Um, it’s taken me a bit a time to get around to writing a follow up post to that written in August 2021. Somehow life, moving from South Yorkshire to South Wales, and more life, well, it got in the way, and I’ve not blogged much. I’ve recently had questions about how it was going, and thought it might be useful to post an update.
So what have I achieved so far?
- I’ve halted the continual decline I’ve been on for years, including during a period where I moved house/country. So I take that as a win.
- I’ve found my baseline for the first time since being diagnosed in 2013. Another win.
- I have a better sense of what I can and cannot do each day, and am better at adjusting accordingly (most of the time).
- I don’t go down the boom and bust route as often as I used to, and I don’t have PEM quite so often, or quite so badly.
- The monthly HRV average (talked about here) has gone from 19 when I started using the FitBit, to 25 now. Again, not a big leap, but a improvement all the same.
Well, no big fanfare of massive improvement; but I wasn’t expecting that. I would have liked to improve more than I have, but moving used up so much energy and it takes time to recover from something this big. However, the main thing is, I have at least stopped the ongoing decline that I’ve experienced these last few years. Whilst that might not sound like much, it’s quite a big deal for me, as I was worrying I was getting close to severe ME and bedbound, and I’ve least stopped that from happening.
Pacing with the HRM has definitely helped, and by the end of December 2021, I realised that for the first time since being diagnosed with ME in 2013, I had found my baseline. Baseline? That is, keeping within your energy limits so that you don’t end up doing to much and triggering post-extertional malaise (PEM). Yes, I was diagnosed nearly 10 years ago and only now have worked out my baseline.
With standard pacing, you need lots of will power to stop yourself from going beyond your energy envelope (doing too much). Like a lot of people with ME, I have lots of will power to do, not so much to don’t. So using the alert feature on my HRM has been a game changer for me.
Standard pacing, without a HRM, has never worked for me. Simply put, I find it very hard to stop myself from doing. The doing might be basic things like preparing meals and general household tasks, or more involved things such as a bit of gardening, or chatting with a friend. I start something and I don’t want to stop until it’s done. Or I start something, then think, I’ll ‘just’ do this other thing too. ‘Just jobs’ have a way of multiplying very quickly, and I do them, then I push myself and I crash, and end up a couple of days later with PEM. I’ll enjoy the company of a friend so much, that I sit up for too long, don’t take enough rests whilst they are visiting, and after they have gone, a day or two later, yep, PEM.
Each morning I check the stats on my FitBit. This is because it’s over night when the HRV is recorded. HRV measures the variation of time in milliseconds, between one heart beat and the next. The average HRV for a person of my age (55) is c. 57. HRV is a good indicator of how I’m improving in statistical terms, which then helps me decide how I plan a day. So my average going from 19 to 25 is more of an improvement that it might seem to someone without ME.
In practice, this means I’ve been able to slightly increase how much of a task, such as gardening, I can do. As long as I do it carefully, i.e. breaking the task down to sub tasks and taking breaks, I can now do about 30 minutes once, maybe twice a week (depending on what is planned for that week). Given I basically did no gardening for much of 2022, this is BIG! I cannot do 30 minutes every week and see a friend in that same week. That is way to much for me to manage. But I can do 30 minutes of garden one week, enjoy the company of a friend the following week. It means I have enough energy to manage the landscapers currently at our place implementing the first stage of my garden redesign. I cannot do gardening and manage the landscapers, again that would be too much. Hopefully you get the idea of how, by monitoring my HRV, I can watch how it rises and falls on a daily basis, and then make plans.
By the way, one thing I’ve noticed with HRV, is that like PEM, it tends to lag a day or two before I experience the physical result of the previous few days activities. So if HRV is: day one – 23, day two – 26, day three – 21, I can see that suddenly there has been a dip because I did a bit too much a couple of days ago, and if I haven’t already changed plans and done more resting and less tasks, then I damn well better, if I want to halt the risk of a PEM episode.
- I still find stopping hard. And I don’t always have the alert function turned on. So I’m going back to using it all the time now. This matters, because even when I’m sitting up, relaxed and enjoying lunch with my partner, it can still push me over 100bpm. I need to be aware how often that happens and include more rests.
- One of the things I find the hardest, is that when I’m with friends I’m so happy that I end up pushing myself more than I should, and then risk PEM. So that’s a big thing I need to try and change. I have some very understanding close friends, and they will even say “shouldn’t you have a rest?” I need to rest before they notice, so that I stop having PEM after seeing friends. Whilst I might not achieve this every time, my aim is to do so more often than not.
- I use To Do lists (Microsoft To Do, which syncs with all my devices) at lot already, checking in at least at the start of the day. This is great, but I still don’t list everything I want to do each day on them, including the small ‘just jobs’. So I’m not really planning my day/week with enough care. Therefore, I need to add everything, yes, Gwenfar, even that other just job you tried to sneak by yourself… At least in the short term, so that I’m more aware of the energy I’m using and account for it in my plans.
Ultimately, I’d like to see some improvement over the coming year. I’m talking getting my energy battery from 10% or so, to maybe 15% (compared to a healthy person who is probably 80% plus)? In practice, this might mean that I can manage putting the evening meal together a couple of days a week, where currently my partner (Kevin) does this every night. I’m keeping the aims small, because, ME. But something like this would show a slight quality of life improvement for myself, and for Kevin.
- Using a heart rate monitor to better manage MECFS (15th June 2021)
- Update 1: Using a heart rate monitor to better manage MECFS (including HRV) (1st August 2021)