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@@FinnTheInfinncible One month on - I love it! It's given me 12 points a day, and it's so good to have an external measure of how much I can do! Also, showering apparently takes me 3.5 to 5 points?! No wonder I'm always so knackered afterwards!
I’m in Canada and I have been using the free Visable app since January. I’m excited that the paid option with Polar armband should be available this year. The free app is helpful and helps to share info when at appointments. Looking forward to take advantage of the expanded features soon. Thanks for your detailed non-sponsored feedback!
Wohhoo! I hope you get it there asap! And yes, showing it to our health care professionals is so very useful, I like that you can actually export data! Thank you for your lovely feedback!
My doctor has recommended it, but money is a huge issues right now. Thank you for input on this really gives me the information I need to make a good decision.
Thank you Finn for being so open about the ME/CFS journey. I am currently in the diagnostic stage (one more test to go) but two doctors already think I have CFS and I do too. Your vlogs about pacing and basically being kind to yourself throughout are really helping me. As for visible and the wearable, you totally sold me on this. I just joined the waitlist for the wearable. Get that sponsorship, you really did sell it well with your experience with it.
Bless you my friend, thank you for this lovely comment. Im so glad these vlogs are helping. The journey to diagnosis is a tough one, the next hurdle is learning to manage it and having an amazing tool like visible will make such a difference, I wish Id had it from the beginning! I am wishing you all the best. Keep taking it day by day and giving yourself a ton of love.
I'm so happy this has been such a game changer for you! I really hope this tech is rolled out via the NHS as it would save a TON of money in the long run. I've found the Visible app to be incredibly useful with my conditions, although with my specific circumstances heartrate isn't such an issue so I don't think I need to go onto the wearable (at least not right now). Thank you for such a detailed and honest assessment of this xx
Thank you so much! And I agree, if this was rolled out it would really help people with energy limiting conditions to learn to quickly manage their energy and avoid making their symptoms worse and help to aid long term recovery. Half the issue is learning to manage these conditions which takes so much time, and in that time we end up doing more damage with all the crashing and burning. I love that with this app I can so easily see how my body is. When I struggle to move without my heart rate spiking staying high, l know my body isn't doing well and I need to rest. When I have days where my heart rate spike but then drops into the rest zone quicker, I know my body is in a better state. This is so much easier than guess work. I can actually see the fatigue in black and white and act according. Now, even where at the moment I'm struggling with a flare in symptoms, it's nowhere near as bad as it would be as I'm able to respond to it so much better by just following what is happening right in front of me. It's absolutely magic! I wish I'd had this sooner!
You, sir, you are my hero. I was already diagnosed with Fibromyalgia and I just found out that I have an autoimmune rheumatic disease so my doc is sending me to a rheumatologist. I started pacing myself a few days ago using Gentler Streak, which is specifically for workouts and sleep hr & hrv tracked through my Apple Watch. BUT! I started thinking about all the things I do that have me spending energy that ISN’T exercise. And that’s when I found Visible. I have sensory sensitivities, so I ordered an extra band. I’m hoping to see if that will work, as time had issues with rubber stretchy material in the past. If it works, great! I’ll get visible right away. If it doesn’t? Well that’s when I get my seamstress mother in law involved and I ask if she can make me a custom strap! (I may want custom straps anyway!) and if it can be done easy, then I’ll for sure be hopping on board. I have a question. But I’ll make another comment about that haha thanks for the video!!
Bless you! Ive just answered your other question, which I hope helps. I hope you are getting on with visible OK? And I love the idea of a custom strap!
Oh my goodness, congratulations!! What a relief for you. Also, I'm glad my review has been helpful, honestly, I wish Id had visible from the beginning, I hope you find it as helpful as I have, good luck!
@@FinnTheInfinncible Thanks, yes huge relief!! I still can't believe I got PIP! The armband arrived a couple of days ago. I had a few issues trying to get the heart rate monitor thing in and out of the armband and the charger but I think Ive got the hang of it now. Looking forward to seeing how it all works :)
I watched this a few days ago and decided to subscribe. Device arrived today and I’m wearing it in for the 4 days. Can’t wait to see what my budgets and points etc will be. Hopefully give me some stability x
Well done Finn I have to say I do the non subscription visible atm and am tempted now you have said it’s a good thing, I’m not very technical though and worry I won’t know how to use properly 😬
Hey lovely, I really would not worry. It isn't technical at all. I know it looks it, but you start very basic. I literally just scanned it, then it was set up, then I left it alone to do its thing for four days and just let it alert me. After that I gradually started learning what it could do, but it honestly is so simple.
Yes Finn 🤚 I love my visible just filling in about my symptoms every night and doing my morning check in I love. This little gadget and app validating my illness on a daily basis like the clever little app it is 😂😂 nearly 6 years with this awful stupid illness robbing me of myself to the point I don’t even recognise that person in the mirror and this moment of quiet, recording how I felt that day on the app just somehow reminds me that I am not actually mad, I do have a disability despite it being so random and making no sense with all it’s weird fluctuating strange symptoms that change every day
Bless your heart. I know exactly what you mean. The loss and grief is so heavy, and on top of that , with this condition especially, is the disbelief that often comes with it. I've had to push for diagnosis, for help from gaslighting doctors, and it leaves you feeling so invalidated. To see your condition made by visible by an app like this really helps doesn't it? Just to know it is real, it isn't in our heads. It's so hard living with this and managing this. I love Visible, not just the app, but the fact that there is a whole team working so hard to make change in the way chronic, invisible usable conditions are seen. Much love to you!
Thanks, great info. I recently signed up after much worry about cost. Only a week in and already helping. Great to hear how it's helping you. Side note, have you tried Fresh Wipes? UK company recommended by health care workers. Especially useful if water washing is difficult. Much more effective than flannel or baby wipes. (Not sponsored, just like myself). Take care.
Great that you're finding the Visible app so helpful. Unfortunately the premium version with the arm band is not yet available in my country. I did just order a Polar H10 chest strap which can do continuous heart rate monitoring. I'm wondering if there's an easy way or an app to use this to translate it to something similar to your pace points? I'm thinking you should be able to somehow track the time you spend in 60-100 BPM and 100 BPM and get some sort of estimation that way?
What a great vlog, I ordered mine today and I can 100% relate to everything you say re POTS and ME/CFS. I am aware that visible can’t monitor the social and emotional impact on pacing, but I noted you mentioned that you have anxiety when you go out on your own which increases your pace points. Do you know if your HR shows a marked increase when you feel this anxiety going out, or if you’re felling stressed or socialising? Thank you
Thanks so much! And yes, my HR definitely increases and doesn't come down as quickly when I have anxiety going on. Anxiety also affects my PoTS and brings on the overheating and sweats, which in turn increases my heart rate. When I'm socialising my heartrate is much higher and often in exertion, even when I'm not feeling anxious. There is also so much more I have to do alone that eats into my energy, compared to when I have help and support going out. I have to be so much more alert, driving my wheelchair, getting myself on a bus, talking to people, remembering directions etc. My partner is my eyes and ears when we are together, he will often also speak for me in shops, and the difference in energy used is staggering!
Finding this has hit me a little hard cause my boy.. as well meaning as he is on multiple occasions has stated that I’m lucky.. when I’m in the recovery periods. And that I “get” to stay home while he and his dad go out for school and work. I can’t go out. The jobs I use to have would floor me. Seizures mean I can’t even drive to a friends.. this means I can’t even walk down the street to the only neighbor I know without being floored for 2 days. I’ve had to sit on the floor on the way to the bathroom.
Hello there lovely man! ☺ That looks like a wonderful tool, would be neat if they somehow got sleep in there as well, but even just during the day my fitbit shows a huge HR spike up to 150+ and I can't figure out why! So far they're leaning towards long covid for me. I went through a stress test and they said my heart was fine, my lungs are fine, but I still have no energy, hard time breathing and just feel like a pile of rubbish most days. I got my fitbit because I was wondering how bad my sleep really was, and that's been a big help. Now I'm just trying to figure out what else I can do, sounds like a good product to look into! Thank you Finn! 🥰Any helpful tools are worth talking about for sure! Give Pip some subscriber loves from me! 🐩Hello Chris! 👋
I’m on the fence about this. I have an odd condition called elders-Danlos and a lot of the company that she brings. One of which is pots. My heart rate sounds a lot like yours. My heart range is from around 37 to 213. 🤷♀️🤦♀️ I get high and low notifications from my Apple Watch, but I don’t know how to pace myself and I definitely can’t take meds. To add to it I have gastroparesis so I can’t eat or drink properly either.
Goodness me that's a huge heart range to deal with, you must be exhausted. Pacing is incredible hard, and I think it's even harder when you have heart symptoms thrown into the mix. For.many people, myself included, pacing is made so difficult because it is largely guess work and takes so long to get to know our bodies With this app, it's so much easier, it's all there in fromt of our eyes to see exactly what effects us, no guess work, no trial and error working out our energy envelope, the app does that for us. This may well be the thing that finally helps you to learn to pace and it sounds like pu really needs spme.hwlp and hopefully some relief and balance. I've had an awful day today, my POTS is having a rave party for absolutely no reason but with this app I can just see what's happening and just know to write off today and lie down, and rest , and try again tomorrow. I can take my measurements in the morning and see what my body is doing,and plan accordingly from there. This is the support I wish I'd had at the beginning of this god awful condition. Sending a ton.of solidarity your way!
Hi again! Question: do you find that you are able to find the time/ability to do gentle workouts? I’m new to all of this so I’m still in the mindset that “if I slowly push my limits upward. key word being SLOWLY, then I can get better/stronger/have more Pace Points *eventually*” ya know? I mean. When I’m not doing SOME form of movement through the day, I am a grump and my muscles and joints ache. If I push too much I ALSO have muscles and joints that ache, but instead of grumpy, I’m fatigued and sad. So.. yeah. I know it’s individual, but just wondering about exercise. Even if it’s just stretching or walking. :) thanks!
Hi! I understand what you mean, it seems logical that we should try to do something, I thought so in the beginning too, BUT...no, its actually bad for us to exercise and can do us long term damage and set any recovery back. WE have issues in our cells, in the way that energy is made and used. In people without ME, exercise helps strengthen bodies, in us, it just does does more damage. Ill link you to more info here www.meresearch.org.uk/me-cfs-when-exercise-puts-your-health-at-risk/
Also makes your invisible illness visible potentially to loved ones or anyone you trust to share data with….guess I should patiently listen to end before commenting 😂. Do you think watching the phone helps reduce anxiety which contributes to heart rate like when doing perceived risky things like shower or out with Chris. I’m so happy for you🎉. I am in my first month of being instructed to pace….admit I’m very confused about the ‘how’ so far. Will check this out.
Hi, it does everything automatically, which is the beauty of it! Once you have worn it for 4 days and its worked out how many pace points it allocates to you, it sets these each morning when you first put it on, then as you go throughout your day its will deduct as you go based on your heart rate. You can chose to log activities, so that you can see which ones use the most pace points, but you can keep this as simple or as complicated as you want. Hope this helps!
Don't forget to subscribe for more imperfectly random and honest updates, and If you would like to say thanks, and support my work, please join our loving Friends of Finn community as a supporter or member ( And get Discord access and exclusive extra bonus content!) finlaygames.com/memberships-and-donations/
If you'd like to support me in other ways (and get awesome stuff!) you can :
Buy my memoir: finlaygames.com/my-books/
Buy T-shirts: finnspirational-designs.creator-spring.com/
More T-shirts/accessories: www.zazzle.co.uk/store/finntasticmerch
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i just got an ad for visible so wanted to see if anyone had made any vids on it and this was really helpful thank you!
Im so glad this was helpful, thank you for letting me know!
They should sponsor you-you really sold it
Haha! Thank you!
Okay, I've been on the fence about this, but I'm sold. Feel free to use this comment to get some sponsorship from Visible 😉💷
Haha! Perhaps they will! Honestly its amazing, Id love to hear how you get on!
@@FinnTheInfinncible One month on - I love it! It's given me 12 points a day, and it's so good to have an external measure of how much I can do! Also, showering apparently takes me 3.5 to 5 points?! No wonder I'm always so knackered afterwards!
I’m in Canada and I have been using the free Visable app since January. I’m excited that the paid option with Polar armband should be available this year. The free app is helpful and helps to share info when at appointments. Looking forward to take advantage of the expanded features soon. Thanks for your detailed non-sponsored feedback!
Wohhoo! I hope you get it there asap! And yes, showing it to our health care professionals is so very useful, I like that you can actually export data! Thank you for your lovely feedback!
My doctor has recommended it, but money is a huge issues right now.
Thank you for input on this really gives me the information I need to make a good decision.
I'm glad my sharing helps. It's my hope that these surgeries become accessyto everyone everywhere regardless of income.
Thank you Finn for being so open about the ME/CFS journey. I am currently in the diagnostic stage (one more test to go) but two doctors already think I have CFS and I do too. Your vlogs about pacing and basically being kind to yourself throughout are really helping me. As for visible and the wearable, you totally sold me on this. I just joined the waitlist for the wearable. Get that sponsorship, you really did sell it well with your experience with it.
Bless you my friend, thank you for this lovely comment. Im so glad these vlogs are helping. The journey to diagnosis is a tough one, the next hurdle is learning to manage it and having an amazing tool like visible will make such a difference, I wish Id had it from the beginning! I am wishing you all the best. Keep taking it day by day and giving yourself a ton of love.
I'm so happy this has been such a game changer for you! I really hope this tech is rolled out via the NHS as it would save a TON of money in the long run. I've found the Visible app to be incredibly useful with my conditions, although with my specific circumstances heartrate isn't such an issue so I don't think I need to go onto the wearable (at least not right now). Thank you for such a detailed and honest assessment of this xx
Thank you so much! And I agree, if this was rolled out it would really help people with energy limiting conditions to learn to quickly manage their energy and avoid making their symptoms worse and help to aid long term recovery. Half the issue is learning to manage these conditions which takes so much time, and in that time we end up doing more damage with all the crashing and burning.
I love that with this app I can so easily see how my body is. When I struggle to move without my heart rate spiking staying high, l know my body isn't doing well and I need to rest. When I have days where my heart rate spike but then drops into the rest zone quicker, I know my body is in a better state. This is so much easier than guess work. I can actually see the fatigue in black and white and act according.
Now, even where at the moment I'm struggling with a flare in symptoms, it's nowhere near as bad as it would be as I'm able to respond to it so much better by just following what is happening right in front of me.
It's absolutely magic! I wish I'd had this sooner!
You, sir, you are my hero. I was already diagnosed with Fibromyalgia and I just found out that I have an autoimmune rheumatic disease so my doc is sending me to a rheumatologist. I started pacing myself a few days ago using Gentler Streak, which is specifically for workouts and sleep hr & hrv tracked through my Apple Watch. BUT! I started thinking about all the things I do that have me spending energy that ISN’T exercise. And that’s when I found Visible. I have sensory sensitivities, so I ordered an extra band. I’m hoping to see if that will work, as time had issues with rubber stretchy material in the past. If it works, great! I’ll get visible right away. If it doesn’t? Well that’s when I get my seamstress mother in law involved and I ask if she can make me a custom strap! (I may want custom straps anyway!) and if it can be done easy, then I’ll for sure be hopping on board. I have a question. But I’ll make another comment about that haha thanks for the video!!
Bless you! Ive just answered your other question, which I hope helps. I hope you are getting on with visible OK? And I love the idea of a custom strap!
I recently got a Xiaomi Band 9 and it is helping me out a lot.
I havent heard of that, how do you use it and how does it help?
I just found out I got awarded full PIP so I have ordered this after seeing your review a little while ago! Im excited to try it out!
Oh my goodness, congratulations!! What a relief for you. Also, I'm glad my review has been helpful, honestly, I wish Id had visible from the beginning, I hope you find it as helpful as I have, good luck!
@@FinnTheInfinncible Thanks, yes huge relief!! I still can't believe I got PIP! The armband arrived a couple of days ago. I had a few issues trying to get the heart rate monitor thing in and out of the armband and the charger but I think Ive got the hang of it now. Looking forward to seeing how it all works :)
@wildgardens brilliant! I look forward to hearing how you get on!
I watched this a few days ago and decided to subscribe. Device arrived today and I’m wearing it in for the 4 days. Can’t wait to see what my budgets and points etc will be. Hopefully give me some stability x
Im so glad this vlog helped! I really hope visible helps you as much as is helped me!
Well done Finn I have to say I do the non subscription visible atm and am tempted now you have said it’s a good thing, I’m not very technical though and worry I won’t know how to use properly 😬
Hey lovely, I really would not worry. It isn't technical at all. I know it looks it, but you start very basic. I literally just scanned it, then it was set up, then I left it alone to do its thing for four days and just let it alert me. After that I gradually started learning what it could do, but it honestly is so simple.
Yes Finn 🤚 I love my visible just filling in about my symptoms every night and doing my morning check in I love. This little gadget and app validating my illness on a daily basis like the clever little app it is 😂😂 nearly 6 years with this awful stupid illness robbing me of myself to the point I don’t even recognise that person in the mirror and this moment of quiet, recording how I felt that day on the app just somehow reminds me that I am not actually mad, I do have a disability despite it being so random and making no sense with all it’s weird fluctuating strange symptoms that change every day
Bless your heart. I know exactly what you mean. The loss and grief is so heavy, and on top of that , with this condition especially, is the disbelief that often comes with it. I've had to push for diagnosis, for help from gaslighting doctors, and it leaves you feeling so invalidated. To see your condition made by visible by an app like this really helps doesn't it? Just to know it is real, it isn't in our heads. It's so hard living with this and managing this. I love Visible, not just the app, but the fact that there is a whole team working so hard to make change in the way chronic, invisible usable conditions are seen. Much love to you!
@@FinnTheInfinncible love to you too excellent content as always xxx
Hello Finn I am glad you have found something helpful to you
Thanks so much!
Thanks, great info. I recently signed up after much worry about cost. Only a week in and already helping. Great to hear how it's helping you.
Side note, have you tried Fresh Wipes? UK company recommended by health care workers. Especially useful if water washing is difficult. Much more effective than flannel or baby wipes. (Not sponsored, just like myself). Take care.
Yes I too worried about the cost but its very much worth it isnt it! And thanks for the info about fresh wipes, I have just ordred some!
Great that you're finding the Visible app so helpful. Unfortunately the premium version with the arm band is not yet available in my country. I did just order a Polar H10 chest strap which can do continuous heart rate monitoring. I'm wondering if there's an easy way or an app to use this to translate it to something similar to your pace points? I'm thinking you should be able to somehow track the time you spend in 60-100 BPM and 100 BPM and get some sort of estimation that way?
I love the t shirt.
What a great vlog, I ordered mine today and I can 100% relate to everything you say re POTS and ME/CFS. I am aware that visible can’t monitor the social and emotional impact on pacing, but I noted you mentioned that you have anxiety when you go out on your own which increases your pace points. Do you know if your HR shows a marked increase when you feel this anxiety going out, or if you’re felling stressed or socialising? Thank you
Thanks so much! And yes, my HR definitely increases and doesn't come down as quickly when I have anxiety going on. Anxiety also affects my PoTS and brings on the overheating and sweats, which in turn increases my heart rate. When I'm socialising my heartrate is much higher and often in exertion, even when I'm not feeling anxious.
There is also so much more I have to do alone that eats into my energy, compared to when I have help and support going out. I have to be so much more alert, driving my wheelchair, getting myself on a bus, talking to people, remembering directions etc. My partner is my eyes and ears when we are together, he will often also speak for me in shops, and the difference in energy used is staggering!
Finding this has hit me a little hard cause my boy.. as well meaning as he is on multiple occasions has stated that I’m lucky.. when I’m in the recovery periods. And that I “get” to stay home while he and his dad go out for school and work.
I can’t go out. The jobs I use to have would floor me. Seizures mean I can’t even drive to a friends.. this means I can’t even walk down the street to the only neighbor I know without being floored for 2 days. I’ve had to sit on the floor on the way to the bathroom.
Hello there lovely man! ☺
That looks like a wonderful tool, would be neat if they somehow got sleep in there as well, but even just during the day my fitbit shows a huge HR spike up to 150+ and I can't figure out why! So far they're leaning towards long covid for me. I went through a stress test and they said my heart was fine, my lungs are fine, but I still have no energy, hard time breathing and just feel like a pile of rubbish most days. I got my fitbit because I was wondering how bad my sleep really was, and that's been a big help. Now I'm just trying to figure out what else I can do, sounds like a good product to look into!
Thank you Finn! 🥰Any helpful tools are worth talking about for sure! Give Pip some subscriber loves from me! 🐩Hello Chris! 👋
I’m on the fence about this. I have an odd condition called elders-Danlos and a lot of the company that she brings. One of which is pots. My heart rate sounds a lot like yours. My heart range is from around 37 to 213. 🤷♀️🤦♀️ I get high and low notifications from my Apple Watch, but I don’t know how to pace myself and I definitely can’t take meds. To add to it I have gastroparesis so I can’t eat or drink properly either.
Goodness me that's a huge heart range to deal with, you must be exhausted.
Pacing is incredible hard, and I think it's even harder when you have heart symptoms thrown into the mix.
For.many people, myself included, pacing is made so difficult because it is largely guess work and takes so long to get to know our bodies
With this app, it's so much easier, it's all there in fromt of our eyes to see exactly what effects us, no guess work, no trial and error working out our energy envelope, the app does that for us.
This may well be the thing that finally helps you to learn to pace and it sounds like pu really needs spme.hwlp and hopefully some relief and balance.
I've had an awful day today, my POTS is having a rave party for absolutely no reason but with this app I can just see what's happening and just know to write off today and lie down, and rest , and try again tomorrow. I can take my measurements in the morning and see what my body is doing,and plan accordingly from there. This is the support I wish I'd had at the beginning of this god awful condition.
Sending a ton.of solidarity your way!
Hi again! Question: do you find that you are able to find the time/ability to do gentle workouts? I’m new to all of this so I’m still in the mindset that “if I slowly push my limits upward. key word being SLOWLY, then I can get better/stronger/have more Pace Points *eventually*” ya know? I mean. When I’m not doing SOME form of movement through the day, I am a grump and my muscles and joints ache. If I push too much I ALSO have muscles and joints that ache, but instead of grumpy, I’m fatigued and sad. So.. yeah. I know it’s individual, but just wondering about exercise. Even if it’s just stretching or walking. :) thanks!
Hi! I understand what you mean, it seems logical that we should try to do something, I thought so in the beginning too, BUT...no, its actually bad for us to exercise and can do us long term damage and set any recovery back. WE have issues in our cells, in the way that energy is made and used. In people without ME, exercise helps strengthen bodies, in us, it just does does more damage. Ill link you to more info here www.meresearch.org.uk/me-cfs-when-exercise-puts-your-health-at-risk/
The irony is not lost on me that I'm researching this device and app while also trying to do some situps... 😅
How amazing is this device 😊I want one 😅 what do they cost ?
You can get more info here
www.makevisible.com/
Also makes your invisible illness visible potentially to loved ones or anyone you trust to share data with….guess I should patiently listen to end before commenting 😂. Do you think watching the phone helps reduce anxiety which contributes to heart rate like when doing perceived risky things like shower or out with Chris. I’m so happy for you🎉. I am in my first month of being instructed to pace….admit I’m very confused about the ‘how’ so far. Will check this out.
would love to know if this helps increase the energy envelope
Me too! I am hopeful that overtime it will help me to at least stabalise more
Does the app automatically deduct pace points or do you have to log activities?
Hi, it does everything automatically, which is the beauty of it! Once you have worn it for 4 days and its worked out how many pace points it allocates to you, it sets these each morning when you first put it on, then as you go throughout your day its will deduct as you go based on your heart rate. You can chose to log activities, so that you can see which ones use the most pace points, but you can keep this as simple or as complicated as you want. Hope this helps!
i'll steal the second comment too :V
I had no idea about showers