Managing PEM in ME/CFS: The Unavoidable Reality
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- Опубликовано: 8 сен 2024
- Avoiding PEM completely can be impossible when you have ME/CFS but with solid pacing techniques, you can reduce the post exertional malaise to manageable levels. In this video, I discuss good enough pacing, and not being hard on ourselves about getting it perfect when, after all, PEM is a part of ME/CFS and a symptom that is very hard to avoid no matter how hard we try.
More info on PEM
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Thanks so much Finn. This is such a reminder to people with ME too. I've had it for 10 years and often blame myself for not being great at pacing and this is a good reminder that pacing is so difficult and we are going to experience PEM anyway. Damn ME sucks but this video is great!
Ah my friend thank you, Im glad t was helpful. Its all too easy to blame ourselves, especially with this condition , because lets face it its so often misrepresented as "all in our head" and we take that on board from years of the medical profession telling us this. Pacing helps, but its never going to be a miracle cure and any medical professional that tells you that doesnt know what they are talking about! PEM is a symptom, its going to be there no mater what we do, unless we lock ourselves indoors and dont move, and we cant live like that can we! So its about minimising it as best we can and that my friend is good enough!
This is why I love your videos so much you are absolutely the best at explaining all the nuances of this illness. Im always nodding along saying yes, yes, yes!! Like you say it is not just feeling fatigued it is fatigue in EVERYTHING even down to the lungs making it exhausting just to breathe, not to mention all the other symptoms. This is such a good explanation I will have to remember this point when I explain to others. I wish doctors and people working for the DWP were forced to watch your videos lol. Thanks again for sharing, I really needed to hear that it doesn't matter how hard we try to pace we still get PEM and that doesn't mean we are doing pacing wrong. I am totally housebound so feel like I am barely doing that much to overexert yet PEM still shows up all the time - argh!. Love your dog too, so cute!!
You are so kind,what a lovely comment, thank you! Yes, the word fatigue, and calling this chronic fatigue syndrome, really does not even come close to explaining what his condition is and the severity of it. People here the word fatigue and think tired, but this is fatigue of EVERYTHING, the entire bodily system, from a neurological standpoint, at a biological level, we are literally shutting down and my goodness it hurts deeply!
So yes, try as we might to do our best to help stop this from happening, with the sheer amount of factors in our internal and external environmant, we simply cannot ever stop PEM from happening because it is a core part of this bloody awful condition.
Like you say, we can literally get exhausted from doing next to nothing! At my worst of times, Ive been stuck indoors, in between bed and sofa and still got PEM!
We have enough on our plates managing this condition without also having to manage the shame of being told we just need to try harder to pace when we are already doing the best we can.
Massive hugs to you and big licks from Pip!
@@FinnTheInfinncible Yes omg the name CFS so infuriating! It is so hard dealing not only with this illness but the added stigma and people not taking it seriously when this illness is in fact very serious and debilitating! Hopefully there will be more awareness now a lot of us are developing ME from covid and there is more research into figuring this out. I would love to hear in a future video how your occupational therapy is going and if it has been useful? Big hugs to you and Pip, hope you can enjoy this weeks sunshine and manage the heatwave ok!
A good reminder to stop being so hard on ourselves when we have a crash, pacing is not straightforward as you say!! This video is what I needed to see!!
Thanks for the encouragement Finn!! Jx 🙂👍🐕
My absolute pleasure. I am so very glad that this helped!
Totally get this with my fibro.
Had stress of PIP review and now they've decided that my mobility has improved since my last assessment. Good job I didn't get a Motobility car, as they'd be taking it off me now!
So, referred to a support agency to submit my MR, and the stress keeps on building...
And then I wonder why I'm so knackered! This heat means that I'm hiding beside my fan all day and only operating at night, so my sleep pattern is destroyed...
Have a great weekend, live to Chris and PIP too
Oh my friend I'm so sorry to hear this, the stress of these benefits is criminal. We really need an overhaul as they are supposed to be helping us not harming us . I really hope you get it overturned at MR. Sending you all my love.
Well said Finn it’s such hard work managing this illness ❤
Isn't it just. Juggling jelly is easier!
Finn!!! You are so fucking adorable. My gosh. ❤
This condition sounds so unbelievably hard. Yet your spirit has never changed. You are always going to be a light in this world my man.
Thank you for being so visible to the human condition. It's beautiful. Love you!
You always say the most lovely things, I love you so much!!!!
Thanks for the video Finn and putting knowlegde out here for peeps to see and hear. We're in a heatwave as well and I'm feeling it even though I don't get hot flashes anymore!
Exactly this! Extremes of temperature do not help, especially as ME/CFS usually has some level of dysautonomia attached to it so we struggle to regulate temperature anyway! Honestly, managing this condition is like trying to complete a Rubik cube whilst playing chess, in a wind tunnel, with a blind fold.on 🤣
Hi Fin, back in February I started to realize I had ME so your videos have been really valuable to help me come to terms with it. Pacing is really difficult. I’m working with Visible Health and Dr Davenport from Workwell Foundation here in California. I just had a crash start yesterday after a weekend of prepping for a birthday party and having my son’s dog to stay for the week (bringing our dog total to four). Sending you big hugs and wishing you the best ❤
Hello, Im so sorry you have this awful condition too. Its great that you have support from such amazing organisations though, that will help you so much. Pacing really is incredibly hard, especially in the early days as you begin to experiment and discover what your energy envelope is, what things drain your energy the most etc. Once you build up your knowledge, and have detailed lists of it all, it does become easier. And, with time, although pacing doesnt cure all, it does help to stp most of the really awful crashes and stop them from being so lengthy, at least hats been my experience. Wishing you all the very best of luck, feel free to update me on your journey!
It turns out I have a few reasons to watch your channel with my son transitioning and my daughter seeming to have me/cfs .... thank you for all of your experiences and insights.
Bless you, thank you for your kind comments! You have your hands full at home!
You've no idea how much I needed to hear this today.
I set off a crash with an attempt at groceries. Before I had a chance to recover, my daughter got food poisoning & despite her being 26 she still needs her Mummy
Thank you for reminding me that perfect is poison
Love & snoot boops
At the risk of being one of "them", have you tried using medicinal cannabis for the pain?
I've started a mix of CBD, THC, oils (topically & orally) & flower.
I'm getting really good results. Just wanted to share
"perfect is poison" oh l love that! It really is isn't it! I have SUCH a tendency toward perfectionism and it makes everything so much worse, poison is a perfect way to describe it!
I hope your daughter is ok, and l hope you get some space to have a lengthy rest time. Parenting is another spanner in the pacing works isn't it!
We do our best, and that's all we can ever do. Much love and spoons your way!
If that's aimed at me, then to answer, no , cannabis for me is completely off the table as I'm in recovery from drug and alcohol abuse and even medicinally I wouldnt risk the use.
@@FinnTheInfinncible Apologies
It’s impossible not to have flare-ups in my experience. Even now when my condition is mild (it was severe/moderate for years) and I can work part-time I still get them. Sometimes I accept a flare-up in order to do more, but I have to plan for it and have total rest days to recover. You explain it well. It’s really important not to beat yourself up. Glad you are still able to do some work and have holidays. Hope you get on top of your pain soon.
Thank you my friend. I do the same thing, plan ahead for a crash knowing that doing the thing that will cause it will benefit me in other ways, eg a mental health lift. Its all part of managing this condition isnt it? Not beating myself up is still very much a work in progress!
Aww, it's lovely to see you back on camera, dear brother, and I'm really glad to hear you've been able to get back some balance in your health. Yep, those of us with chronic illness have to spin an impossibly massive number of plates, and all we can do is our best. With my chronic illnesses combo I only get the smallest taste of the crushing fatigue my peeps with ME have to live with and I know even that tiny bit is awful. We have to balance pacing with quality of life and I'm really glad you're finding a life rhythm that is maximising enjoyment and minimising the worst of the PEM. Much love and big hugs as always xx
Oh I missed this! Sorry lovely. Yes finding balance is so hard. And fatigue is fatigue, any level is awful. Avoiding it completely would be wonderful, but sadly impossible, even if I did live the impossible sterile life, because of how easily PEM is triggered. But, pacing has helped me to get much more of a balance and quality of life and for that I am grateful!
@@FinnTheInfinncible Nothing at all to apologise for m'love! I'm glad pacing is helping you at least a decent amount xxx
Hello lovely man! Nice surprise to see a video from you! I haven't been checking my social media lately but see you have posted on there.
I have chronic illness too, and I agree, they blame it on us that we aren't getting better, when in truth, we're just planning for the crash so we can have some good time in our lives. I'll want to do something fun, and when illness gets in the way of wanting to have fun (and I don't mean partying or extreme sports, just a walk around a park or going to a fair) then I make sure I have a few days off afterwards to recover. Sometimes it gets so bad that even taking a shower or doing the dishes can cause a crash, and some people don't understand that in my circle of friends and family.
No, I can't hear the fly on my side of the screen hehe! 🪰 It's so cute when they try to chase and catch them though!
I hope you fared the heat wave alright, Pip looks adorable!
Where I live, we just had 97 degrees F a few days ago (36 C?), and tomorrow night we have a frost advisory already! What the...?? lol 🥵to 🥶 Much love to you!
Hello you! Yep our weather is doing wierd things too! Last week we were in gale force winds and torrential rain and now we are in a heat wave! It's here for a few more days and both me and Pip are struggling!
And exactly as you say, we want to go and have fun, but not like anything hugely energetic, just the simple things that other people take for granted, but for us they are like running a triathlon and we need a month to recover! It's incredibly hard to explain to folks who don't have or understand this condition.
We just have to do our best and plan for the times when we know we will go out and have the inevitable crash time afterwards.
Sending my love to you!
The look at the camera after noticing the fly!😂😂
Subtitles are so funny. "Posted social malaise "
But seriously, a valid video. It's so hard not to beat myself up when i crash.
Oh that fly! Drove me mad! Im glad this was helpful, stop beating yourself up, its no use, and we dont need any more bruises
Ive been wondering for a while now if I'm dealing with CFS because I seem to get PEM episodes...but then can have a chunk of time inbetween where things seem fine. I just don't know. But it's terrifying when it happens, because i keep reading "avoid PEM at ALL costs or you will risk becoming bedbound" which, i realise is a risk, but that just stresses me out more... and that becomes a vicious circle. Your video is the first to give me hope.
Hey Finn... good to see your face!!! Thanks for helping me understand ME/CFS, and all the issues that ensue. It is wonderful that you keep smiling and important as well. lm sure you have your days where it gets too much. lm not your dad but l am proud of how you have handled this, because l can see how debilitating it can be on your life. That PEM is a killer for sure. So pacing is a b*tch? lts a good thing Chris is there to help you out too. l think people on their own would struggle more. Wishing you and Chris and Pip a glorious week! l have two weeks off work now because of school holidays so lm happy. Lotsa love xo 🏳⚧🏳🌈
l see ♥
Hey lovely man! Yes indeed,.it really does get me down at times, it's hard to keep a positive head, or even a neutral head when the exhaustion and pain is severe. Pacing really helps, without it things would be so much worse, but even with pacing it's impossible to be completely symptom free and sometimes out of the blue you can be hit hard even when you've done very little, and that's so tough to deal with.
I am very very blessed to have Chris. The support of a partner, emotional and practical, helps so much. I wouldn't get out like I do if it wasn't for his help, it would simply take too much energy . Going round the block on my own exhausts me! Chris is my eyes and ears, door opener, second brain etc, so that makes it easier to go places I'd never manage alone
PEM ...driving the car to an appt 30 mins away and back again, seeing the Dr, feeling okay on the day but day 2 mini crash and at least a few days to recover if not a week to recover. That is the reality. Doing 'nothing' with give u PEM. Its so awful and exasperating. I have been sick with CFS for 2 decades . i cannot believe I am still here :( Who can live that long with this awful disease and NO support from health system .
I find it so hard to pace. I'd love help with it as I just can't seem to do it. ❤
It is really difficult because there are so many variable, but the basics are fequent rest breaks between tasks, breaksing tasks into chunks, and alternating different types of energy tasks, so mental, emotional and physcal tasks, and never doing them back to back so do a mental task, then a break, a physical task, then a break and so on. Use things to make taks easier, eg sit to chop veg to save energy. This is the core of pacing. I shall do my bestto make a video at some point!
I managed to watch eventually😂💜xx
Are you hanging out of a tree 😂😂
@@FinnTheInfinncible nope, but I did have to dangle at a certain angle on the decking 🤪xx
Going to have to complain to the manager about his Wi-Fi signal 🤭🤣🤣🤣
@@natashamason3328 considering it's the managers WiFi yes 🤣🤣🤣
Always say I sux at pacing, your brilliant at explaining things, thank you for that! I need to stop beating myself up. Yes please do a video on the tapping. I have a hard time trying new meds, just had to stop one since it was increasing my migraines. Do you have ac? I crash if I overheat... Pip sure looks handsome with his new haircut.
Indeed! You do not suck at all, it's just part of this condition and you are doing your very best! Please stop wasting energy on beating yourself up for something that is. It your fault 💜. I wish we had AC, we are not set up for hot weather here! My ME and PoTS combo do not like the heat at all, that's a massive crash right there!
Look after yourself, big love from me!
Could you make video about gabapentin and how it causing you crash? 🙏
PEM is different every day. Hello pip!!❤
Exactly this! Pip says woof!
Some amount of pem/crash is inevitable, even as energy and capacity increases. Its BECAUSE of newfound energy or capacity or endurance, the baseline has moved. And we realise I can do such and such just fine. And maybe we can. Until we blow past the new baseline and get a PEM. At least I am better at building in PEM or the chance of PEM. FInn, have you or can you in the UK, try Low Dose Naltrexone? Its been a game changer for me. Drastically reduced the amount of PEM (or rather, increased my tolerance for activity?) I still can get PEM, when I find the new baseline. BUt the plus is that the goal post is moving positively regarding activity/capacity/tolerance, right?
My worry is managing surgeries with me/CFS. I have Hysto booked in for Oct and I still have stage 2 and 3 of phallo to go and the thought of it is exhausting but I've been waiting since 2017 since stage 1 😑
OMG that's a long wait. lm presurgery and we dont even have trans surgeries here yet on the public system. l'll be waiting forever.
l really hope things speed up a bit for you. Best wishes with everything brother. From Australia... :) 🏳⚧🏳🌈
Hey buddy. I understand the worry, and the need for surgery. That wait time is horrific. All you can dois get as much support as possible for the recovery time, so that you can focus fully on recovery and let everyone look after you, is that possible? Also, lots and lots of very good fresh food, if you can perhaps cook beforehand and freeze, or get a meal delivery service?
I have all these symptoms after covid
Im so sorry that you do. Long covid has very similar symptoms to ME
Are u still off venlafaxine
I heard the fly before you mentioned the fly 😂
I was trying to ignore it for ages 😅😅
I could tell! I'm a first time commenter but followed your video's for a long time. Our journey's appear quite similar as I too am a trans guy with ME. You can add all the problems you've had with your PIP claim and report to that too! Glad you got your claim sorted
I must have lost that frequency because I couldn't hear it 🤣
What your dose brother
Im on 100 mg for week t cypionate
I have just been put on gabapentin recently for restless legs/fibromyalgia. Does anyond else been on them? Does anyone find them good?
Im finding they are taking the edge off the pain, but they are making me extra fatigued and foggy
Do you get light headed when you're in the shower for more than a few minutes? Then have to lay down afterwards before you can dry and get dressed. I get it when my CFS and Fibro flare up. I wondered if it was linked to those or if it was POTS.
Hey my friend! Yep, this has always been a huge issue for me. I get palpitations, dizziness, light headedness, after a very short time in a shower, my heart rate also shoots up. Sitting down on a shower stool helps, keeping the water temp lower helps too, and showering very very slowly, not lifting my arms above chest height
After a shower I'm absolutely wiped and have to lie down until my heart rate comes down and dizziness stops. If I try and do any like dry and dress I'll just sweat!
It can be part of ME as orthostatic intolerance and dysautonomia are common in ME/CFS but these are also found in PoTS too and if they are in excess with other symptoms could well be a sign of PoTS
@@FinnTheInfinncible Thank you. I tried to get my GP to do the sitting/standing test for POTS but I know she didn't have me sit down long enough. I'm at a new surgery now because we moved area so I'm hoping the GP's here will be a little more helpful. Thank you for your videos. I learn so much from you 🥰
@@TOX1STUBE I'm very happy to help. Finding a GP who understands these things is really really tricky . My first GP wouldn't even entertain the idea of investigation! Often we have to really push and be a strong advyfir ourselves, which is not easy when Yiu have an energy limiting condition l know. 💜. There's some really useful info on the PoTS website if you haven't found it already www.potsuk.org/
Did you at any point through your transition think you might have made a mistake or have doubts or not like certain things in your transition
Doubts are a normal part of any massive life choice, decision, or chance, and this was definitely the case for lots of times during transition. Doubts are healthy, they make us question whether things are right for us.