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I was diagnosed with fibromyalgia 9 months ago but lately the fatigue has been getting really bad, I think I’ve probably got ME. I’ve had major mental health problems the last few years and now that side of things isn’t as awful my physical health has gone. It’s so hard. I live alone and I’m really struggling to manage things. I’m try not to feel the depth of pain I have about this, I’ve cried enough these last few years. I pushed myself through some stuff a couple of weeks ago and I’ve been floored since. Thanks for this video, fatigue chess fits perfectly and sending big hugs and love to you xx
I've had to learn to do something similar with my chronic pain, which also causes a lot of fatigue. It's very difficult to figure out what is too much and how little won't cause a depressive episode. Getting older probably doesn't help things either. lol It definitely changes your perspective though on expectations. I never thought I'd feel so accomplished by just doing something simple like taking a shower. Things that the average person takes for granted.
Oh goodness me yes! I feel like I've won gold when lve managed a shower! I'm sorry you suffer too. It's so hard isn't it, to balance it all properly so that our symptoms aren't completely overwhelming. Tell me it gets easier to manage over time?!!
@@FinnTheInfinncible To be honest, yes and no. You do learn better what will make you crash and give you symptoms, but for me at least, it can be difficult to predict how much of an impact it will have. Some days I can do a bunch of basic house keeping and it will have little impact later and other days I can do the same level of activity and I completely crash. I've pretty much have learned to take it day by day, as frustrating as that can be. It can be difficult to get suggestions on how to help symptoms and such since everyone's situation can be so different. It can be quite the process to see what works for you. Heaven help you if anything changes though, then it feels like you're at square one. Even when it feels like quare one, it's usually a bit easier to adjust because you know better how to figure out what works for you. I definitely find forums and stuff helpful. Hearing how different people cope gives me ideas to try and see if they help me. I think thevhardest part is not beating yourself up about how limited you are. I've really worked on my thought process from, "well, that sucks, I only took a shower today." To, "sweet, I took a shower today." It's amazing how such a small change in mind set can help mental health wise at the very least. Basically comes down to gathering tools in your self-care toolbox. Something I'm admittedly still working on. 😅😆
I hear you, once I think it’s a good day, it can turn into a major crash a couple days later. Thanks for sharing your experience, it helps me understand myself, yet it is frustrating.
Im so glad this helped, thanks for letting me know! Yes, it s so very frustrating trying to manage this condition, half the battle is managing the frustration I think! But, once we do, it then gets easier. Its about acceptance of a slower life, and knowing that even when we do our best we simply cannot control everything and sometimes those crashes happen and we just have to put our hand up and rest! Sending love and spoons!
I have also had to learn new ways of doing things over this last year. Most of my friends don’t talk to me because I stopped going out, I have rarely left my house and when I do I can’t go without my daughter. I fear going out in public because of two things. First, on February 4th last year I lost my leg. I and my surgeon worked for almost 2 years trying to save my leg but apparently I have a genetic condition that causes my bones to fail to heal. And I had an injury to my right ankle. But since that happened I stopped living my life like in use to. I’m hoping when I get my prosthetic leg I can start feeling ok again. I won’t be stuck in a wheelchair and I will be able to walk and go out again. Over the last year I’ve been told , You’re so brave You’re so strong I would be able to deal with that I’ve also had people tell me, I should be locked away somewhere because no one wants to see that (meaning having an amputation) Why bother, you’re incomplete now. You will never find someone to sedate or live you now. I’ve also had people in stores physically move me in my wheelchair because I guess I was in their way. And people wonder why I have anxiety in public places. I hope you can find all the answers you need as well as being able to find your balance. I look forward to your videos.
I just wanted to send some love & support. I'm so sorry (and angry!) to hear you've been treated like this and judged for how you look. There are people out here who do want to be your friend and be with you on your life journey. I really hope you're able to find a good group of friends IRL to be there for you, and in the mean time you truly aren't alone & there are some amazing online communities that can give you some emotional support. The internet has been amazing for helping people going through similar experiences to connect and be there for each other. Much love x
I am so sorry this has happened to you, its awful. As my good friend Flower storms has said, these people are not worth your time, there are much kinder people around who will love you just as you are. Ive connected with many amazing loving supportive people online so do search out some support/social spaces, there are many! Sending you love
Give yourself permission to sleep all you want, with no guilt. Give yourself time to stop, prioritize brutally, it can go into remission if you follow the granny rules, to bed early, naps, eat super healthy, sunshine, lots of immunity type vitamins. most important don't engage with any situations or people that stress you out. It took me a year the first time to get it into remission, and then i went years doing pretty OK. But after a period of relationship stress, I relapsed hard, but at least I knew what i needed to do and i made changes and allowed myself to crash and recover. The second time I recovered much faster, but I still never push thru stress. Stress tells me it's time to stop and I usually recover quickly as long as i listen carefully to myself. Much love, be well.
I feel for you! I’m dealing with CFS and it’s mental health toll as well. I’m used to running or walking every day and now I can’t even tolerate standing for an extended period of time. So hard to do nothing and not feel down. Take care ♥️
Omg I exactly the same!im nearly two years in getting past from pillar to post within the NHS I’m just need the actual diagnosis of cfs you’ve been so helpful doing this vid , thank you will sub and have a binge today as I’m in a crash atm
Bless you buddy. Getting a GP to listen is hard work. When you do, make sure to get them to do full blood work to rule out everything else that could be causing fatigue, and then see if you have an ME/CFS clinic in your area that you can get a referral to for a diagnosis.
Aw, I just watched this for the first time (although I've seen other videos you've done) and I just want to reach out and give you a great, big hug. I'm severe and getting worse, but this video really helped my mindset. I'm autistic and have CPTSD as well. I have super high anxiety that I'm going to more proactively manage now. Thank you! ❤
Bless your heart, I always appreciate a hug! It's so tough to manage all this isn't it? All we can do is our best and be kind to ourselves. Sending love
It's a very difficult illness to navigate....I'm 6 years now and I haven't figured out pacing. Iv reached out to my GP again and he is "making a few phone calls" whatever that means. Thank you for being so honest. X
It is so very very difficult. Pacing can only ever support and I think we always have to re-evaluate all the time because what works one month suddenly can stop working! Do ask your GP if there is an ME/CFS clinic in your area, if there is they may have an occupational health worker who will support you with pacing tools and techniques. Sending love!
EDIT: I’m no expert and I’m sure you have plenty of pals but I’m happy to listen too as a fellow “ energy disabled persons “ ✌️ Well Finn it looks like we are mirroring one another. I see you’re so frustrated and there’s probably a lot of impact to your self worth and hitting some old triggers - it does me for sure. I’m very low functioning and my world is very very low key and small. Looking into remote work from truck driving too. Adrenal surges in the night sucks ! Makes it feel like my chest is caving in - I use to think this was all blood sugar related - maybe some but not always. - I’ve been off since mid November doing pretty much nothing - except getting sick and recovering ( I’ve had adrenal fatigue/ crashes honestly for decades ) . Then yours kicked in - all this along with the emotional suffering led me back to research and I stumbled onto CPTSD / Crappy childhood fairy channel and how trauma effects everything. It shocked me to learn it’s a new developing field - not even an official diagnosis and many therapists or docs are trained in it ??? Crazy Then I began to look at the autonomic nervous system aka sympathetic/ parasympathetic and when your dominant on one side or the other or back and forth - You can reset that from behind the ear on the Vegas nerve with a TENS machine and a ear clip or buy patches that send an electric pulse for 7 minutes ( expensive but maybe worth it ) to simple methods of reset. All found on RUclips. I am improving or leveling out and I can only assume some of it is the healing and daily practice suggested on the cptsd channel along with resigning to some very important issues - cutting lose heavy baggage like blame and victim hood - DEEP loss / sadness I face , as well as like I said resignation. I do trauma work that works on a subconscious level too because trauma cannot be thought through or healed from the logical place - NARP Melanie Tanya Evens from Australia HOWEVER!..I haven’t gone back to work yet - soooo what’s happens then ...remains to be seen. I wish I could find some work I could do from the house - learning to manage the CPTSD symptoms/ healing to empower me is important but that will take time - lots of triggers out their I cannot control in the work force - in general. Anyway I didn’t mean to make it all about me - maybe you might find something of value in this little expose called a comment - or know like you have shown me so many times - you’re not alone !!! Keep us posted brother ! I’ll keep an eye out for your follow up. I bet you’ll find your place of acceptance. If there’s a way that works - you’ll find it. It’s in you to do so - That’s just who you are. Much respect from across the pond 🇺🇸✌️
Something that helped my spirts is to build a nest outside my bed. It’s a recliner with everything in reach. It helps me to be at zero gravity but out of bed. You are not alone.
I'm so sorry to hear that you're dealing with this, it sounds really difficult! Sending you lots of positive energy! I deal with chronic pain and it's hard to know sometimes what will set it off. It's definitely not easy, I hope you can start to figure out what works for you.
Thanks so much my friend. I'm sorry you deal with chronic pain, it is so tough when there is no hard and fast rule on how to manage these things isn't it! Figuring it out along the way as best we can is all we can do!
Another awesome video thank you for being so open and honest with how you feel and what is happening. Take your time and you will find what works for you and you will get your normal things back like regular videos and writing it all just takes time xx
I’m so sorry that you are dealing with these illnesses. I’m very glad to hear you have a cardiology appointment. A dear friend of mine had very similar symptoms and it was a heart rhythm issue. She was fitted with a pacemaker and the difference it made for her was astounding. She is doing very well now. It’s good that your physicians are continuing to investigate. If you were here in the States, it would all be blamed on your anxiety & depression and that would be the end of it. Take care and I hope you get some definitive answers soon - Deneena. 😊
Thank you so much ❤️. We have the same issue here, when this all started back in 2017, my anxiety and mental health was blamed. I had to fight to be listened to. I eventually got tested and they discovered I have hypothyroidism. But, my problems continued, and got worse, especially the heart pounding. I kept being fobbed off, because my thyroid levels were normal with medication, I was made to feel I was imagining it or it was anxiety. I knew it wasn't! Luckily, when we moved to Plymouth last summer, u found a doctor that really listened and clearly stated that it was definitely not my mental health. To be taken seriously and have this so thouraly investigated has been such a relief! I get my cardiology appointment phonecall tommorow, and that will illuminate things further. I will update!
My sweet sweet, Finn!!! As usual, something within your video connects to me. My psychologist and I literally discussed tonight how I am beginning to let go of regret over phallo and moving into grief, dealing with loss of bodily function etc. I just hurt for you. I know you worked so hard to build you business. You are such a bright spot in this world. I see the sadness in your eyes. Your fatigue as well. As I told you today on Instagram, I am very glad you have the MH work under your belt. I am sure it has carried you some. But yes oh yes our MH is very connected to our physical health and vice versa. What a crappy situation you have to be in. 🥺 I can't say it enough. I am so glad you found that beautiful FurrFurr of yours. I saw he has a heart monitor for a few days, you both need each other. I am praying for and love you both. I hope you get your referral soon! Much love sweet friend.❤️
Hey my dear dear friend. Haven't we both had our challenging obstacles! Grief is a common thread throughout people's lives, noylt just in experience loss in terms of death but all losses, big and small and changes too, which also cause a loss, even when that change is a positive thing. As trans folx, we go through more grief in our lifetimes than the average person, grief of our lost childhood, grief over our bodies, grief over relationships changed through transition, it's a LOT! And then these is this grief we both now seem to be sharing. Something has happened, that's out of our control, which has changed our lives in ways we did not want. Anger and regret are one of the faces of grief, but the one we often don't recognise. I have been angry, I have regretted the years l pushed myself way too hard, if only I hadn't, this illness may not have manifested. Now, to heal that anger and regret, and to stop it turning into toxic bitterness, I must recognise that it is grief and begin to process the loss this illness has caused and will likely continue to cause. I must process the grief of losing the person I was and the person l hoped to be and begin to a accept the person I now am. It's difficult and painful work! But, I do believe that the other side of struggle will birth something new and wonderful that I will have learned to love. That's how my life has been in the last 10 years since engaging with my health and personal growth in positive ways. We will both come through this ok! And we both have wonderful people by our sides. I'm grateful every single day for Chris. He is my rock and holds the belief for me when I can't find it. Sending you a ton of love my friend!
Hey, brother! Sending you so much love. If only A+B=C with these wretched chronic conditions, eh!? It's lovely to see your smiley face on screen and your vids always cheer me up xxx
Ah well that cheers me up! And yep, there is no ABC in chronic illness is there! It's more hope, wait, and see! Very glad to have you support, wisdom and friendship in this journey!
my 17 yr old has been struggling for a year and a half now and it looks like it's probably me/cfs for her too. We don't seem to have any guidance with pacing, so helping her to finish high school through this is a battle and a half.
Im so sorry to hear this, unfortunately this is all too common. I has to find my own way forward with this, and then fight to get the treatment I needed. Is your GP supportive? Do you have an ME service in your area? I recommend checking out the following websites for info and advice, including info on pacing tips and tools meassociation.org.uk/ www.actionforme.org.uk/ me-pedia.org/wiki/Welcome_to_MEpedia
I just want to hug you bless your heart it does effect our mental health I am still doing my ou course and my mental health depression and anxiety and a back injury honestly get me to the point I'm wondering why I put myself through it but it's like you said it's a vicious circle Hopefully you get this diagnosis soon lots of love and hugs xxxx
Thank you for your lovley comment. Oh my word it really is a vicious circle! Mental and physical health is so interconnected, so its really tough to balance! Well done for soldiering through your OU course!
Love ya Finn thank you for sharing your life with us ♥️♥️xxxx hope you get a diagnosis soon so you can begin to get things under control hopefully xxxxx
Hello Finn! Nice to see you again, and this is extremely helpful! I don't have the same thing as you, but one of my friends does, and I've been sharing your information with her in the hopes she can get hers a bit more under control 🤞 I send you lots of love, support and some resiliency 💕💪👍 I wish I could say that the things I go through sound the same, but there are a few differences. I have "undifferentiated mixed connective tissue disease" which sometimes can mimic what you talk about here, and it's that "chess game" as you say. It doesn't help when our bodies some days MAY be able to handle more or so we thought) and then the next 3 days are "recovery days" where I can barely do anything besides feed my cat and take a few naps for the day. Mine is "chase the symptoms" like a whack-a-mole game, and it really does affect mental health for sure. I often wonder if there's a way, after we get our bodies to settle down for a while, that tolerance to doing things again will come back slowly? 🤔 Would be nice wouldn't it? 🙏
Hey Chris, I have a diagnosis of Hypermobility Spectrum Disorder, one of the *many* diagnoses these connective tissue disorders get labelled with. I truly understand the symptom whack - a-mole 😞 Much love and solidarity x
@@flowersstorms8863 Much love and solidarity to you as well, I wish you good days! 🤞👍 It's rough when you don't know when these things will jump up from behind and do a sneak attack. I have Ehlers-Danlos syndrome as well, even the physical therapist I have was shocked when he told me to move one way, and my limbs almost went off the table, but the opposite way I can barely move. I figure my mobility must be pretty unexpected to surprise a physical therapist!
@@pmbluemoon Yep, that all sounds horribly familiar 😣 Finding the right professionals to help can always be a challenge! If you haven't already come across her, I highly recommend Jeannie DiBon's channel - she's a physio and she has hypermobility herself - she's brilliant. I'm always around in Finn's comment section (I'm on his Discord too) so always feel free to say hi when you see me ❤
@@flowersstorms8863 Thank you for the suggestion, and I'm always around on here too, will check out Jeannie's channel for sure! I hope you are having a good weekend and I send support your way 💪🙂
Oh yes whack a mole definitely applies asu h as chess! Hello my lovely friend ☺️. Managing complex chronic illness is so tough, exactly as you say, no two days are ever alike, what works one day doesn't the next, there are so many factors it feels impossible! But I think where we can aim is in manageability, in doing the best we can with the knowledge we have of ourselves and our illness everyday and managing the frustrations and limitations with self kindness and acceptance. This is still a work in progress for me!
Thanks for sharing. I'm sending you a virtual hug and lots of spoons. I know it's so tough right now, just a day at a time, literally, as you were saying. I'm glad you have found forums and connections with others struggling with the same conditions. I support you and wish you all the best, my friend.
Hello my friend! Thank you so much for your kind words and suggestions! I am doing a lot of listening to books and podcasts now as Fred makes reading difficult, so I shall look at those. Thank you!
Oh my gosh the mental health and physical health are like a snake biting it's own tail. It just cycles! I've been in a flair since Easter. I'm finally coming out of it but the more I was in bed the more depressed. The more depressed the more I'm in bed......
Oh my friend that's a perfect analogy. It's so very very hard to balance the two isn't it? I've found that most of the time they won't balance and I instead have to prioritise one or another according to which needs the most attention, if that makes sense? Like my recent outing to Glastonbury festival, that was to prioritise my mental health as l knew not going would hurt me enounously mentally and that at least attempting to go would really help my mental health, so I sacrificed my physical health a lot, knowing I would (and l am!) experience a lot of payback for that, but the mental health uplift I've had from going has done me so much good! I hope you are doing ok and treating yourself gently
@@FinnTheInfinncible doing my best. I really appreciate having the take of someone going through what I am. Thank you for what you do. I haven't watched that video yet. Did you have a good time? Was it worth the pay? I'm building up for the Renaissance fair in September and my wife (mtf) is having her augmentation surgery the next day. I'm saving all my spoons.
@@coffeezombie6032 it helps so much to share with people who get it doesn't it! And yes l love Glastonbury festival, it's a huge 5;day music festival with hundreds of music, comedy, talks, acts, theatre all sorts! I've been going for years. Thought I'd have to cancel this year due to being so disabled by ME but the festival has really good accessibility access so we used that. Here's my Glasto playlist which includes the first vlog from this year! Glastonbury Festival Vlogs: ruclips.net/p/PL-xdbMjLqelK2TtSXoq_pdio6HDeKq6Gd
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I was diagnosed with fibromyalgia 9 months ago but lately the fatigue has been getting really bad, I think I’ve probably got ME. I’ve had major mental health problems the last few years and now that side of things isn’t as awful my physical health has gone. It’s so hard. I live alone and I’m really struggling to manage things. I’m try not to feel the depth of pain I have about this, I’ve cried enough these last few years. I pushed myself through some stuff a couple of weeks ago and I’ve been floored since. Thanks for this video, fatigue chess fits perfectly and sending big hugs and love to you xx
I've had to learn to do something similar with my chronic pain, which also causes a lot of fatigue. It's very difficult to figure out what is too much and how little won't cause a depressive episode. Getting older probably doesn't help things either. lol It definitely changes your perspective though on expectations. I never thought I'd feel so accomplished by just doing something simple like taking a shower. Things that the average person takes for granted.
Oh goodness me yes! I feel like I've won gold when lve managed a shower! I'm sorry you suffer too. It's so hard isn't it, to balance it all properly so that our symptoms aren't completely overwhelming. Tell me it gets easier to manage over time?!!
@@FinnTheInfinncible To be honest, yes and no. You do learn better what will make you crash and give you symptoms, but for me at least, it can be difficult to predict how much of an impact it will have. Some days I can do a bunch of basic house keeping and it will have little impact later and other days I can do the same level of activity and I completely crash. I've pretty much have learned to take it day by day, as frustrating as that can be. It can be difficult to get suggestions on how to help symptoms and such since everyone's situation can be so different. It can be quite the process to see what works for you. Heaven help you if anything changes though, then it feels like you're at square one. Even when it feels like quare one, it's usually a bit easier to adjust because you know better how to figure out what works for you. I definitely find forums and stuff helpful. Hearing how different people cope gives me ideas to try and see if they help me. I think thevhardest part is not beating yourself up about how limited you are. I've really worked on my thought process from, "well, that sucks, I only took a shower today." To, "sweet, I took a shower today." It's amazing how such a small change in mind set can help mental health wise at the very least. Basically comes down to gathering tools in your self-care toolbox. Something I'm admittedly still working on. 😅😆
I hear you, once I think it’s a good day, it can turn into a major crash a couple days later. Thanks for sharing your experience, it helps me understand myself, yet it is frustrating.
Im so glad this helped, thanks for letting me know! Yes, it s so very frustrating trying to manage this condition, half the battle is managing the frustration I think! But, once we do, it then gets easier. Its about acceptance of a slower life, and knowing that even when we do our best we simply cannot control everything and sometimes those crashes happen and we just have to put our hand up and rest! Sending love and spoons!
@ Thank you
I have also had to learn new ways of doing things over this last year. Most of my friends don’t talk to me because I stopped going out, I have rarely left my house and when I do I can’t go without my daughter. I fear going out in public because of two things. First, on February 4th last year I lost my leg. I and my surgeon worked for almost 2 years trying to save my leg but apparently I have a genetic condition that causes my bones to fail to heal. And I had an injury to my right ankle. But since that happened I stopped living my life like in use to. I’m hoping when I get my prosthetic leg I can start feeling ok again. I won’t be stuck in a wheelchair and I will be able to walk and go out again. Over the last year I’ve been told ,
You’re so brave
You’re so strong
I would be able to deal with that
I’ve also had people tell me,
I should be locked away somewhere because no one wants to see that (meaning having an amputation)
Why bother, you’re incomplete now.
You will never find someone to sedate or live you now.
I’ve also had people in stores physically move me in my wheelchair because I guess I was in their way.
And people wonder why I have anxiety in public places.
I hope you can find all the answers you need as well as being able to find your balance. I look forward to your videos.
I just wanted to send some love & support. I'm so sorry (and angry!) to hear you've been treated like this and judged for how you look. There are people out here who do want to be your friend and be with you on your life journey. I really hope you're able to find a good group of friends IRL to be there for you, and in the mean time you truly aren't alone & there are some amazing online communities that can give you some emotional support. The internet has been amazing for helping people going through similar experiences to connect and be there for each other. Much love
x
I am so sorry this has happened to you, its awful. As my good friend Flower storms has said, these people are not worth your time, there are much kinder people around who will love you just as you are. Ive connected with many amazing loving supportive people online so do search out some support/social spaces, there are many! Sending you love
Strip everything away and deeply examine your heart and your personal spirituality, it is there where you will find peace.
I am deeply spiritual and that gets me through challenging times!
Give yourself permission to sleep all you want, with no guilt. Give yourself time to stop, prioritize brutally, it can go into remission if you follow the granny rules, to bed early, naps, eat super healthy, sunshine, lots of immunity type vitamins. most important don't engage with any situations or people that stress you out. It took me a year the first time to get it into remission, and then i went years doing pretty OK. But after a period of relationship stress, I relapsed hard, but at least I knew what i needed to do and i made changes and allowed myself to crash and recover. The second time I recovered much faster, but I still never push thru stress. Stress tells me it's time to stop and I usually recover quickly as long as i listen carefully to myself. Much love, be well.
I feel for you! I’m dealing with CFS and it’s mental health toll as well. I’m used to running or walking every day and now I can’t even tolerate standing for an extended period of time. So hard to do nothing and not feel down. Take care ♥️
Bless your heart
Yes, it's such a tricky balance isn't it? One affects the other and it's so hard
Omg I exactly the same!im nearly two years in getting past from pillar to post within the NHS I’m just need the actual diagnosis of cfs you’ve been so helpful doing this vid , thank you will sub and have a binge today as I’m in a crash atm
Bless you buddy. Getting a GP to listen is hard work. When you do, make sure to get them to do full blood work to rule out everything else that could be causing fatigue, and then see if you have an ME/CFS clinic in your area that you can get a referral to for a diagnosis.
Aw, I just watched this for the first time (although I've seen other videos you've done) and I just want to reach out and give you a great, big hug. I'm severe and getting worse, but this video really helped my mindset. I'm autistic and have CPTSD as well. I have super high anxiety that I'm going to more proactively manage now. Thank you! ❤
Bless your heart, I always appreciate a hug! It's so tough to manage all this isn't it? All we can do is our best and be kind to ourselves. Sending love
It's a very difficult illness to navigate....I'm 6 years now and I haven't figured out pacing. Iv reached out to my GP again and he is "making a few phone calls" whatever that means. Thank you for being so honest. X
It is so very very difficult. Pacing can only ever support and I think we always have to re-evaluate all the time because what works one month suddenly can stop working! Do ask your GP if there is an ME/CFS clinic in your area, if there is they may have an occupational health worker who will support you with pacing tools and techniques. Sending love!
EDIT: I’m no expert and I’m sure you have plenty of pals but I’m happy to listen too as a fellow “ energy disabled persons “ ✌️
Well Finn it looks like we are mirroring one another. I see you’re so frustrated and there’s probably a lot of impact to your self worth and hitting some old triggers - it does me for sure. I’m very low functioning and my world is very very low key and small. Looking into remote work from truck driving too.
Adrenal surges in the night sucks ! Makes it feel like my chest is caving in - I use to think this was all blood sugar related - maybe some but not always.
- I’ve been off since mid November doing pretty much nothing - except getting sick and recovering ( I’ve had adrenal fatigue/ crashes honestly for decades ) .
Then yours kicked in - all this along with the emotional suffering led me back to research and I stumbled onto CPTSD / Crappy childhood fairy channel and how trauma effects everything. It shocked me to learn it’s a new developing field - not even an official diagnosis and many therapists or docs are trained in it ??? Crazy
Then I began to look at the autonomic nervous system aka sympathetic/ parasympathetic and when your dominant on one side or the other or back and forth - You can reset that from behind the ear on the Vegas nerve with a TENS machine and a ear clip or buy patches that send an electric pulse for 7 minutes ( expensive but maybe worth it ) to simple methods of reset. All found on RUclips.
I am improving or leveling out and I can only assume some of it is the healing and daily practice suggested on the cptsd channel along with resigning to some very important issues - cutting lose heavy baggage like blame and victim hood - DEEP loss / sadness I face , as well as like I said resignation. I do trauma work that works on a subconscious level too because trauma cannot be thought through or healed from the logical place - NARP Melanie Tanya Evens from Australia HOWEVER!..I haven’t gone back to work yet - soooo what’s happens then ...remains to be seen. I wish I could find some work I could do from the house - learning to manage the CPTSD symptoms/ healing to empower me is important but that will take time - lots of triggers out their I cannot control in the work force - in general.
Anyway I didn’t mean to make it all about me - maybe you might find something of value in this little expose called a comment - or know like you have shown me so many times - you’re not alone !!!
Keep us posted brother ! I’ll keep an eye out for your follow up. I bet you’ll find your place of acceptance. If there’s a way that works - you’ll find it. It’s in you to do so - That’s just who you are. Much respect from across the pond 🇺🇸✌️
Something that helped my spirts is to build a nest outside my bed. It’s a recliner with everything in reach. It helps me to be at zero gravity but out of bed.
You are not alone.
I'm so sorry to hear that you're dealing with this, it sounds really difficult! Sending you lots of positive energy!
I deal with chronic pain and it's hard to know sometimes what will set it off. It's definitely not easy, I hope you can start to figure out what works for you.
Thanks so much my friend. I'm sorry you deal with chronic pain, it is so tough when there is no hard and fast rule on how to manage these things isn't it! Figuring it out along the way as best we can is all we can do!
Another awesome video thank you for being so open and honest with how you feel and what is happening. Take your time and you will find what works for you and you will get your normal things back like regular videos and writing it all just takes time xx
Thank you lovely, that means the world!
I’m so sorry that you are dealing with these illnesses. I’m very glad to hear you have a cardiology appointment. A dear friend of mine had very similar symptoms and it was a heart rhythm issue. She was fitted with a pacemaker and the difference it made for her was astounding. She is doing very well now. It’s good that your physicians are continuing to investigate. If you were here in the States, it would all be blamed on your anxiety & depression and that would be the end of it. Take care and I hope you get some definitive answers soon - Deneena. 😊
Thank you so much ❤️. We have the same issue here, when this all started back in 2017, my anxiety and mental health was blamed. I had to fight to be listened to. I eventually got tested and they discovered I have hypothyroidism. But, my problems continued, and got worse, especially the heart pounding. I kept being fobbed off, because my thyroid levels were normal with medication, I was made to feel I was imagining it or it was anxiety. I knew it wasn't! Luckily, when we moved to Plymouth last summer, u found a doctor that really listened and clearly stated that it was definitely not my mental health. To be taken seriously and have this so thouraly investigated has been such a relief!
I get my cardiology appointment phonecall tommorow, and that will illuminate things further. I will update!
My sweet sweet, Finn!!!
As usual, something within your video connects to me. My psychologist and I literally discussed tonight how I am beginning to let go of regret over phallo and moving into grief, dealing with loss of bodily function etc.
I just hurt for you. I know you worked so hard to build you business. You are such a bright spot in this world. I see the sadness in your eyes. Your fatigue as well.
As I told you today on Instagram, I am very glad you have the MH work under your belt. I am sure it has carried you some.
But yes oh yes our MH is very connected to our physical health and vice versa. What a crappy situation you have to be in. 🥺
I can't say it enough. I am so glad you found that beautiful FurrFurr of yours. I saw he has a heart monitor for a few days, you both need each other. I am praying for and love you both. I hope you get your referral soon! Much love sweet friend.❤️
Hey my dear dear friend. Haven't we both had our challenging obstacles! Grief is a common thread throughout people's lives, noylt just in experience loss in terms of death but all losses, big and small and changes too, which also cause a loss, even when that change is a positive thing.
As trans folx, we go through more grief in our lifetimes than the average person, grief of our lost childhood, grief over our bodies, grief over relationships changed through transition, it's a LOT!
And then these is this grief we both now seem to be sharing. Something has happened, that's out of our control, which has changed our lives in ways we did not want.
Anger and regret are one of the faces of grief, but the one we often don't recognise. I have been angry, I have regretted the years l pushed myself way too hard, if only I hadn't, this illness may not have manifested.
Now, to heal that anger and regret, and to stop it turning into toxic bitterness, I must recognise that it is grief and begin to process the loss this illness has caused and will likely continue to cause. I must process the grief of losing the person I was and the person l hoped to be and begin to a accept the person I now am.
It's difficult and painful work!
But, I do believe that the other side of struggle will birth something new and wonderful that I will have learned to love. That's how my life has been in the last 10 years since engaging with my health and personal growth in positive ways.
We will both come through this ok!
And we both have wonderful people by our sides. I'm grateful every single day for Chris. He is my rock and holds the belief for me when I can't find it.
Sending you a ton of love my friend!
@@FinnTheInfinncible So beautifully said. Thank you for sharing so much of your wisdom, connection and world with me! I just love you to pieces.
@@amyayars-evans4666 the feeling is very mutual 💜
Hey, brother! Sending you so much love. If only A+B=C with these wretched chronic conditions, eh!? It's lovely to see your smiley face on screen and your vids always cheer me up xxx
Ah well that cheers me up! And yep, there is no ABC in chronic illness is there! It's more hope, wait, and see! Very glad to have you support, wisdom and friendship in this journey!
my 17 yr old has been struggling for a year and a half now and it looks like it's probably me/cfs for her too. We don't seem to have any guidance with pacing, so helping her to finish high school through this is a battle and a half.
Im so sorry to hear this, unfortunately this is all too common. I has to find my own way forward with this, and then fight to get the treatment I needed. Is your GP supportive? Do you have an ME service in your area? I recommend checking out the following websites for info and advice, including info on pacing tips and tools
meassociation.org.uk/
www.actionforme.org.uk/
me-pedia.org/wiki/Welcome_to_MEpedia
I just want to hug you bless your heart it does effect our mental health I am still doing my ou course and my mental health depression and anxiety and a back injury honestly get me to the point I'm wondering why I put myself through it but it's like you said it's a vicious circle
Hopefully you get this diagnosis soon lots of love and hugs xxxx
Thank you for your lovley comment. Oh my word it really is a vicious circle! Mental and physical health is so interconnected, so its really tough to balance! Well done for soldiering through your OU course!
Love ya Finn thank you for sharing your life with us ♥️♥️xxxx hope you get a diagnosis soon so you can begin to get things under control hopefully xxxxx
Thank you lovely! I just need that extra support to get this managed. Will update soon!
@@FinnTheInfinncible you got this the finnfam are with you xx ♥️♥️
Hello Finn! Nice to see you again, and this is extremely helpful!
I don't have the same thing as you, but one of my friends does, and I've been sharing your information with her in the hopes she can get hers a bit more under control 🤞
I send you lots of love, support and some resiliency 💕💪👍
I wish I could say that the things I go through sound the same, but there are a few differences. I have "undifferentiated mixed connective tissue disease" which sometimes can mimic what you talk about here, and it's that "chess game" as you say. It doesn't help when our bodies some days MAY be able to handle more or so we thought) and then the next 3 days are "recovery days" where I can barely do anything besides feed my cat and take a few naps for the day. Mine is "chase the symptoms" like a whack-a-mole game, and it really does affect mental health for sure. I often wonder if there's a way, after we get our bodies to settle down for a while, that tolerance to doing things again will come back slowly? 🤔
Would be nice wouldn't it? 🙏
Hey Chris, I have a diagnosis of Hypermobility Spectrum Disorder, one of the *many* diagnoses these connective tissue disorders get labelled with. I truly understand the symptom whack - a-mole 😞 Much love and solidarity x
@@flowersstorms8863 Much love and solidarity to you as well, I wish you good days! 🤞👍 It's rough when you don't know when these things will jump up from behind and do a sneak attack. I have Ehlers-Danlos syndrome as well, even the physical therapist I have was shocked when he told me to move one way, and my limbs almost went off the table, but the opposite way I can barely move. I figure my mobility must be pretty unexpected to surprise a physical therapist!
@@pmbluemoon Yep, that all sounds horribly familiar 😣 Finding the right professionals to help can always be a challenge! If you haven't already come across her, I highly recommend Jeannie DiBon's channel - she's a physio and she has hypermobility herself - she's brilliant. I'm always around in Finn's comment section (I'm on his Discord too) so always feel free to say hi when you see me ❤
@@flowersstorms8863 Thank you for the suggestion, and I'm always around on here too, will check out Jeannie's channel for sure! I hope you are having a good weekend and I send support your way 💪🙂
Oh yes whack a mole definitely applies asu h as chess! Hello my lovely friend ☺️.
Managing complex chronic illness is so tough, exactly as you say, no two days are ever alike, what works one day doesn't the next, there are so many factors it feels impossible!
But I think where we can aim is in manageability, in doing the best we can with the knowledge we have of ourselves and our illness everyday and managing the frustrations and limitations with self kindness and acceptance. This is still a work in progress for me!
I'm sending hugs and love and healing vibes your way take care 🤗🤗🤗🤗🤗❤❤❤❤❤
Thank you so much(
Thanks for sharing. I'm sending you a virtual hug and lots of spoons. I know it's so tough right now, just a day at a time, literally, as you were saying. I'm glad you have found forums and connections with others struggling with the same conditions. I support you and wish you all the best, my friend.
Hello my friend! Thank you so much for your kind words and suggestions! I am doing a lot of listening to books and podcasts now as Fred makes reading difficult, so I shall look at those. Thank you!
Sending lots of love xx
Thanks sweets! Sending hugs back!
Take care Finn 🥰
Thank you!
Have you heard of the spoon theory? This sounds alot like that.
YES! Its a great theory for understanding energy limiting conditions and managing limited energy. I must do a vido on this. Thanks for the reminder!
Oh my gosh the mental health and physical health are like a snake biting it's own tail. It just cycles! I've been in a flair since Easter. I'm finally coming out of it but the more I was in bed the more depressed. The more depressed the more I'm in bed......
Oh my friend that's a perfect analogy. It's so very very hard to balance the two isn't it? I've found that most of the time they won't balance and I instead have to prioritise one or another according to which needs the most attention, if that makes sense? Like my recent outing to Glastonbury festival, that was to prioritise my mental health as l knew not going would hurt me enounously mentally and that at least attempting to go would really help my mental health, so I sacrificed my physical health a lot, knowing I would (and l am!) experience a lot of payback for that, but the mental health uplift I've had from going has done me so much good! I hope you are doing ok and treating yourself gently
@@FinnTheInfinncible doing my best. I really appreciate having the take of someone going through what I am. Thank you for what you do.
I haven't watched that video yet. Did you have a good time? Was it worth the pay? I'm building up for the Renaissance fair in September and my wife (mtf) is having her augmentation surgery the next day. I'm saving all my spoons.
@@coffeezombie6032 it helps so much to share with people who get it doesn't it! And yes l love Glastonbury festival, it's a huge 5;day music festival with hundreds of music, comedy, talks, acts, theatre all sorts! I've been going for years. Thought I'd have to cancel this year due to being so disabled by ME but the festival has really good accessibility access so we used that. Here's my Glasto playlist which includes the first vlog from this year! Glastonbury Festival Vlogs: ruclips.net/p/PL-xdbMjLqelK2TtSXoq_pdio6HDeKq6Gd