How To Cope With Boredom and Frustration In ME/CFS

Chronic illness causes many limitations and restrictions in what we are able to do, due to pain and fatigue and needing to rest and this can cause boredom and frustration. in this video, I share how I manage the.boredom and how changing my attitude towards resting has helped.
The book I recommend: Laziness Does Not Exist amzn.to/3ejnX5f
🙏If you are enjoying my content, please do subscribe!
💫If you'd like to support what I do, be first in the know, get more access to me, exclusive content and a private community discord server, then come join the Friends of Finn Club!
Join via KZbin: / @finntheinfinncible
or
Join Via Ko-fi: ko-fi.com/finl...
Compare Perks: finlaygames.co...
_________________________________________________________________
😎ABOUT ME 😎
Hello, I'm Finn, and welcome to my channel! I share first-hand experiences and practical advice on topics of gender transition, LGBTQ+ life, mental well-being, and lots of personal updates and daily life. Every video is served with a ton of honesty and a touch of humour! if that sounds like something you'd enjoy, please click subscribe and enable notifications to never miss a video! For instant updates, follow me on my social media accounts! Welcome to the FinnFam!
📘 Read my book! : finlaygames.co...
💜 STAY IN TOUCH💜
• TWITTER: / finlaygames
• INSTAGRAM: / finntheinfinncible
• FACEBOOK (The Finnfam community) : / finlaygames
🛒 SHOP WITH ME! 🛒
• T shirts and stuff:: teespring.com/...
• Phallo resources (videos, books and guides) : ko-fi.com/finl...
• Personalised videos : ko-fi.com/finl...
• My Amazon Shop: www.amazon.co....
• My Amazon Wishlist: amzn.to/3ybEBZK
🏳‍🌈GET MORE FROM ME!🏳‍🌈
Subscribe: bit.ly/2FuL9K3
FREE newsletter & Exclusives sign up here: eepurl.com/dM7Zw2
Visit my website and blog: finlaygames.com/
Outro Music - 10,000 Reasons (For Finn)
By Kind Permission of Sonni Regan
• 10,000 Reasons (For Finn)
#mecfs #pacing #chronicillness

[@ABLovescrafting]

I love you sitting there having a convo with us all. It's like having a friend over for tea or something. Very nice when I have to spend most of my time sitting around by myself. Cheers!

[@FinnTheInfinncible]

Oh this is lovely! I absolutely love that you experience it this way! Thanks for this lovely comment. See you for tea next week

[@ashleighhennessy]

Love your videos, i just stumbled across your channel yesterday and its been so life-changingly helpful! Im currently having a mini crash and I've just found your videos so comforting and useful, it honestly feels like im having a chatty sleepover with a friend, rather than being stuck in bed alone like a usual cfs crash. Thanks for sharing! X

[@FinnTheInfinncible]

Ah how lovely! Yes! You are welcome to come have a sleep over any time! Thats sounded far wierder than I meant it! Welcome to the FinnFam! I do love it when folks randomly find me! I hope your mini crash is easing, much love!

[@catlover7166]

I hear you, Finn! Been there & am still there. You reminded me that it's crucial to take this one day at a time. So I only have to accept this illness one day at a time. If I think ahead to the future, I get overwhelmed & really depressed.

[@stefaniedecoster2772]

The plants look lovely Finn! Struggling with 'shoulds' is a thing for me too, and when I manage to think, sod it, I'm having a rest I feel guilty because I could do more and there's always more to do. I find a lot of peace and calmness in taking walks and also in sewing and other crafts.

[@FinnTheInfinncible]

Thank you! I'm so proud of my growing plant family! I'd never had time for them all before! And that guilt l know wel, there is so much I need/could/should/want to do, but l just cannot do it all. I have to prioritise my health as we all should really, but so few of us do until it's too late, we are so conditioned to see slow as lazy, stopping still as failure, that book l.mentioned really changed my view! We all could benefit from finding joy in crafting, caring for.plantsbetc!

[@jabolbot9371]

Oh those fatigue levels!! Sometimes it’s just hard to sit up. Other times I just want a nap, feeling that way all day. The pillars are great. Thank you.

[@FinnTheInfinncible]

Absolutely this! Thanks for watching!

[@ceahorse56]

Your plants are so healthy and happy. Isn't it good to have something to take care? Something alive that needs you even if it's just a plant? Plus plants won't ask, are you still in bed are you going to get up today? Anyway I love to crochet and have made many many items for charity, blankets, hats, sweaters. Brings my heart so much joy that my items will keep someone warm!

[@FinnTheInfinncible]

Yes! That's why l love my plants! I love that you found something too, and with such a lovely meaning! I'm seriously considering taking up knitting 🤣

[@pmbluemoon]

Having just gone to a festival this past weekend Saturday, it's now Monday and I still can't bring myself to get anything done besides the bare "get through the day" stuff. I wish this was more talked about so that people don't think I'm "milking it" (pretending I'm in more pain than I really am is what they're thinking I'm doing) trying to recover enough to go grocery shopping, or do the laundry even. Not only is there the internal struggle, but then there's that external struggle of having to prove or validate why I can't just keep running and doing the same thing every day. It seems to take longer and longer to recover every time since my friends are like "you did this yesterday, why can't you do it again today?" How can I even explain it? They say "I have depression and I'm tired all the time too, but I still go to work every day." And no matter what I say they seem to think it's me just being overly dramatic. 🤷‍♂🤦‍♂

[@FinnTheInfinncible]

Oh buddy I hear you. Invisible illness is such a tough one to live with, especially because we often have to mask and push through so much in order to live, so people don't see what we are dealing with. Then of course there is the historical misunderstanding of chronic illness as psychiatric rather than biological, and although science has now caught up and we know this isn't true, the stigma is still there. This means that we have to live with and manage not only our condition, but all these other complex problems too, which can affect the support and help we recieved, and allow ourselves. I remind myself that those closest to me know the truth of what l deal with, it's not my job to prove my illness to anyone, and if l have too, well l don't need them in my life quite frankly! I'm strict now, I only spend my precious energy on worthwhile people and things and I ignore the rest!

[@pmbluemoon]

@@FinnTheInfinncible I wish we didn't have to do this for sure, but it's nice to know someone who understands what it's like. Thank you Finn, and thank you to Chris for being supportive as well! 🥰

[@erinhawkins1950]

my daughter is having trouble accepting that watching videos is using up some of her spoons because it's what she does to relax, but it still takes mental energy and she hates the idea of resting without doing anything at all.

[@FinnTheInfinncible]

Yep, this is often a huge stumbling block! Relaxation and rest are actually two very different things. Films, podcasts, watching TV, KZbin etc, can be relaxing downtime, but these still all use energy as they require cognitive energy to concentrate. They can also overly stimulate, with light and sound and with emotion. So, it's still important to have true rest, where we are lying still and giving our entire body and brain complete rest for a period of time. The upside of this, is that then we have more energy spare to enjoy relaxation like watching TV! Just taking three 20 min rest breaks in a day, to lie with an eye mask on and some white noise, sounds of water, soothing relaxation music etc, makes such a difference. 💜

[@amyayars-evans4666]

Finn!!!!! Your content is so relevant. I am recovering from LVA due to being the 5% that can't resolve swelling post RFF. Immobility just kills me. I am in a splint and can't bend my wrist, get it wet. It's tight, have to elevate. It's all very triggering from stage 1. I think resting is so inviting when I am fully capable and want it and need it. When it's required, I just want to clean and bust myself. So all that you say makes sense. I can't imagine, meaning, I can't truly wrap my head around, what that level of fatigue must feel like. Or....how scary it has to feel. I love that you adapt, process, flex, evolve. It's because when God crafted you, he really made a beauty of creation! Love you so much! Loved the video. The plants are gorgeous!

[@FinnTheInfinncible]

Ah lovely man, what a beautiful thing to say! I feel very blessed to have developed the ability to deeply reflect and respond and adapt in the way that I do and to be able to see difficult situations in new lights, passing it on makes me happy, especially when it helps! I'm sorry things are tough. Having our bodies not work or heal in the way we would like or expected is so hard. And what you said about triggering is interesting too. I didn't mention it here, but I could do a whole video on this...because I relate! Being unwell, being disabled, is incredibly triggering for me after growing up with a disabled mum. I never wanted that foryself and now here we are! This adds to the resistance and means acceptance requires more work! Plus, when we've spent so long having surgeries and recovering and being in pain, it is of course triggering every single time because it's hard not to compare it to the previous and assume it's going to be the same. This is why recovery, resting, just allowing ourselves to be in a state of illness, is so complex! Our minds and bodies resist because of all these things.....and then the social pressures on top to just get on! So we need to give ourselves a brrak, we are doing our best to heal nd rest not just our bodies but our minds too. Sending you so much love

[@amyayars-evans4666]

@@FinnTheInfinncible I love you so much. Thank you for taking time to respond so engagingly. You are such an incredible human.

[@FinnTheInfinncible]

@@amyayars-evans4666 ditto my very very dear and much loved friend, brother, and journey soul!

[@KJ1234]

Hiya! Your plants look so good! I'm glad you've been able to find some positives from this new normal. Proud of you! Hope you had a good time with the sheep in Wales! x

[@FinnTheInfinncible]

Hello my lovely friend! Yes there are always positives but they often take a bit of digging for! Plants are a definite positive! As for Wales....we were due to leave today....but we cancelled due to a yellow weather warning! Instead, we are staying at a friend's house in Oxford!

[@flowersstorms8863]

Oh I know the 'output = worth' trap only too well! I've only recently realised that I was only considering a day to be good if I'd 'done' stuff. It's so unhealthy, especially for us with chronic illness! I'm still learning to sit but I am getting better at it, and at pacing. Learning to say 'no', rearranging tasks to different days - it's all small steps, but Progress not Perfection is definitely the right mindset on this xx

[@natashamason3328]

Oh yes, those ‘shoulds’ get me every time. I really struggle with sitting still and will exhaust myself rather than rest, so I’m really not the person to give advice, but I find that putting self care items such as reading or listening to music on my task list help as I love to feel productive. I can then tick them off so I feel like I’ve ‘done something’ and they are beneficial to my health. There is definitely far too much emphasis on productivity even with supposedly more focus on mental health

[@FinnTheInfinncible]

That is sound advice....put self care on an important to do list! ticking something off is a good way to build a habit and help us to see that doing "nothing" is actually productive! I'm getting much better at sitting and not seeing it as wasted time but l do have to watch those shoulds! Rest rest test! Sending

[@natashamason3328]

Just ordered Devon Price’s book, thank you xx

[@FinnTheInfinncible]

@@natashamason3328 can't wait to hear your thoughts on it!

[@kimzachris5340]

Thank you so much for sharing your perspective on this! I'm definitely going to give that book a try. My place has also filled up with plants over the past years. Plants are so restful, and very good at teaching that you can support thriving, but not control it, it will develop its own way. Slowly, and without need for perfection. I've been thinking a bit about my boredom myself since writing that question, and I remembered that Frida Kahlo used to paint from bed (she was in an accident when she was young, and bedridden at times). That seemed to shake something loose for me, and I think part of the problem is that I have recovered quite a bit, but not yet set things up so that I can do the things that I find really meaningful and enjoyable without having to wait for really good days when I can be up and about for hours. So in some ways I've put my life on hold for quite some time now, waiting to get better, and I've probably reached the point where I would want to get back to some things, but need to find new ways to go about it that can support my continuing need to pace myself.

[@FinnTheInfinncible]

Hey Kim, I'm glad this was helpful, it was a great question. I love that about plants, hadnt thought about it like that! And I understand about the life on hold. It's hard as of course we want to get better, so accepting seems odd! I had a similar thing with my mental health, l kept saying, when lm well enough I'll do xyz, and l was never well enough! In the end I decided to just do whatever it was anyway but adapt it to whatever I need. So I do the same now with my ME, I still hope to be well, to be better, but I'm not waitin, I'll just do what I can now , adapt things, etc and then adapt again as and when l need. Does that make sense?! So basically yes, change your life and set up things that fit what you need now, that will mean you have more things you CAN do which will help fight the boredom! I can't wait to hear what you think of the book!

[@catlover7166]

Thank you so much for this video! It is very positive and helpful.

[@layladlovely]

I’m a drag performer, and I’ve been dumping all of my weekly energy on six hours of work a week (16 minutes active performance). I then spend the rest of the week housebound or slowly shuffling to doctor’s appointments. The PEM is horrific and I’m struggling with basic care. I’m frightened to step away from my job even though I know it’s beyond my healthy capacity. Because I *can* mask and push through I feel compelled to. It’s negatively impacting every area of my life except for my financial security, but putting myself in health time-out instead of waiting until I’m in a full incapacitated PEM flare feels like making excuses and not trying my best. Anyway, pacing is freaking hard. 🙃 The boredom sucks, but feeling disempowered/stuck/vulnerable with almost no control is the thing that gets me. It triggers my PTSD which messes with my Dysautonomia, and that flares my pain/fatigue and it’s a big doom circle. 😂🤦‍♀️ Thank you for this content. It’s really grounding me rn. 🏳️‍🌈💚

[@FinnTheInfinncible]

Hello my dear friend. Reading your comment really struck a chord with me as I've been through and am going through similar in regards to work. It's so hard when we need and want to make an income, and when it's work we enjoy, to simply stop doing it. Like you, even a few hours wipes me out but lve kept on because I can mask. I do webinar talks, and after an hour I'll then be wiped for a week but I tell myself it's worth it because I'm earning, because I have control in my life. Lately I've had to stop all work and like you describe, I feel very much out of control and it brings up things from the past, which then in turn affects my mental and physical health, so I really do understand this vicious cycle! Living with chronic conditions is so incredibly complex, especially when we have past trauma too, it makes the whole thing far more complicated. I think I'm going to have to make more videos on this,! I'm glad this video was relevent, and that it grounded you! Thank you for sharing so openly with me

[@MrPotatoemouse]

Oh my god Finn and Layla, please don’t take this as unsolicited advice, but the one thing I regret is trying to push through. I honestly believe it’s why I’m sick again now after 10 decent years studying and working.

[@TheRogueDM]

Plants are sentient in a way and respond to positive talking. Don't know if you saw that experiment where a class of kids had to either say nice things to Plant A or say horrible stuff to Plant B, and after a period of time there was a huge difference between the two.

[@FinnTheInfinncible]

Oh yes! So much research on this, of course everything is connected. Its likely why my plants grow in strange ways, because I am strange

[@RogerBluesky]

You were recomended to Me by Dr Z, so glad I stopped by!!❤️❤️

[@FinnTheInfinncible]

Ah yay! She is fantastic! I've done a couple of interviews with her and loved chatting with her!

[@GrowingObsession]

i feel like we're having parallel journies 😂 i've also had to come to terms recently of like not being able to do the things i used to be able to do. part of it was frustration of having ADHD and being unable to properly commit to any long-term projects, but then that took and additional beating when my chronic pain started getting worse and worse. for me i learned that it's okay to do a tiny bit at a time, go away and come back and it'll still be there and i can do a little more! yeah it takes way more time than usual and its frustrating not being able to complete things in a single run like i used to be able to when i was in my teens, but in the long run its much healthier for me and my body

[@FinnTheInfinncible]

Parallel journeys indeed! I hear you, not being able to do what we'd like, not being able to commit to projects, it's so hard, l have so many ideas and no time or energy to do hardly any of them! But, you are right, the payoff, in having a healthier body and my mind is much better, but it still takes a while to let go of the frustration and adjust doesn't it!

[@oliverg6864]

I think your hair looks great! My wife cuts my hair for me, I used to cut it myself but it's easier when she helps. She does a good job and it doesn't cost us anything. I'm glad you're enjoying having plants! I love plants too, it's kind of my special interest lol. I don't have any house plants because the cats would eat them, but I have a big garden outside. It's fun watching them grow isn't it??

[@FinnTheInfinncible]

Hi Oliver! Ah yes, watching a plant grow is amazing! Thats how this started really, I kept finding them cheap in supermarkets as tiny seedlings and taking them home and marvelling at them taking off! I cant wait to develop the garden now! My hair grows as mad as plants do. I got sick of asking Chris to take me to the barber or asking him to do it, so I decided to give it a go and followed a couple of KZbin tutorials....and just kinda made it up as I went along! Its not a bad job....and it grows back!

[@FinnTheInfinncible]

Hi Oliver! Ah yes, watching a plant grow is amazing! Thats how this started really, I kept finding them cheap in supermarkets as tiny seedlings and taking them home and marvelling at them taking off! I cant wait to develop the garden now! My hair grows as mad as plants do. I got sick of asking Chris to take me to the barber or asking him to do it, so I decided to give it a go and followed a couple of KZbin tutorials....and just kinda made it up as I went along! Its not a bad job....and it grows back!

[@coffeezombie6032]

I love the plants! As always I really enjoyed the video. Thank you for a clearer answer to this question. I might just be trying to do to much even while resting. I will find a balance eventually. Good news! My wife's top surgery (augmentation) has been moved to this Thursday! She's over the moon! I saw your glamping photos! They look fantastic :) Have a good day

[@FinnTheInfinncible]

Thanks my friend! I was the same, l thought it was sufficient to rest whilst reading or watching TV, or surfing the net, and whilst that might be slower down time, it's not proper rest, not the rest that bodies with energy limiting conditions like ME need! We have to properly stop , shut out all sensory stimulation and reset our nervous systems, even just for ten mins , 3 or 4 times a day. It's hard l know, I'm often good at stopping still but not so good at resting! It's great news about your wife! Please wish her a ton of luck and love from me!

[@coffeezombie6032]

@@FinnTheInfinncible I will. And thank you for the advice :)

[@suliman7147]

I have broke up with my ex 8 month ago after 2 years being together and now after corona the ft is getting worse and worse + the depression . I just hope that I can forget her and move on

[@FinnTheInfinncible]

I'm so sorry to hear this. Endings are like grief, it takes time to process the loss in our lives. With time it will heal. Sending you much strength and love

[@suliman7147]

@@FinnTheInfinncible thanks my brother 🖤

[@kikomartin-pr]

So sorry for your loss of relationship. Will add you to my prayers that things get better. I know the feeling. After 2 children and 15 years together, my ex-wife decided she was bi and walked out on the 3 of us for a woman. It was brutal for quite awhile. I fought depression but it did get better after about a year. Hugs.

[@andreastepien7628]

Was really looking for some ideas for managing boredom. I’ve been virtually bedbound for 2.5 years now and I’m simply so desperate for some ideas. I use mindfulness a lot, to listen to and help me cope. But there’s only so much mindfulness one can cope with lol! I wish there was an online social life for people with ME, to enjoy meaningful connections with people who are stuck in a similar place! Now if I had the energy I could develop lol…..

[@joyoung7804]

hello darling , just found you, im jo from south london . lovely to see you , ive been poorly for soooooo long and bored with it . i do a great deal .... from my bed so hi , will follow you and would be nice to natter x take care fella x

[@FinnTheInfinncible]

Hi Jo! Welcome to the FinnFam! I hear you on the boredom, but yep, its surprising how much you can get done lying down....o err! We can keep each other company!

[@CricketGirrl]

Wonderful video! I'm severe, sick for about three years now. The boredom kills me. I end up reaching for my devices for entertainment, which destroys my brain.

[@FinnTheInfinncible]

Bless you. It is really really hard, especaially when weve been active before. I was saying to my partner the other nght that I cant believe how simple it once was to just put on my coat and go for a coffee! For me its about letting go of all those old things and not even trying to get back there as Im just setting myself up for failure. I cant make this new pooly me fit into that old fit me box! All I do is make myself more sad. So now its simple things, sprinkling some bird seed on the bird table and curling up in a blancket on the sofa watching the birds land. This simple thing, taken on its own merit and not compared with the me that used to go for coffee, is really enjoyable. Does this make sense?!

[@trmp9923]

I've been in bed since 2016, I'm only 34

[@Songe467]

I am struggling with this at the moment. It's going into a winter here in Australia and I have a chronic illness that affects my joints and muscles as causes chronic pain and chronic fatigue and degenative and each winter I go into what I can only describe as hibernation. Each winter also gets worse. I feel like I've already read all the books, watched all the tv, films. I am learning to not set myself impossible tasks that take too much energy and will never get done and have the weight of unfinished, unstarted tasks affecting my mental health.

[@miloraoof7654]

Im going to read that book you mentioned "Laziness Doesn't Exist"..I love books..Thanks for sharing!

[@FinnTheInfinncible]

I'd love to hear what you think of it!

[@snic5805]

Thank you for this! Does anyone out there feel like they CANNOT focus/engage/get stimulation from anything? Even if you can do things you just don’t have the capacity engage in anything ever?

[@miloraoof7654]

Those plants look beautiful!!!

[@FinnTheInfinncible]

Thank you!

[@jagdeepjano]

Thought I left a comment on this but KZbin is playing up, it seems! Anyways i just wanted to say, that you are not alone when it comes to the plants - it's well reported that KING Charles does the same!!

[@FinnTheInfinncible]

Well then I am in good company!

[@tamarapalmeirat4486]

✨

[@kikomartin-pr]

Finn you look great. The plants have you in great spirits right now. Happy to see it. Enjoy your time in Wales. I’ve never been to the UK but hope to visit in my lifetime. I am 42 and hoping I have loads of time left. Hugs from your friend in Puerto Rico. If you and Chris ever come here, I’d gladly show you the sites. Many people speak English and as you can see I do so you wouldn’t have trouble at all. If you ever decide you may like to come to my tiny island (ok not my island but where I live), I’ll give you my number on Instagram so you can call and get ahold of me. Would love to meet you two!

[@FinnTheInfinncible]

Ah thank you! These plants keep me sane at times! We didnt make it to Wales! We had a huge storm warning, so at the last minute we cancelled! Instead a friend offered us her empty house in Oxfordshire so we had a mini break there instead. Puerto Rico sounds much more fun! We havent been abroud for a few years so you never know, we may well take you up on your kind offer, thank you!