Life With ME/CFS is Frustrating | How I'm Learning to Adapt

Energy management for ME/CFS takes a lot of thought, everything has to be carefully considered, so much has to be sacrificed. and this can be so frustrating and upsetting. In today's video I talk about the ways Im adapting and the help Im getting t do this.
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😎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 health, and chronic illness. 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!
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Outro Music - 10,000 Reasons (For Finn)
By Kind Permission of Sonni Regan
• 10,000 Reasons (For Finn)
#mecfs #chronicillness

[@FinnTheInfinncible]

🙏Don't forget to subscribe for more imperfectly random and honest updates, and If you would like to support the content I create, please join our loving Friends of Finn community as a supporter or member ( And get Discord access and exclusive monthly bonus content!) finlaygames.com/memberships-and-donations/ 📘 Read my book! : finlaygames.com/my-books/

[@sebsensen]

I also wondered why it's so tiring to ride in a car with ME. I didn't think about the micro movements. Glad to finally understand :)

[@FinnTheInfinncible]

Yeah it threw me in the beginning, I couldn't understand why l would be utterly exhausted afterwards! But there's a lot of energy uses, physical energy in muscles in the body adjusting to movement of the vehicle, and lots of sensory processing going on, sounds, sights, which for me can be especially fatigue triggering. I use sunglasses and noise limiting earplugs when travelling to help a bit. I also have dysautonomia, where my body struggles to maintain temperature and heartrate and being sat in one position doesn't help this! I need to lie down periodically so I'm often having to recline the car seat. So yep, travelling is not relaxing!

[@stefaniedecoster2772]

Wise words again Finn. I'll drop Chris a message, surgery is a big thing and I'd be worried about having surgery on my eyes too! It's good that the surgery can be done sooner than expected though

[@FinnTheInfinncible]

Absolutely, he really is struggling to see now and they can't change his prescription any more as the astigmatism is too bad! This should really help, one eye now and the next mid next year.

[@stefaniedecoster2772]

@@FinnTheInfinncible Muchness your way chaps!

[@BeverleyButterfly]

It doesn't take much to flare us travel is so tiring and so hard but sometimes it is worth it! I know because of my own ME in behind but I love how open and honest you are with everything xx

[@FinnTheInfinncible]

Thanks lovely. Travel really is exhausting. I can manage it a bit easier in the car, as I can make myself more comfy and it's generally shorter journeys but public transport is impossible! Sending you love!

[@oliverg6864]

Omg, I never realized that about travel! I always get so tired traveling and being in a car, that's probably why! Wishing you and Chris the best for his surgery, I hope it all goes well!

[@FinnTheInfinncible]

I had the exact same lightbulb moment when it was explained to me. I often get the worst flares and crashes when an activity involves travel and I couldn't understand that because I thought I was just sitting on my bum sight seeing! But once it was explained it makes sense! Now when we travel in the car, I'm kitted out with pillows, my seat is laid back, I've got an eye mask and head phones ,I look ridiculous but it really makes a difference! Thanks for the well wishes my friend!

[@leehemmings4591]

Lots of love Chris you will soon be through your eye procedure I had the same procedure you will be fine and Finn seriously I am a counsellor and I would ask you to rethink your priorities and any obligations and refocus these on activities that allow you space and time to breathe relax de-intensify your life and allow some light hearted fun to creep in you have been through so much its time to offload a lot of responsibility to others and give yourself the freedom you so richly deserve. Your relationship with yourself and your needs should be your first priority and your relationship with lovely Chris😘😢

[@FinnTheInfinncible]

My dear friend l appreciate your words so much. I've passed that on to Chris. As for me, l know you are right, when I listen to my gut and look at my situation honestly, l simply cannot work right now and need to prioritise health and joy. But....I hate a but but I have to acknowledge it.......but I'm so sad to give up everything. I wanted to hang onto some of it! Partly because I enjoy it, especially my writing and vlogging, but also because of finances. This is why the last thing I'm hanging onto, if my second book has to be put on hold, is my public speaking work, because that pays well.....but still that's exhausting... This is my diallema right now.....and why investing in a counsellor made sense, I simply cannot work through all this complex stuff alone. I need help!

[@Truman-smom]

Hi hi hun.....tell Chris a big get well soon and he is in the best of hands, even though he likes to be in control many times. Does the ME mess with your depression, due to getting the set back of the crashing??? I don't have a fatigue based illness, but do deal with osteoarthritis and joint issues and I can relate to dealing with having to decide what is important sometimes, because it's in my shoulders and back and especially lifting heavy things can have me having to do a recoup day because of hurting to move much, plus the meds have side effects. I am glad you have the benefits letters behind you. But u have a nice garden if it is warm enough to get out and sit in it and snooze. Hugs to you both darling

[@FinnTheInfinncible]

Also Lee, Chris has asked if it's OK, can you say how the procedure was for you? How was your vision afterwards? When did your vision return and was there much pain? That's if you are happy to answer of course!

[@leehemmings4591]

@@FinnTheInfinncible its very individual but not too much for me just discomfort and some blurry vision at first and light sensitivity for about a week or so. There were changes in my vision from time to time during the healing process over about three months which again is individual but all part of the process . Chris dont worry you will be fine just expect you may be more sensitive to light and have poorer vision for about 1-3 months after the surgery and that is normal just do everything the eye specialist tells you stay away from reflective glare and bright lights tv and computers just in the first two weeks in my experience and avoid straining your eyes and you will get through it. I did not consider it painful more a discomfort that can be managed. Talk to the specialist about what you can do for that. I honestly have felt more discomfort after standing on the beach in Eastbourne on a windy day and having sand blown in my eyes. Do not rub your eyes no matter what if they are a bit sore rest them and follow the medical advice/protocols ❤️

[@leehemmings4591]

@@FinnTheInfinncible you are on the right track if public speaking pays well and also fulfills your innate desire to inform and educate others then focus on that and let the other stuff go for now because stress is accumulative when there is over committment and it is debilitating...and you my friend like me are a passionate individual who wants the best for others but sometimes we are not good at prioritising ourselves. ❤️

[@thehermitsexotics]

I love your new style of honest vlogs - being longer is good for me too because I tend to settle down and rest with my eyes closed while I listen, so you're doing me a favour by increasing my rest time :-D

[@FinnTheInfinncible]

It's so good to know this thank you. The only reason I think about ten mins being a magic number is because that's what "they" say works to keep people engaged and coming back for videos, but I'm done with trying to please the algorithm and trying to do this for business reasons, I'm doing it for the love of it again and it turns out most people seem to prefer this format and this length! It's real isn't it? Engaged, honest, chatting about how it is. And unfortunately so much of the current social.media just isn't that and isn't what the algorithm likes urg! Podcasts are lengthy and I see myself somewhere between a vlog and a podcast, so maybe I'm a vlogcast! 😂 I'm happy, my community of folks I love are happy, that's all I need 💜💜💜

[@thehermitsexotics]

@@FinnTheInfinncible Exactly - perfect isn't real, it may well be 'easier' for people to listen to or whatever but it's not how life works and it's not how people communicate in the real world - videos that edit out all the 'erms' and pauses and tangents that don't actually end up somewhere present unrealistic expectations of communication styles just like models in magazines being unrealistic expectations of body image.

[@FinnTheInfinncible]

@@thehermitsexotics so very very true. You know this is one thing grateful to Fred for. He's taken me back to my roots

[@joyoung7804]

hi finn , thank you for this vid , been lovely watching you , ive been in bed since saturday and today has been too overwhelming , your vid just broke my mood a lil so thank you , didnt take much of it in through fog but was nice to see you , rest rest rest raaaaaaaaaaaaaa driving me mad , take care gorgeous xxx

[@FinnTheInfinncible]

Ah bless you! It doesnt matter if you didnt take it in, if it lifted your mood, than that is fantatsic! I hope you are doing OK

[@foxbat9444]

I feel you so deeply Finn. Managing an energy limiting condition is so much work and what we go through is unfathomable to people who don't have an energy limiting condition. I thought I had ME/CFS and then tested positive for Lyme disease and got diagnosed last week. Sending you so much love. What we go through takes an incomprehensible amount of strength and we don't give ourselves enough credit.

[@FinnTheInfinncible]

Here here! 👏👏 We really don't do we! We just get on as best we can, and often give ourselves a hard time but rarely a giant pat on the back for all we manage! Sorry to hear of your new diagnosis, I hope there are some good treatment options for you? Sending much love in return 💗

[@jessicakullander8517]

Finn, I've been watching you this year, started my ME/CFS journey this year in Feb. This video resonates so much! Keep it up! I dream about doing "wellness tasks" too! How to fit it all in? in limbo. Thanks for sharing your journey!

[@FinnTheInfinncible]

Bless your heart, hello! It's so hard isn't it? The beginning has to be the toughest, l choose to believe that it must get easier. When we learn our triggers and our limits and what works etc. I know I'm still expecting too much of myself, I know I'm still prioritising spare energy on work when it should go on wellness, but it's not that simple is it? ME/CFS is a juggling act, and juggling takes so much energy!!! Sending you so much love, thanks for watching and for leaving such a lovely message

[@lizstubbs2969]

Love you lots finn keep up the amazing work and make sure you keep taking care of yourself ♥️♥️♥️♥️

[@FinnTheInfinncible]

Bless you, thank you Liz

[@lizstubbs2969]

@@FinnTheInfinncible ♥️♥️♥️♥️

[@jagdeepjano]

Haven't finished watching yet... but anyways... love ya Finn.. keep your head up might not always be easy to appreciate it over the internet but never forget just how MANY of us hold you in our hearts and are on your team x

[@FinnTheInfinncible]

You know, I really do feel it, which is why I decided to return to making really raw basic videos so that it was easier for me to edit them so that l could prioritise making them, as l get so much from the process and from chatting with you all. The wise comments and kind comments really get me through, thank you so much!

[@natashamason3328]

Sending a huge hug to both you and Chris xx

[@FinnTheInfinncible]

Thank you lovely, we both appreciate that!

[@amyayars-evans4666]

Poor FurrFurr. I would be nervous too. I am so glad you got a letter for your PIP case!! This is wonderful!! I love you beautiful man. Your challenges are immense and get you radiate loveliness. You are just ana amazing being.

[@FinnTheInfinncible]

I love that you think I radiate loveliness! I will re read this when I feel I'm radiating poo-ness! 🤪🤣 And I sent the extra pip evidence today with an accompanying letter from me to explain how this extra evidence proves my point. So fingers crossed! Thanks for your love my incredibly dear friend. It's quite magical how I can feel it across the miles

[@amyayars-evans4666]

@@FinnTheInfinncible Awww. I love that!!! 😘😘😘😘

[@peachyjjarred]

I want to give you a big hug!!! All of it definitely sounds frustrating. But it’ll be okay at the end. And your feelings are valid. I hope Chris’s eye surgery goes well,and it’s totally okay to be nervous. I believe in both of you!! You both got this. Kick life right up the asshole

[@FinnTheInfinncible]

Thank you so much, that made me laugh! It is such a lot to juggle, and with so little energy that's a big ask! But we muddle through well between the two of us. Thank you for your kind comment

[@chrissimpkins4144]

Wishing Chris an excellent result and easy recovery!

[@FinnTheInfinncible]

You are so kind, thank you! He has been a good patient and is doing well!

[@charliestrickland6194]

I'm just now getting to watch this, it's Friday night here. I guess Chris is in process of surgery by now? Much love to him, it may be scary but think how valuable the results will be!! I will be thinking of you both this weekend. Take big, deep breaths and realize this is temporary and soon you will have another victory under your belt!💚

[@FinnTheInfinncible]

Hello my dear friend! I am just catching up with missed comments, its been a hectic month! Chriss eys surgery went well thank you, we have just made an update! kzbin.info/www/bejne/ZnbbeIetfMZ0h8k

[@jagdeepjano]

Why doesn't Chris like watching your vids?!?!! Talk about support! Remember Finn, the friends of Finn/Finnfam are your personal army available at your beck and call..... Just give us the order..... and we will all come round, tie Chris to the bed, duct tape his eyes open and make him sit through every minute of every Finntheinfinncible video, start to finish!!! ;)

[@FinnTheInfinncible]

Lmao! I would love to see that!!!! He's never really watched them because when we met he just wanted to know me and not who I was, he said he'd rather hear it from me, which makes sense l suppose! But I do need help with his eye drops post surgery so do come round and pin him down for me please!

[@jagdeepjano]

@@FinnTheInfinncible 🫂♥

[@WeirdThingOfDoom]

I look here to learn more as a trans masc at the start of my medical journy. I am so sorry to here you worked so hard to be yourself and now you have other work cut out for you. but you have an amazing partner by your side and even thought both of you having a hard time. I am sure you will be alright hugs and love. Justin

[@judithlashbrook4684]

First of all; of course love, courage and all my thoughts and best wishes for chris during his surgery, Secondly; goodness do I feel you when you say that your book writing keeps on getting pushed down the list; for me it's having a shower that keeps on getting put off (if I have one in the morning then my day is over, 0 spoons... but if I wait till the evening then other things have used my spoons and I can't face it and just go to bed promising myself that i'll try harder the next day... thank goodness for wet wipes and dry shampoo!) I sincerely hope that your trip this coming weekend goes well, I know that it would be really hard for me to do something like that if I didn't have my earplugs, sunglasses and balance cushion... wishing you both all the best and thank you for the video

[@FinnTheInfinncible]

Bless you, I know exactly what you mean, and it's not just the wrotimgy, it's everything! My writing is just one of many things that's so far down the list! Showering is lucky to happen twice a week now! Thank goodness for baby wipes and for Chris's lack of smell 😂😂😂. I shall be taking my way mask, headphone and neck cushion tommorow! Thank you for your well wishes, l shall keep you up dated. Much love!

[@foxbat9444]

I've also been putting off a shower for days 🥲

[@beckett7707]

Hello Finn! I'm new to your channel. I'm new to being trans, but I've had ME for 16 years. I wanted to offer reassurance for your PIP review and let you know that I'm crossing my fingers for you. Also - I have horrible migraines that have been really lessened by using MigraLens filters on my glasses. I've gone from near-constant migraines to having one every few weeks. I don't know if you have tried that sort of thing, but it's something I can recommend. Hang in there with all of this - try not to "should" on yourself as you go.

[@FinnTheInfinncible]

Thank you so much for your kind message, and hello and welcome to the FinnFam! I. So good at telling everyone else not to should....but not so good at listening to my own advice, so I thank you for the reminder. 💜 These headaches/migraines are one of the worst things about my ME. The most common starting point is in bed in the early hours of the morning so I'm.unsure if the lens would help but l am going to look into it, thank you. It may at least help to ease it when I'm up and about during the day? Thank you for the PIP reassurance too. I've just had my MR returned and they haven't changed their decision, which we expected would happen, so now I'm about to start the tribunal process. It's exhausting, this has taken up most of the year and is something l could really have done without. I'm so grateful for your wisdom and kind words, thank you so much

[@beckett7707]

@@FinnTheInfinncible Even if they don’t prevent migraines, the lenses are very soothing when you DO have a migraine. They help dull the noise, if that makes sense. I’m sorry you have to go to tribunal, the process is so exhausting and torturous. Hopefully the letter from your occupational therapist will go a long way with the tribunal. It feels so counterintuitive to try to convince people that we’re “disabled enough” when the rest of the time we are trying to convince ourselves that we aren’t. At least, that’s what I do. When you have all your ducks in a row for the tribunal, I hope you find time to set everything aside and concentrate on something that brings you sheer joy - like a breath of fresh air.

[@kavitadeva]

Hi Finn, I really like these longer videos of you chatting about the different aspects of living with such a challenging condition and your adventures with Chris etc. Please send my best wishes and love to Chris regarding his eye surgery that's got to be scary. Finn I'm going to keep this short because I literally feel like I'm dying I am in so much pain brother I cannot really do anything without crying or screaming and then getting emotionally overwhelmed and breaking down and having a meltdown. I'm just being honest it is what it is right now. BUT, I'm going to share something brand new with you that I just heard about regarding chronic pain chronic fatigue all kinds of conditions that we don't know why we have them, there's no medical reason but it is there and it is real. There is a channel on KZbin I want to suggest that you at least check it out. I checked it out and for me I don't think it's going to work for me because you have to do a lot of inner work to get to the emotions that are causing this condition. But I found another Channel where it's all these people that have gotten completely well after being on death's bed with me/cfs migraines pain you name it. Here is the channel you can check out and I want to get your feedback, just what do you think of it. Here it is, PAIN FREE YOU I did not realize that there's a host of people that no longer have CFS or any and all the different ailments that come with it. I'm not saying it's for you or not for you but I think it would be not right of me to not share it with you at least. I love you I care about you and I understand what you're going through believe me I understand.

[@FinnTheInfinncible]

Hello lovely. It breaks my heart to hear you struggling so much. Crashing as hard as you are is awful, it's painful and terrifying and feels never ending. I'm sending you so much love. I will definitely check out that channel, thank you! And I will pass on your love to Chris 💜💜💜

[@kavitadeva]

@@FinnTheInfinncible Thanks Love. I want to get your feelings on this type of healing that Channel is about. It's supposed to be a big deal and I've just heard of it. Thanks for telling Chris I am sending peace and good out comes. I love you 💕🙏

[@maverickspirit208]

Can you please explain why you refuse to go off T just for awhile to see if it could be a contributing factor for a chance at getting some of your life back?

[@FinnTheInfinncible]

Can you please explain why your first thought is that testosterone is responsible, when many people, not just trans people, take testosterone for medical reasons, and it's never been shown to cause Myalgic Encepyomylitis. And also why you presume to know my medical history and think you know that coming of T is the answer?

[@maverickspirit208]

@@FinnTheInfinncible You are such a beautiful wonderful person. I know the horrific side effects of T in once healthy people and I just don't want to see you die. I pray that you discuss the possibility of giving your body a break from T with your new counselor. Just a break my friend, just a break and see what happens. Sending prayers.

[@FinnTheInfinncible]

@@maverickspirit208 where do you see these "horrific side effects of T" ? I think you need to ask yourself if you have been led down a path of misinformation and bias. Once again I remind you that testosterone replacement had been used for men women and trans people for decades for many reasons, it's not just used for transition it's used to treat many things. If it caused myalgic Encepyomylitis do you not think this would have shown up by now? What about all the other medication I am on? Levythyroxine for my hypothyroidism? , should l give myself a break from that in case it's that causing my illness ? No you instantly assume it's the testosterone, you instantly assume my M.E is caused by transition, can you not see the bias in this? Look up the trans broken arm theory. If you really care about me, or about any trans people, stop watching you know who annd the other GC channels, listen to trans people and read reputable sources and studies.

[@miloraoof7654]

Also, I had a couple of things from your Amazon shop that I wanted to send you for support. Where would I send it to?

[@FinnTheInfinncible]

Bless you buddy that's so very kind of you. If you mean my Amazon list, my address is on there...or should be....

[@miloraoof7654]

I couldnt find it

[@FinnTheInfinncible]

@@miloraoof7654 hmmmm when you go to the pay and dispatch it should automatically add it. If it doesn't, please do message me on insta/Facebook and I'll send you my address 💜

[@miloraoof7654]

Yeah, it didnt work. I will message you on facebook

[@gtd-9722]

Have u tried b12 injections? My cousin is trans and took testosterone and it caused malabsorption in her gut and she couldn't absorb b12 but her levels showed normal. She had the same symptoms as you.

[@teijaflink2226]

Very interesting comment, hope Finn sees this even if I would guess his doctor must have checked his B12 levels so he should probably know if there was a problem.

[@jackf8450]

Suggestion from a fellow chronic illness sufferer if you're not on low dose naltrexone 'LDN' you should be.

[@miloraoof7654]

I have wanted to buy your book but I dont buy physical books. I only buy electronic books, being that I am a minimalist and all into sustainable environment blah blah blah.

[@FinnTheInfinncible]

I am the same! I rarely but physical books now! This is why I'm also selling signed stickers and bookmarks, in case folks wanted something signed another way! I'm open to ideas if you'd like something signed and sent through the post! 😁

[@miloraoof7654]

Lol yes..I will wait maybe one day it will be on audible or something.

[@FinnTheInfinncible]

@@miloraoof7654 I really wanted to make an audible version. I'm going to keep asking them!

[@colapeppy2816]

I read it as me..

[@FinnTheInfinncible]

👀