This is exactly my thinking my friend. Im still careful of course, and I am lucky that I have a partner to support me, but yes, these good times are the memories that keep me going in the hard times when Im laid up and feeling dreadful!
I'm sorry it's relatable but I get how valuable relation is! How annoying is it when brains don't work! Rubber? Why did I think it had something to do with rubber? I guess they both start with the same letter 😂 thanks for watching 🙂
Well done video Finn. I have another take about risking a crash other than my mental health. I've been very ill with M.E. for 18 years. I have crashed hundreds and hundreds of times. I recently went on a wine tasting trip with friends. I then crashed hard for 10 days, but I'm just now getting my feet back after almost 20. The sickness of my crash will fade away into the dark hole where all of my past crashes live. I won't think about it as a singular event for long. But, I'll never lose the memory of the great time I had sharing friendship with others. When I take my last breath, it will be the memories of joy, not the memories of suffering that I'll have on my mind. One other thing... "rolling PEM". I've never put a name to it. Now I have one. Thanks for the video. Be well. Oh...subscribed!
Great T-shirt Finn! It's always lovely to see your face 😊 You're absolutely right to pick and choose things to do that make you happy and improve your mental health regardless of the PEM, that will come later. It wouldn't be healthy to literally sit still until the ME magically disappears. This type of video works well I think, not much editing for you and when you couldn't think of 'rolling PEM' you put it on the screen when editing.
I completely agree. It's within moderation of course, it would be daft to return to the boom.and bust I was doing, or push myself to silly levels and go for a 5 mile hike, but as long as it's balanced and l put in measures to look after myself , then it's worth it. It's all calculated and balanced beforehand! I'm so chuffed these videos are going down well. I do have some mild cringe and awkward feelings putting these up in more raw form but the ease of making content and the appreciation of them makes it well worth it! I just love being able to get content up again!
Yours is the first video I have watched after realizing there is a name for this and YES❣️. So much fits and most of all the brain working problems. Thank you.❤️
Bless your heart. It was learning about post exertional malaise that made me realise l had ME/CFS. It's such a wierd symptom and so hard to manage. I hope you are doing ok?
Fin I have only just found you online and you are a breath of fresh air I have ME/ CFS and you describe me pardon the pun to a tee . Thank you for sharing your struggles it helps me to cope with this debilitating illness, I now am single after a long marriage and unable to work have gone through the benefits and PIP route successfully eventually big sigh of relief. However like you I also choose my battles and try to have a life of sorts and suffer badly with payback . Thanks Fin just binge watching your blogs x
Ah hello! Welcome to the FinnFam! What a lovely comment thank you! It's really tough isn't it , to balance taking care and pacing, with also still living! I am not sure I will ever get the balance right! Sharing with others really does help though, and I'm so glad that these vlogs help because they help me too! Now I've abandoned all ideas of perfection....whatever the hell that is anyway......and just make videos how I can and when l can, it's like turning up and chatting with friends who get it and I love that it's recieved that way too. 💜
Yep exactly this! There is nothing we do that doesn't cost us, nothing we do that we mustn't first sit and work through painstakingly first! It means every joful event is tainted with knowing it's going to literally hurt like hell afterwards. It's so incredibly tough to live this way. We've just come back from camping and I'm an absolute mess! We had such a wonderful time though and that's why I did it, my life is richer, the memories are wonderful, I got to live for a few days. We have to don't we!
The funny thing is that you taught me about rolling pem, so you forgetting it felt like "Right, class, are you paying attention?" So I was all"Yes! Yes! I know the word!" XD But I lose words just like you and my memory is bad. I also want to comment on the quality of life bit. I saw this one video by Jessica Kellgren-Fozard here on RUclips saying some good things about quality of life as a chronically ill person, I'll try and find it. And you were perfectly fine in this video even though you were not feeling your best. Take care and I hope you feel better soon!
Aha! I love that and l can picture Yiu doing it! For the life of me l could not get the word at all! Usually that would mean stopping the video, looking it up, starting again, but l just went with it, so much easier and lm glad it's appreciated! I shall have to have a look at her Jessicas channel for that video thank you. Much love!
I love this new format so much. It takes me back to the days I found you! My Finn!!! Your symptoms of Fred sound so hard to to manage. You are doing so with that kind and gentle spirit of yours. I am THRILLED you and FurrFurr have this amazing memory to last a lifetime!! So so so wonderful. Thank you for always sharing your world with us. Your book was incredible!!! It triggered me ( not a bad thing, I just related to it that deeply) , thrilled me, endeared me to even more if that is even possible. Love you beautiful boy!!!
This is so much like the old days isnt it! Sitting on my bed, waffling away, not worrying about whether I was making sense or not Fred is an utter ass but Im learning to kind of just accept that he is there and get on with stuff regardly or adapt around him as best I can. It gives me something else to waffle about too! Im glad my book was a positive experience, my aim for anyone who reads it is to inspire hope, that more is indeed possible, in ways we might not have even considered before. My phallo journey took me to very unexpected places, and healed aspects I didnt even know needed healing. If I can pass some of that on, then Im a very happy man!
Hey m'love! I love this style of video: it feels like you're sitting down with us for a chat and it's so sweet & comfortable 😄 I think you're handling all of this with extraordinary grace and good humour, and you are doing a brilliant job of adapting and moving forward with Fred in tow. FWIW I know the whole accessing words issue far too well: I say my words are getting 'stuck' and it frustrates me no end. I get very cross with myself (which of course isn't helpful). I completely agree with your thinking about PEM being 'worth it' in these circumstances and I see it exactly the same way: for our MH and our quality of life it's essential to have these challenging but wonderful experiences, and we plan for the inevitable crash as best we can. Joy is one of the most important things in life and we should never deny ourselves a chance to taste joy x
I'm so glad you are enjoying these, I've been so surprised at how much I'm enjoying them too, and how well they have been received. It feels so much less stressful, much more relaxing for me too! It'll be interesting to see if and how lanahe to do one of these on a really bad day but I'm going to still try if l can! The word finding is awful isn't it? I get cross too it's so hard not too! The slurring and stuttering is the worst for me l get so embarrassed, l know l shouldn't but it's hard not too! And oh my goodness yes we need joy! Sacrificing and getting fatigue for some joy is always Worthwhile!
HI Finn, New viewer here. I've had ME/CFS for over 5 years. I would like to ask. Do you do breadhwork, meditations such as yoga nidre?. Re: your walking outside. My mobility is also very bad. Try just taking two steps outside. Begin once a week, & continue weekly until your feeling ready to expand by then taking 3 steps outside. Even if you have to hold onto things. Or someone. I can now walk for 2 mins. Re: tasks & chores a valid tip I learnt from taking Pamela Roses Fatigue rescue course was to take all tasks & break them down in to. Very small, small, small medium, large medium. Large & very large. I hope this helps. X
Here’s a question: How do you deal with boredom and frustration when you’re too fatigued to do anything about it? (If you do get bored and frustrated when you’re that tired, that is) In the beginning of my struggle with exhaustion, brain fog and crashes, I found it easy to rest because it was so clear that I needed it, but now it can sometimes drive me mad with boredom to have to spend another day in bed, and it’s not very restful to be so frustrated. I had acceptance, but it seems I only had accepted it as a passing thing, and now that it seems potentially permanent, the acceptance and peace of mind with it is crumbling.
Oh this is SUCH a GOOD question! I'm going to do a whole video on this because l completely relate! When my fatigue is high l can't possibly get bored, I'm too exhausted and zones out, but on my better days, where I feel ok , it's so hard as I know I need to pace but with the extra energy l want to do so much but l can't! Making myself stop, slowing down, sitting still, this is all stuff that I'm really not that good at but have had to learn quickly! I will do a vlog on this asap! Thank you!
I know you didn't ask me so I hope I'm not intruding... I have alot of small activities I do from bed. I have these easy scratch paintings for example. I have games on my phone that don't take much brain power. I have streaming channels. And audio books. Again I'm not Finn so sorry if i shouldn't have shared.
@@coffeezombie6032 Thanks for sharing! No apology needed. Scratch paintings look interesting, might have a try at that. I have some activities I do from bed too depending on energy levels, like knitting/crocheting, playing video games, listening to audiobooks, watching youtube, learning about gardening, scrolling social media, watching movies, making plans for when I might have more physical energy and so on. The trouble is mostly that most of these feel like "passing the time" to me, and after years of having to spend most of my time just passing the time in order to even be ok-ish, my ability to keep doing these with any type of peace of mind is wearing thin.
@@kimzachris5340 ya I hear ya. But I try to frame it like ok I'm doing something: I'm making so and so a gift. Etc. Instead of ... ugh I'm stuck night as well do this
I'm like Finn...when I crash it is so devastating that I can't do anything or care about anything other than resting. It is like being a zombie. While I'm always ill, on days when it lets up, I read, study about my hobbies, or have a friend come by. I've had M.E. for 18 years and have had to give up bicycling, skiing, hiking and social gatherings. I'm a be-bop jazz fan and can usually listen to my music for awhile. I also like movies and subscribe to a couple of streaming services. All of the things that I mention however, if done too long can cause a crash. Rest is your friend.
It's hard to explain why it's worth the crash sometimes but we can only be careful so long. We still have dreams and goals and we have to enjoy our lives! I love this new style of video I always cut out my foggy moments but you are inspiring me to be more real about how my illnesses affect me when I'm trying to film xx
It's impossible to avoid all crashes isn't it? There are so many changing variables and besides, we DO need to still live our lives. I always pace, even when doing things I know are outside my envelope, but to not ever go outside my envelope would mean just staying still indoors and that would drive me bonkers! I'm glad you are enjoying the new style! It's helping me as I now don't have to use energy editing other than the very basic, and it means I can show the way this awful condition affects us! Ps.....did you get a Kofi email? :Love:
@@FinnTheInfinncible ooh I’ll have a look honey I am not the most technical on that site. But yes you will soon find ways to make things work for you I break up my filming each video takes three days, one to record one to edit and another to do the subtitles. Never stop reaching for your dreams mate xx
Ah welcome to the FinnFam! Im excited because you are excited! I hear you re being alone, making vlogs really helps me and chatting to lovely folks like you helps me to feel less alone too. Thanks for watching and for your lovely coment
Needed to hear this today. I commented a few videos back that I moved at the same time you did. What I didn't say is that I was also in a car accident in late June, so I was moving while in recovery from whiplash, AND one of my brothers died a year ago this week (and my father 11 months ago), so it's been a rough period for emotional stability as well. Today I chose not to push myself to do something I really thought would help my mental health, but between ongoing whiplash pain, an asthma flareup, and what is probably rolling PEM post-move, I finally decided that the emotional boost would be outweighed by the physical and emotional stress combined. So now I'm sitting alone in my house, sweating and brain-fogged (I have no diagnosis, but my symptoms are so similar to your description of ME/CFS), instead of out having adventures. I think I did the right thing, because I feel awful today and I'm sure I would have been even more miserable out at a renaissance faire, but it helps to hear someone else's perspective that my initial impulse to push myself physically in order to help myself emotionally really IS a good impulse --- to a point. When I crossed that line, I cancelled the trip, but it's still the right way to think, as long as the scales weigh in favor of the long-term gain. I can't give up on having fun, even with everything that's weighing me down. Thanks as always for your insights and positivity, Finn
Bless you thats a lot to deal with, and the emotional toll of this effects us physically and then vice versa in a never ending loop, its really tough I know. Your impulse is right, I think when we have tohose thoughts its worth listening, and then carefully weighing up the outcome. There really isnt a perfect solution with these chronic conditions, but its about what will benefit it the most in that moment really I think and it sounds like you need a mental health boost. Im sending giant hugs
I think that M.E. is easily recognized. If you have the symptoms included in "Myalgic Encephalomyelitis, the International Criteria" including PEM, you can pretty much know what you are dealing with. But, PEM is the key tell. That said, I also recommend highly that if you are symptomatic that you have a health professional diagnose you. There are so many illnesses that can look like M.E. that are usually fixable. Thyroid issues, low cortisol and depression come to mind. But there are others including cancer that also need to be paid attention to.
@@RickLincoln thanks. I've been trying to get a diagnosis of any kind for about 35 years. The American medical system is a bit horrible, and it's quite prejudicial against people with chronic fatigue. Doctors are often quite rude to me, I find. My current doctor is decent, but still refuses to diagnose me with anything at all. I don't entirely understand the logic, but in general I know most people with chronic fatigue issues have similar "mystery conditions" that our doctors won't make effort to pin down. It's like they're somehow incentivized to leave us in limbo.
Brain fog suxs, I have never heard of rolling pem but fully get it. I always explain my me/cfs to ppl who don't understand as everyday I get so much energy $$ somedays it's just pennies. I flare when I have spend all my energy $ and go into debt. In debt (pem) there is no energy, zippo, zero.
Thank you fir sharing about FRED. I have found myself so ignorant to this before your videos. It seems difficult and treatment is really still progressing to ho folks with it. I hope things in between dealing with FRED give you some release.
Hello my friend, thanks for eaty, and for your honesty. So many people either don't know about ME or have heard the wrong information so it's good to be able to educate about it. It really is no such a serious and awful condition that does not receive enough'attention or help. Sharing with you lovely folks helps though. And don't worry about the spelling, this is a place where we accept our imperfections, right?!
Love you dearly! I'm so glad you explain how this affects you. Waffle on! I can not in any way compare what I go through to your degree of symptoms. But I can relate to the "pay back". With RA I have some days I can go "balls to the wall" as they say, but then there is the crash. Major fatigue and joints swollen and feeling on fire. Thank you for your positive attitude and honest talk. My question would be...how is Chris handling these changes? Much love💚
Bless you, I love you too my dear friend! There is no comparing,.pain and fatigue is awful whatever the cause. This week has been hell for it! That's a great question re Chris. I think I'm going to grab him for a video together 💜
Much love and understanding for you Finn! *subscriber support hugs!* 🤗 I was in my best friends wedding today and I made sure I have the full week off next week to recover and have my crash. It was well worth the crash though, she was beautiful and the wedding was lovely! I'm looking forward to to the time off to recover, but as always, wish I could do something useful in that time as well. We love you too Finn! I guess if I had a question to ask, it would be: Are you and Chris still thinking about getting a pet of any kind? And of course, how is the garden coming along or are you still figuring out where to put your things in your new home?
Hey lovely man! Yes, the crash is worth it for those lovely memoires, but still, always frustrating! Great questions! Chris and I are planning another video together soon, to chat about how the move has helped us, but yes the pet is still in our future, we hope to adopt a dog, but itll likely be next year now. Home is really taking shape....garden shed is UP! video update coming asap!
@@FinnTheInfinncible I hope your garden works out for both of you, and I love just you guys chatting on the couch 😊 That will be fun if you find a pet to keep you company, I have a cat and he's my furbaby for sure! He sleeps with his paws in my hand or wrapped around my head at night hehe! I live vicariously through other's happiness and it's wonderful to see! I'm hoping some day I'll have a good relationship like you and Chris; I also watch Shaaba and Jamie as well, I like going to sleep with happy thoughts! 🥰
Love the T-shirt The rolling PEM idea explains a lot about how people are able to keep pushing and pushing and then just can’t any more. I can completely understand how sometimes it’s worth the payback to enjoy a one-off event that you love x
I saw the t-shirt and just had to have it! And yes, rolling PEM explains what l often experience when l think I've tested enough post event and rested enough and then a few weeks later I do a tiny little thing and wham....I'm floored for ten days! But yes this really is unavoidable, there is so much to account for that PEM is almost impossible to avoid anyway and life would be unbareable if l just didn't do anything so sometimes I just have to say sod the PEM and do it anyway, whilst putting as much in place to minise it and givng myself time to rest afterwards. I need a juggling giff!
Aw I'm so glad you love a Finn waffle! And re my backgarden i...the previous tennants seem to have removed all grass and covered it with bark chippings to make it low maintenance! Such a shame really! We are just going to tidy it up and redo it as it's a proper mess where the weed control fabric is showing through. The landlord would like it returned to grass but it's not going to be a cheap job....but perhaps in the future!
Well said friend! Makes total sense to me. That trip is a spiritual one for you, and what you got from it this year, is getting you through this tough PEM spike. Love the new videos! Dude the Finnwaffle thing kills me😂❤️ i need a shirt #Finn🧇! I feel like i do that so often, my wife is usually 😐🙄😄 have a great week Finn🏳️⚧️🤗
Exactly this my friend, the emotional, spiritual and mental health gains from Glastonbury are very much worth this awful crash period! And Oh the Finn waffle! I really should do a T shirt!
Hello my friend. As you know I have CFS/me and I kind of experience it differently than you. I think here's what I want to share and I never hear you say it this way. maybe it is the same but we say it differently. Besides CFS I have degenerative disc disease I have neuropathy you know there's other things going on. So with CFS I feel while I'm doing something I am feeling massively unable to function and do it. It's not like I do something and then I pay for it later, it's that I can't even do it because when I'm doing something I'm so out of it and I feel like a train has run over me that I can't physically do the thing I want to do. now sometimes what happens for me is I'll do a bunch of things because for some reason when I take my Adderall as you know it will give me energy so I'll get some shopping done and a few errands and then when I come home I have a complete meltdown crying screaming I feel so overwhelmed and so burned out and so depleted emotionally and physically. But it doesn't last for weeks or days like you speak about with the post-exertion malaise. I just think it's interesting how we all deal differently with even the same condition. For instance I would have never been able to go to Glastonbury. Just the notion of going there dealing with the crowds and all of the other things going on would have completely wiped me out I could not do it. So you do it knowing that you would have this payback when you got home. But I couldn't do it in the first place I would never be able to do something like that. Anyways I just think it's interesting. I am so glad I have a service dog because without him I really don't know why I'm even living sometimes having CFS and a lot of things that come with it it's like your reduced to existing not living. So I do have thoughts a lot about dying and death and what is the purpose of what I'm going through and then I think of my dog who I love more than anything. Thank you for the waffle never think you're doing or saying things that are just not that important. Everything you say is important everything you say is interesting no matter how you say it. sending you much love and I hope this comment finds you feeling better.
Bless you my dear friend! It is very interesting how we each experience ME/CFS differently, lve read a lot of ideas about their being different clusters or subsets, which makes a lot of sense! I do have a lot of times where I'm like you describe, that l can barely move, everything hurts and l honestly feel like I'm dying and in those times I couldn't do anything or go anywhere even if l wanted to. Other times I have the deep fatigue and other symptoms that l use pacing techniques to manage and on this condition, it's where I can at times chose to do something occasionally like go camping but l know l will pay heavily for it after in the form of PEM. Perhaps I shall make a vlog about my individual symptoms?! I'm so glad you enjoy what l have to say however I say it, thank you so much!
Your symptoms don't sound fun at all 😥❤️ I'm glad you're exploring the ways in which you can experience things that make you happy. I know it's not easy but you are doing a great job in looking after you while this chronic illness is happening. You are looking really good and this video makes me so proud of you. I don't mind at all that we get longer videos when there's no editing 🤩❤️ Sorry to hear you have arm pain 😥 I hope it feels better soon 🫂 And yes, regarding the 'Questions & Answers' video.. I noticed you are almost at 20k subscribers and thought it might be a way of celebrating that milestone. But whatever you decide will be great!
Thanks lovely.iy is a good ideA! I think I'll do a Q&A push on insta at some point! And no this condition is horrid it really is, there's no dressing up that fact, but finding ways to live life around it makes living with it more manageable. I'm so glad you and other folks are enjoying this new style of vlogs, they are so much easier to make and edit which makes me happy!
If we didn't do these fun things, we won't have anything to think about when we're laid up crashing.
Thanks Finn.
This is exactly my thinking my friend. Im still careful of course, and I am lucky that I have a partner to support me, but yes, these good times are the memories that keep me going in the hard times when Im laid up and feeling dreadful!
Your searching for words was just So Relateable!! Thank you for sharing.
I'm sorry it's relatable but I get how valuable relation is! How annoying is it when brains don't work! Rubber? Why did I think it had something to do with rubber? I guess they both start with the same letter 😂 thanks for watching 🙂
Well done video Finn. I have another take about risking a crash other than my mental health. I've been very ill with M.E. for 18 years. I have crashed hundreds and hundreds of times. I recently went on a wine tasting trip with friends. I then crashed hard for 10 days, but I'm just now getting my feet back after almost 20. The sickness of my crash will fade away into the dark hole where all of my past crashes live. I won't think about it as a singular event for long. But, I'll never lose the memory of the great time I had sharing friendship with others. When I take my last breath, it will be the memories of joy, not the memories of suffering that I'll have on my mind.
One other thing... "rolling PEM". I've never put a name to it. Now I have one. Thanks for the video. Be well.
Oh...subscribed!
Great T-shirt Finn! It's always lovely to see your face 😊 You're absolutely right to pick and choose things to do that make you happy and improve your mental health regardless of the PEM, that will come later. It wouldn't be healthy to literally sit still until the ME magically disappears.
This type of video works well I think, not much editing for you and when you couldn't think of 'rolling PEM' you put it on the screen when editing.
I completely agree. It's within moderation of course, it would be daft to return to the boom.and bust I was doing, or push myself to silly levels and go for a 5 mile hike, but as long as it's balanced and l put in measures to look after myself , then it's worth it. It's all calculated and balanced beforehand!
I'm so chuffed these videos are going down well. I do have some mild cringe and awkward feelings putting these up in more raw form but the ease of making content and the appreciation of them makes it well worth it! I just love being able to get content up again!
Thank you for mentioning the sweats. Your attitude is key. I am really working on this. No fight or flight.
The sweats are a nightmare! And yes attitude is everything!
Yours is the first video I have watched after realizing there is a name for this and YES❣️. So much fits and most of all the brain working problems. Thank you.❤️
Bless your heart. It was learning about post exertional malaise that made me realise l had ME/CFS. It's such a wierd symptom and so hard to manage. I hope you are doing ok?
Fin I have only just found you online and you are a breath of fresh air I have ME/ CFS and you describe me pardon the pun to a tee . Thank you for sharing your struggles it helps me to cope with this debilitating illness, I now am single after a long marriage and unable to work have gone through the benefits and PIP route successfully eventually big sigh of relief. However like you I also choose my battles and try to have a life of sorts and suffer badly with payback . Thanks Fin just binge watching your blogs x
Ah hello! Welcome to the FinnFam! What a lovely comment thank you! It's really tough isn't it , to balance taking care and pacing, with also still living! I am not sure I will ever get the balance right!
Sharing with others really does help though, and I'm so glad that these vlogs help because they help me too! Now I've abandoned all ideas of perfection....whatever the hell that is anyway......and just make videos how I can and when l can, it's like turning up and chatting with friends who get it and I love that it's recieved that way too. 💜
I often say to people "some things are worth feeling ill for" . Many people don't grasp that about M.E. anything we do is a cost / effort evaluation x
Yep exactly this! There is nothing we do that doesn't cost us, nothing we do that we mustn't first sit and work through painstakingly first! It means every joful event is tainted with knowing it's going to literally hurt like hell afterwards. It's so incredibly tough to live this way. We've just come back from camping and I'm an absolute mess! We had such a wonderful time though and that's why I did it, my life is richer, the memories are wonderful, I got to live for a few days. We have to don't we!
The funny thing is that you taught me about rolling pem, so you forgetting it felt like "Right, class, are you paying attention?" So I was all"Yes! Yes! I know the word!" XD
But I lose words just like you and my memory is bad. I also want to comment on the quality of life bit. I saw this one video by Jessica Kellgren-Fozard here on RUclips saying some good things about quality of life as a chronically ill person, I'll try and find it.
And you were perfectly fine in this video even though you were not feeling your best. Take care and I hope you feel better soon!
Aha! I love that and l can picture Yiu doing it! For the life of me l could not get the word at all! Usually that would mean stopping the video, looking it up, starting again, but l just went with it, so much easier and lm glad it's appreciated!
I shall have to have a look at her Jessicas channel for that video thank you.
Much love!
I enjoyed the video. As raw as you are about your ME/CFS will help others that may have it.
Thanks so much my friend!
Having my first rolling PEM. Holy shit this sucks. Feels cruel
Yep it is no fun at all. Rest up my friend!
I love this new format so much. It takes me back to the days I found you! My Finn!!!
Your symptoms of Fred sound so hard to to manage. You are doing so with that kind and gentle spirit of yours.
I am THRILLED you and FurrFurr have this amazing memory to last a lifetime!! So so so wonderful.
Thank you for always sharing your world with us.
Your book was incredible!!! It triggered me ( not a bad thing, I just related to it that deeply) , thrilled me, endeared me to even more if that is even possible.
Love you beautiful boy!!!
This is so much like the old days isnt it! Sitting on my bed, waffling away, not worrying about whether I was making sense or not
Fred is an utter ass but Im learning to kind of just accept that he is there and get on with stuff regardly or adapt around him as best I can. It gives me something else to waffle about too!
Im glad my book was a positive experience, my aim for anyone who reads it is to inspire hope, that more is indeed possible, in ways we might not have even considered before. My phallo journey took me to very unexpected places, and healed aspects I didnt even know needed healing. If I can pass some of that on, then Im a very happy man!
@@FinnTheInfinncible You are a beautiful man is what you are
Hey m'love! I love this style of video: it feels like you're sitting down with us for a chat and it's so sweet & comfortable 😄 I think you're handling all of this with extraordinary grace and good humour, and you are doing a brilliant job of adapting and moving forward with Fred in tow. FWIW I know the whole accessing words issue far too well: I say my words are getting 'stuck' and it frustrates me no end. I get very cross with myself (which of course isn't helpful).
I completely agree with your thinking about PEM being 'worth it' in these circumstances and I see it exactly the same way: for our MH and our quality of life it's essential to have these challenging but wonderful experiences, and we plan for the inevitable crash as best we can. Joy is one of the most important things in life and we should never deny ourselves a chance to taste joy x
I'm so glad you are enjoying these, I've been so surprised at how much I'm enjoying them too, and how well they have been received. It feels so much less stressful, much more relaxing for me too! It'll be interesting to see if and how lanahe to do one of these on a really bad day but I'm going to still try if l can!
The word finding is awful isn't it? I get cross too it's so hard not too! The slurring and stuttering is the worst for me l get so embarrassed, l know l shouldn't but it's hard not too!
And oh my goodness yes we need joy! Sacrificing and getting fatigue for some joy is always Worthwhile!
HI Finn, New viewer here. I've had ME/CFS for over 5 years. I would like to ask. Do you do breadhwork, meditations such as yoga nidre?.
Re: your walking outside. My mobility is also very bad. Try just taking two steps outside. Begin once a week, & continue weekly until your feeling ready to expand by then taking 3 steps outside. Even if you have to hold onto things. Or someone. I can now walk for 2 mins. Re: tasks & chores a valid tip I learnt from taking Pamela Roses Fatigue rescue course was to take all tasks & break them down in to. Very small, small, small medium, large medium. Large & very large. I hope this helps. X
Here’s a question: How do you deal with boredom and frustration when you’re too fatigued to do anything about it? (If you do get bored and frustrated when you’re that tired, that is)
In the beginning of my struggle with exhaustion, brain fog and crashes, I found it easy to rest because it was so clear that I needed it, but now it can sometimes drive me mad with boredom to have to spend another day in bed, and it’s not very restful to be so frustrated. I had acceptance, but it seems I only had accepted it as a passing thing, and now that it seems potentially permanent, the acceptance and peace of mind with it is crumbling.
Oh this is SUCH a GOOD question! I'm going to do a whole video on this because l completely relate! When my fatigue is high l can't possibly get bored, I'm too exhausted and zones out, but on my better days, where I feel ok , it's so hard as I know I need to pace but with the extra energy l want to do so much but l can't! Making myself stop, slowing down, sitting still, this is all stuff that I'm really not that good at but have had to learn quickly! I will do a vlog on this asap! Thank you!
I know you didn't ask me so I hope I'm not intruding...
I have alot of small activities I do from bed. I have these easy scratch paintings for example. I have games on my phone that don't take much brain power. I have streaming channels. And audio books.
Again I'm not Finn so sorry if i shouldn't have shared.
@@coffeezombie6032 Thanks for sharing! No apology needed. Scratch paintings look interesting, might have a try at that.
I have some activities I do from bed too depending on energy levels, like knitting/crocheting, playing video games, listening to audiobooks, watching youtube, learning about gardening, scrolling social media, watching movies, making plans for when I might have more physical energy and so on. The trouble is mostly that most of these feel like "passing the time" to me, and after years of having to spend most of my time just passing the time in order to even be ok-ish, my ability to keep doing these with any type of peace of mind is wearing thin.
@@kimzachris5340 ya I hear ya. But I try to frame it like ok I'm doing something: I'm making so and so a gift. Etc. Instead of ... ugh I'm stuck night as well do this
I'm like Finn...when I crash it is so devastating that I can't do anything or care about anything other than resting. It is like being a zombie. While I'm always ill, on days when it lets up, I read, study about my hobbies, or have a friend come by. I've had M.E. for 18 years and have had to give up bicycling, skiing, hiking and social gatherings. I'm a be-bop jazz fan and can usually listen to my music for awhile. I also like movies and subscribe to a couple of streaming services. All of the things that I mention however, if done too long can cause a crash. Rest is your friend.
It's hard to explain why it's worth the crash sometimes but we can only be careful so long. We still have dreams and goals and we have to enjoy our lives! I love this new style of video I always cut out my foggy moments but you are inspiring me to be more real about how my illnesses affect me when I'm trying to film xx
It's impossible to avoid all crashes isn't it? There are so many changing variables and besides, we DO need to still live our lives. I always pace, even when doing things I know are outside my envelope, but to not ever go outside my envelope would mean just staying still indoors and that would drive me bonkers!
I'm glad you are enjoying the new style! It's helping me as I now don't have to use energy editing other than the very basic, and it means I can show the way this awful condition affects us!
Ps.....did you get a Kofi email? :Love:
@@FinnTheInfinncible ooh I’ll have a look honey I am not the most technical on that site. But yes you will soon find ways to make things work for you I break up my filming each video takes three days, one to record one to edit and another to do the subtitles. Never stop reaching for your dreams mate xx
I just found your channel and I'm so excited! You're a gem! This is exactly the content I need right now. It makes me feel far less alone. :)
Ah welcome to the FinnFam! Im excited because you are excited! I hear you re being alone, making vlogs really helps me and chatting to lovely folks like you helps me to feel less alone too. Thanks for watching and for your lovely coment
Needed to hear this today. I commented a few videos back that I moved at the same time you did. What I didn't say is that I was also in a car accident in late June, so I was moving while in recovery from whiplash, AND one of my brothers died a year ago this week (and my father 11 months ago), so it's been a rough period for emotional stability as well. Today I chose not to push myself to do something I really thought would help my mental health, but between ongoing whiplash pain, an asthma flareup, and what is probably rolling PEM post-move, I finally decided that the emotional boost would be outweighed by the physical and emotional stress combined. So now I'm sitting alone in my house, sweating and brain-fogged (I have no diagnosis, but my symptoms are so similar to your description of ME/CFS), instead of out having adventures.
I think I did the right thing, because I feel awful today and I'm sure I would have been even more miserable out at a renaissance faire, but it helps to hear someone else's perspective that my initial impulse to push myself physically in order to help myself emotionally really IS a good impulse --- to a point. When I crossed that line, I cancelled the trip, but it's still the right way to think, as long as the scales weigh in favor of the long-term gain. I can't give up on having fun, even with everything that's weighing me down.
Thanks as always for your insights and positivity, Finn
Bless you thats a lot to deal with, and the emotional toll of this effects us physically and then vice versa in a never ending loop, its really tough I know. Your impulse is right, I think when we have tohose thoughts its worth listening, and then carefully weighing up the outcome. There really isnt a perfect solution with these chronic conditions, but its about what will benefit it the most in that moment really I think and it sounds like you need a mental health boost. Im sending giant hugs
@@FinnTheInfinncible Thanks muchly. I really appreciate it.
I think that M.E. is easily recognized. If you have the symptoms included in "Myalgic Encephalomyelitis, the International Criteria" including PEM, you can pretty much know what you are dealing with. But, PEM is the key tell. That said, I also recommend highly that if you are symptomatic that you have a health professional diagnose you. There are so many illnesses that can look like M.E. that are usually fixable. Thyroid issues, low cortisol and depression come to mind. But there are others including cancer that also need to be paid attention to.
@@RickLincoln thanks. I've been trying to get a diagnosis of any kind for about 35 years. The American medical system is a bit horrible, and it's quite prejudicial against people with chronic fatigue. Doctors are often quite rude to me, I find. My current doctor is decent, but still refuses to diagnose me with anything at all. I don't entirely understand the logic, but in general I know most people with chronic fatigue issues have similar "mystery conditions" that our doctors won't make effort to pin down. It's like they're somehow incentivized to leave us in limbo.
Thank you so much for posting this! This helped me so much!
I'm so glad it did, thanks for watching!
Brain fog suxs, I have never heard of rolling pem but fully get it. I always explain my me/cfs to ppl who don't understand as everyday I get so much energy $$ somedays it's just pennies. I flare when I have spend all my energy $ and go into debt. In debt (pem) there is no energy, zippo, zero.
Thank you fir sharing about FRED. I have found myself so ignorant to this before your videos. It seems difficult and treatment is really still progressing to ho folks with it. I hope things in between dealing with FRED give you some release.
Sorry for my spelling errors typing too fast
Hello my friend, thanks for eaty, and for your honesty. So many people either don't know about ME or have heard the wrong information so it's good to be able to educate about it. It really is no such a serious and awful condition that does not receive enough'attention or help.
Sharing with you lovely folks helps though.
And don't worry about the spelling, this is a place where we accept our imperfections, right?!
@@FinnTheInfinncible Exactly! haha
I was typing too fast.
Love you dearly! I'm so glad you explain how this affects you. Waffle on! I can not in any way compare what I go through to your degree of symptoms. But I can relate to the "pay back". With RA I have some days I can go "balls to the wall" as they say, but then there is the crash. Major fatigue and joints swollen and feeling on fire.
Thank you for your positive attitude and honest talk. My question would be...how is Chris handling these changes? Much love💚
Bless you, I love you too my dear friend! There is no comparing,.pain and fatigue is awful whatever the cause. This week has been hell for it!
That's a great question re Chris. I think I'm going to grab him for a video together 💜
@@FinnTheInfinncible Will look forward to that! When you have recovered💚
I hope you're taking advantage of disability benefits + PIP, it's in place for people like yourself x
I really appreciate you saying that thank you. I have actually just had my PIP assessment. I should do a video about this!
Much love and understanding for you Finn! *subscriber support hugs!* 🤗
I was in my best friends wedding today and I made sure I have the full week off next week to recover and have my crash. It was well worth the crash though, she was beautiful and the wedding was lovely!
I'm looking forward to to the time off to recover, but as always, wish I could do something useful in that time as well.
We love you too Finn!
I guess if I had a question to ask, it would be: Are you and Chris still thinking about getting a pet of any kind? And of course, how is the garden coming along or are you still figuring out where to put your things in your new home?
Hey lovely man! Yes, the crash is worth it for those lovely memoires, but still, always frustrating!
Great questions! Chris and I are planning another video together soon, to chat about how the move has helped us, but yes the pet is still in our future, we hope to adopt a dog, but itll likely be next year now. Home is really taking shape....garden shed is UP! video update coming asap!
@@FinnTheInfinncible I hope your garden works out for both of you, and I love just you guys chatting on the couch 😊
That will be fun if you find a pet to keep you company, I have a cat and he's my furbaby for sure! He sleeps with his paws in my hand or wrapped around my head at night hehe!
I live vicariously through other's happiness and it's wonderful to see! I'm hoping some day I'll have a good relationship like you and Chris; I also watch Shaaba and Jamie as well, I like going to sleep with happy thoughts! 🥰
Thank you for sharing....please don't Edit...record the real deal for all to see and understand....subscribed ❤✌🇨🇦
Bless you. Thanks for subscribing and welcome to the FinnFam!
Love the T-shirt The rolling PEM idea explains a lot about how people are able to keep pushing and pushing and then just can’t any more. I can completely understand how sometimes it’s worth the payback to enjoy a one-off event that you love x
I saw the t-shirt and just had to have it! And yes, rolling PEM explains what l often experience when l think I've tested enough post event and rested enough and then a few weeks later I do a tiny little thing and wham....I'm floored for ten days!
But yes this really is unavoidable, there is so much to account for that PEM is almost impossible to avoid anyway and life would be unbareable if l just didn't do anything so sometimes I just have to say sod the PEM and do it anyway, whilst putting as much in place to minise it and givng myself time to rest afterwards. I need a juggling giff!
I love a good Finn waffle 💙☺️🥰
My question is why doesn’t your backyard have any grass lol 😂
Aw I'm so glad you love a Finn waffle! And re my backgarden i...the previous tennants seem to have removed all grass and covered it with bark chippings to make it low maintenance! Such a shame really! We are just going to tidy it up and redo it as it's a proper mess where the weed control fabric is showing through. The landlord would like it returned to grass but it's not going to be a cheap job....but perhaps in the future!
Well said friend! Makes total sense to me. That trip is a spiritual one for you, and what you got from it this year, is getting you through this tough PEM spike. Love the new videos! Dude the Finnwaffle thing kills me😂❤️ i need a shirt #Finn🧇! I feel like i do that so often, my wife is usually 😐🙄😄 have a great week Finn🏳️⚧️🤗
Exactly this my friend, the emotional, spiritual and mental health gains from Glastonbury are very much worth this awful crash period! And Oh the Finn waffle! I really should do a T shirt!
Hello my friend. As you know I have CFS/me and I kind of experience it differently than you. I think here's what I want to share and I never hear you say it this way. maybe it is the same but we say it differently. Besides CFS I have degenerative disc disease I have neuropathy you know there's other things going on. So with CFS I feel while I'm doing something I am feeling massively unable to function and do it. It's not like I do something and then I pay for it later, it's that I can't even do it because when I'm doing something I'm so out of it and I feel like a train has run over me that I can't physically do the thing I want to do. now sometimes what happens for me is I'll do a bunch of things because for some reason when I take my Adderall as you know it will give me energy so I'll get some shopping done and a few errands and then when I come home I have a complete meltdown crying screaming I feel so overwhelmed and so burned out and so depleted emotionally and physically. But it doesn't last for weeks or days like you speak about with the post-exertion malaise. I just think it's interesting how we all deal differently with even the same condition. For instance I would have never been able to go to Glastonbury. Just the notion of going there dealing with the crowds and all of the other things going on would have completely wiped me out I could not do it. So you do it knowing that you would have this payback when you got home. But I couldn't do it in the first place I would never be able to do something like that. Anyways I just think it's interesting. I am so glad I have a service dog because without him I really don't know why I'm even living sometimes having CFS and a lot of things that come with it it's like your reduced to existing not living. So I do have thoughts a lot about dying and death and what is the purpose of what I'm going through and then I think of my dog who I love more than anything. Thank you for the waffle never think you're doing or saying things that are just not that important. Everything you say is important everything you say is interesting no matter how you say it. sending you much love and I hope this comment finds you feeling better.
Bless you my dear friend! It is very interesting how we each experience ME/CFS differently, lve read a lot of ideas about their being different clusters or subsets, which makes a lot of sense!
I do have a lot of times where I'm like you describe, that l can barely move, everything hurts and l honestly feel like I'm dying and in those times I couldn't do anything or go anywhere even if l wanted to.
Other times I have the deep fatigue and other symptoms that l use pacing techniques to manage and on this condition, it's where I can at times chose to do something occasionally like go camping but l know l will pay heavily for it after in the form of PEM.
Perhaps I shall make a vlog about my individual symptoms?!
I'm so glad you enjoy what l have to say however I say it, thank you so much!
You are such a sweetheart Finn you are a awesome person love ya darlin❤❤ xx
Aw bless you! Love you too!
I love your shirt Finn 😄🐱
Thank you! Saw it and had to have it!
Stay away from carbs and hydrate.
Thank you!
Great video
Thank you!
@@FinnTheInfinncible ur welcome!
Your symptoms don't sound fun at all 😥❤️ I'm glad you're exploring the ways in which you can experience things that make you happy. I know it's not easy but you are doing a great job in looking after you while this chronic illness is happening. You are looking really good and this video makes me so proud of you. I don't mind at all that we get longer videos when there's no editing 🤩❤️ Sorry to hear you have arm pain 😥 I hope it feels better soon 🫂 And yes, regarding the 'Questions & Answers' video.. I noticed you are almost at 20k subscribers and thought it might be a way of celebrating that milestone. But whatever you decide will be great!
Thanks lovely.iy is a good ideA! I think I'll do a Q&A push on insta at some point!
And no this condition is horrid it really is, there's no dressing up that fact, but finding ways to live life around it makes living with it more manageable.
I'm so glad you and other folks are enjoying this new style of vlogs, they are so much easier to make and edit which makes me happy!
@@FinnTheInfinncible ❤️❤️