Rebuilding a Life Within My Chronic Illness Limits

[@teasbian601]

This made me cry. Was diagnosed with POTS about a year ago, and probably have a fatigue condition developing too. I am constantly plagued with thoughts of missing myself, my old self. And being autistic means i hate the change! But trying to be gentle with myself every day. Sending you good vibes

[@FinnTheInfinncible]

Sending good vibes your way and massive hugs. It's so incredibly hard to deal with all this, especially when it's change we don't want. I also don't like change! You'd think I do considering I've gone through gender transition, but change I control is one thing, change outside my control.is quite another! I think what also makes this extra hard, is that we have to go against what society's usually calls for, productivity! In this world we are all measured by what we do rather than who we are, so when our health gets in the way of what we can do, we start feeling like a failure,.I'm really trying hard to redefine myself and my worth now, and find out who I am outside of my productivity Missing out is also tough, which is why I'm now joining these new groups, with people more matched to me, so hopefully, I won't experience that missing out feeling. Anyway, just wanted to say, I get it, I hear you, and I'm sending all good thoughts your way

[@Rebecca-jz8uo]

Completely resonate with the grief and sadness for my old life. I'm 22 and I've had CFS/ME for 3 years now, and it's so hard but also empowering to let go of our old lives and focus on building a new one :)

[@josefinesvenson638]

I am on a similar journey. Thank you for sharing your strategies. Beautiful. I keep telling myself to value the things that are still good in life higher and higher. It makes me feel better.

[@lilly6766]

I have just moved to a disability friendly house. Got it through the city. Its lovely! Groundlevel. My disability scooter outside my door, with charger. Its a new life. No steps anywhere. I have similar plans to about socialasing and ecercise. ❤

[@FinnTheInfinncible]

This new place sounds amazing! The perfect place to start a new socialising plan, I wish you so much luck!

[@stefaniedecoster2772]

Well said sweetie. You'll find your new rhythm and I know you have confidence that you will xxx

[@FinnTheInfinncible]

Thank you so much. Im excited to share it all! xxx

[@mossvibes]

🫶🫂 You’re making progress bit by bit! You’re taking care of yourself as much as you can manage! You’re getting better at it slowly all the time! You’re building your life up in a healthy way! That’s hard work and I hope it gets easier for you and you find increasing adaptions and goodness and growth 👏

[@kikomartin-pr]

Very proud of you Finn. I don’t do resolutions. I just aim to spend as much time with my sons as I can. They’re only young for so long before they start their own lives. So I work, take care of the house and most importantly spend time with my boys. They are my world. Have a great weekend Finn, Chris and Pip.

[@FinnTheInfinncible]

Bless you I love this so very very much. So many people just forget to live in the moment. Thank you for your lovely words

[@amyayars-evans4666]

Finn!!! This is so exciting to me. 😊❤ I love, love, love how you keep going, exploring, testing, etc. Then, accepting your findings and boundaries, once you discover and hone in those limitations. Your work on your MH shows, because you take such good pause to truly reflect and evaluate. I love you so much. I love Chris so much too. I love that he loves you thru and thru for the all of you that you are. ❤

[@FinnTheInfinncible]

Bless you buddy, your kind words means so much. I've done so much reflection this year and it's not been easy. It still isn't. I'm so glad I'm at.this realisation now , and I think the excitement for this next adventure will help with the next layer if grief and acceptance I need to process, but I have a feeling this year will be one of finding a new peace with myself and my life . Love you fella 💕

[@Tia34563]

You are so true man. I have fibrmagia and know exactly how you feel. ❤❤❤Tia from australia x

[@Naturesrhythm44]

You are navigating this incredibly Finn, well done. You should be very proud of yourself.

[@FinnTheInfinncible]

This means the world to me to read, thank you so very much

[@shelmishb]

Hello Finn! Thank you for this video. You made me see I should get a scooter a couple of years ago and now youre helping me make another big decision. I currently work remotely (literally in bed) and just as and when I can and its lovely to have a job and still feel useful BUT it comes at a huge cost as I have no energy to do literally anything else. I havent left the house for a year and havent got out of bed for months because all my energy is spent working. I need to get back to doing a bit of cooking and pottering in the garden (with help) but I cant do that while still working. I've been thinking about stopping the work and after seeing this I understand more that other things need to be priortised.... thank you xxx

[@FinnTheInfinncible]

Ah this sounds so much like me!!! I completely understand wanting to be useful, and it's so hard because I love my work too and I've been thinking who will I be if I give up my work, etc so I hung on and hung on, all the while everything else in my life slipping away. Urg! But having this realisation has been so freeing and has actually made me feel very excited! I am more than the work I do, it's not the work that makes me useful and worthwhile and I need to get back to doing other things to help me remember that. I'm glad this video helped you and I really look forward to hearing how your own journey evolves if you feel like sharing!

[@shelmishb]

​@FinnTheInfinncible Thank you SO much for using a spoon or two to reply. I will definitely keep you updated. The plan so far is to keep going until April while I sort my finances and then stop working, and embrace a slower pace of life. Will keep you posted xxx

[@FinnTheInfinncible]

@@shelmishb this sounds like a very very wise plan! I look forward to the update 💜🌈

[@oliverg6864]

I don't have mecfs but I find a lot of what you talk about relatable. I have autism and it takes me so much extra energy to do things than other people. So I have to plan the number of activities I can do in a day not to overdo it, or I end up lying on the couch unable to move lol! Going out is especially hard, probably because my brain doesn't filter sensory input so I'm just being bombarded with noise and lights all the time. So yeah very relatable Finn. I'm glad you're prioritizing your health and doing stuff for you! I should do that too, I feel bad that I have limited energy so I keep trying to work extra hard to make up for it 😅

[@FinnTheInfinncible]

Ah buddy I love it when my vlogs are widely relateable! Yes, I can understand how your experiences around autism cause chronic fatigue and the need to pace. I get similar experiences with sensory overload, especially in town, supermarket etc and need to tone things down with earplugs and glasses and after half hour That's enough and I could sleep through till the next day! Cognitive energy is a lot , and exhaustion from all the over processing and stimulation makes so much sense. I can also relate to that need to make up for it. It's so tricky isn't it? I think with ME it comes from feeling "less than" because there's something wrong with me and I don't want there to be, and also because society values us by what we produce and so if I'm not producing, what am I worth?! It's really hard to break these two things! I'm getting there though, it takes a lot of self care and valuing ourselves differently. I'm starting to enjoy stopping and snuggling on the couch with a blanket on myself, watching the wind spinner outside, turning on a digital fish aquarium in KZbin, and just be ok with being still and knowing my value is intrinsic Our bodies and brains work differently and that's ok 😍🌈💜

[@Tealover645]

Such an inspiring video Finn. Thanks so much. I am not quite there yet as I’m struggling to let go of things I used to love to do that I can no longer do, but what you are saying makes so much sense.

[@jess53nz]

Finn! My birthday is the 11th! What a great time of the year to be born. Happy birthday for next week!! Big 40 for me. I had a strange feeling for watching a you tuber on this one. I was PROUD of you on your outings! While i know I'm super lucky to sell be able to work with me/cfs it uses so much of my energy there not much left for anything else.

[@FinnTheInfinncible]

Ah thank you for being proud of me that's so lovely! And yay to being an Aquarius as well! Big birthdays for us both! It's great being able to work but do make sure to save some of your spoons to spend on nice stuff for yourself, I think spending all of mine on work is what's made me lose my sense of self. Leisure and pleasure is so important, especially when we ha e this dreadful illness. Sending a ton of love!

[@jess53nz]

@@FinnTheInfinncible dreadful illness indeed! You just cannot imagine it until it happens to you. I even had a friend who had it many years before i did. But didn't realise how horrendous it is. I've cut down to part time, the minimum my work will accept and can usually manage something for myself each day if i have a nap. My favourite thing lately is watching talks on rest less. My number one value is Love of Learning so being able to still do that from bed keeps me sane!

[@ruporter9834]

great vid/very inspiring/thanks/wishing you the best of new adventures

[@FinnTheInfinncible]

Ah thank you!

[@Prueandmore]

Hi Finn...It's so hard to readjust ....how do you manage to give Pip his walks x

[@FinnTheInfinncible]

Hiya, it is hard. I have help with Pip. I have a dog walker, Chris walks Pip in the evening , and I also use Borrow my doggy volunteers. I managed to walk Pip myself about once a week using my electric wheelchair, as long as I'm doing ok, and I get out with Chris's help to walk him at the weekend.

[@natashamason3328]

So very proud of you and loved seeing the updates of your adventures. Lots of love 💜xx

[@FinnTheInfinncible]

Thanks lovely

[@rouowward6917]

❤❤❤❤❤

[@CoMorbiditty]

You should call this Finn's Moist Adventures 😂🤣 Awesome Awesome!!! Oh l loved going along on your "strolls" such fun. As I say to myself, when Im setting up stuff for my students.... Im setting them up for success. Take away distractions. Block off places they shouldnt go. Put away things they shouldnt touch. And that is setting them up for success. NOT telling people the kids should know better not to touch, or keep out. You set yourself up for success Finn..... charge your chair. Make access easy for your chair. Join those groups. Rest rest rest... get bed nice and comfy, keep noise levels low for sleep, dog walker for Pip, easy to prepare food, swimming group, rest rest rest.... see you're set up for success. Make yourself a plan for success like the students have. Everyone needs a plan. Its great for you... you can track the patterns of your spoons. Make a new plan for success including the support and strategies you need. I have faith in it and you. And Chris... all stress melts away when he's around. it is exciting!!!!! 💜💜💜💜💜 You're a star!!!⭐⭐⭐ Congrats Sunny🌞🌞

[@FinnTheInfinncible]

Finn's moist adventures 🤣😅🤣😅 love it!!! Oh it was so much fun! And I LOVE your strategy, you are so right, remove the distractions and I set myself up for success. Everytime I've wanted to get out to a group I've said yes to a talk,.or some other work so I've had to cancel going out....now those distractions are gone, I'm having success! Thanks buddy

[@CoMorbiditty]

Im glad you got that... I thought I ended up with a waffle then @@FinnTheInfinncible

[@sarahjones-jf4pr]

HELLO AGAIN DEAR SOUL!! Yes have been through all the doubts, sexuality (bi Sexual)and neurological illness which robbed me of my old life, however what you say about accepting things the way they are and doing what you can I write now and potter around the garden old before my time so be it... damn it but sitting on my butt crying and lamenting I have done all that and realised nothing about this attitude will be helpful in the long run, you are sensible and forthright and you have a d..ck lucky you!!!!!!!keep going you will get there!xxx

[@FinnTheInfinncible]

Bless you! Yep, there's a time and a place for grabbing on tight to the past, kicking and screaming and crying, and then there's a place for letting go and moving on and embracing what's next. If I go by what's always happened in the past, I've always been presently surprised, so I reckon I will be this time too! Thank you for your lively words xxx

[@kavitadeva]

Hi Finn. I LOVED this Video!! ❤❤❤ I will watch it again for sure. It covered the ENTIRE terrain and all the complexities of yourJjourney with ME CFS AND EMOTIONAL Challenges. Finn, QUESTION: Do you find that you get OVERWHELMED very easily? I do. It's quite Difficult because once Overwhelm hits, It's so hard to regulate my emotions, and Then comes a melt down which takes hold and I am crying alot. Finn I am pretty sure you know, it's now based in science, that prolonged trauma leads to Chronic illnesses. Finn now that I have a Heavy Duty Mobility Scooter It isn't very fast, however my pup Finn trots right beside me. He is on a leash and we journey all over. Have you considered doing that with Pip? I think I told you that I used to be a dog trainer when I was younger and I just want to let you know that although Pip is a small dog he needs to be able to run. Yes RUN. The joy you will see your dog have by running next to you will be so amazing your heart will smile bigger than you ever knew. For some reason many people think that they have a small dog therefore it's made for an apartment no no no no no small dogs like any dogs need to run and play they have a ton of energy just today I was stealing so exhausted but I told myself Kavita get in your scooter get your dog and go to the park. Those times, when I do push myself, the payback is so worth it.🐕

[@FinnTheInfinncible]

Ah I'm so glad you loved this! . And yes I do get very easily overwhelmed, I too have problems regulating my emotions and at times, when triggered, can have a complete melt down. This especially happens with this like unplanned change. It makes sense that trauma can cause chronic illness. When we live in a heightened stress response it pushes out body into the sympathetic nervous system, the fight or flight response, rather than the parasympathetic nervous system, our rest and digest state, which of course is no good for us as our body is then never getting time to heal. This messes with our immune system and this leaves us susseptible to things like ME and so on. With everything I've been through in my life it's hardly surprising I have a chronic illness! Your scooter runs with Finn sound awesome! I do the same with Pip. I've trained him from a puppy to walk with me, he learned with the mobility scooter, and he walks just as well with my new wheelchair. I use a waist belt and tether his lead to that and he walks beside me. When we get to the park I put him on a long line so he can run, but so I can still catch him when I need! I'll have to do a video showing this! We'd never just keep him in the house, he has way too much energy! He has a walk every day with Chris, and I have a couple of dog walkers too. When I have energy I walk him as well which is about once a week and I love it! Yes video coming soon. Much love!

[@skully6223]

I don’t want to be one of those folks who come on & try “solving” someone’s problem or assuming they haven’t looked into (assuming they want to!) certain things-bc that may not be what you’re after at all. I just know I’m a stubborn horse of a person, don’t like doctors & certainly don’t like things that seem like quick fixes or magical medical treatments. I suffer from chronic pain, not the same I know, however, being an addict also, using pain meds was something I was absolutely against, yet didn’t want to be pushed into a surgery that would probably cause me more pain. I began to look for alternative ways to deal with pain & while doing so, changed my diet, began to lose weight & the pain subsided to be more manageable. While researching, which I’m sure you’ve also done, I’ve read that changing diet could perhaps help with auto-immune issues, perhaps with what you’re dealing with, & with other ailments. I’ve followed a bit of your story during your transition, but have missed lots of your new stuff & was just curious if you’ve maybe learned anything about diet & pain that perhaps I don’t know?! We all research differently & have access to different things so just curious?! Thanks-any replies welcome!

[@FinnTheInfinncible]

Hi my friend. My diet isnt too bad, but equally I haven't go into any of the special diets that are around as there isnt a lot of evidence that they are of any help in improving ME/CFS or PoTS or pain , and I still dont now exactly what is causing this arm pain yet, its just been assumed that its my ME. With my food, our household is low gluten as both me and my other half don't tolerate it very well, though we are not perfect at avoiding it completely. I also follow a low GI diet as much as possible, mainly to help with my energy levels