and I am planning to increase this to 3-4 hours daily for the next month as my stamina and symptoms are currently worse, I am hoping that the extra meditation will help with resetting my autonomic nervous system.

Where Im at now

 I would say that I am getting out even less this year than ever before and that has been hard to negotiate in some ways, although I think that both Michael and I have both accepted that this is the way it is for now and we just get on with it the best we can. We both know how much life can fluctuate with M.E. so hopefully it wont always be this way.  I find a lot of peace through  meditation and this both uplifts me and grounds me too. After pretty much a year of barely getting out or seeing people,  I have started getting out with a friend or two about once every 4-8 weeks, this used to result in me crashing and struggling cognitively after 45-60 minutes, but I have managed 3 out of 4 times slightly better in the last 4 months - I just need to go somewhere quiet, and test out acoustics as we have discovered this is an exacerbating factor too, otherwise my brain gets overwhelmed. I am slowly retraining my brain to cope with such things, although sometimes the simplest of things triggers a fight or flight response - which happened at the dentist, and luckily meditation stopped it in its tracks within minutes. But its not always appropriate to just stop and meditate.  I am still on an incredibly slow snails pace journey, negotiating ways forward that help my body and mind.

 Earlier this year I managed to give some presentations online and even created my first online photography tutorial. Cognitively it was extremely difficult - it was like  being in a permanent fog trying to find words, and I only managed by preparing copious notes over months and using these to read from, aswell as having help from a few friends to negotiate the various platforms and software.  So whilst I'm glad that I did these, neither will be something that I will repeat often, as the payback was severe and to actually complete these took everything I had, leaving no energy for anything else. But Im proud that I managed these considering my brain fog and cognitive issues, for me they are achievements, plus they served a purpose and helped me to actually earn a little, which was needed for purchasing a new mobility scooter and other things such as the Visible health monitor. But whilst good for my mental health, I feel that using so much of my energy on that actually had a negative effect on the M.E symptoms.

I decided to try the Visible health Garmin armband to assist me with monitoring, balancing and pacing everything that I do rather than just guesswork. This kind of follows on from the heart and HRV monitoring I did last year. But the app does it all for me. Visible health give a great explanation of pacing here - pacing , please do follow the link to understand better. Through using the armband it is hoped that we can find a good balance between under exertion and over exertion, stabilising our symptoms and health. If we can stabilise then we have a better chance of improving and most certainly a better quality of life. The band monitors our HRV daily and constantly monitors our heart rate, with alerts to assist staying within our own unique energy envelope.

Its early days yet, as Im still getting averages for various activities and have not determined how many pacing points I can use daily without crashing - I feel like Im almost permanently crashing.

I've found it hard to completely stick to pacing, because it means I literally have no life, see nobody, do virtually nothing and I often end up feeling quite low when I pace strictly. So I try pacing with doing a bit of what I love. But my body is telling me to slow down, stop and pace. I have struggled to just be out of bed and even just on the sofa for 6-8 hours a day lately. But Im going to try really hard to determine my pacepoints and stick to them no matter what. My plan is to read, meditate, listen to things, watch stuff I enjoy and try to do low energy photography or watercolour painting. It is looking like I may have POTS ( postural orthostatic tachycadia syndrome) - just from my monitor alone I can see how just sitting still on a sofa, even with my legs raised still results in a much increased heart rate and my blood pressure drops on standing up too. 

I also need to address some dietary issues, recently I discovered that my fasting cholesterol and triglycerides etc are high. I need to lose weight and have been trying on and off, but have not managed to lose weight in the way that I used to prior to the menopause. Ive made a few changes, introduced plant sterols, swapped out a few foods and introduced things like oats, apples, apple cider vinegar, kimchi, more fish, healthier fats and less saturated fats. Slowly making changes means that I am more likely to stick to them. Ultimately losing weight is the next biggest change I need to make - a further 2.5 stones to lose, I have lost 9lbs. Im reluctant to start medication and really want to address  it all with diet, although my nurse has said this is unlikely to make a difference. I like a challenge. 

I have decided to try Dr Myhills protocol of a paleo keto diet with the basic supplements plus bolt on extras   as I have Hashimotos/ Hypothyroid. Im spending the next week or so preparing fully for this, awaiting delivery of the supplements etc and ordering in shopping. Dr Myhill has dedicated 40 years to the care of people with chronic fatigue syndrome. She goes far and above any NHS approaches. I have followed her work for over a decade and have tried her approach before but could not tolerate the keto diet - it caused lengthy migraines etc. I feel I was not fully prepared previously and I now know that part of the reason my body struggles with it is down to my thyroid, and having no gall bladder and its going to be harder because of that. It has become even more important for me to try the paleo keto nutrition plan considering the addition of POTS and also a more recent high likelihood of Parkinsons ( GP  has referred me for a further assessment and recent testing so far was positive). This way of eating has been shown to help with so many health conditions, putting many into remission or recovery, including chronic fatigue, POTS, Parkinsons help reduce cholesterol issues and many other conditions including cancers. I cant see why I would not try it again, with more determination, I just wish that I had medical back up - our local NHS dieticians dnt recommend it and my M.E. clinic cant get funding for a specialist nutritionist, although they have tried. So Im out on my own, but with the wonderful Dr Myhill kindly helping thousands of people like me by giving her information freely online. 

Its going to be a rough couple of weeks starting off as keto flu is real, add that to M.E and its not exactly pleasant, and I already know that I get migraines starting this. I am not looking forward to feeling even worse than I already do. But Im determined to do everything in my power to get well. Sometimes you need to get worse to get better. Plus I have a serious sugar addiction thats hard to stop!

The next couple of months are likely to be quite quiet ones for me, but Im going to embrace this and look for the positives in it all. We are all on a journey and constantly learning, It is going to be a time of listenning to my body, to nature - via our wild garden and what the universe decides to place on my path. I am grateful that I have people that I love and cherish in my life, and I am so very grateful for their love, kindness, empathy, patience. Hopefully if I can stabilise my symptoms and health then I can spend more quality time with those special people.

I have a few ideas of how to occupy my mind whilst in a rest and recouperate phase - reading, watercolour painting, meditating, short phone calls/facetimes

So here is a list of exactly what I am going to be trying ( according to DR Myhills protocol)

Paleo keto diet 

Good quality multi vitamins and minerals

Essential fatty oils - Hemp seed oil + Veg EPA caps - alternating

Vitamin D3 10,000 IU plus sunshine if I can get in the garden

Vitamin C 5g plus to bowel tolerance in 1L water morning

Lugdines Iodine 3 drops in water at night

5g Sunshine salt on food daily

High quality CoQ10

Magnesium

Acetyl L Carnitne

Niacinamide

Vitamin B12 sublingual

Epsom salt footbaths

Home made bone broth

D Ribbose as a rescue remedy in crashes etc

Alongside strict pacing, rest, attempting to get good sleep, avoiding stress, practicing breathing exercises and meditation

I have tried much of this in the past but never all at the same time, I got close to it but my stomach constantly revolted. Fingers crossed I can do it this time. This time Im starting with the nutrition first.

If you are interested in learning about how the paleo keto diet can help with health conditions, or Dr Sarah Myhills fantastic work then there some links to read  below. Please dont send requests asking me for details of dosages, Im following Dr Myhills protocol - its all on her pages. This is just a blog giving my experience of life with M.E. and sharing info that I find along the way. It is up to you to research and make your own mind up on what is best for you and your individual circumstances as our bodies are all so different. Follow the experts advice :) 

Dr Myhills main page

overview of CFS protocol

Targetting mitochondrial dysfunction in the treatment of chronic fatigue syndrome

CFS and mitochondria dysfunction

if you struggle with reading then maybe some of Dr Myhills videos will help

Dr Myhill & paleo keto diet for CFS/ME

Dr Myhill on paleo keto diet for CFS/ME

the importance of mitochondria

75 youtubes with Dr myhill

Heart rate pacing and resetting my autonomic nervous system

 

HEART RATE MONITORING TO PREVENT POST EXERTIONAL MALAISE

Recently I have spent time reading about how monitoring your heart rate can help with pacing activities in people with M.E. / CFS - at least with physical activities, possibly not so much with mental, psychological and emotional activities but its a start. There is science behind this and whilst I have read a bit, I have been struggling with my cognitive functioning and reading/taking on board lots of information, so I have just read shorter bits, tried to digest it and gone back for more when I could. Writing this blog is serving a dual purpose both as blog to share but also as a kind of journal for myself, somewhere to keep my information, experiences and progress, so I can put my info together to help me to make sense of things when my brain is struggling to  retain or make sense of things. So I am summarising what I have read and understood here, adding in links for myself and others to refer to. 

A Red Admiral gathering nectar on our Ceanothus bush

Before I start with sharing I want to say that I am not a medical expert and that anyone reading this, intending to try these techniques should  research everything for themselves, look for sound medical evidence if you can find it and discuss with your medical healthcare team ( Dr / M.E. specialist etc) first. I am still reading up around this and attempting to do this all as safely as possible. I do have a background as a nurse and know that I am not doing anything dangerous in the short term - there are waiting times for M.E. clinics and I do intend to discuss this with the M.E clinic that I used to attend, but it could be several months or longer before I can do so. I find that you can generally get good information on this specialist M.E. websites rather than sites designed for people using HRV monitoring for physical fitness. I learned as a nurse that there are many people who have  vital signs and blood results that are outside of normal guidelines, this is not always a reason to panic, but can be a reason to book in a consultation with your health professional just to ensure there are no issues. Guidelines are simply that - guides. I do highly recommend discussing trying any new M.E management techniques with your specialist or dr.

                                                     Love in a mist from our garden 

For anyone new to M.E - we have an intolerance to exertion, even mild exertion ( physical, psychological and emotional) can result in severe consequences in the form of symptoms - generally one of the best known ways to manage M.E is to pace all your activities - literally everything you do - physical, psychological, emotional, all broken down into shorter manageable tasks spread over the day. We are supposed to find our baseline of what activities we can manage daily without causing the worsening of symptoms, this is different for each person and can take a great deal of trial and error to work out. We are advised to stay within this baseline for most of the time and only increasing activities incredibly carefully and slowly, because extra activity can cause symptoms which are totally out of proportion to the activity undertaken.When I mean out of proportion - this can mean brushing teeth or showering can leave a person with M.E feeling like they have climbed Ben Nevis ( a 4000+ ft mountain) or worse. 

Red Campion in our garden

We are advised to "listen" to our body, to help us determine our baseline, so any adverse signs and symptoms worsening should alert us to be aware that we may be pushing past this baseline. Its not easy to do, even after 18 years I still get it wrong. Then you get to a point where you have done well, felt a bit better and in the excitement of feeling semi normal you try to do things that you miss out on doing most of the time, pushing way past your baseline, with awful consequences and "crashes". It has been suggested that heart rate monitoring can help us avoid such crashes, acting as a tool to aid us in keeping within our baseline of activities. This is where heart rate monitoring comes in.

                                                 Red campion in our garden this month

The Anabolic threshold ( AT) is the point at which your heart rate goes beyond the limit where your body starts drawing on reserves which we simply do not have, consequently triggering post exertional malaise and worsening of symptoms. There are several ways to determine your own specific AT using different calculations such as  ones on the various M.E. websites, they do differ slightly. The AT for a healthy person differs from people with M.E, so you do need to work it out using a specific calculation for M.E., it is estimated the people with M.E have an AT that is just 50-60% of a healthy person.  You can sometimes get help to determine your AT through your DR, some people find theirs during cardio pulmonary testing and other tests during investigations into various symptoms that frequently occur alongside M.E, such as POTS. If stuck with this aspect it could be worth discussing with your Dr.

This article explains really well what PEM is, how to calculate AT if you have M.E and using this to help pace and prevent worsening symptoms. Using a Heart rate monitor to reduce PEM

Another article explaining AT and preventing PEM Using heart monitor to prevent PEM 2 There are lots more articles explaining if you google. 

I calculated mine using  different calculations. Results suggested 99, 82.5, 103, 86, 92. I have decided to start out using an AT of 90 to start with and I can adjust this over time depending upon results.

Cuckoo flower amongst wildflowers in our garden this June

At the time of starting all this I had ordered a cheap smart watch to monitor my heart rate as I figured that would do initially, knowing I could periodically take my own pulse quite easily to double check its accuracy. However, as I read more I realised that a reliable chest strap  heart monitor would be a much better idea, this was due partially to reading up on heart rate variability and how this can be yet another tool to assist me. I will discuss heart variability further in part two of this blog as I am still looking into it and wanting to concentrate on using AT first, plus I am also in the midst of a week of cold shower and deep breathing  so cant take on any more. But for anyone with M.E. who is finding this interesting I would highly recommend investigating HRV as well. 

Iris sibirica in our garden this June

The heart monitor I am using is a Magene H64 chest strap (£20) - it has 4 star rating from over 1334 ratings on Amazon so must be reasonably reliable and functional. I have checked the readings against my own pulse taking and found it to be correct each time. Although a couple of times my heart rate recorded on this was 20-30 beats higher than that recorded on my smart watch (which is also reliable up to now), I was not quick enough to check which was correct. There are some issues which can cause a heart rate to be faster than the pulse at the wrist, something I need to investigate. I do have an issue with occasional arrythmias, which has been investigated by cardiologists previously, possibly something that needs further investigation now.

                                                   Iris Sibirica in our garden this month

The smart watch that I am using is a  cheap Blackwatch smartwatch (£20), 4.5 stars reviews from over 5000 Amazon buyers, so guessing its fairly reliable too. Again, my own testing shows its within a few beats when I check my pulse manually. I'm  in the process of trying out a few different apps on my phone alongside the monitors, one for my phone which is Gloryfit - it monitors  sleep, heart rate, temperature etc. For the chest strap I am currently trying 60 beat monitor app where you can type in the heartbeat count where you want an alert to remind you to slow down and rest. I find the alert useful and not too noisy when outdoors. Sweetbeat HRV is the other main app that Im using as it gives numerous readings from the chest strap, including hrv, but I cannot work out how to get an alert when reaching my AT. 

                                                  Stitchwort in our garden last month

There are numerous free apps and a few paid for which can be used. I am interested in a couple of  specific apps, which I'm investigating - WATCHME and Welltory - both recommended by people with M.E. 

 So far this week on days following  where I have kept the total time above my AT to an 90 minutes or less I have felt much less PEM, where on the 2-3 days following  where my heart rate has been over my AT for 2 hours or more I have experienced more PEM and symptoms. Obviously I am only at the start of this new AT led pacing journey, so it will be interesting to see how it helps me. I have discovered that my heart rate frequently seems to be around 120-155 at night whilst sleeping, this can occur for a total of an hour of my sleep/overnight resting time, I may chat to my Dr about this during my next appointment to see if it needs investigating and find out what I can do to help lower it during sleep. I already meditate morning and night, as well as keep stress low, I am unsure what else I can do to help get my sleeping heart rate to normal.

So far this week I have made adjustments based on  when my body reaches its AT, when I brush teeth I go slow, and sit down as it always pushes my heart rate to 120. Even putting make up on, kneeling in front of a mirror takes me to 110, so I now sit on a bed to do it. Showering takes my heart rate to 140-150, so we finally bought a shower stool and I just shower very slowly, sitting down for most of it. Washing or drying my hair both result in major heart rate changes, as does anything involving lifting my arms above shoulder height. I change the position of my arms, trying to keep only hands above shoulder height as much as possible. As its summer I will avoid drying my hair ( unless going somewhere special) if it pushes my heart rate over the AT - be prepared for super wavy hair if you havent seen my natural waves! Walking upstairs usually leads to a heart rate around 120-130, so I go super slow and sit down once or twice as I need to. I am using  a stool in the kitchen more and walking very slowly more often as both help keep me within my AT. Lots of little adjustments

Pep Ventosa style image of Bleeding heart plant grown in our garden

Resetting my autonomic nervous system

Another benefit from getting the chest strap heart monitor is that I can also visually see any benefits from all my work on trying to reset or help my vagus nerve, and push my ANS into parasympathetic mode. For people with M.E. who frequently find their body is permanently in fight or flight mode ( sympathetic in the autonomic nervous system ANS)  it may  be beneficial to try to stimulate the vagus nerve which can in return push our body into parasympathetic mode which is rest and repair. 

Physios for ME are currently researching Transcutaneous vagus nerve stimulation in people with M.E. , it will  be interesting to see results. They also have a video regarding Heart rate monitoring  Physios for M.E on Heart rate monitoring 

There are many ways to stimulate the vagus nerve, but do please take care to look into this properly and take all safety precautions. I have been advised in the past to use various methods to assist with my heart arrythmia, by cardiologists, such as plunging my head into cold water and gargling - both stimulate the vagus nerve. Meditation, chanting and singing, spending time in nature and journaling are all thought to help. 

My morning routine of meditation is largely to help me in this area and does often include deep breathing or chanting. So far my apps rarely show any parasympathetic activity, but when they do at least I will have an idea of what has helped. This last 6 months or longer I have been religiously spending 2-3 hours a day meditating, usually a couple of hours in the morning and some time prior to sleep.

This past week I have also been looking into using a TENS machine to stimulate the vagus nerve as well as checking out cold water therapy, ( cold showers) and the Wim Hoff deep breathing techniques. 

 

I am going to try all of these and have already commenced my first week of cold showers - day 2 today, but I will leave discussing those to my next blog/journalling. 

Next blog - Cold showers, deep breathing. 

M,E awareness 2023

 Oh joy! Multiple chemical sensitivity rearing it’s head again, it’s like sudden hay fever on steroids but with a fever and feeling more like flu. At least it should settle within 12 - 24 hours. Another one of the joyous symptoms of M.E. - the 18 year adventure of never knowing whether I will manage to even get out out of bed, and shower more than once a week, see friends more than once every 2-4 weeks, not knowing whether my brain will work from hour to hour or how much pain I will be in for unknown reasons, or how my body will cope with the tiniest of fluctuations in temperature, with my lymph glands swelling up around my neck and under my arms, constant sore throats, sleeping problems, memory problems, random reactions to food, vision problems, orthostatic intolerance ( my body does not take well to being upright) and of course the unrelenting exhaustion. For all those who assume M.E. is not real - as an ex nurse I never truly understood it and still after all these years don’t fully understand why all these symptoms occur, because research is so under funded, and it can be so unpredictable at times, but believe me - this is real - all those symptoms mentioned above I get pretty much constantly, and many more. It has robbed me of a career I worked so hard at, hobbies that I love, and such precious times and events that most take for granted. Because we have brief windows of time where we can push through and “appear” to manage normal life for a few hours we have to put up with disbelief. Because nobody but our loved ones at home see how we suffer, unable to manage to simplest daily tasks at times, with consequences lasting days/weeks/months.

For a better understanding of M.E and its symptoms follow this link What is M.E

May is M.E. Awareness month.

I often dream of what my life could be if I could be well again, I would give anything to be well, even now I practice meditation two hours a day and work on resetting my autonomic nervous system daily in hope of recovery. I dream of being able to walk more than 100-400ft in nature without having to plan a route on my mobility scooter to ensure that I can be safe, or even be able to plan a few hours out with loved ones without letting them down or having to plan out accessibility. I dream of being able to work in various dream jobs and of having holidays. There is so much that I want to do with my life, that I have been unable to for so many years, from the very simplest of thing like spending time with people enjoying life to the many things that I am passionate about.

None of my friends really see me unwell, I hide it , I even try to hide bad days from Michael or Effie when I can because I do not like them to experience the burden, if I cry then I usually cry alone - rarely ever letting anyone know. I am not depressed, I actually rarely cry these days as I try to see the good in each day ( maybe a couple of times a year there might be tears), but I am human and yes, yesterday I did twice, alone out of pure frustration, with nobody knowing because it means nothing in essence to anyone else - because other things take priority in daily life as this is something that is not new - we are expected to simply adjust and get on with it. There are other much more important pressing things going on in life and that is just the way that it is. There are just times in life that we have tears alone then just get on with life. But it can get hard at times when your body simply does not do what it should and the result is that you are managing very little day to day. Even when you try to be positive and make the most of what little energy you have, nobody can claim that a life spent barely existing, lying in bed and sat on the sofa is a fulfilling one, particularly when you have an active and intelligent mind. When your brain cannot cope with Tv, bright lights (sun), noise or even reading - what do you do? It can get mind numbingly boring. For me this is where meditation comes in and helps me a lot. Meditation is what has got me through the last few years, particularly this last year.

Tonight I lie here with my body on fire, full of allergy like, flu like symptoms - if you see or touch me you cannot deny this is real, I am burning up, with a streaming nose and feeling short of breath, my glands are like huge puddings around my neck and my whole body hurts - particularly around my neck, throat, face. I’ve struggled to get up our stairs all this week, more than usual. I’ve struggled to shower twice in 6 days - how embarrassing is that to admit!!! I cried twice yesterday, firstly during the sheer hell of trying to dry my hair after a shower, then after showering I attempted to sit in our garden and take some photos of flowers to cheer myself up and relieve boredom — I literally could not manage even with my camera on a tripod, I ended up drenched in sweat - unable to shower again to cool down and feel fresh, knowing I won’t be able to shower tomorrow or probably not the next day either. Imagine not being able to shower and wash when you want or need to! It’s horrifying, and extremely embarrassing as well as distressing. Not that I see anyone to be embarrassed in front of because when you have M.E. to this degree you just don't see people much, friends and family move on and get on with their own lives. I no longer have a single close friend. I have lots of friends if I go out - but I don't manage going out very often and those friends simply do not reciprocate me reaching out outside of boozy nights out. Yes, thats embarrassing to admit too, but its very common in people with M.E., because we are so unreliable due to the illness. Plus moving around the country has not exactly helped my friendship situation.

Why am I telling you all this?

It’s M.E. Awareness month - the one month where I am fully truthful about this illness and how it has affected me for 18 years. At a time where long covid is now causing huge numbers of people to get ME we finally have hope that research will be better funded and that a cure will be found.

Do not forget the #MillionsMissing from normal life due to M.E. - so many do forget us, so many friends and family gradually fall away - it is a lonely illness. There are not many illnesses that you could have for 18 years with the NHS saying they can do nothing to help you. Yet it’s symptoms are comparable to the most severe of illnesses - even heart failure and cancer, it’s unbelievable that we are still treat like it’s a psychological illness despite all the research proving that it is not.

That’s enough of me on my soapbox, and being extremely vulnerable. Its not easy sharing all of this and I do not want any sympathy at all, I work extremely hard on making positive stuff happen in my life, but the purpose of this post is being truthful, real and raising awareness. What I want is for people to understand and not judge, for people to care and for people to realise that we cannot simply exercise and think positive to get well.