Day in the Life with Chronic Illness | My Daily Routine Managing ME/CFS and POTS

Join me for a day in my life as I navigate managing my chronic illness. I'll share the tools I utilize to monitor my energy levels and assess my body's condition, which helps me plan my day and prevent overexertion that could trigger a flare-up of ME/CFS or POTS symptoms. Additionally, I'll provide insights into the tips and tools that facilitate pacing and make daily life more manageable.
🔗Links from vlog:
Garmin watch I use: Venu Sq 2 amzn.to/3zHP9p8
Garmin pacing app - long covid:sites.google.c...
Pomodoro app challenge timer: play.google.co...
Visible app (free and paid): www.makevisibl...
Eye mask with Bluetooth headphones: amzn.to/3Lr9bXh
Large V body pillow:amzn.to/4d6nrk2
Perching stool for kitchen: amzn.to/3W6AivU
Shower/bath stool: amzn.to/4bLgfZF
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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 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!
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Outro Music - 10,000 Reasons (For Finn)
By Kind Permission of Sonni Regan
• 10,000 Reasons (For Finn)

[@nataliaexplores6309]

Hi Finn, I've wanted to leave a comment for a long time! Thank you for all the effort you put into your videos and for sharing your experiences. My partner has a moderate ME/CFS and I have POTS (my POTS came a few months before his ME) I believe we both got ill after catching COVID 2 years ago. When he first got sick (it was a sudden severe onset) I was in a desperate search for anything that could help us, as I didn't know much about ME and came across your videos on KZbin, since then I have been watching every single one and I follow you on insta too :) ! I can honestly say that your videos helped me through the darkest times. I always find you uplifting and I admire how you deal with this awful illness and all the difficult circumstances life throws at you (DWP included, we're also dealing with the tribunal now !). It's not easy coping with ME, I see it everyday, let alone ME and POTS so thank you from the bottom of my heart for being vulnerable. Oh, and we're also based in South West England :)

[@FinnTheInfinncible]

What an absolutely lovely comment, thank you so very much, and thank you also for becoming a member! Welcome to the FinnFam and to the Friends of Finn club! Im sorry you both deal with these awful conditions, they really are like juggling jelly. I found the hardest part was the lack of info and not just the lack but the lack of CORRECT info, all the myths, the out of date info, the dangerous info, its a minefield out there. I hope you both have some good support. At least we have a few ME clinics around us and I gather you have had contact with Jamie Fulton at the Dysautonomia clinic? Please drop me a message f you haven't! Sorry you are also dealing with the tribunal stuff too, it makes me so angry that this is common place rather than a rare occurrence. Im hoping this change of government will do something about it. The good news is, that as long as you get good guidance on how to fill it all out, youll likely win at tribunal as they look at it all much more fairly than the assessors who clearly do not and seem hell bent on telling fibs and turning people away. My tribunal experience was such a breath of fresh air! Wishing you all the best of luck but hopefully we will talk more now you are a member! Thank you for your kindness

[@scrumlass]

Literally laying down in bed in searing chronic pain hugging my bunny plushie and watching this ✨💖✨ Thank you for all you do for us, Finn 🙏 Love you, Finn Fam 💗

[@FinnTheInfinncible]

The heart is for the pain. Sending so much love 💓

[@flowersstorms8863]

Thank you so much for sharing your day with us - I'm really glad you've worked out systems that help you and that you've got tech solutions that help you manage everything as best as you can. ME/CFS and POTS are horrid, horrid conditions and I wouldn't wish them on my worst enemy. Sending all the love as usual, dear brother xx

[@FinnTheInfinncible]

Hey lovely, yep, these hidden and little known about conditions are hell on earth! Learning to master them is a masters degree in itself! Thank you for watching, and for always getting it! Much love

[@sunnylove1008]

Reclining makes all the difference for me. The amount my heart has to work to fight gravity is huge so keeping my feet elevated makes a big difference. I always recline or sit with my legs crossed on my seat when I'm not walking. I also find cutting out sugars and massively reducing my starch intake helps keep my systemic yeast levels down and improves my health significantly. It's really hard but the benefits are worth it. It's basically like a gentle Atkins diet. I still eat tomatoes, carrots, onions, etc and a small portion of grains and starches and eat berries that are low in sugar like raspberries, but I focus on a protein rich diet with lots of greens. It's good for folks who've had a lot of antibiotics or alcohol use in their past as it tends to make the yeast grow out of balance.

[@FinnTheInfinncible]

Hey you Yep Im the same, the best position for me is always reclined, my office chair reclines, my body pillow allows me to do the same, and that way I can save a lot of energy and a lot of the heart spiking. Im not great at the diet, Im guilty of enjoying far too much icecream. Chris and I eat fairly well otherwise. He is gluten sensitive so we dont have bread in the house, and the ony time we have it is when we eat pizza! We also dont each much in the way of dairy, and we are vegetarian, though we do occassionally eat fish. But.....I do have a weakness at the weekends!

[@sunnylove1008]

@@FinnTheInfinncible Sound great! Icecream is my weakness too. So glad you have a good partner to help support your diet. It's so hard to eat right when you live with people who have all the wrong food laying around 😅 💖U guys!

[@flowersstorms8863]

I'm another person who finds reclining helps massively! Even though I don't have ME/CFS I do have to pace my energy very carefully with my Hypermobility Spectrum Disorder & Fibro and reclining is definitely the quickest and most comfy way for me to recover.x

[@natashamason3328]

Ah, I got to spend another day with you this week after all Hope you’re spending plenty of time relaxing this week to recover from our adventures 💜xxx

[@FinnTheInfinncible]

Both Pup and I are on deep rest 💜

[@ManyGhosts]

Wishing you strength, Finn. This is a lot to deal with, and you're handling it so well. 🫂

[@FinnTheInfinncible]

Bless your heart. I appreciate that so much thank you 🙏

[@martinacassells2661]

It is so interesting to listen to you and pick up on things I do the same or do differently and can try. I love listening to someone living with ME CFS rather a recovery story as I can’t connect with those, your channel makes me feel less like I am alone in this, daft as that sounds xx

[@FinnTheInfinncible]

That doesn't sound daft at all, I get the exact same feeling from lovely comments like yours! I'm really glad to make you feel less alone, it's why I share and it helps me feel less alone too. I love what you said about recovery and you are not the first to have said it. Recovery videos have their place, and of course recovery would be wonderful, but we can drive ourselves mad and beat ourselves up trying to attain it. For me , I focus on staying as well as I can and enjoying life as best as I can within the energy limits I have and if recovery comes then that's great but I'm not going to beat myself with a rod about it! I made a video about this recently which explains my feelings on this! kzbin.info/www/bejne/e6GuhZWjg7d3e9k

[@martinacassells2661]

@@FinnTheInfinncible ❤️

[@rainbowtropolis]

Thank you for some of the ideas to help manage some of the stressors, I appreciate your synopsis of your day! That part where Pip saw Chris come home, adorableness!!! 😍😍😍😍 I had a rough evening so sitting here with my TENS unit on and listening to your soothing voice helped me relax a bit as well, you have my gratitude lovely man! I hope you're sleeping well and keep taking care of yourself, hello to Pip and Chris! 😊

[@FinnTheInfinncible]

I love that you find my voice soothing! I also love that you found this so useful, that makes me very happy! And yes, isn't Pips bouncing just the most adorable thing in the world! We have some warm weather here in the UK, which is making my POTS problematic and sleeping tough! but other than that, Im bumbling along thank you for asking! I hope you are doing OK lovely man. Much love to you from us! xxx

[@rainbowtropolis]

@@FinnTheInfinncible It's been hot here too in Minnesota (26C, or 80F from my weird education over here lol), we're not used to the hot weather or the humidity! That makes me a wilted flower if I have to go outside! I have to do the same thing with the shower, can't have hot showers. I go in for a stress test next month to see if I have POTS/cardiac issues. My heart rate goes over 140 easily, and I'm constantly a wreck (no energy, can't sleep well, resting heart rate has skyrocketed). So hopefully they'll figure out what's going on with me! I had heart issues before, but ever since I had the rona last holiday season I haven't been right since. Thanks for the love and I'll send some more back for you all! 🐩🏳‍🌈

[@dragonfly_closet]

Yes. Rest bed is a super normally thing and makes complete sense 💚

[@amyayars-evans4666]

I commented before I finished the video. Pip seeing Daddy Chris is adorable!!!

[@FinnTheInfinncible]

I know! His bouncing is just the cutest isnt t!!!

[@BeverleyButterfly]

To be fair it hasn't been much warmer this summer lol thank you as always for showing realities with chronic illness! I've started sharing monthly blogs on my channel to show these realities xx

[@FinnTheInfinncible]

Thanks for watching! I still need to catch up with you!!! And yes I think it's very helpful for folks to see the reality of these hidden conditions 💜

[@racheldemain1940]

oh Fin when did this all happen?. Granted i haven't been well myself and not seen the latest vlogs. So So Sorry this has happened to you. i have to guard my Mental Health because no-one else will. I have said no to so much without losing the social side of my life even if that is the occassional coffee with friends. I find i need to sleep in the afternoon so set the phone alarm for 90 mins so that i get a rest but can sleep at night. Sending you gentle Hugs .

[@FinnTheInfinncible]

Bless you. I started getting episodes of fatigue back in 2018 and they got more and more severe with additional symptoms. Finally diagnosed with ME in 2021 and PoTS in 2023. It's been a huge adjustment for sure! However, life continues to surprise me in how the smallest things can still bring so much joy and how even when life doesn't turn out as planned it can still be pretty darn good!

[@fr33f4l4st1ne]

wow...funny world. I found a video from you 6 years ago talking about going on a date/being gay. Im a gay transmasc and wanted to hear other trans guys stories dating cis men. Then i tap on your profile and see your wheelchair. Huh, i use a wheelchair too! and then i see you have CFS and pots. I do as well. I also noticed that you began to talk about this, and got your diagnosis after covid hit us. If you arent aware already, covid has been causing long covid and possibly new onsets of cfs in people. I think i had it very mild before covid, but after getting infected twice, i am now bedbound almost all of the time due to it making my cfs worse and developing pots. I just want to let you know its really important that you continue to mask and take covid precautions and that anyone who cares for you and lives with you does too. Id really like to talk with you about this if you arent already informed.

[@stefaniedecoster2772]

Thanks for showing us so clearly sweetie!

[@FinnTheInfinncible]

Thanks for watching and sharing my day!

[@leehemmings4591]

It doesnt sound awful showers take it out of you I dont shower any more than you do but I am clean I wash the important areas skin dries out too much with tap water and all the hard chemicals. Love you two guys I hope you never split up because ofthese challenges

[@CoMorbiditty]

So cute how Pip is trained!!!! So amazing! Oh god .... my tax returrrn!!!! You're doing what you can my friend. Dont worry about what you cant do.... do what you CAN. Depression is similar.... the spoons to do self care always seem to be low. No probs. ;) Do you experience 'sudden crashes' out in public? What would you have to do to get back home if you were a bus trip away? I suffer from vasovagal episodes at the doctors. They told me to drink water to keep my blood volume up. Would that be a thing for you? Thank you Finn for sharing it has been very helpful. You have my thoughts and positive vibes for always. Enjoy the rest of your day.

[@FinnTheInfinncible]

Bless you buddy, thank you so much. Yes I do have sudden crashes when Im outside and its incredibly worrying. It helps now I use the wheelchair, but Ive had times when I am literally falling asleep driving it! Or I just cant drive properly. This is why I dont go out much alone or very often, its just too energy heavy for me and too much of a concern with the fatigue and other issues. Lots of water and electrolytes helps me, especially with the POTS side of things, and just doing things incredibly incredibly slowly and mindfully. Isnt Pip just the best! As much as he can be a teenage terror at times, he is such a good well trained boy really! Im so glad you enjoyed this and it was useful! Love you bud

[@lainemar]

Do you have something to keep your feet up when working behind your desk? I recently saw someone else on KZbin with a desk chair with a leg rest, and that’s definitely on my wishlist now!

[@FinnTheInfinncible]

I do indeed! I have a foot rest, but my chair also has an integrated foot rest too!

[@partypoison4730]

Hi so i have cfs and am gonna start T at the end of the year. but im terrified that the change in hormones will make me feel worse and Im scared to take that leap because of the unknown. Can I ask how being on T and having a chronic illness has affected you? pros and cons. ty you're the only guy on T ive seen online that lives the life that many of us do. (I also have vasovagal syncope which is simular to pots :D )

[@fr33f4l4st1ne]

I have severe mecfs and i have pots. Ive been on t for a year. I think it depends because ive heard of trans people on t have more energy from it amidst cfs. But for me? it really hasnt changed much in terms of physical ability. If anything its kind of helped i guess because its easier to keep muscle on t. and remember if t is really causing problems for you, you can always stop taking it.

[@kardwise9714]

Love ya mate.

[@FinnTheInfinncible]

Love you too 💖

[@vickyvkusnyatina6126]

Are you on Beta Blockers for yoyr Pots so that your heart rate can stay better regulated?

[@FinnTheInfinncible]

Unfortunately not, I can't take them because l have brachycardia as well as tachycardia, so I risk them making my heart rate too low. I also have high blood pressure which also complicates things!

[@vickyvkusnyatina6126]

@FinnTheInfinncible Oh I am so sorry! That does make things very difficult!!

[@leehemmings4591]

My little Daisy is sitting here in Brisbane Australia cocking her head watching Pip😘

[@kavitadeva]

Hi Finn, Thank you so FINN, I AM BEYOND PISSED OFF RIGHT NOW I WROTE A LONG COMMENT TO YOU AND IT WAS VERY REAL COMING FROM THE HEART TALKING TO YOU ABOUT THIS DREADED ILLNESS AND I GO TO EDIT SOMETHING AND ERASED EVERYTHING BUT THOSE THREE LINES ABOVE I DON'T EVEN KNOW WHAT TO DO I'M JUST SO UPSET I'M GOING TO START OVER RIGHT NOW AND SEE IF I CAN GET THROUGH ANOTHER COMMENT Okay my friend let me start over I'm actually crying because I was mentioning this in my last comment that I have very severe COMPLEX PTSD. And one of the main symptoms is getting overwhelmed and I mean getting overwhelmed sometimes by the littlest thing and I am overwhelmed right now because I wrote such a awesome comment between me and you and talking about things and how much I love this video and it all disappeared. Anyways I am so amazed how you detail and write out all your different categories and boxes and it really truly amazes me. I could never do something like that because I live just totally intuitively I don't map out anything I don't think I could do that. It's just I think differences in personality and our character you know? What I can say is you mentioned something about about having pain in your arms I would have loved to hear more about that. The reason I say that is I was glad you mentioned it I'm not glad you have it of course, but I am glad you mentioned it because I am dealing with Polly neuropathy and right now it's in my hands. And it is so so severe that my fingernails are turning up purplish gray and my hands are on a scale of 1 to 10 the pain is a nine all the time and if I try to hold something such as my phone I can only do it for maybe less than a minute before the pain is so bad and then I can't even touch the phone it'll fall out of my hand you know my friend it's so great to see you any chance I can because I love you and I love who you are and I love that you have Pip. There's nothing more healing than our dogs. As you know I have a service dog and I was consulting one of the greatest service dog trainers in the US she's really cool and I told her what I'm dealing with and how can I work with my dog and she said you know I think you need to stop working with him right now and let him totally decompress because what I'm going to tell you I know you'll relate to my friend which is I am in a independent living facility right now and I have had to call the elder abuse hotline six times. I am undergoing severe abuse harassment, discrimination, and they make up things that I have done and then they bring me into a room and say well we know you're doing this when it's something I never did and then they threaten me. And all of this is because there are 25 women here and you can stay as long as you want You have to pay rent it's not a homeless shelter but this has caused me so much agony I've gone to free legal services and thank God they are writing as we speak they're finishing a cease and desist letter. Not because I want to stay here oh God no but so I have the time to find a place because my motorhome as I told you before I don't expect you to remember but you know that you and Chris have your caravan as you call it I had a motorhome it's when you drive so it's your home on wheels and I lived in it for many many many years I've had four of them totaling 20 years of traveling around. But in this last one I wasn't traveling but I was living in it and I totaled it. I thought I was in drive and I wasn't I was in reverse and I bashed into a massive cement telephone pole. It was such a hard impact that I don't have that motorhome it was totaled and towed away leaving me nowhere to go but I would be homeless. Just saying that makes me sick I could never ever endure homelessness for even a day I'm way too sick and my pup no way. Living here in this facility has been not only hellish it's been pretty much unbearable so I'm not going to mention it anymore because I'm getting very upset. You know I really really truly agree with you that is so important too rest and as my chaplain says to me you have to go into ICU. Meaning nothing stressful at all no phone calls nothing and just relax and do something you enjoy or if you don't enjoy anything then relax for me I like to watch KZbin It takes my mind and allows me to just kind of unplug. My other major joy if you could call it joy but my major freedom although I can't leave here in other words they have you know grounds and they make rules and that's why I'm going to get that f the mother f out of here ASAP, I love my mobility scooter I have a really good one and that's how I just get out and go around the grounds and let my butt play and all that. The mobility scooter is a miracle for me because I love being outside and nature and not that I have miles and miles of it no way maybe a quarter of a mile I can go. Anyways this is probably the most boring recommenting and I apologize for that. I can't thank you enough for making this video because it was so awesome to see how you work with the illnesses you have. What a lot of people that have ME/CFS Don't realize is that it can affect any system of your body hence why you have pots, or why I have polyneuropathy and severe degenerative disc disease there's another couple channels of people that have this illness and when I read the comments it's so sad because this illness can literally make a person almost like they're dead. Can you please explain if you want to how the feeling is in your arms and do you feel pain anywhere else? Well I'm going to sign off for now because I feel this is the most boring bunch of words I put together and I'm losing the ability to talk I think I mentioned in the last comment that got all erased was that I'm having a lot of meltdowns at 66 years old because I have complex PTSD I get overwhelmed so easily That's the number one symptom of having complex PTSD is overwhelmed over stimulation and then I have these meltdowns where I just hysterically cry and cry and I have a lot of unliving ideation. I do not want this comment to be a bummer so sorry. I do want to say that I love you and I'm so happy you have your amazing little toy poodle or miniature poodle and that you are with Chris Please give Chris a big hello from me and a hug from me and I love your new caravan and all the things you've done like the dating it and how you have all that great stuff that pit can be inside of and everything. Well my friend I miss you when I don't see you so I'm so glad you put up a video I will probably watch it again sometime later. Take good care and many blessings to you and your family your little family over there bye-bye.❤🫂🔥❤️🫂🔥 PS. I have no energy left to go back and correct all the grammatical mistakes and the miss spelling of words my hands are on fire right now and I can't speak anymore into this microphone on my phone. I know you understand so I hope you can make out this comment.❤❤

[@FinnTheInfinncible]

Hi lovely

[@kavitadeva]

@@FinnTheInfinncible there's another comment I wrote you Please read it. I love you.

[@scrumlass]

Hello friend, just wanted to let you know that in case accidental deletion of your comment happens again, there is a way to recover it. (I understand that it must be frustrating to type so much from the heart and then have it all vanish in a flash.) Depending on what type of computer you are using (PC or Mac), press "command z" (for Mac) or "ctrl z" (for PC) if I remember correctly. What you typed should return in full. Hope this helps! Be well always and bless you 🙏❤

[@kavitadeva]

@@scrumlass Right back at you hello friend. I just wanted to let you know it was so cool of you to try and be of help. The issue is I'm not on a computer I'm using my telephone That's an old-fashioned word telephone on I am on my cell phone and it does this sometimes and it's so frustrating when you have a long comment and it's a great comment because you're working with issues that both of you are dealing with and then boom it's gone. I read your comment by the way that you were in searing pain doesn't it suck where is your pain if you don't mind me asking and also if you don't mind me asking whenever you're up to it maybe you would reply to my reply here and let me know what is it like for you to have ME/CFS? Be as well as possible.

[@scrumlass]

@@kavitadeva Hi there! Just to answer your question: I don't have an official diagnosis yet, but I'm almost 100% positive that I have CFS. I have been in a constant state of recovering from abuse since a very, VERY young age, which has set the base line of my constant cortisol levels.. I grew up with digestion problems (bc of elevated levels or cortisol) that were not only ignored, but I was blamed for them, which have cause stress and pain that have been building through the years, though I manage it as best I can by eating as clean as possible and nothing highly-processed. I was hit by a car about decade ago that broke my back in many places, and it takes all the energy I have just to get myself around the house to feed myself, do laundry, etc. I admit (although it's kinda embarrassing to admit a bit, but since Finn mentioned it in his vid as well, I don't feel bad about admitting): I don't shower or bathe myself as often as I should, bc getting in and out of the shower just takes up ALL of my energy. And to add onto that, my mother and I are caretakers for her aging husband, and up until 2021, we were both caretakers of her aging parents as well, both with dementia. I would love to get a CFS diagnosis, but unfortunately my state has an enormous deficit of doctors right now. Like, ENORMOUS. I'm doing the best I can day to day, and honestly, Finn's vids make me feel so safe in this world. My disabilities are invisible, and Finn and the Finn Fam make me feel seen. And I'm sorry about the phone situation😔 I hope it all gets resolved for you so you don't have to go thru that frustration anymore 🙏☮💞 Peace and Bliss to you always!

[@TCW1977]

Maybe try no T ....then you may improve?

[@FinnTheInfinncible]

Testosterone isn't what has caused my ME and PoTS and stopping taking testosterone would bring all manner of new problems

[@amyayars-evans4666]

My goshy sweet man. 🥹This was incredibly eye opening. Not in the I didn't believe you way, because I did. This just really makes it palpable. I am so sorry you have to change your life to this degree. This makes all the things THAT YOU DO, DO, FUCKING AMAZING! My gosh. Talk about a zest for life. I love you so much. And your little family you have made.