Update on Heart Rate Pacing For ME/CFS

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Considering you only recently got diagnosed your take on pacing is outstanding. It’s taken me 5 years to learn to implement this into my daily life. Great work and I look forward to watching your other videos.

ive had m.e for 20 years and still fing the resting bit the hardest to deal with... im terrible at pacing... currently 3 month bedbound but love your videos, they hit the nail on the head about this chronic illness... stay well and thanks for the vids xx

I’m definitely here because you and Chris are genuine, funny people. It’s you I follow regardless of content ☺️

Hey friend Finn. I am sitting here at a Drs. Office. I am in so much pain I can hardly walk for more than a few minutes. Plus severe ME/CFS. I hate this crap. Seeing you cheers me up. Thanks. You may want to say Chronic Fatigue Syndrome as some folks don't know what CFS IS. I get the pacing but for me it's too complicated. Can you continue to Fwaffle on? I don't want the video to end.❤️🔥❤️🔥❤️♿

Such a good video I agree it’s all about looking at different ways of coping and finding what works for you because we are all individuals no one thing works for everyone xx

Oh m'love! If it's any consolation, I've been working on pacing for a decade now and I still get it wrong sometimes 🙃 I'm currently flopped on the sofa, watching YT while my body gets a few spoons back, and this vid popped up on my random 'to watch' list (somehow I missed it when it came out?!?) . Yep, like many areas of life, we need to use a range of tools to manage the problem, and, unfortunately it does still go a bit wobbly sometimes, in which case we have to be kind to ourselves. (FWIW you described everything beautifully - it wasn't a waffle! 🥰🥰🥰)

Thanks for the insight! I agree, pacing is a mix and a fine art of equilibrium, trial and error, as it seems to me ; ) I have a walker now, and at the beginning I did not want to see it, so I hid it in my entryway at night so I would not have to look at it in the morning : ) Now he is my best friend. There is a foundation, millionsmissing, which is actively working on making M.E more public, getting funding more etc... there are amazing volunteers ,M.E. sufferers , who offer support,tools,techniques and suggestion for pacing, which I find quite cool and it helped me a lot. Personnally, I found a wonderful EMDR practicionner (with very careful sessions,adapted to M.E.), and I saw my energy levels being better while working with trauma,since trauma takes much energy also and creates stress : ) I bought a stool on wheels for the kitchen, I sit to shower and brush my teeth and face, and total rest helps tremendously...It really takes time to understand how all this "works" since it is very unique to each individual and to cope with this life change... Sending courage y'all,we've got this, it is so nice we can have access to so many insights via Internet ; ) Oh- another channel I recommend is Realan Agle's, which features lots and lots of interviews of M.E patients, recovered, in remission or just doing quite better, sharing their thoughts and experience : ) Another tool I like is cardiac coherence via youtube or by yourself (5 seconds inspire, 5 expire, for 5 minutes), very calming and restoring,and I am currently testing a brain recovering program (Alew Howards').A lesson I learnt is to stop setting timed goals and go with the situation instead of against it and work on being very present.

Tools are so important, especially for medical conditions/ disabilities. It's always a process to see what tools will help you as an individual. Glad you're finding tools that are helping. Hugs!

I just want to clarify a comment I made (was it this video?). You do so much! Just answering each and everyone of your commenter would seem to be a full time job! And yet you find time to write, make content, go camping, and live a totally fuller (is that a word?) life than anyone I know! I'm in total awe. I'm at a point where I kinda just gave up. I spend my days staring at a ceiling unless someone comes and makes me get out of bed. Imma try again.

Hi Finn, it is so good to see you again. I am waiting for my carpal tunnel operation and top is right after, this summer, can´t believe it´s really happening. Also have my depression meds changed and miracle has happened. I can write again, my creative mind is back, after 12 long years. So amazing. I can´t use comp mouse because of the wrist, but I can write, and oh boy I do.

Hey, Finn!!! Great techniques.

You're doing a fabulous job lovely :_thumbsup: xx

Hi, from a stormy Pembrokeshire (and 5 days after a nasty IBS flare up whilst travelling 😢). I am finding that monitoring my heart rate is helping. I have also noticed that when I have other symptoms flaring or after a physically/emotionally stressful time, my heart rate shoots up very easily. I then have to rest more and really think about what I am doing throughout the day. Trying to keep up with my previous schedule/wish list is impossible right now, especially as we are looking for a new home (3 hours away from where we live currently 🙄). My new full time job is me and my health ❤

I use a Garmin venu 2 plus and it has the body battery . Between having my alarm go off when I go over my AT, I also watch stress and body battery and it helps me know when I really need to take it extra easy that day. I'm new to ME diagnosis and so thankful for videos and groups that are there to help and people who get it!

This is a great video thank you!! Pacing has been crucial in my healing. If you haven’t had a Lyme test I highly recommend, many chronic fatigue cases turn out to be Lyme. Unfortunately the doctor’s tests aren’t that reliable but you can find them privately. Completely ignore this if it doesn’t resonate! 💕

I just found you. Im 5 years with cfs, Fibromyalgia and other chronic illnesses. I cant pace, i just cant! Its horrible to say that out loud. I crash weekly, I have bad practices and cant seem to change. I need professional help but dont know where to get it.❤

Hello Finn! So wonderful to see you again on my screen! 😁😃 I have a question, how does anxiety/stress play a role in your ME/CFS? You look happy on your mobility scooter 🙂 It's always hard at first to admit you need something like that for help, but in the long run, it's your body and no matter what, taking care of yourself is #1! Then Christopher, can't forget that wonderful husband of yours and all his support for you as well 🥰 I hope you are doing well and continue to find your balance 🐑

Hi Finn A couple of points I think you may have covered, I see pacing like a tool box , you are doing really well switching tasks and using you AT on your Fitbit, Diet he as a big part in our energy production and usage, if we put good quality food (fuel) in we will get better energy output (not as much as a “normal” person ) but every little change helps. On energy usage our automic nervous system can act like a short circuit across our batteries (energy storage cells) zapping our energy away very very quickly, it is good to be present and notice when this happens ( your heart rate will spike a little even at rest) it is good practice to find some quick breathing exercises and or meditations to help this. Finding something to make you laugh will help release the good hormones which will also help with this. It is ok to let your heart rate get a little higher sometimes, just not all of the time don’t beat yourself up if it gets a little higher, your HRV( heart rate variability) shows your heart health ours cans get on the low side if we don’t raise our heart rate sometimes, this will bring other issues in future. I will repeat find a way to manage any stress in your life. If we eat terrible food that our bodies have to use a lot of energy to digest and not get energy from it we are doing ourselves and our bodies and mind a disservice. I will end my ramble here for today I hope this makes sense.. 🙆🏻 Mark

Another great video, Finn! I recently stopped food shopping and had my Dad do it for me and it's made a world of a difference. Still unwell, of course, but feeling much better, head more clearer etc. Regarding the feelings of fatigue, I'm right with you there, I will get fatigued every day, obviously, but then I find that there is an overall, more subtle fatigue that works over several days. It might constitute as a crash. But I know now that regardless of how many active days I have, there's this general fatigue is working its way up as well. So even if I rest a lot every day, this other fatigue will show up no matter what I do. A couple of questions: What pulse tracker are you using? I don't think mine has a alarm but I need to look it up. Could you link us to this youtuber you mentioned? Thanks so much for doing these videos!