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.