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We cld all write a book about our GP experiences🤬 ...awful! BTW really resonate with u wfh, love to write spk publicly etc etc. Had symptoms for yrs just got diagnosed (that was by paying private 🤬 & I'm skint). Have migraines & had exactly same as u...inc being happy person but plagued with depression...only reason I got sumatriptan for migraines was other half found a chemist who got lot of American meds but anyway had those OTC & sthing else sadly can no longer get others but now demanding them from Dr. Keep up the self love, give yourself a break because when U do it encourages us to too💞🫶🙏
My boys named it Zonk when were in highschool. They are 44 years old, that's how long this has eaten my life. Grateful it didn't get bad till they were grown up and gone. But I think it began as Mono when I was in college 1972!!
This helps a lot. I have schizoaffective disorder and have had to quit a job recently and i avoid socializing. Its just too hard. But like you said, managing the illness is a job! I go DAILY to the psychosis clinic, i see a psychiatrist 1-3 times a week and its a commute! All of that takes it out of me not to mention the psychotic and mood symptoms, i have to manage. Thank you!
I'm so glad your new Dr is listening and helping you being yeah my gp is rubbish too! I think in the future took are going to do so much good work to help people with ME! I know you are struggling now but reason for everything my friend love you xx
I LOVE your unedited pyjama recording ❤ truly. Burps and all. This is how i can relate to you much more truly than videos with loads of editing, makeup, etc. These also often loose the natural pauses in between sentences which really makes my system stressed out. Ah, i just want to praise this choice of sharing yourself as you are. It makes me resonate with your being a lot more, just cause I'm human too, and my life isn't edited.
I appreciate this comment so very very much, thank you! Ive actually enjoyed going back to basics like this. I never really liked the polished marketed style that the analytics and the algorithms asked for. Id rather have fewer subscribers truly engaged than high numbers of folks who aren't even watching, besides, its exhausting trying to be perfect 🤣. Id rather be a hot mess and connect with people who relate, so thank you very much for your kind words!
@@FinnTheInfinncible exactly, and that is my way too.. what a guideline for living!: I'll rather be a hot mess and connect with people who can relate ✨️✨️
I agree, managing a chronic condition really is a full time job! I have to spend quite a bit of time doing physiotherapy so I can manage my chronic pain. Plus all the breaks, resting, and planning, takes a lot of mental energy. I'm glad to hear you have a doctor that's taking better care of you! Here in Canada we're also at the mercy of the public health care system, waiting is awful (although at least it's free unlike the poor folks in the states).
Hi my friend, yes this sounds very similar to me. I short sightedly thought l could manage work around all of that but then forgot to take into account other things like, , maintaining a personal life with Chris where we still go out,, but to do that I need to rest before and after, so that eats into remaining time to work. Then there is financial stuff, fighting this financial disability benefit, sorting out my many physical symptoms and trying to get a doctor's appointment, this leaves no time in a day! I don't know what l was thinking!!!! Life with an energy limiting condition is utterly impossible isn't it!!! At least I've seen it now, and I can give myself a break and shelve big work plans for a while. It's not easy, it brings up so much sadness, but my health must come first! We have to put ourselves first don't we!
@@FinnTheInfinncible Resting before and after each activity is so frustrating, but necessary for me now too. It's been severe since major surgery in 2015. What are you gonna do?
You're putting words to the thing I've been feeling a lot regarding me/cfs for me, Finn. It IS a fulltime job managing it all! And I'm not even doing things like therapy or applying for money. When I'm outside it's like "Alright, do I go all the way over there to get to the escalators or do I just walk the distance anyway? Well, this time it'll probably be easier not to go to the escalators." All this strategizing really wears you out and I hadn't really noticed until recently. Your videos are always lovely, Finn, and it's handy we don't have smell-o-vision on youtube. I wouldn't have bothered with the arm pits to be honest. 😆
Haha! Yeah I really hadn't thought about that! Next time, leave out the armpits! And absolutely yes it's exactly this, not only is it a condition that causes exhaustion, but also it's exhausting managing it! And not only the self care treatments, like pacing, but the constant calculations we have to do with every single bloody action we take! When it's your life, it's far too easy to just normalise it and forget it's not everyone's reality and completely overlook just how enourmously difficult it is. We are superheros! Thank you for your lovely comments, I'm so chuffed you enjoy these videos as I really enjoy making them, even though l perceive them to be a waffley mess! 🤣
I’m in a similar boat. 🥺 The internalized ableism is real, it sometimes leads me to flare, and unfortunately Im in a massive one right now. I have both ME/CFS and hEDS, and if I had a choice to pick one to get better it would be ME. I’m sorry you’re dealing with this too, sending good vibes!
I cannot belive how much internalsed ableism I have! Ive had a massive shift in perspective this last 18 months! Im learning to just let go of other peoples expectations, and societal shoulds and do things my way that work for me, but it is a work in probgress!! Thanks for the good vibes, sending millions back to you too!
I used to blame myself for my ME fir so long, but it’s better now. We’re our own worst enemy sometimes. The long Covid research is suggesting that ME could be a hijacking of the immune system or a chronic reactivation of a virus. Hope you both get stronger and know you’re not alone😊
Life with more severe ME/CFS and Fibro is way harder than working with mild forms of those illnesses was. I was working as teacher full time in elementary education, which is known to suck your life away anyway, and I was able to be really active but I was suffering symptoms all the time for over a decade. I've had to simplify everything but keeping up with all my symptoms plus the amplification of pain and sickness symptoms is way harder than anything else I used to go through. I was just having these exact same thoughts so this video is really helpful. Thank you. We get used to dealing with all this extra pain and sickness all the time so we do forget how much harder it is for us to just try to function and get through each day. I subbed ya.
Fantastic to find your channel. I have never in my 13 years with M.E. / Prescribed drug withdrawal syndrome met another LGBT+ person! Big love from Scotland xxx
@@FinnTheInfinncible yeah. I went to sitges with my Efoldi scooter a few years ago. I felt embarrassed as theres such a focus on looks. I bet everyone was thinking I wonder if his willy works! At least I turned all the hot bears heads haha 😄 I do 2 hrs meditation a day to manage mine.
Oh how I love to see a new video from my Finn!!! Love the PJ's. 😜 What a brilliant epiphany!! Managing your illness is indeed a full time job dude!! You just keeping processing and evolving beautiful man. Love you!
All the people who have long Covid. Finally they’re taking ME/CFS seriously as real. It may be viral activation of virus we had at one time. I got it after a virus and a vaccination. Better now but it took a long time and being told it was just mental. I’ve got elevated ANA and other autoimmune conditions, so perhaps it’s all related. Anyway, wishing you health and a breakthrough. You seem to have a great energy about you! Wishing you strength as well. You’ll get better! ❤
Hi fin fully understand the head pain, had it my self for the whole years same response from gp. I managed to get my under control during the day with blue light glasses.. but still wake up every morning with them so thank you for the information as always.. and thank you for showing that no one is alone in this journey through ME
Bless your heart, thanks so much for your lovely comment. I havent tried the blue light glasses, but Im having a lot of success with the higher dose of preventative (toparimate) and the added sumitriptan as pain relief. Ive also recently been assessed for PoTS and it looks like tha could be whats causing my constant headaches. Im started news meds soon and really hoping that makes a difference as waking up each day with a banging head is no fun! Hope you are doing well?
Hey sweetie, you're absolutely right, 'just' managing what's going on can very much be a fulltime job! Muchness your way for the PIP stuff to be considered as it should be and yay for the better migraine meds, oh and some purrrrrrrrs from Paxton too !
Aw hello lovely. Yes indeed , l cannot believe I didn't think about all I'm having to do to look after myself and adapt to this condition! There's me feeling bad about still crashing and so on, and not yet finding a way to work around this illness, but it's not surprising is it! Blooming heck! And yay indeed for migraine meds, my head has felt like a cloud for two days rather than a tangle of thorns which is such a relief! Hugs to you and purrs to Paxton!
Sending you some love, and I'm so glad that your doc gave you some triptans and that they are working! So glad. As a fellow migraine warrior, I'm so glad. Keep taking it easy!
Oh Finn, m'love, I know the 'beating myself up because I should be doing MOAR' trap only too well 😑 These chronic conditions suck soooo much - if only there were a magic wand, eh? Thank you for making this video, and yep, I love the 'waffley' ones (and GOOD that you're not worrying about the timings!). Much love as always xx
Thanks lovely. Yes I'm having to live in the surrender and acceptance mindset. It's so tough isn't it? I had got to the point of accepting I would need to do less but thought l would still be able to do something! But it's the deadlines that I see now are my real issue in living with chronic illness . A talk deadline isn't too bad if it's online ,as it's just one event and done but a book deadline is a whole other thing as its ongoing, because it requires constant daily work, if that makes sense, so now I'm back to the drawing board about how I'm going to work and what exactly l can do going forward. This is so blooming tricky! I'm so gratefully to you all for being here and helping me work through this! Xxx
Hi Finn, I just want to say you talking about this openly has helped me so much because sometimes as someone who has fatigue people just don’t get it, they just don’t get it at all not even the people who are meant to help you , eg. PIP and it gets me so angry sometimes. Thank you cause I have been having a mini crash this week and honestly I just feel exhausted after doing barely anything and it’s so frustrating and you feel so helpless and lonely sometimes and you talking about this just makes me feel so much better cause sometimes I feel like I am making it up and ye Fred’s an ass lol
Hi my friend, I'm glad this video helped. It's sadly true that invisible illness like these are poorly understood, and often badly misrepresented by the medical profession which does not help! It's hard enough managing this, let alone feeling like you have to prove you really are struggling! Im learning that l have to just prioritise me and my needs, my pacing and energy management has to come first, if I'm exhausted, I have to stop, if lve said yes to something but I'm not well enough l must cancel, I must surround myself with people who understand l need to live this way and walk away from those who don't. It's not easy, but we owe it to ourselves. If we had broken both our legs we would be putting these things into place easily, people would understand and we wouldn't give ourselves a hard time, this is no different, just because you can't see it. Sending you so much love
@@FinnTheInfinncible Hey Finn, I really needed to hear that today honestly I had never thought about it like that before and I just feel so seen. I really appreciate your videos and I understand that you don’t always have the energy to make them honestly I wouldn’t haha your doing such an amazing job rn even if it feels shit and honestly awful and Fred is being an idiot. You should be so proud of yourself and honestly anyone reading this with fatigue or other conditions take a moment just to say to yourself well done. Take time to evaluate what’s right for you and like you said Finn it’s ok to cancel. 👍👍
it's not only a full time job, it's a job that doesn't pay, I mean you don't even get weekends or holidays off, and you're on call 24h a day! Oh, how I long to take a holiday away from myself for even just a few days...
Hello my cohort with ME/ CFS. There's so much I want to say but I'm in the middle of a crash or a flare and I don't want to say anything until I feel a little more on the ball and able for my words to have the meaning I want them to. I just want to say I really enjoyed the video there's a bunch I want to share about it and I'll be talking to you soon.
Just wanted to thank you for this video, and no it was not too long. Love the pjs. I am so sorry you have this full time job of dealing with the ME/CFS. I hope the little something extra I added as a thank you for this video will help you and Chris. Sending lots of love, Finn. I'll be sending you my question for the Q&A soon! ❤
Hey Kevin! These PJ's are so comfy, and they make me smile! Thank you for being so lovely. It is an annoying full time job to have but now lve realised this, it's made things make so much more sense! Now l can better plan an also not be so hard on myself! I can't see what you sent me, I'm on my mobile so I'll have a look on my laptop in a moment!
BUDDY!!!!!! A super thanks!!!!!! My word you are so very generous, thank you so very much! These are new to me, in fact this is only the second time Ive ever got one, seems they don't show up on my mobile, turned on my laptop, and what a lovely surprise, you are such a sweet and kind gent, thank you! 🙏🙏🌟🌟
@@FinnTheInfinncible I was happy to do it Finn - wish it could've been more. Gotta save for that top surgery, though! 😉 Seriously Finn, I appreciate you more than you know. Your willingness to share your experiences has helped me so much! Plus, I've always found myself being blessed so much more when I try to bless others. I hope you and Chris have a very lovely day! ❤❤
@@kevincollins53 I wish l could jump through the screen and hug you!!!!!! You do so much, in the way you support me through membership, donations, kind comments, wise words, appreciation, your friendship,.you bless me every day 💜💜💜💜
Hi lovely! I havent yet. I really should, though the trouble is he didnt actually do anything wrong, he had opinions, and I think Id be hard pressed to lodge any complaint against that. I am however going to contact the ME society and asked them to send an up to date GP pack to my old surgery, specifically addressing the nature of ME as biological and not functional, because that was the old way of thinking that my ex GP couldnt shift from
Having such a PJ day as I call them, is really good for energy conservation. It also helps with the illusion to have a friends meeting to just hang around together. My question for the q and a will come as soon as I found the link. After my brain hemorrage, I also learned (no other choice) a whole new life mode, and did not get an occupational therapist, so muddled around alone and had a lot of trial and error , which was frustrating. Ten years later, I finally convinced my new neurologist to get OT, and still not got a psychotherapist. Being on disability, no going private, so waiting for the system to provide me with a slot on the waiting list. Spoonies sure do have a full time job, managing their health. Now, since 2020, there is an oncologic chronic issue, needing my attention every day, too.
Exactly this my friend. It doesn't help that these chronic conditions are often invisible, poorly understood and carry a ton of stigma, this means we have to work harder to fight the system with energy we do not have. It's utterly exhastinng. Trying to maintain even a tiny bit of a life and stay well, let alone work, is impossible, so I'm discovering! Perhaps in a few more months things may settle more, who knows, but for now I'm being realistic as I discover just how much it takes to manage this condition and navigate the world with it. Sending much love and solidarity your way. Here is the link for your question forms.gle/pmTXVYhiQFha8mpx8
1:48 I was on a Zoom call one day after putting on deodorant and a shirt one day, and the thought came to me: they can't smell me over a video call. 🤔 I still put on a shirt, but if I'm not doing much, no deodorant. We have really nasty water where I live, and it causes skin irritation to me, let alone if I'm having a "sensitive" day, I can't handle the feel of the shower water on me, even on the lowest pressure setting. Wet wipes are wonderful! 👌 I looked up sumatriptan, it's also an SSRI (antidepressant) so keep an eye on your moods my friend! So far so good though *migraines be gone!* 🧙♂ Isn't it counterintuitive to have something like this, and have to work harder to manage it than it was before you tried doing anything for it? I have similar issues but from different medical reasons, and it seems like more of a full time job (taking up more time and mental energy than physical energy) than my old job was 🤷♂ Thank you so much Finn, always love your face on my screen 😃 Much love as always, take some rest and give Chris a hello for me 😊Lamby was supervising you to make sure you were staying in screenshot 🐑 hehe 🥰
Hey lovely man! Goodness me yes, l can't believe how many hours of the day I spend thinking about, planning for, and taking care of my chronic illness! Fred is bloody hard work!!!! What was l thinking, expecting to work alongside this!!!! ARG! Maybe when I'm more practiced and settled....but certainly not now.. And can't smell me on zoom 😅😅😅 so true! It's become a standing joke in our house now that it's only arms down cuddles on certain days of the week 🤣🤣🤣🤣. I was really embarrassed about my lack of showering but if we can't do it we can't do it! I keep trying to train Lamby butbhe just looks at me....... Chris and l both send you tons of love!
@@FinnTheInfinncible I completely agree about the shower situation, funny you say arms down cuddling, I get the same thing from my boyfriend as well! We can only do what we can I agree. Lamby is watching you to make sure you're doing as ok as you can be 😊 Take it easy and will be posting a few pictures of Duluth on insta in a few days!
Thanks for always following and caring! Unfortunately, at the moment there is no cure for ME/CFS. The fatigue is due to problems within the functioning of the central nervous system, specifically in how energy is produced and stored, this bit malfunctions. The only treatment is energy management, called pacing, where you learn what your personal energy levels are, called your energy envelope, and then manage your daily activities so to not exceed that level during each day. This is why I use a mobility scooter, as walking for me, even just a few steps, runs my battery down to zero super fast. ME/CFS is also loads more than fatigue, as it affests the nerous system, its a multi organ illness, affecting the brain, heart, lungs, stomach. I get chronic headaches and migraines, heart palpitations and dizziness, I cant control my tempreture, my brain fog now is off the scale, my speech is often affected. Its such a serious condition and yet so little is known or understood about it. These symptoms can be managed but currently recovery is very hit and miss. Fred is an Ass!
So glad that triptans work for you! They didn't work for me but the propranolol works so well as a preventive for me that I now don't need them :) Triptans aren't actually pain relief, they're abortatives that can stop the cortical spreading depression that causes a lot of migraines.
Ah ok, didn't know that's how they worked! I tried propanol as a preventive and that made me wheezy! I'm on topirimate instead, it was catching most of them, and reducing the severity, but then over last few weeks I've had a migraine flare up. Now my topirimate has been increased so hopefully that'll help and I won't need many triptan . Good to have them on hand though because there is nothing like migraine pain!
Sumatriptan was a miracle when I first got it, but little by little it started making me queasy and not helping the migraines as much as it had before. I switched to rizotriptan, and had the same experience -- miracle at first, and then bit by bit it became less effective and started making me queasy. I don't know if this is normal, but I thought I'd share. I hope sumatriptan remains helpful for you!
Oh bless you. I'm sorry that happened. Perhaps we get used to drugs over time? I was told not to take it too often, only given 6, so I've only taken them when I've felt the migrain present in a certain way. I can feel the difference in them, between one that's going to stay mild and one that's going to turn into a team of dozers in my head. So hopefully if I save them for the severe ones it'll be ok. The topirimate has been increased, and that was working as a preventative to decreases the frequency and severity, making them more manageable. It would be great if they'd go completely but not sure that's an option. I seem to be in the cohort of ME that experiences chronic headaches/migraine
@@FinnTheInfinncible it does sound like your migraines are more frequent than mine, so I really hope your current regimen works well for you for a long time! I've been getting a really surprising amount of relief from high doses of hemp CBD lately. It never takes the headache all the way out, but it helps more than I ever would have thought, with no side effects to speak of (and it's just from food grade hemp, not marijuana, so it's not a regulated substance around here, very convenient to keep on hand). The other source of recent relief that came out of left field for me is that I've been seeing a chiropractor after a recent car accident. I told him I get classic migraines, runs in my family, and he said, oh, chiropractic adjustments are very good for that. I thought it was typical chiropractor stuff, acting like chiropracty is the answer to everything, but what do you know, I've only had 2 serious migraines in the 4 months I've been seeing him, way fewer than I used to, and if I tell him I have a headache at the start of an appointment, he can make it go away! I'm utterly dumbfounded by this, but apparently there's something about the way the spine connects to the skull that is at least sometimes a major part of the cause of migraines? It's all woowoo magic to me, but it's working. Don't know if it would for everyone, but the chiropractor sure thought it would. If he's right, I don't understand why this treatment for migraines isn't more common!
@@rhiawolf I've never had mine properly diagnosed..my previous GP was of the belief that my chronic pain was psychological, then when l was diagnosed with ME he was of the attitude, well you have a diagnosis, what else do you want me to do? He went as far as saying that they sounded like migraines and have me a preventer, the topirimate, and a MRI to rule out anything wrong, but that was it! At their worst they can last days at a time. But even managed they are pretty much every morning on waking lasting for the first hour. In a crash or flare they are the first thing to increase. It's just annoying that because little can be done for ME that my Ex GP was just happy to leave me suffering! I do think some massage might help. Trouble is, getting to an appointment is so difficult for me and attending consistently. Also my body reacts abnormally to things, so manipulation and massage might actually do me more harm than good. It's so bloody tough to get any proper guidance with this illness!! It's like this tennis elbow. The physio I saw was really good and explained that with ME, I can't do the unusual exercises as my body with not manage it so I can't even heal properly from that. Honestly, Fred is such a drama queen and a fussy pain in the rear!
@@FinnTheInfinncible that all sounds so frustrating!! I'm definitely a big believer in massage. We're all so tense it's killing us. I hope Fred will let you out at least for that now and again. I'll also mention a book that turned my world upside down recently called "The Body Keeps the Score". Can't remember the author but pioneer researcher in childhood trauma. We keep hearing our pain and fatigue is all in our heads, which is blatant nonsense and flat out cruel, but our minds and bodies are interconnected on every level, and mental suffering causes stress, which takes a serious toll on our health and energy. Real and undeniable physical illness can be literally caused by emotional scars. I'll get something wrong if I go into more detail, but it's a great book. I don't have access to any of the cutting edge therapies for healing that the author recommends (insurance wants everything to have a pill you can take, and this is definitely not that), but I'm hopeful that if one day I can address the underlying causes of my lifelong anxiety, maybe lower stress levels will allow my body some chance to heal too. Because none of it is in our heads, but every part of us is connected to our hearts.
Hey Finn 👍 Sorry to ask this but... Are you on an SSRI? The reason I ask is I went 2 years of having CFS and I was VERY bad. I would sleep 8-9 hours at night and then still feel tired all day and then needed an afternoon nap and then I was excited for bed again that night. I was on an SSRI and someone says.. Those drugs are terrible get off them. I quit them cold turkey (I don't recommend this) but it took a good 3 months and I have ZERO fatigue. I can even sleep 6 hours at night and remain feeling good all day. If your on an SSRI then please speak to your doctor about quitting. I would honestly put a bet on that you will feel better (That's if your on them that is) High serotonin is horrid on our overall energy. It also lowers dopamine and makes us feel so numb. Please I hope you take this advice. Best of luck 👍
Thank you for your concern. I am on an antidepressant, I've had a mood disorder/ anxiety for many years and have periodically tried to not take them and it's never gone very well! I understand people have bad experiences, and if so they should always speak to their doctor but saying these drugs are terrible is just not correct, for many people, these are life-changing medications. They have been life-changing and life-saving for me many many times. Many antidepressants do cause fatigue that is true, but ME/CFS is a completely different condition from fatigue, and as far as I am aware, there is no link between ME/CFS and the use of SSRI's.
I went on an ssri when I first got CFS and it made all my symptoms so much worse, but years later I tried a different ssri and it didn't effect my symptoms but helped with my depression. I think it's different for everyone but I'm glad it helped you coming off it.
"Fred" is a funny and cute name for your ME. It means "peace" here in Norway. I haven't thought to name my ME. Maybe "drittsekk", which I won't translate here... ;)
Boom and bust young man, boom and bust….you can boom when your further down in your journey (my further down was 8 years) with a little less bust, but your still in the burning hot stage. So need to try and not boom, cos you’ll make the burning stage last much longer. I call my arthritis Arthur lol. I do plan my days to have rest breaks. Like I do a lady in the morning, rest, then take the dogs out, have a longer rest, then work…which is sat down, and it’s super easy. Took me years to find work that didn’t aggravate something. (Diagnosed 2007) Because either Arthur was aggravated or my M.E. If I am not working in the morning I vegetate all morning in my pyjamas. I always have to factor vegetation into my day. My new diagnosis (sjörgrens) has made my CFS worse again, so Having to navigate the extreme fatigue again. Pacing is mentally hard…because you want to do more even though you know it’s gonna make you crash. I did do CBT years ago, and at the time it did help, but now I keep thinking… how can we keep putting a positive spin on it? Does my head in. I wake up with awful headaches, I keep mentioning to my doctor but they never seem bothered, it it’s awful, I don’t even want to move my head. After listening to you I am gonna talk to my GP again, although I can’t see them until 9th November! 😮
Trying to see a GP now is so bloody hard. Why can we still not see a GP face to face! And no im not doing boom and bust. I think you've misunderstood. I put lots of work on the back burner, whilst I got things sorted, the diagnosis, moving, PIP, learning to pace etc, thinking that as time went on, ld be able to pick up some work again, in a much more simplified manner or course. But despite pacing so much better, lm not finding any free space to pick bits of work back up. The realisation I speak about in the video is that there isn't free space because pacing and taking care of ME/CFS takes up so much time!
Ahh I got you love. I did misunderstand. I managed to talk to GP and she has prescribed me Sumatriptan for future bad migraines and see how I get on and if they work well I can add to my repeats. Suggested codeine for current pain. Which I have some of already. Been in a migraine stupor all afternoon.
@@mrsbabycakes5551 ah glad you spoke to GP. Mine have calmed back down since my preventer the topirimate was increases so I've only used a few of the Sumatriptan, but it's good to have them on hand for if and when they return to bite me on the ass! Bloody awful aren't they!
hello poppet , super relate to you ... your m.e has a nice name ,,,,, mine is called bastard and yes i do argue with my m.e. which m.e service are you with please ? and which c,b,t, book did you get , sorry im nosey . i have one hell of a job myself , from making sure were eating,drinking,meds hygiene,resting,raaaaaaa its full on when were so ill. ive suffered for 30 years so have quiet a journey so if u want to chat id like that . you are doing your public speaking , here to us so thank you hun x
Hey lovely. Yes Fred gats called lots of F words ....but Fred is the most polite public version! I'm with Sentinel ME/CFS service in Plymouth. They are a small service that diagnose, and then work one to one via telephone appointment to teach pacing techniques. The book I'm working though is their energy management manual. It's all various pacing techniques and sleep hygiene and so on. The occupational therapist is really lovely and has been very helpful. And yes, this is one heck of a job isn't it? The more pacing l implement, the better care I take of myself, the less time I have! I stupidly though it was going to be the other way! When I started pacing some months back, I honestly thought that with less crashes, it would mean I'd be able to work on a few hours writing work a week, but now those hours are spent resting, eating properly, meditation, blah blah blah!!! It really is never ending! But......I have improved from where I was so l cant complain and if doing this means less awful crashes and no work I'd rather that than awful crashes and work. Righ now my health is my job and that has to be ok! And, as Yiu very kindly say, I am still doing what l love her 😊💕
@@FinnTheInfinncible I have no choice but to pace these days I spend most of my life in the bed , I have p.o.ts and fibromyalgia too so a dizzy bird !! I saw your Glastonbury post. Have you ever been to womad , its a nice small festival and good for the less abled ravers and super colorful . One of my dreams is to be well enough to not be missing out on festival fun in summer as my mates go and I sulk !! Life is so different since my last collapse but one day . Will check ur videos out slowly thank u and big up x
@@joyoung7804 bless you, lm in the moderate to severe catagorory l guess, l alternate between bed bound and housbound. I have times where I've no option to take to bed/sofa because I've crashed or had a flare. Other times I can do a couple of small things in a day, and perhaps one small trip out on Molly the scooter with my partner in a week. I can on occasion go on holiday, camping or caravaning with help from Chris as long as we heavily adapt it and make time for pacing etc, but l pay for it massively afterwards. So l know I'm luckier than most but still, it's a bloody tough life. I could have less symptoms if I did less, but l want to still go out and enjoy life when l can. I limit it, Glastonbury was a massive risk, and one not taken lightly! But I had to choose between my mental and physical health for that one and not going would really seriously have damaged my mental health as Glastonbury has been my spiritual retreat every year for many years. That will be my last one now for a while so it had to be done. It's so hard isn't it, knowing sometimes we just have to do something knowing we will crash anyway!
You’re doing a great job, but yes you are are only just starting to adjust to your new job. It’s great to see that you’re feeling a little more at ease with everything Lots of love xxxx
Told you I had a paradigm shift this week as well! I can't believe I didn't see this!!!! No bloody surprise l couldn't manage to do everything else as well! This has really helped me to relax and let go of so much. However my work is going to look is a question l can ask in the future, right now this work is the important work!
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We cld all write a book about our GP experiences🤬 ...awful!
BTW really resonate with u wfh, love to write spk publicly etc etc.
Had symptoms for yrs just got diagnosed (that was by paying private 🤬 & I'm skint).
Have migraines & had exactly same as u...inc being happy person but plagued with depression...only reason I got sumatriptan for migraines was other half found a chemist who got lot of American meds but anyway had those OTC & sthing else sadly can no longer get others but now demanding them from Dr.
Keep up the self love, give yourself a break because when U do it encourages us to too💞🫶🙏
My boys named it Zonk when were in highschool. They are 44 years old, that's how long this has eaten my life. Grateful it didn't get bad till they were grown up and gone. But I think it began as Mono when I was in college 1972!!
Zonk is the perfect word for it!
The best way to make videos is to make them as you are because we see the real you and that's who we love ♥️
I appreciate that so very much, thank you
This helps a lot. I have schizoaffective disorder and have had to quit a job recently and i avoid socializing. Its just too hard. But like you said, managing the illness is a job! I go DAILY to the psychosis clinic, i see a psychiatrist 1-3 times a week and its a commute! All of that takes it out of me not to mention the psychotic and mood symptoms, i have to manage. Thank you!
I'm so glad your new Dr is listening and helping you being yeah my gp is rubbish too! I think in the future took are going to do so much good work to help people with ME! I know you are struggling now but reason for everything my friend love you xx
I LOVE your unedited pyjama recording ❤ truly. Burps and all. This is how i can relate to you much more truly than videos with loads of editing, makeup, etc. These also often loose the natural pauses in between sentences which really makes my system stressed out. Ah, i just want to praise this choice of sharing yourself as you are. It makes me resonate with your being a lot more, just cause I'm human too, and my life isn't edited.
And i send you much love in such stormy times. It is so hard and it requires so much strength to just be. We're in this together ❤️
I appreciate this comment so very very much, thank you! Ive actually enjoyed going back to basics like this. I never really liked the polished marketed style that the analytics and the algorithms asked for. Id rather have fewer subscribers truly engaged than high numbers of folks who aren't even watching, besides, its exhausting trying to be perfect 🤣. Id rather be a hot mess and connect with people who relate, so thank you very much for your kind words!
@@FinnTheInfinncible exactly, and that is my way too.. what a guideline for living!: I'll rather be a hot mess and connect with people who can relate ✨️✨️
I agree, managing a chronic condition really is a full time job! I have to spend quite a bit of time doing physiotherapy so I can manage my chronic pain. Plus all the breaks, resting, and planning, takes a lot of mental energy. I'm glad to hear you have a doctor that's taking better care of you! Here in Canada we're also at the mercy of the public health care system, waiting is awful (although at least it's free unlike the poor folks in the states).
Hi my friend, yes this sounds very similar to me. I short sightedly thought l could manage work around all of that but then forgot to take into account other things like, , maintaining a personal life with Chris where we still go out,, but to do that I need to rest before and after, so that eats into remaining time to work. Then there is financial stuff, fighting this financial disability benefit, sorting out my many physical symptoms and trying to get a doctor's appointment, this leaves no time in a day! I don't know what l was thinking!!!! Life with an energy limiting condition is utterly impossible isn't it!!!
At least I've seen it now, and I can give myself a break and shelve big work plans for a while. It's not easy, it brings up so much sadness, but my health must come first! We have to put ourselves first don't we!
@@FinnTheInfinncible Resting before and after each activity is so frustrating, but necessary for me now too. It's been severe since major surgery in 2015. What are you gonna do?
You're putting words to the thing I've been feeling a lot regarding me/cfs for me, Finn. It IS a fulltime job managing it all! And I'm not even doing things like therapy or applying for money. When I'm outside it's like "Alright, do I go all the way over there to get to the escalators or do I just walk the distance anyway? Well, this time it'll probably be easier not to go to the escalators." All this strategizing really wears you out and I hadn't really noticed until recently.
Your videos are always lovely, Finn, and it's handy we don't have smell-o-vision on youtube. I wouldn't have bothered with the arm pits to be honest. 😆
Haha! Yeah I really hadn't thought about that! Next time, leave out the armpits! And absolutely yes it's exactly this, not only is it a condition that causes exhaustion, but also it's exhausting managing it! And not only the self care treatments, like pacing, but the constant calculations we have to do with every single bloody action we take! When it's your life, it's far too easy to just normalise it and forget it's not everyone's reality and completely overlook just how enourmously difficult it is. We are superheros!
Thank you for your lovely comments, I'm so chuffed you enjoy these videos as I really enjoy making them, even though l perceive them to be a waffley mess! 🤣
I’m in a similar boat. 🥺 The internalized ableism is real, it sometimes leads me to flare, and unfortunately Im in a massive one right now. I have both ME/CFS and hEDS, and if I had a choice to pick one to get better it would be ME. I’m sorry you’re dealing with this too, sending good vibes!
I cannot belive how much internalsed ableism I have! Ive had a massive shift in perspective this last 18 months! Im learning to just let go of other peoples expectations, and societal shoulds and do things my way that work for me, but it is a work in probgress!! Thanks for the good vibes, sending millions back to you too!
I used to blame myself for my ME fir so long, but it’s better now. We’re our own worst enemy sometimes.
The long Covid research is suggesting that ME could be a hijacking of the immune system or a chronic reactivation of a virus. Hope you both get stronger and know you’re not alone😊
Thanks watching this makes me feel heard and normal.
I'm glad to hear that!
Life with more severe ME/CFS and Fibro is way harder than working with mild forms of those illnesses was. I was working as teacher full time in elementary education, which is known to suck your life away anyway, and I was able to be really active but I was suffering symptoms all the time for over a decade.
I've had to simplify everything but keeping up with all my symptoms plus the amplification of pain and sickness symptoms is way harder than anything else I used to go through.
I was just having these exact same thoughts so this video is really helpful. Thank you. We get used to dealing with all this extra pain and sickness all the time so we do forget how much harder it is for us to just try to function and get through each day.
I subbed ya.
Fantastic to find your channel. I have never in my 13 years with M.E. / Prescribed drug withdrawal syndrome met another LGBT+ person! Big love from Scotland xxx
Ah well hello! Love Scotland so much! Love to you and welcome!
@@FinnTheInfinncible it really is a full time job managing it. X
@@scotscub76 it really is my friend and with an added later when we are also LGBTQ I think
@@FinnTheInfinncible yeah. I went to sitges with my Efoldi scooter a few years ago. I felt embarrassed as theres such a focus on looks. I bet everyone was thinking I wonder if his willy works! At least I turned all the hot bears heads haha 😄 I do 2 hrs meditation a day to manage mine.
@@scotscub76 oh goodness yes the ableism! It's been a crash course for me in learning that one!
You are definitely doing your best to manage your ME/CFS. The added stress of money issues doesn’t help at all. Keeping you in my prayers.
Thanks my dear friend!
Amen, full time job management of ME/CFS. Too many days of nothing but ME 😢
Yes! Full time job managing ones limited energy which is ironic!
brilliant insight and so helpful for me today. Thank you so much for this. i needed to hear this today
Bless you. I'm so glad this was helpful. Thanks for watching and thanks for taking the time to lete know!
Oh how I love to see a new video from my Finn!!!
Love the PJ's. 😜
What a brilliant epiphany!! Managing your illness is indeed a full time job dude!!
You just keeping processing and evolving beautiful man. Love you!
Aw I love you!
All the people who have long Covid. Finally they’re taking ME/CFS seriously as real. It may be viral activation of virus we had at one time. I got it after a virus and a vaccination. Better now but it took a long time and being told it was just mental. I’ve got elevated ANA and other autoimmune conditions, so perhaps it’s all related.
Anyway, wishing you health and a breakthrough. You seem to have a great energy about you! Wishing you strength as well. You’ll get better! ❤
Yes love the longer videos and your beautiful face and your amazing pjs
Aw sweets, thank you!
Hi fin fully understand the head pain, had it my self for the whole years same response from gp. I managed to get my under control during the day with blue light glasses.. but still wake up every morning with them so thank you for the information as always.. and thank you for showing that no one is alone in this journey through ME
Bless your heart, thanks so much for your lovely comment. I havent tried the blue light glasses, but Im having a lot of success with the higher dose of preventative (toparimate) and the added sumitriptan as pain relief. Ive also recently been assessed for PoTS and it looks like tha could be whats causing my constant headaches. Im started news meds soon and really hoping that makes a difference as waking up each day with a banging head is no fun! Hope you are doing well?
I love your videos. Thanks for the reminder.
Ah thank you I'm so glad you do! 💞
Hey sweetie, you're absolutely right, 'just' managing what's going on can very much be a fulltime job! Muchness your way for the PIP stuff to be considered as it should be and yay for the better migraine meds, oh and some purrrrrrrrs from Paxton too !
Aw hello lovely. Yes indeed , l cannot believe I didn't think about all I'm having to do to look after myself and adapt to this condition! There's me feeling bad about still crashing and so on, and not yet finding a way to work around this illness, but it's not surprising is it! Blooming heck! And yay indeed for migraine meds, my head has felt like a cloud for two days rather than a tangle of thorns which is such a relief! Hugs to you and purrs to Paxton!
Sending you some love, and I'm so glad that your doc gave you some triptans and that they are working! So glad. As a fellow migraine warrior, I'm so glad. Keep taking it easy!
Thank you so much! To have some relief is, well, a relief! 💜
Oh Finn, m'love, I know the 'beating myself up because I should be doing MOAR' trap only too well 😑 These chronic conditions suck soooo much - if only there were a magic wand, eh? Thank you for making this video, and yep, I love the 'waffley' ones (and GOOD that you're not worrying about the timings!). Much love as always xx
Thanks lovely. Yes I'm having to live in the surrender and acceptance mindset. It's so tough isn't it? I had got to the point of accepting I would need to do less but thought l would still be able to do something! But it's the deadlines that I see now are my real issue in living with chronic illness . A talk deadline isn't too bad if it's online ,as it's just one event and done but a book deadline is a whole other thing as its ongoing, because it requires constant daily work, if that makes sense, so now I'm back to the drawing board about how I'm going to work and what exactly l can do going forward. This is so blooming tricky! I'm so gratefully to you all for being here and helping me work through this! Xxx
Hi Finn, I just want to say you talking about this openly has helped me so much because sometimes as someone who has fatigue people just don’t get it, they just don’t get it at all not even the people who are meant to help you , eg. PIP and it gets me so angry sometimes. Thank you cause I have been having a mini crash this week and honestly I just feel exhausted after doing barely anything and it’s so frustrating and you feel so helpless and lonely sometimes and you talking about this just makes me feel so much better cause sometimes I feel like I am making it up and ye Fred’s an ass lol
@Jett I know it’s honestly awful sorry that happens to you too
Hi my friend, I'm glad this video helped. It's sadly true that invisible illness like these are poorly understood, and often badly misrepresented by the medical profession which does not help! It's hard enough managing this, let alone feeling like you have to prove you really are struggling!
Im learning that l have to just prioritise me and my needs, my pacing and energy management has to come first, if I'm exhausted, I have to stop, if lve said yes to something but I'm not well enough l must cancel, I must surround myself with people who understand l need to live this way and walk away from those who don't. It's not easy, but we owe it to ourselves. If we had broken both our legs we would be putting these things into place easily, people would understand and we wouldn't give ourselves a hard time, this is no different, just because you can't see it. Sending you so much love
@@FinnTheInfinncible
Hey Finn, I really needed to hear that today honestly I had never thought about it like that before and I just feel so seen. I really appreciate your videos and I understand that you don’t always have the energy to make them honestly I wouldn’t haha your doing such an amazing job rn even if it feels shit and honestly awful and Fred is being an idiot. You should be so proud of yourself and honestly anyone reading this with fatigue or other conditions take a moment just to say to yourself well done. Take time to evaluate what’s right for you and like you said Finn it’s ok to cancel. 👍👍
Thank you for doing what you do it helps so many so immensely. I hope you are able to get some sleep.
Bless you my dear kind friend. Sleep is never enough! Kind words are what get me through 💜
it's not only a full time job, it's a job that doesn't pay, I mean you don't even get weekends or holidays off, and you're on call 24h a day! Oh, how I long to take a holiday away from myself for even just a few days...
Goodness yes! And the overtime....unsociable hours!
You're a great person Finn I enjoy watching your content
Ah buddy thank you!!!
Thank you for sharing your experiences. I'm glad you're still moving forward, even if it's in small steps. You're such a huge inspiration. :)
Bless you my dear friend
Thanks for reminding me of all this!
Thanks for watching! Glad it was helpful 💕
Hello my cohort with ME/ CFS. There's so much I want to say but I'm in the middle of a crash or a flare and I don't want to say anything until I feel a little more on the ball and able for my words to have the meaning I want them to. I just want to say I really enjoyed the video there's a bunch I want to share about it and I'll be talking to you soon.
Glad you enjoyed the video. Sorry you are in a flare. Rest up my dear friend. I look forward to reading your thoughts soon! 💕
Just wanted to thank you for this video, and no it was not too long. Love the pjs. I am so sorry you have this full time job of dealing with the ME/CFS. I hope the little something extra I added as a thank you for this video will help you and Chris. Sending lots of love, Finn. I'll be sending you my question for the Q&A soon! ❤
Hey Kevin! These PJ's are so comfy, and they make me smile! Thank you for being so lovely. It is an annoying full time job to have but now lve realised this, it's made things make so much more sense! Now l can better plan an also not be so hard on myself! I can't see what you sent me, I'm on my mobile so I'll have a look on my laptop in a moment!
BUDDY!!!!!! A super thanks!!!!!! My word you are so very generous, thank you so very much! These are new to me, in fact this is only the second time Ive ever got one, seems they don't show up on my mobile, turned on my laptop, and what a lovely surprise, you are such a sweet and kind gent, thank you! 🙏🙏🌟🌟
@@FinnTheInfinncible I was happy to do it Finn - wish it could've been more. Gotta save for that top surgery, though! 😉
Seriously Finn, I appreciate you more than you know. Your willingness to share your experiences has helped me so much! Plus, I've always found myself being blessed so much more when I try to bless others. I hope you and Chris have a very lovely day! ❤❤
@@kevincollins53 I wish l could jump through the screen and hug you!!!!!! You do so much, in the way you support me through membership, donations, kind comments, wise words, appreciation, your friendship,.you bless me every day 💜💜💜💜
I hope you have put a complaint in about your ex gp and am so glad you're new one is helping you properly xx
Hi lovely! I havent yet. I really should, though the trouble is he didnt actually do anything wrong, he had opinions, and I think Id be hard pressed to lodge any complaint against that. I am however going to contact the ME society and asked them to send an up to date GP pack to my old surgery, specifically addressing the nature of ME as biological and not functional, because that was the old way of thinking that my ex GP couldnt shift from
Thanks!
Oh buddy! Thank you so very very much! This is my first ever super thanks! You are so kind, thank you! 🙏🙏🙏🙏🙏
Having such a PJ day as I call them, is really good for energy conservation. It also helps with the illusion to have a friends meeting to just hang around together.
My question for the q and a will come as soon as I found the link.
After my brain hemorrage, I also learned (no other choice) a whole new life mode, and did not get an occupational therapist, so muddled around alone and had a lot of trial and error , which was frustrating. Ten years later, I finally convinced my new neurologist to get OT, and still not got a psychotherapist. Being on disability, no going private, so waiting for the system to provide me with a slot on the waiting list.
Spoonies sure do have a full time job, managing their health.
Now, since 2020, there is an oncologic chronic issue, needing my attention every day, too.
Exactly this my friend. It doesn't help that these chronic conditions are often invisible, poorly understood and carry a ton of stigma, this means we have to work harder to fight the system with energy we do not have. It's utterly exhastinng. Trying to maintain even a tiny bit of a life and stay well, let alone work, is impossible, so I'm discovering!
Perhaps in a few more months things may settle more, who knows, but for now I'm being realistic as I discover just how much it takes to manage this condition and navigate the world with it.
Sending much love and solidarity your way.
Here is the link for your question
forms.gle/pmTXVYhiQFha8mpx8
ME is like having a very bad flu every day of your life.
Right now, just going to the grocery store takes every fiber of my being.😩
I wpuld love to do a study on this
Me too!.....if l had the energy 😂
1:48 I was on a Zoom call one day after putting on deodorant and a shirt one day, and the thought came to me: they can't smell me over a video call. 🤔 I still put on a shirt, but if I'm not doing much, no deodorant. We have really nasty water where I live, and it causes skin irritation to me, let alone if I'm having a "sensitive" day, I can't handle the feel of the shower water on me, even on the lowest pressure setting. Wet wipes are wonderful! 👌
I looked up sumatriptan, it's also an SSRI (antidepressant) so keep an eye on your moods my friend! So far so good though *migraines be gone!* 🧙♂
Isn't it counterintuitive to have something like this, and have to work harder to manage it than it was before you tried doing anything for it? I have similar issues but from different medical reasons, and it seems like more of a full time job (taking up more time and mental energy than physical energy) than my old job was 🤷♂
Thank you so much Finn, always love your face on my screen 😃 Much love as always, take some rest and give Chris a hello for me 😊Lamby was supervising you to make sure you were staying in screenshot 🐑 hehe 🥰
Hey lovely man! Goodness me yes, l can't believe how many hours of the day I spend thinking about, planning for, and taking care of my chronic illness! Fred is bloody hard work!!!! What was l thinking, expecting to work alongside this!!!! ARG! Maybe when I'm more practiced and settled....but certainly not now..
And can't smell me on zoom 😅😅😅 so true! It's become a standing joke in our house now that it's only arms down cuddles on certain days of the week 🤣🤣🤣🤣. I was really embarrassed about my lack of showering but if we can't do it we can't do it!
I keep trying to train Lamby butbhe just looks at me.......
Chris and l both send you tons of love!
@@FinnTheInfinncible I completely agree about the shower situation, funny you say arms down cuddling, I get the same thing from my boyfriend as well! We can only do what we can I agree. Lamby is watching you to make sure you're doing as ok as you can be 😊
Take it easy and will be posting a few pictures of Duluth on insta in a few days!
Thank you for continuing to share your life story with us ♥️ is there not any treatment that can help with the fatigue?
Thanks for always following and caring! Unfortunately, at the moment there is no cure for ME/CFS. The fatigue is due to problems within the functioning of the central nervous system, specifically in how energy is produced and stored, this bit malfunctions. The only treatment is energy management, called pacing, where you learn what your personal energy levels are, called your energy envelope, and then manage your daily activities so to not exceed that level during each day. This is why I use a mobility scooter, as walking for me, even just a few steps, runs my battery down to zero super fast. ME/CFS is also loads more than fatigue, as it affests the nerous system, its a multi organ illness, affecting the brain, heart, lungs, stomach. I get chronic headaches and migraines, heart palpitations and dizziness, I cant control my tempreture, my brain fog now is off the scale, my speech is often affected. Its such a serious condition and yet so little is known or understood about it. These symptoms can be managed but currently recovery is very hit and miss. Fred is an Ass!
@@FinnTheInfinncible aww no hopefully one day they discover something than at least help with the symptoms xx
So glad that triptans work for you! They didn't work for me but the propranolol works so well as a preventive for me that I now don't need them :)
Triptans aren't actually pain relief, they're abortatives that can stop the cortical spreading depression that causes a lot of migraines.
Ah ok, didn't know that's how they worked! I tried propanol as a preventive and that made me wheezy! I'm on topirimate instead, it was catching most of them, and reducing the severity, but then over last few weeks I've had a migraine flare up. Now my topirimate has been increased so hopefully that'll help and I won't need many triptan
. Good to have them on hand though because there is nothing like migraine pain!
@@FinnTheInfinncible Absolutely - I definitely don't miss that debilitating pain!
Sumatriptan was a miracle when I first got it, but little by little it started making me queasy and not helping the migraines as much as it had before. I switched to rizotriptan, and had the same experience -- miracle at first, and then bit by bit it became less effective and started making me queasy. I don't know if this is normal, but I thought I'd share. I hope sumatriptan remains helpful for you!
Oh bless you. I'm sorry that happened. Perhaps we get used to drugs over time? I was told not to take it too often, only given 6, so I've only taken them when I've felt the migrain present in a certain way. I can feel the difference in them, between one that's going to stay mild and one that's going to turn into a team of dozers in my head. So hopefully if I save them for the severe ones it'll be ok. The topirimate has been increased, and that was working as a preventative to decreases the frequency and severity, making them more manageable. It would be great if they'd go completely but not sure that's an option. I seem to be in the cohort of ME that experiences chronic headaches/migraine
@@FinnTheInfinncible it does sound like your migraines are more frequent than mine, so I really hope your current regimen works well for you for a long time! I've been getting a really surprising amount of relief from high doses of hemp CBD lately. It never takes the headache all the way out, but it helps more than I ever would have thought, with no side effects to speak of (and it's just from food grade hemp, not marijuana, so it's not a regulated substance around here, very convenient to keep on hand). The other source of recent relief that came out of left field for me is that I've been seeing a chiropractor after a recent car accident. I told him I get classic migraines, runs in my family, and he said, oh, chiropractic adjustments are very good for that. I thought it was typical chiropractor stuff, acting like chiropracty is the answer to everything, but what do you know, I've only had 2 serious migraines in the 4 months I've been seeing him, way fewer than I used to, and if I tell him I have a headache at the start of an appointment, he can make it go away! I'm utterly dumbfounded by this, but apparently there's something about the way the spine connects to the skull that is at least sometimes a major part of the cause of migraines? It's all woowoo magic to me, but it's working. Don't know if it would for everyone, but the chiropractor sure thought it would. If he's right, I don't understand why this treatment for migraines isn't more common!
@@rhiawolf I've never had mine properly diagnosed..my previous GP was of the belief that my chronic pain was psychological, then when l was diagnosed with ME he was of the attitude, well you have a diagnosis, what else do you want me to do? He went as far as saying that they sounded like migraines and have me a preventer, the topirimate, and a MRI to rule out anything wrong, but that was it!
At their worst they can last days at a time. But even managed they are pretty much every morning on waking lasting for the first hour. In a crash or flare they are the first thing to increase. It's just annoying that because little can be done for ME that my Ex GP was just happy to leave me suffering!
I do think some massage might help. Trouble is, getting to an appointment is so difficult for me and attending consistently. Also my body reacts abnormally to things, so manipulation and massage might actually do me more harm than good. It's so bloody tough to get any proper guidance with this illness!!
It's like this tennis elbow. The physio I saw was really good and explained that with ME, I can't do the unusual exercises as my body with not manage it so I can't even heal properly from that. Honestly, Fred is such a drama queen and a fussy pain in the rear!
@@FinnTheInfinncible that all sounds so frustrating!! I'm definitely a big believer in massage. We're all so tense it's killing us. I hope Fred will let you out at least for that now and again. I'll also mention a book that turned my world upside down recently called "The Body Keeps the Score". Can't remember the author but pioneer researcher in childhood trauma. We keep hearing our pain and fatigue is all in our heads, which is blatant nonsense and flat out cruel, but our minds and bodies are interconnected on every level, and mental suffering causes stress, which takes a serious toll on our health and energy. Real and undeniable physical illness can be literally caused by emotional scars. I'll get something wrong if I go into more detail, but it's a great book. I don't have access to any of the cutting edge therapies for healing that the author recommends (insurance wants everything to have a pill you can take, and this is definitely not that), but I'm hopeful that if one day I can address the underlying causes of my lifelong anxiety, maybe lower stress levels will allow my body some chance to heal too. Because none of it is in our heads, but every part of us is connected to our hearts.
Hey Finn 👍 Sorry to ask this but... Are you on an SSRI? The reason I ask is I went 2 years of having CFS and I was VERY bad. I would sleep 8-9 hours at night and then still feel tired all day and then needed an afternoon nap and then I was excited for bed again that night. I was on an SSRI and someone says.. Those drugs are terrible get off them. I quit them cold turkey (I don't recommend this) but it took a good 3 months and I have ZERO fatigue. I can even sleep 6 hours at night and remain feeling good all day.
If your on an SSRI then please speak to your doctor about quitting. I would honestly put a bet on that you will feel better (That's if your on them that is)
High serotonin is horrid on our overall energy. It also lowers dopamine and makes us feel so numb.
Please I hope you take this advice.
Best of luck 👍
Thank you for your concern. I am on an antidepressant, I've had a mood disorder/ anxiety for many years and have periodically tried to not take them and it's never gone very well!
I understand people have bad experiences, and if so they should always speak to their doctor but saying these drugs are terrible is just not correct, for many people, these are life-changing medications. They have been life-changing and life-saving for me many many times.
Many antidepressants do cause fatigue that is true, but ME/CFS is a completely different condition from fatigue, and as far as I am aware, there is no link between ME/CFS and the use of SSRI's.
I went on an ssri when I first got CFS and it made all my symptoms so much worse, but years later I tried a different ssri and it didn't effect my symptoms but helped with my depression. I think it's different for everyone but I'm glad it helped you coming off it.
"Fred" is a funny and cute name for your ME. It means "peace" here in Norway. I haven't thought to name my ME. Maybe "drittsekk", which I won't translate here... ;)
Peace! He is anything but peace lol! But I suppose I do need to make peace with him! Privately I call him.many much ruder words!!
Boom and bust young man, boom and bust….you can boom when your further down in your journey (my further down was 8 years) with a little less bust, but your still in the burning hot stage. So need to try and not boom, cos you’ll make the burning stage last much longer. I call my arthritis Arthur lol. I do plan my days to have rest breaks. Like I do a lady in the morning, rest, then take the dogs out, have a longer rest, then work…which is sat down, and it’s super easy. Took me years to find work that didn’t aggravate something. (Diagnosed 2007) Because either Arthur was aggravated or my M.E. If I am not working in the morning I vegetate all morning in my pyjamas. I always have to factor vegetation into my day. My new diagnosis (sjörgrens) has made my CFS worse again, so Having to navigate the extreme fatigue again. Pacing is mentally hard…because you want to do more even though you know it’s gonna make you crash. I did do CBT years ago, and at the time it did help, but now I keep thinking… how can we keep putting a positive spin on it? Does my head in. I wake up with awful headaches, I keep mentioning to my doctor but they never seem bothered, it it’s awful, I don’t even want to move my head. After listening to you I am gonna talk to my GP again, although I can’t see them until 9th November! 😮
Trying to see a GP now is so bloody hard. Why can we still not see a GP face to face!
And no im not doing boom and bust. I think you've misunderstood. I put lots of work on the back burner, whilst I got things sorted, the diagnosis, moving, PIP, learning to pace etc, thinking that as time went on, ld be able to pick up some work again, in a much more simplified manner or course. But despite pacing so much better, lm not finding any free space to pick bits of work back up.
The realisation I speak about in the video is that there isn't free space because pacing and taking care of ME/CFS takes up so much time!
Ahh I got you love. I did misunderstand. I managed to talk to GP and she has prescribed me Sumatriptan for future bad migraines and see how I get on and if they work well I can add to my repeats. Suggested codeine for current pain. Which I have some of already. Been in a migraine stupor all afternoon.
@@mrsbabycakes5551 ah glad you spoke to GP. Mine have calmed back down since my preventer the topirimate was increases so I've only used a few of the Sumatriptan, but it's good to have them on hand for if and when they return to bite me on the ass! Bloody awful aren't they!
Yes they sure are felt like poop all day.
Wow I can attest to a lot of misdiagnosing in psychiatric treatment.
Happens all to frequently. Sorry it's happened to you too.
You are hilarious!!
Finn your new 'job' is to bring awareness to an invisible illness using the platform that you have created.
That made me well up! 💜💜💜💜
hello poppet , super relate to you ... your m.e has a nice name ,,,,, mine is called bastard and yes i do argue with my m.e.
which m.e service are you with please ? and which c,b,t, book did you get , sorry im nosey .
i have one hell of a job myself , from making sure were eating,drinking,meds hygiene,resting,raaaaaaa its full on when were so ill.
ive suffered for 30 years so have quiet a journey so if u want to chat id like that .
you are doing your public speaking , here to us so thank you hun x
Hey lovely. Yes Fred gats called lots of F words ....but Fred is the most polite public version!
I'm with Sentinel ME/CFS service in Plymouth. They are a small service that diagnose, and then work one to one via telephone appointment to teach pacing techniques. The book I'm working though is their energy management manual. It's all various pacing techniques and sleep hygiene and so on. The occupational therapist is really lovely and has been very helpful.
And yes, this is one heck of a job isn't it? The more pacing l implement, the better care I take of myself, the less time I have! I stupidly though it was going to be the other way!
When I started pacing some months back, I honestly thought that with less crashes, it would mean I'd be able to work on a few hours writing work a week, but now those hours are spent resting, eating properly, meditation, blah blah blah!!! It really is never ending!
But......I have improved from where I was so l cant complain and if doing this means less awful crashes and no work I'd rather that than awful crashes and work. Righ now my health is my job and that has to be ok!
And, as Yiu very kindly say, I am still doing what l love her 😊💕
@@FinnTheInfinncible I have no choice but to pace these days I spend most of my life in the bed , I have p.o.ts and fibromyalgia too so a dizzy bird !! I saw your Glastonbury post. Have you ever been to womad , its a nice small festival and good for the less abled ravers and super colorful . One of my dreams is to be well enough to not be missing out on festival fun in summer as my mates go and I sulk !! Life is so different since my last collapse but one day . Will check ur videos out slowly thank u and big up x
@@joyoung7804 bless you, lm in the moderate to severe catagorory l guess, l alternate between bed bound and housbound. I have times where I've no option to take to bed/sofa because I've crashed or had a flare. Other times I can do a couple of small things in a day, and perhaps one small trip out on Molly the scooter with my partner in a week. I can on occasion go on holiday, camping or caravaning with help from Chris as long as we heavily adapt it and make time for pacing etc, but l pay for it massively afterwards.
So l know I'm luckier than most but still, it's a bloody tough life.
I could have less symptoms if I did less, but l want to still go out and enjoy life when l can. I limit it, Glastonbury was a massive risk, and one not taken lightly! But I had to choose between my mental and physical health for that one and not going would really seriously have damaged my mental health as Glastonbury has been my spiritual retreat every year for many years. That will be my last one now for a while so it had to be done. It's so hard isn't it, knowing sometimes we just have to do something knowing we will crash anyway!
You make me laugh with my misery 😂
Im so sorry you feel miserable, but I m glad to be able to cheer you up 😁
You’re doing a great job, but yes you are are only just starting to adjust to your new job. It’s great to see that you’re feeling a little more at ease with everything Lots of love xxxx
Told you I had a paradigm shift this week as well! I can't believe I didn't see this!!!! No bloody surprise l couldn't manage to do everything else as well! This has really helped me to relax and let go of so much. However my work is going to look is a question l can ask in the future, right now this work is the important work!