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.

2022 so far, the impact of poor health and missing friends

 This year up to now has been a real struggle for me with the M.E. I feel that over all my symptoms have been worse and I have managed getting out less which reduces my quality of life. I have been in a cycle of trying to stick to eating the limited foods that don't appear to make my symptoms worse, then slowly introducing other foods, but after a while I always have to go back to a restricted plant paradox regime - mostly for pain reasons. It is not always apparent which foods cause me pain, but we think maybe it is a slow build up with some foods. The problem being that with my level of exhaustion it is near impossible for me to sustain the plant paradox way of eating for long, mostly due to the sheer amount of work involved in preparing and making the food - I simply cannot do it due to my exhaustion . 

So I find myself stuck eating a semi plant paradox diet with pain levels creeping up to unbearable at times ( and quite often this year). Its a hard situation to be in when you know eating a certain diet can reduce pain and other symptoms but not being well enough to make that food, but also not really being sure which foods are exacerbating symptoms. I have asked for a referral to a dietician for help with trying to work out problem foods but that was last year and nothing has happened so will be asking about it at my next GP appointment

 I am also experiencing tender swollen glands in my neck more frequently and to a much worse degree for most of this year - it used to be just one but its now mostly 3/4. As well as swelling around my eyes which seems to come and go with no apparent reason, - no signs of infection or allergy, mostly in the area between my eyebrows to eyelids which is odd, this usually accompanies the pain I get across both cheekbones ( this frequently appears to be made worse if I eat certain foods). I frequently wake feeling like I have been punched across the face and neck. Today I have a new symptom of swelling across knuckles in one hand and aching across knuckles in both hands. It feels like my body is reacting badly to something and its not pleasant. On top of all this Ive had what I think may be the start of gout over the last few months too, although my blood tests do not indicate gout, its still possible thats its in early stages, or as my GP thinks possibly arthritis ( it doesnt fit the pattern at all)

Exhaustion levels are very high, and this is made worse by sleeping issues that are common to M.E. Cognitive problems are also a major problem - a half hour conversation can leave me wiped out.

I do think i might have found a CoQ10 that seems to be giving me a little bit of energy, but it has also been causing some stomach issues, Im trying having it with food to see if this helps - fingers crossed. 

Now all this may come across as me being very negative, whilst in actual fact I do not dwell on it, I try to occupy myself each day with minimal exertion activities that make me happy, distract me from my symptoms and attempt to be productive ( sometimes to my own detriment). I am simply documenting it here partly as a record for where I am at and for comparison in months or years to come, as my memory is poor - and as a record for raising awareness of what it is like living day to day with M.E. Whilst I have not been managing my trips out to local country parks etc maybe once or twice a month lately, I have occupied myself with getting back into watercolour painting earlier in the year, which has been very enjoyable and therapeutic. I have been reading a lot and watching youtube videos on various topics such as painting or photography as well as meditation videos.

 I have been trying to do photography in our dining room - mostly macro, floral or still life, but this is truly exhausting and I struggle to limit myself to only short spells as I get so absorbed in it. I have pushed myself a bit far with it in recent month trying to put together a set of images for a time limited project, but recognised my limitations and pulled back, trying to pace myself better. I have been enjoying zoom webinars with online groups such as camversation and sheclicks - these are a massive positive outcome from the pandemic. I also facetime my daughter more often too. 

I have really struggled with nights out ( which was the only time I saw friends) this year for a couple of reasons, firstly the sheer exhaustion just in getting ready for a night out is enough to wipe me out, but on the rare occassion that I make it out I have struggled having conversations with the background noise, and whilst I love seeing bands and enjoy the music so much - it was making me so ill, the impact on my health was not worth how ill I felt in days following, I was getting to see bands and friends but not really having much in the way of meaningful friend contact as I struggled to converse so much in that environment. Added to that my body and brain appear to be having an adverse reaction to alcohol - another thing i think I may have to give up or only have minimal amounts on special occassions if I can find something that does not cause this reaction. As it is I rarely touch alcohol this year. I have managed a weekend away at a bike rally with friends, but did need to rest a lot in our tent. I struggled with the lights and noise at the front of the tent but managed better further back - and found wearing sunglasses helped! It was wonderful to spend some time with friends. We also managed a weekend away with friends and family which again, I spent large parts of it resting in our van/tent, but still had a fantastic time. 

With all that serious stuff out of the way I have still managed to make some positives happen this year, as usual with my photography. I have had a few good results and awards - just shows what you can achieve with photography mostly done sat at a table at home. 

2022

October 2022 1st place IGPOTY still life project + 2 commended

August 2022 2nd place in Amateur photographer magazines Close up competition with "The Kiss"

August 2022 Notified that I won Photographer of the year with the NPS ( National photographic society - 3rd year in a row)

August 2022 3rd place in IGPOTY Macro category

August 2022 4 images Shortlisted in Amateur photographer magazines Close up round

January 2022 Shortlisted in CUPOTY Challenge - Two of a kind with two images

EDIT - this has been written and updated over a couple of months. Its October now and Im barely managing self care at home, the exhaustion is severe, cognitive functioning is dreadful, the neck gland swelling and eye swelling almost constant. I commenced HRT about a month ago and really feel my body is totally overwhelmed by it - Im hardly out of bed 6-8 hours a day. So will be reviewing it with my GP. I am trying to have a mostly low lectin and low or no dairy diet where possible. But as of this last month or so I feel the M.E. is almost the worst its been in the last 5/6 years. It could be linked to the menopause or HRT, time will tell, but Im very strictly pacing myself.

Further updates and lots of good news

 So from my last post I was struggling too much to stick with all the supplements as they were causing so many awful side effects that I could not tolerate. Taking about 25 tablets, powders, oil every day plus living on such an incredibly restrictive diet simply was not worth it in the end for me. I came to a point where I just could not do it any more. I stopped all my supplements apart from CoQ10 and started eating a much more varied diet - but with minimal dairy and gluten to start with. The side effects from supplements stopped and to start with I was not getting increased pain despite eating more foods. But my pain levels have slowly increased - although I just cant for the life of me put my finger and which foods make it worse. Still my pain is definitely a lot less than before all of this. I do try to eat a lot of meals as I was whilst following the low lectin plan - such as scrambled eggs for breakfast, or choosing low lectin or gluten free options.  I am disappointed that no other symptoms improved and disappointed that it cost so much money to not get very far with improving my health when I tried so hard, and Michael put so much effort into cooking and shopping, but it is what it is. For now I will continue being careful with my food choices, attempting to keep lectins and oxalates lower but its not going to rule my life. 

Above - my Beauty of nature winning image SWPP

I would say that over the last few months I managed less than I was prior to starting the regime and I have been trying hard to slowly rebuild my activity levels. This has been hampered by an ongoing trapped nerve affecting my neck and shoulder, and more recently getting Covid. I am currently still recovering from Covid but know to build things up slowly and count myself  incredibly lucky not to have had it as bad as so many others.

Above - my 2nd place image in SWPP Beauty of nature competition

 One thing I have kept up from the regime the nutrition therapist suggested is mindfulness and meditation. This has become a very pleasurable part of my day and I can spend up to 2 hours a day meditating. I do find that it helps with pain and helps me to be more balanced and positive.

This summer I have put the rest of my energy into my photography as usual, this time creating still life images in our dining room and today I reaped the rewards of my time consuming efforts. Sometimes it could take me hours or days to create an image, slowly setting compositions up bit by bit and going back to it after a rest or maybe the following day, then getting lighting right one light at a time. It kept me occupied while I wasn't getting out and distracted me from the M.E symptoms and side effects of supplements. It was a great way to slowly learn how to do still life and I was happy to win a gold for one of the images with the SWPP and NPS. But that does not compare to todays surprise. 

One of my main aims was to be placed in the IGPOTY ( International garden photographer of the year) still life project for a 2nd year ( I had an image highly commended last year). Today the winners were announced and I feel incredibly honoured at having my images awarded 1st place, 3rd place, a finalist, a highly commended and 2 commended!!! Yes, you read right that was 6!!! images placed - I could not have imagined that in my dreams and was quite shocked but thrilled. It feels like a very special achievement to me. You can see all the winners here - IGPOTY Still life winners

Strangely this has occurred on the same day as another project I've been involved in, which I believe is fate as the publicity from the above may well help  with this. Last year I approached the M.E. association with a proposal that I supply them with images for free to enable them to create products to raise funds and this has finally resulted in the release of two calendars plus two sets of cards/notelets created from my photographs. I am very proud to be involved with this and will be encouraging people to buy them. They are themed as Animal magic and Flower power. So hopefully my success with the IGPOTY and any resulting publicity might help prompt extra sales if I can direct people interested in my work to the M.E. associations online shop. There is also a little bit about me in the M.E Associations magazine. M.E. Association website

Yet another bit of good news from my photography arrived this week, I  came first and 2nd in  the SWPP Beauty in nature competition  - totally unexpected and a lovely surprise. What a week! Very uplifting for sure and motivating me to keep slowly pushing ahead with my other projects and competition entries. I am now working on pulling together a portfolio and still aiming to produce images for a fellowship. Beauty of nature

Update and side effects

 07/07/21

 I have continued on with the protocol as outlined in my previous blog and very slowly increased MCT /C8 oil - but it has knocked me for six - feeling extremely nauseous to the point where I am not managing my full suggested calorie quota every day, dizziness for most of the day, stomach ache and cramps and swollen glands in my throat/neck. Exhaustion is  extreme and energy extremely low, meaning I am managing less than my usual. Brain fog and other symptoms persist. My whole digestive tract is uncomfortable with bouts of loose stools. I am trying to persevere, hoping this will settle down but feeling close to packing it all in as I am pretty fed up with almost constantly feeling worse. But the things keeping me sticking to it are the hope that I have a possibility of improving my health and quality of life, knowing some treatments can result in feeling worse before feeling better , looking at the long term goals - but at the moment I feel that life is passing me by this summer, with me hardly getting out 2-3 times a month whereas before I was getting out 4-8 times a month. Trying to stay positive and optimistic, enjoying our garden, doing meditation and doing some tabletop still life photography.

 Hoping the side effects settle so that I can try a ketogenic diet properly, supported as it is supposed to help a lot of people with energy levels.

 Its all such an expensive option following this protocol with costs for tests, nutritional therapist, about 20 tablets a day plus, oil, and a couple of supplements in powder form added to my drinks and food, then then specialist diet. It adds up to hundreds and so far I have felt worse for most of 3.5 months, it is sapping my mental and physical energy, despite my determination and huge efforts to remain positive, focused and sticking rigidly to it all.

 Whilst my pain is massively reduced and less frequent, this was something we feel we had largely tackled ourselves by working out that the low lectin and low oxalate diet gave good results. Although further advice helped us work out with foods had higher oxalates. The problem is that my diet feels so restricted and is going to be very hard to stick to long term.

I am still incredibly grateful that I have had the opportunity to try this option and have not given up yet. I had to try it - given the chance of getting better.

UPDATE 13/07/21

Another week on and side effects have reduced, glands only a little less swollen, sore throats reduced again, nausea reduced lots, stomach ache comes and goes, loose stools less of an issue, but fatigue and exhaustion are severe, energy is extremely low, hardly managing to keep up with my baseline pacing. Brain fog has eased temporarily for a few hours twice in the last week, other than that remains the same. Struggling to get off to sleep at night but sleeping through apart from when woken by pain from the trapped nerve in my neck.

( Warning below contains open details re menstruation - miss paragraph if you do not like to read)

I should add that the exhaustion/fatigue/low energy could also be worsenned by another health issue that Ive experienced this last month - extreme menstrual blood loss of over 700mls ( measured using a menstrual cup - which apparently equates to around 250 mls actual blood and the rest other fluids)  in the last week which is highly abnormal and has been pure hell! My DR is convinced this is caused by the second Covid vaccine ( she has seen it happen lots to ladies following their 2nd jab) that I had about a month or so ago, this is my first proper period in 6 months as I am going through peri menopause and it has lasted 26 days so far - the longest and worst in my life. Ive had bloods taken to check my full blood count and platelets due to the amount lost - and the bloods demonstrate that I have lost just over a unit of blood since one month ago, but luckily has not tipped me into anaemia - although the receptionist refused to give all the results ( I have to pick them up)  I have been taking iron supplement with vitamin C to aid absorbtion and a diet rich in iron, so I am assuming this has helped - there are other parts to a full blood count and platelet result that give a better picture of what is occuring - I will know once I have the full printed results.. I was prescribed Tranexamic acid to stop the bleeding and it has reduced it.

I know the above is not generally a subject we all talk about openly in public and some may consider it distasteful. However I am an open book and this is part of my journey, it is an important aspect of my health at present and I also feel that other women should be aware of this complication - I was not aware. It can be a scary thing to experience and in my 20 years or so as a nurse, even with two spells of 2 month blocks working in gynaecology and being used to a lot of blood, this still rated as extreme, so to some women with no experience or knowledge  in this area it could feel like they are literally bleeding to death. Its always worth talking to your Dr if you experience anything similar.

 

All in all I have felt utterly dreadful every day of this last week, despite the side effects symptoms easing off. I have stuck to the diet and protocol and now taking 10 mls C8 oil twice daily and 2 DIM daily. My nutritional therapist is aware of all of the above and reviewing later this week.

Hopefully I will start feeling a bit better soon. I have been spending my time at home  with just a half hour trip out locally to pick a few wild flowers, and have been trying to do a little tabletop still life photography, but mostly reading, meditating, enjoying watching wild life in the garden and watching a bit of easy going tv. Despite feeling dreadful I am happy enough in myself and taking pleasure in our garden each day, although really missing seeing people. whilst the UK is getting back to near normal I am still stuck at home and rarely see a soul, but this is the nature of M.E.

We have several visits a day from a group of about 12 Goldfinches with 3 young, its been fun to watch their behaviour and see them enjoy the wild flowers we planted last year.

Nutritional therapy and M.E. update

 Just a quick update on how the plan is going and how I am doing, more for my own records than anything.

So far pain is massively reduced, however  it can flare in the days following mental or physical exertion still - this is not a pain due to lack of use as it occurs in strange places such as across the cheek muscles in my face, plus usually accompanies further swelling of the glands in my throat and sore throat. The pain levels are still lower even on these occasions which is a massive plus. 

Frustratingly I have experienced a pinched nerve in my neck for the last  month so Im am unfortunately still experiencing pain - just a different sort - nerve pain through my shoulder, down my arm, accompanied by pins and needles/a dead arm sort of feeling. I have been practicing various neck exercises to help with this, used a Tens machine, heat pad, working on ensuring my posture is as good as it can be, altered how I work on a computer and how I sleep. So hopefully it will ease in coming weeks. I am taking Boswelia extract with Curcumin and black pepper to help reduce inflammation in and around the nerve to aid healing. One surprise to me is is just how much some meditation can actually help relieve the pain Im experiencing from the trapped nerve - I think this may be partially down to the position I practice in - but I have found one meditation to help a lot apart from when it reaches that excrutiating point. I would highly recommend meditation for pain relief - but look for one that suits you - some I find simply dont fit with me, whilst some are excellent.

As for all my other symptoms I would say little has changed, brain fog/cognitive dysfunction/memory problems persist and  fluctuate but can seriously interfere with my life and functioning, energy and stamina remain low, exhaustion/fatigue remains unchanged, flu like symptoms persist,  the sore throats and swollen glands in my neck occur less frequently which is a little improvement. Sleep disturbances persist. Post exertional malaise continues. The cold hands, feet, nose eases in the summer months anyway so difficult to assess but I remain intolerant to temperature fluctuations. I still experience fluctuating sensitivity to noise and light, as well as difficulty focusing my eyes.I  continue to struggle staying upright/on my feet for very long, with my balance remaining unstable - I have almost fallen several times at home recently. So not really any improvement over all other than pain reduction.

Recent blood tests show low ferritin at 32 ( possible aggravator mould) -but transferrin ok so not a supply issue but a storage issue ( all being used), low lymphocytes, high vit D, TPO ( Thyroid anti body) raised but less than it was years ago. TSH ok, T4 ok, T3 lowish and to be re checked in 6 months.

At present I am taking the following under supervision of my GP and nutritional therapist alongside following the plant paradox diet - ( PLEASE NOTE - this has been specifically worked out for me following medical history, tests, etc this is NOT a protocol for anyone else to follow. There are reasons I take each item and these are determined by specialists)

Morning -  Thyroxine,

 Betaine - for stomach mucosal lining and protein digestion, 

Ox bile - for digestive foundation, 

Molybdenam- for brain fog and sulphites

 Liquorice extract - for adrenal support and dopamine backlog

 Cod liver oil - omega 3 ,

 MCT oil - pure ketones in prep for keto diet plus brain fog

 Turkey tail powder - brain fog, 

Vitamin C - bio available vit c

CoQ10 - to aid mitochondria with energy 

Vit B 12 sub lingual

 Co enzyme B1 sub lingual - to help with multiple markers shown in OAT test

Acetyl L Carnitine - for brain fog

Lunch - Glucommanan powder - to bind mould - demonstrated in 2 tests

Tea - Betaine , Ox bile, P5P - to stop internal oxalate production, 

Bed time - Magnesium to aid sleep and pain relief plus Sleep aid herbal tablets as required

I am increasing MCT oil over the next week in preparation of trying a keto diet to hopefully kick start energy levels. Then starting DIM complex to help immune response indicated by low ferritin, increasing it over the following week.

Plan to continue with the nutritional protocol and other advised actions such as mindfulness, meditation, daylight, pacing etc and review in a few weeks as there is not an endless supply of funds and we simply cannot continue costs of nutritional therapist and so many supplements ( these alone are costing around £100 a month upwards) plus the cost of the diet. Fingers crossed we see some improvement. Its not easy following such a strict dietary regime with such a limited food choice when I dont have the energy to cook, and not easy on my partner either but we are both giving it our all and I am so grateful to Michael for cooking separate food for me ( he is not into this way of eating himself).

As always I try to balance the M.E stuff with some positives and whilst I have not been getting out much this last few weeks I have been dabbling with a bit of still life photography and thoroughly enjoying it. So those are the photographs shared today.

I offered use of some of my images to the M.E association to help them to raise funds and I have had an email saying they wish to take me up on this offer, images to be used on cards etc. I'm really happy to be able to contribute something to the M.E. community and do my bit to help raise funds for such an excellent association.

I also managed to get two images awarded gold from the NPS for May 

Nutritional therapist onboard May 2021

 

This year I have restarted the Plant Paradox diet again, in the hope that we could work out why it partially helped me for short periods last year and why my symptoms kept returning. Only this time we have approached a lovely Nutritional therapist who has experience of M.E. to help. 

Following a thorough assessment a plan was devised. The 1st 5-6 weeks has consisted of eating pretty close to the Plant Paradox diet but with some modifications, to eat certain amounts of protein, carbs, fats and calories specific to my needs. A plan was put together including other suggestions that may help benefit my well being and recovery, this included 

various supplements at specific times, 

looking at my sleep pattern and circadian rhythm - getting daylight daily to help, avoiding blue screens at night etc

meditation practice and mindfullness - bought a book to help me with this

trying different methods to stimulate and exercise my vagal tone - I chose deep breathing exercises ( such as Wim Hoff method)

tests to determine any possible causes or exacerbating factors, indicators of issues etc.

As the weeks progressed we reduced oxalates too - something I had started to do 2 months ago as I suspected foods high in oxalates were producing worse symptoms - specificly pain.

After 6 weeks my pain has reduced massively, but my cognitive dysfunction is considerably worse - with more confusion. I started the plan on 23/3/21 - it is now 4/5/21. So that's one symptom improved to start with. 

 Test results are back and I am waiting for an appointment in a few days time to discuss results and a continuing plan of action. In the meantime I have commenced digestive enzymes to help my body break down foods - as my gall bladder was removed a couple of years back.

As usual I like to add any positives in the balance out the health issues - I've not managed to do much lately with very low energy and severe brain fog, but its been amazing to discover that I was awarded SWPP Plant and fungi photographer of the year for 2020 - this is a huge achievement for me and very special for me. I feel truly honoured to win this. So made the effort to get a pic of me with my trophy and certificate. The winning image is below. 

UPDATED 19/4/21

Last week we had a catch up with the Nutritional therapist who rounded up the test results along with my experiences. Tests indicate-

bacterial gut imbalance

mould 

low dopamine and seratonin - common in inflamation

oxalates a little raised

low vit B6, vit C & NAC all indicative of oxalate involvement

low folate metabolism - (required for energy)

low antioxidant/detoxification status

low mitochondrial dysregulation

suspect ability converting energy from carbs

As a result of this info I am continuing on the low lectin, low oxalate nutrition plan just for this month whilst slowly introducing numerous supplements ( such as digestive enzymes, vit B1 and a few other things) to hopefully help reduce brain fog, build up my digestive system and to help with some of the above issues. We have liased with my GP and Im having a few bloods tests this week. We have an aim for me to commence a keto diet 4 weeks into the new supplement protocol, fully supported, checking in with both my GP ( who is incredibly supportive of this whole plan)  and nutritional therapist. Ive really simplified the plan here - in reality its quite complex and I will be taking a large amount of tablets to address different issues at different points, and nutrition is approached carefully. Not everything can be addressed at once. But slowly moving forward, pain is still greatly reduced bar 2 days out of the last 2-3 weeks.