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.
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
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 :)
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
