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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.

@FinnTheInfinncible

Жыл бұрын

Thank you, that's very kind! This is one of my issues really though, well it's a strength, but also an issue...in that I am an academic, l research the heck out of everything! I've had to do this for past challenges, when ive found myself alone with little help, and it was clear the same was happening with ME/CFS, that with little support, it was going to be up to be so I did what l do best, l crammed the knowledge! I recognise though, that I have a tendency to overwork, and this is something I want to talk about in a video in more detail at some point. I have mentioned in in one of my videos, my researching is an advantage, but in some ways also a disadvantage because I do also add to my own fatigue with how hard l work, so I'm having to learn to balance that if that makes sense! Thank you so much for watching and for commenting!

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

@FinnTheInfinncible

Жыл бұрын

Thank you for watching, and for leaving me a lovely comment 💗Resting is easy when we crash because theres little choice, but on better days its so tough isnt it! I have so many ideas, so many things I want to do, I start a task and feel OK, but I know thet even if I feel OK I still need to take breaks, and then that task takes ages and nothing else gets done and thats so annoying, but I cant get frustrated because then that takes energy.....and breathe! It is reassuring to know, that it isnt just me that feels this! Sending love and understanding!

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.❤️🔥❤️🔥❤️♿

@FinnTheInfinncible

2 жыл бұрын

Ah bless you! I'm glad to offer some sunshine in among the rain.❤️. Yes I use chronic fatigue/ME/CFS interchangingly as this illness is known by many names (not all of them helpful!) Keep on keeping on you wonderful soul. Much love

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

@FinnTheInfinncible

2 жыл бұрын

Absolutely! And also, what works can often change so it's worth having multiple tools!

@BeverleyButterfly

2 жыл бұрын

@@FinnTheInfinncible exactly have a full tool box for every occasion xx

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

@FinnTheInfinncible

2 жыл бұрын

Love and appreciate that so very much!

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! 🥰🥰🥰)

@FinnTheInfinncible

2 жыл бұрын

I missed this! It's good to read this I feel reassured! I'm such a....l need to get it right ...kinda person...but of course there is no right with this because it's forever changing . I'm making more sense of this and that's what matters that I k ow it'll never be perfect, it'll be good enough, and I'll discover new tools, and likely discover old fools stop working and needs adapting, and that's ok!

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!

@FinnTheInfinncible

2 жыл бұрын

I absolutely agree, its taken me a while to get my head around this, and to see that all they are, tools. My word they make life better! Much love my friend!

@ncburton1713

2 жыл бұрын

@@FinnTheInfinncible I'm sure it's a big change. Since I've been visually impaired all my life I'm used to having to adapt and keep adapting as my eye condition progresses and other health issues crop up. I can only imagine what it must be like to be more or less able bodies and then suddenly you're having to figure out what's wrong and what tools are even needed. Both have there own challenges, but at least I've always known I was visually impaired and since my mom has the same eye condition I had someone to show me the way. That's one of thw awesome things about the internet though is being able to talk to others with similar challenges and share things that may or may not work to help. Not to mention the comfort in knowing you're not alone. 💙

@FinnTheInfinncible

2 жыл бұрын

@@ncburton1713 exactly this my friend. I have to admit that losing my mobilty has always been one of my biggest fears. As someone who loves to dance and walk and wander, to now have to be so restricted is taking a lot of adjusting to. But, l may well improve so I'm practicing open acceptance, accepting as best as l can how things are right now and being willing to let it unforld how it will....it's a work on progress! I have no idea what I would do without the kindness of others like yourself. I never feel alone and that is a blessing 💜

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 ❤

@FinnTheInfinncible

8 ай бұрын

Hi Ali! Thank you so much for becoming a member! Its lovely to see your member badge pop up! Sorry you are having an IBS flare , I hope the gorgeous Pembrokeshire scenery is helpng as a distraction. Heart rate pacing has and is a real game changer for me, I too notice such a difference in how I feel and how easily my heart rate spikes, having this as a guide makes it a little eaiser to monitor and manage symptoms doesnt it? Good luck with the house hunting, thats a massive thing to manage so its very wise that your curent job is you and your health!

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.

@FinnTheInfinncible

2 жыл бұрын

Bless you. I do try to answer, though it can take me a while these days! Social media does only show one side of the picture though, it doesnt show the days, weeks where Im stuck, unable to move and joining you staring at the ceiling! A lot of the time my content is scheduled, so where it seems im active, ive planned ahead! And really, these days, Im lucky if im getting a video up once a month. But, I was doing way too much before. ME has been a wake up call for me, a way to see that how I was living was not sustainable anyway. Im settling into a slower quieter life, though at the moment its slower than Id like. I want to get back to regular content at least, because its this I love the most, sharing and connecting. Its what keeps me ticking

@coffeezombie6032

2 жыл бұрын

@@FinnTheInfinncible I hear ya. My ceiling isn't THAT interesting

@FinnTheInfinncible

2 жыл бұрын

@@coffeezombie6032 but sometimes it's where it's at 💜💜💜

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!

@FinnTheInfinncible

Жыл бұрын

Hi my friend! Thank goodness for groups eh! I'm so grateful for all the guidance I've had, otherwise I'd be lost! Heart rate pacing really has been a game changer for me. I currently use a fit bit and have a downloaded additional app to alarm me when I hit my AT. I have been looking at the Garmin you have and wondering if it's worth the switch. How much do the additional features help you manage your ME? And do you have to use an app to set your AT? Does it vibrate to alarm you?

@dianafields6475

Жыл бұрын

@FinnTheInfinncible I love by the body battery and stressxresd outs on my garmin. But do have to run a yoga activity continuously to get alerts. It's not too bad, though. I love that the battery lasts me about 6 days, even running the yoga activity.

@FinnTheInfinncible

Жыл бұрын

@@dianafields6475 thanks for getting back to me. Yes I have to run an app on my fit bit to get my AT sonitbwouod be no different. The body battery looks like a really useful tool. I'm using visible at the moment, but it would be great to have an idea what my battery is like at various points within a day! I think I'm going to invest! Thank you!

@dianafields6475

Жыл бұрын

@FinnTheInfinncible I tried visible, but I also wanted something to show me where I was throughout the day. I've been in a crash the past 2 weeks, and my body battery would never get much above 30. This morning, it finally got up to 75. I am so thankful too as I have a doctor appointment an hour and a half drive from us. The stress measurement also helps me to catch when I eat something that I shouldn't.

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.❤

@FinnTheInfinncible

10 ай бұрын

Hello! Thanks for stumbling accross my channel, welcome to the FinnFam! Pacing is hard, and we often are left without any guidance, or even worse, completely the wrong guidance. Do you have a ME/CFS service in your area? Can you talk to your GP about referring you? Have a look on the ME assocciation website as hey have some great resources meassociation.org.uk/ Most of all, be kind to yourself. Living with chronic illness is hard work. Even when we pace well, crashes can still happen. Invisible illness is one of those that gets little sympathy and understanding in society and unfortunately we then transfer that onto ourselves, and blame ourselves when we are still unwell. I made a video last week about this that may help: kzread.info/dash/bejne/eWSaldemcdW6pJc.html

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.

@FinnTheInfinncible

2 жыл бұрын

Hello my friend! Sounds like you are doing well. 💜

@BJKage

2 жыл бұрын

@@FinnTheInfinncible Thanks, I do. I hope you are getting better too and everything is easier for you now that you know what makes you tick.

Hey, Finn!!! Great techniques.

@FinnTheInfinncible

Жыл бұрын

Thanks my friend! So glad this was helpful!

You're doing a fabulous job lovely xx

@FinnTheInfinncible

2 жыл бұрын

Thanks sweets, I feel like I am at last becoming a Fred tamer!

@FinnTheInfinncible

2 жыл бұрын

By the way......

@natashamason3328

2 жыл бұрын

@@FinnTheInfinncible oooh my goodness!!!!!!! 😊

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! 💕

@FinnTheInfinncible

2 жыл бұрын

Glad you enjoyed the video, thank you! And yes, had a Lyme test, all clear! At least that's one thing!

@luna_aaah

2 жыл бұрын

@@FinnTheInfinncible that’s good! Phewph! Such a good one to be negative for, I wasn’t so lucky. Been watching your videos for a while, love this direction! 🕺

@FinnTheInfinncible

2 жыл бұрын

@@luna_aaah ah sorry to hear that. The Lyme l mean....not that your loving my videos.... I love that!

@luna_aaah

2 жыл бұрын

@@FinnTheInfinncible haha ya the Lyme can leave the videos can stay!

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

@FinnTheInfinncible

2 жыл бұрын

Thanks my friend! Yes indeed,.l didn't mention this here today because it was just about specific pacing stuff, plus I'd already waffled on for ages! But yes healthy food is vital as is staying hydrated! I eat pretty healthy. I'm veggie/vegan and there's a ton of beg on our food. I do have treats ,but hey, I'm not punishing myself for that! Meditation is amazing. Already been doing this for years. It's now part of my rest breaks , breathing techniques, meditation music, guided stuff etc. It's a multi pronged approach!

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 🐑

@FinnTheInfinncible

2 жыл бұрын

Hello gorgeous man! Yes, I'm getting there with this Fred of mine! Molly has helped a lot! Good question re stress anxiety and ME. I have ALOT to say on this and will get around to making videos soon. But yes, balancing the two is a nightmare! Even someone without mental health challenges has to be careful with ME as understandably stressful but stress makes things worse....so if you have MH challenges like l fo AND ME, well it's a circus juggling act! This is why lve given up so much of my work. I have to keep stress and anxiety as low as possible. Non people facing work is far less stressful and anxiety provoking. I am still doing talks, but wierdly, they don't make me that anxious. I think because it's a one way conversation!

@pmbluemoon

2 жыл бұрын

@@FinnTheInfinncible I agree about the juggling act for sure, and I'm looking forward to your video on it! I hope once you get to an even keel that you can start up slowly what you love to do more, it's always a good feeling to say "I can handle this now" or "that's behind me now" 😊 I think the things we go through also help us learn to be more humble. (I can see you don't have a problem there though!) I just talked to my GP today and am going to try to get off one of my meds that possibly could be causing an allergic reaction (I HOPE that's the issue, otherwise it's on to the next guess and hope!). This is such a circus how we each have issues to dig through during our lives! It's been frustrating, but I can also say it's not been boring! 🤪😏🤟💪👍

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!

@FinnTheInfinncible

2 жыл бұрын

Thank you so much for this lovely comment! Glad you are asking for help and reaping the benefits, I am still not great at the asking skill! And yes, my fatigue presents in a similar way. I have heard it referred to as rolling PEM, where you dont quite do too much enough to cause a crash straight off, but rather it builds up over a few days. Im trying to be more mindful of that one! Re the tracker, I have a draft blog of this that I aim to get up next week, but basically, I am using the Fitbit versa 2 and an app from the fitbit store called HRpacing. I have that set to my AT so that it buzzes when i go over. And I forgot to link @RUN-DMC/GezMedinger thanks for reminding me! All his videos are great but this one especially helped me : kzread.info/dash/bejne/mYmE2LCwps61nKQ.html

@rarelymary

2 жыл бұрын

@@FinnTheInfinncible Thank you for the reply! I am absolutely terrible at asking for help. My boyfriend reminded me he'd suggested I get help with my shopping for a year! 😅 Oh, I'm glad I wasn't just speaking rubbish! I had not heard of rolling PEM. I'll have to look that up a bit more. Thank you for the info on the Fitbit. It's a bit pricey for me at the moment but I think I've got a pretty good feel for when I should slow down. We did learn some useful things off the cheap one I got anyhow, such as my resting pulse is in the high range. Looking forward to the Fitbit blog though. Thanks! I will check the video out! 😃

My heart rate was going up to 125bpm going upstairs. I've been on a heart tablet for a year. It keeps my heart rate lower. I've got post excersion Malaise after 3.5 years of Long covid now added Fibromyalgia and Costochondritis on top of it. Not been well since March 2020. I've got fatigue and had to learn to pace. Still feels like I slump from one day to the next.

@victoriahouse9969

9 ай бұрын

Ask Doctor for 24 ECG test

@victoriahouse9969

9 ай бұрын

Get a stool for washing up at the sink

@victoriahouse9969

9 ай бұрын

I found Gez about a year ago

@FinnTheInfinncible

9 ай бұрын

Bless you, sounds very familiar! Pacing does help, I also use things like a stool in the kichen for washing up, and for showering, I use a wheelchair outside too. I have also been diagnosed with PoTS which explains a lot!

I am asking out of kindness as you're a very self reflective person who shares your deepest feelings and I am grateful to have the opportunity to hear your perspective. My questions are: During times when you're not basking in a euphoria and living a normal life, have you ever had a time that you're not fending off a major crisis in the background? Also, I don't understand why it's paramount that others see you as a man above simply seeing you as a human with a good heart as when everything is stripped down it's our heart that is the foundation of all of our meaningful relationship right? P.S. I am not implying in anyway that your physical ailments are not honest as I can see for myself your drastic physical decline and it's very concerning.

@FinnTheInfinncible

2 жыл бұрын

Low points, illness, crisis, these are all part of being human. Life is forever waxing and waning between good times and bad times. Mine stand out as l share them publically whereas most people don't. I still experience gender euphoria because I'm still relatively young in completing my transition and the joy of comfort in my own body is still new and takes me by surprise. But the bigger permeant feeling is peace, just being at ease in who l am and in my relations with others who are now able to recognise me as the man l am. It is paramount to me that I'm seen as someone with a good heart. I value that above all else. But l am a man and attempting to live life with a body that told a different story was painful and impossible. Now that I'm transitioned, and free of pain, I'm free to just be me. It's possible to experience more than one feeling at a time and for them both to be valid. Becoming chronically ill is incredibly hard, but l am still content and fulfilled. My life is still good. I can still enjoy the thing l love, and achieve the things l want to, l just have to do that differently now.

@maverickspirit208

2 жыл бұрын

@@FinnTheInfinncible Your good heart does shine brightly.

Sounds like you're on the first level of ME mountain? Is that what it feels like? I like your shirt. And I like you too, lots and lots ✨💜

@FinnTheInfinncible

2 жыл бұрын

It feels like l have made it out of base camp at the very least! Just trying to find the right path up now, which is a challenge! But...definitely finding my footing! Love you too ❤️

@Moosh207

2 жыл бұрын

@@FinnTheInfinncible I hear there's a water tank up ahead where you can refill your water bottle and a still water lake where you can go for a swim 💕

@FinnTheInfinncible

2 жыл бұрын

@@Moosh207 haha l need that! And maybe a massage tent too!

@Moosh207

2 жыл бұрын

@@FinnTheInfinncible absolutely! 😊☀🍃

Its called Boom and Bust. I know it well.

@FinnTheInfinncible

9 ай бұрын

Boom and bust is different to PEM and its important to always clarify this. Boom and bust does cause PEM thats for sure. Many of us live in boom and bust cycles, before we learn to pace, but even with pacing, PEM sill happens, because PEM is unfortunately a symptom of ME/CFS and because it affected by both internal and exernal factors, often out of our control, its incredibly hard to avoid it completely. I explain more in a recent video which you can watch here: kzread.info/dash/bejne/eWSaldemcdW6pJc.html

I can’t find the KZread channel by Jasma or Jazma can you link it?

@FinnTheInfinncible

2 жыл бұрын

Yes! Sorry I forgot to add it in the description. Check out @RUN-DMC / Gez Medinger who has tons of fantastic videos on ME/CFS and long covid. This pacing one was particularly awesome! kzread.info/dash/bejne/mYmE2LCwps61nKQ.html

RAINBOW DUCK xxx

@FinnTheInfinncible

2 жыл бұрын

unicorn duck no less!

@natashamason3328

2 жыл бұрын

@@FinnTheInfinncible oooh yes 😊 He's perfect 😍