Surviving The Slumps: How To Manage Low Energy In ME/CFS
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- Опубликовано: 19 мар 2024
- Managing low energy in ME/CFS is frustrating and difficult. One wrong move could lead to a PEM crash and its impossible to get anything done. All I can do is rest and patiently wait for my energy levels to hopefully raise a little. In this vlog I chat about what's likely contributed to my recent low energy,, and how I am managing my limited energy and the frustration that comes with it. There's also some explanations about my recent lack of content and out of sync content too as the low energy is making it difficult for me to upload! Thanks to you all for your patience.
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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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• 10,000 Reasons (For Finn)
Im so glad i found your channel. All i seem to find is channels on 'how i cured my cfs' so frustrating....
Ive had cfs for 6 years and stopped work 5 years ago, it still baffles and frustrates me.
No day or PEM crash is ever the same with me. Im clearly in a cycle of push and crash because no one activity is the same for me.
Plus my brain plays tricks on me constantly telling me i can and should do more than i do.
Other people dont help or understand.
I have a wonderful husband and mum to 2 amazing teens who are autistic but its alot...
My question is how do you learn this forever changing dance. I think ive got the hang of it and by body tells me 'oh you lovely sad full and bang im back to square 1.
Youve got such a chilled presence and voice... thank you.
This video made me feel less alone in my exhaustion.. thank you. Funnily i thought the video was quite coherent . Deffo feel the different time zone of chronic illness! Much love
You handsome little bugger. 😊 I wanted to crawl inside your lap and let you talk to me, looking all cozy.
You look like a cozy little astronaut. 😂 Cozy is how you always look. It's a vibe and it's amazing. You have a magnetic soul, no matter what energy you are in.
I love, love, love that you have allowed yourself to surrender to the life you had. You have an amazing fiancee that loves you unconditionally and all of us that love you the same! What's to stress over regarding videos. It's you we seek. Any ole bloody way. 😊😘Love you. Xoxoxo
Ah buddy how much I adore you too! I'd be very happy for you to snuggle in with me, i think there is just about room ! 💕
Thank you for your lovely words. This place of acceptance has taken a lot of work over this last couple of years and it's a relief!
Love you fella xx
The greatest thing I see is that despite everything you don’t actually give up and into it forever. It makes perfect sense to “get used to being sick” you’re have to embrace it to really understand it
Thank you my dear friend
Hello there Finn! I love marshmallows ☺ Especially when you talk and I can relate 😁
I think anyone out there with a chronic illness on top of everything else completely understands taking time for yourself when you need to, instead of being a slave to the soul crushing youtube algorithm monster. I made just a few videos and posted them, and all of a sudden getting bombarded by youtube emails and pressure to make it bigger, better, more viewership, yadda yadda blah blah blah. Not everyone wants to be a sensation, but at least give everyone a chance to be who they want to be, it's your channel after all! That's my rant about that. Aside from "randomness leads to surprises" as me and my partner say to each other! 🥰
Love you Finn, Chris and Pip! Thank you for being out there and on my screen, you are appreciated! ☺
If you want a longer read, here's the rest of what I'm doing lately as well:
I had a 3 day Holter monitor test, they found tachycardia when my blood pressure tanks when I stand up. After having either covid or the flu over the holidays, my heart and autonomic system in general went completely bonkers. I've been trying to get my GP to realize this started after being sick (before I was sick over the holidays, I had stage 2 hypertension constantly, then after the sick, it's all gone and quite the other way to hypotension). I've had to go to physical therapy so I had to cancel my support groups so I had enough energy to barely make it through the day/week without compromising what little mental and physical integrity I have left. (I think you call that spoons?) In any respect, I think I've lost my spoons as well as my marbles, dealing with GP who won't do much besides tell me "I don't know how to treat you because your trans. The female/male thing is confusing." as well as the understaffed clinics where I live. I don't drive because of anxiety, and my partner can't take time off because everyone is now pushing him to be the main manager where he works.
After thinking about all that, I grab my geriatric cat, a blanket, and take a nap.
So lets all grab our pets, our favorite blankets and take naps until we all feel well enough to deal with our days!
So grateful for any videos you share, but please never feel like you need to. Huge snuggle hugs 💕
I appreciate these kind words so much thank you!
Sweetie, you are a superhero for doing the fulltime job of managing something that has no rhyme or reason ! Muchness your way x
Thank you so.much, this full time job is bloody hard work!
You are perfect. Totally get you. Thank you 😁💕✨
You are so kind. Love you
@@FinnTheInfinncible Love you too! And just where is this Amazon wishlist?
Thank you so much for your videos! You always hit the perfect tone between positivity but also being realistic and open about your struggles and how crap this illness is. I love watching your stuff, keep up the great work!
Thank you so much for this lovely lovely comment! It's so nice to hear that I hit that sweet spot; I always want to be honest but at the same time remain the upbeat bloke I am! Sending love and appreciation your way! 💕
So much I want to say, as so much of this resonates with me. BUT... I'm in a fibro flare atm thanks to an issue with my supply of medical cannabis. Then I got recalled after my mammogram and had to have a core biopsy, which has completely wiped me out. The news is all good on the breast cancer front, but people keep reminding me that it's only 8 days since the procedure and I need to look after myself.
So, suffice it to say, I love the fact you said the pred was helping your "polygamous arms!!" There's an image I'll never forget!
Lots of love ❤️
I enjoy all of your videos. It doesn’t matter what order they come out. Have a wonderful rest of your week and weekend.
I appreciate that so very very much. Thank you
We do live on the edge! Share what you’re able to Finn. When I’m so tired it takes so much energy to just eat and digest food. Looking forward to my next decent day to visit a local used bookstore. ❤to you Finn
Bless you I completely understand. Living on the edge and never knowing when we will be well is so hard. I hope you get to visit that bookshop soon
You get a second, sensible comment from me now I've watched your lovely vid which I found really comforting (just what I needed today when, as you know, I'm also dealing with teetering on the edge of a bad chronic health issue and having to heed my own body's warning signs with my asthma!). I'm so sorry you've got to put the swimming on hold but I'm glad you have other things you can do. Frustration, acceptance & surrender - yep it's all part of the chronic illness rollercoaster we're buckled into, dear brother. New meds always mess us up when we're on complex med regimes. I really hope the pred helps your symptoms and gives you some relief xxx
Also I LOVE that blanket 🤩
I'm so glad this was comforting and well timed. I'm so sorry to hear what's going on for you, it really is such a roller coaster isn't it? No choice but to buckle in and hang by the seat of our pants! Surrender is key! It's not an easy place to get to, especially when we are so conditioned to fight, but surrender is an action it's not passive and I have to remind myself of that. It's a solid effective action that I can take that makes things better whereas fighting what I cannot change is utterly futile! So glad to have friends like you on this journey. Much love!
It blows my mind how you can be an activist for the community despite having chronic illness that effects your energy.
Bless you buddy. It's just in a small way now but knowing my content is still out there, as well as my books and videos, and it's all still making a difference, makes me a happy man!
I deleted the other comment by mistake ooh wow but yes I do remember selecting it because of the poodle name and I thought of your Pip!!
I wonder if it could be the weather? Contributing to this low energy or helping contribute. I am very sensitive to the barometer and weather changes send me over the bend.
Regardless, we both know there is no rhyme or reason to any of this. I think I just like to try and find my triggers so I can either "prepare" or allow myself that light bulb moment for why I feel so much worse than I did yesterday, for example.
You're a busy man, Finn, give yourself forgiveness, keep doing what you're doing. Someone said to me once: "if you want to keep getting what it is you're getting, then keep doing what it is you're doing" - you're on a path to healing, you are doing what you need to do for you in order to procure or maintain some semblance of a quality of life.
I'm finding that it's taken me a long time to figure out how to cope and LIVE with this, and I'm still trying to figure it out. But I ( and you) will make it, and come thru with lots of material to help get thru the next chapter. Never stop turning the pages... OK I'm going to go finish watching you now lol, I needed to pause to send you my best and let you know you are never alone (I'm sure you know that, but sometimes this illness can make us feel very lonely)
P.s. have you looked into "Low Dose Naltrexone"? I've been on it 4 months and honestly, it's a game changer for everything except the fatigue/pem/brain fog, buuuuut- it has lessened the intensity of the crashes and a multitude of other symptoms.
Take care, bud. Feel better. One breath at a time xx
I'm grateful for whatever videos you can get out! Looking forward to the one about Pip!
I appreciate that so much, thank you!
Woot! First 😀 (sorry brother, I couldn't resist 🥰
Yay!!!!
i get it. thank u!
Glad the poly-arms are responding to treatment Fin!!! Sooon you will be tapering off the steroids and the body will be calming down in the very near future. So glad. 🏳🌈🏳⚧🧡💙Don't forget I live in the future.....👽
Thanks so much my dear friend!!!
Chronic illness or not you cant abandon work in the US. Takes years to get disability if you even can and usually not enough to live on.
Yes, I can hear your breathlessness. Glad you have the support to abandon work.
I'm sorry it's so difficult over there
You look so snuggly in that hoodie 😊 No need to explain your randomness to me, you know our brains are twins 😂Love you xxx
Our Brian's get on so well 🤣 . And yes this is so very very snuggly. Love you loads.
No need to apologise for sporadic vlogs. I think we can all understand. I’ve been crashed on and off since January and I totally get the living on the edge of a crash the whole time. I saw a GP in January who thought I had POTS and he sent me to cardiology , appointment was last week. I was completely exhausted from the car drive and getting in to the hospital, not to mention being upright, that by the time I saw him I had really bad brain fog. He said that he didn’t know anything about ME/CFS and then went on to tell me to increase my fluid levels to more than 3 litres a day, salt to more than 6g and to do recumbent exercise eg an exercise bike!!!!! I was sitting there in my wheelchair and he hadn’t bothered to find out what I could do. I asked him about POTS and his answer was that it wasn’t POTS because I hadn’t mentioned tachycardia (because of the awful brain fog). The referral mentioned the tachycardia seen by the GP in the surgery. He also said there was no treatment for orthostatic intolerance. I did try to put him right on a few things but he just didn’t want to know. I don’t care whether I get a diagnosis of POTS or orthostatic intolerance as long as it’s the right diagnosis, based on evidence. I’m not even sure if he believes in POTS. I was so cross, upset, frustrated by this and then yet another crash. I know this is a bit off topic, but I felt the need to tell. Keep up the vlogs as and when you can Finn, they are comforting to watch.
Great idea to do little experiments. Maybe when you have a good day you could write out triggers for crashes and rate them then form three workable solutions to help you through it
I have a list of stuff that helps. The trouble is it changes so rapidly 🤣
I have a question Finn, do you struggle to take care of Pip? My dachshund is 12 and has Cushing disease, she in pretty good health so far. But taking her out on a leash wears me out we don’t really have a fence in yard plus feeding etc. there are days I can’t take her out so TG she’s pad trained too. She has severe food allergies so I have to make her food. I make big batches and freeze it up which helps but that big batch about kills me. I will not give her up but her needs override mine at times so I can barely take care of myself. My husband can’t help much with anything so I’m also responsible for most cooking-cleaning etc. she will surely be my last dog since I’m now 67.
That sounds really difficult. This is something I'm going to be talking about in my year with Pip vlog. Chris and I talked a lot about who would do what before we got Pip. I know I wouldn't be able to do a lot of the care, especially walking as I struggle to get out on my own, even using my wheelchair, so Chris does his walking and I just do extra ones when I'm able.
I also have a dog walker, and use a website called borrow my doggy, where people volunteer to walk dogs,, and that's incredibly helpful too
It can be very hard and has been especially through puppy hood with the training etc. but what he's given me in return, I terms of my days being fuller and richer has made it worthwhile
I agree Finn, I would hardly have a reason to get up most days if it wasn’t for my sweet girl. Looking forward to the video!
You are wearing a my comfy?
Not sure what's it's called other than a Sherpa hoodie blanket! So comfy!
bing bing bing bing bing...it sounds like someone is playing a video game in the background? Or that you have your notifications pinging? hard to take.
It's music downstairs playing for puppy Pip