What an amazing view of the sunset!! squirrel is such a good dog name btw :) ! I’m amazed that you find the scooter better to maneuver indoors compared to the folding power chair. I’m so happy to see how far you’ve come since being at your sickest.
Thanks! It is lovely, isn’t it? Yeah these scooters have such good turning. It’s sort of amazing. Probably because they only have one wheel in the front. I was always banging into the hallways with my power wheelchair, though that could also have been operator error.
Great video! Thanks for sharing. It's always interesting to me to see how people pace differently. Keep up the good fight! And I'm looking forward to more videos on this channel.
@@gusparaguss Hey thanks so much! It is interesting to me as well. Both how others pace and even looking back at how I paced five or ten years ago compared to what I am doing now. Not sure if I am doing things better now but that’s something I’m always striving for while also doing things that bring me joy. Hope you’re hanging in there and finding joy when you can!
Thanks for sharing! It's amazing to see how far you have come! I saw you in some documentaries some time back and I read your book when it was released which shocked me to my core! You so vividly described what life is life for someone who is bed-bound, it was a real eye-opener and sounded like such a brutal experience. So it is nice to see you mobile and more functional. I would love to see a video on how you lost so much weight! Ive been housebound for almost 4.5 years now (ME/CFS and POTS from Long Covid) and have been really struggling with weight gain. I was slim before I got sick so it is hard to see myself in the mirror now. Keep posting! It is interesting to see someone else's life with this illness!
Hi! Thanks so much for reading my book and following along with my journey. I am so sorry that you are going through your own struggles as well. I totally know what you mean about looking in the mirror. When my health improved and I was able to look in the mirror again I was like, “Wow, my hairline is receding and my belly is expanding. What the hell!” I will definitely try to make a video on all that. It’s a good topic. Thanks so much for the suggestion!
@@JamisonWrites Yes totally agree! I hadn't looked in the mirror properly for ages and when I finally looked I was shocked. Lots of grey hairs and a much larger body than Ive ever had. Its not just the physical suffering thats hard but the transformation of our appearance. Its tough as its such a shocking visible sign of our changed identity. Would be great if you could cover it!!
Great tour of your daily life, it showed me the nitty-gritty of your daily existence, I apologize for all the emails cheerleading the desire for your increased ability to walk ... I still hold out that hope as your incremental progress continues ... your are an Intrepid Dude, dude ... keep it rolling son ...
@@marinadurrant6322 Thanks! It depends on the day and how I’m feeling but usually a few hours before I need to lie down. If I can recline a bit and elevate my feet I can stay in my scooter most of the day. I can sit up way longer than I can stand.
I read your book a few years ago, and am so pleased that you've improved enough to do some things for yourself & take occasional trips. I'm impressed that you can hold up the shower rose. I can't (and can barely type this comment!) On the other hand, I can walk to the bathroom and stand long enough to brush my teeth as long as I don't already have PEM on board. How do you find the bed wedge? I like having my head elevated but find that my hips & glutes get really jammed so it's a tough one to solve!
@@FionaEm Hi! You know you are not the first person who has said that they can walk to the bathroom but can’t sit up for long. For whatever reason I seem to have the opposite problem. I can sit up for long periods of time but can’t be on my feet more than a few seconds before feeling terrible. Such a mystery. I got the wedge pillow from Amazon. Are you in the US? I’ll send you a link to it.
@@FionaEm I have a few different ones at different angles. I actually bought a big one and just cut off the smaller end and used that for a while. If you can’t find one that works you could try something like that.
What an amazing view of the sunset!! squirrel is such a good dog name btw :) ! I’m amazed that you find the scooter better to maneuver indoors compared to the folding power chair. I’m so happy to see how far you’ve come since being at your sickest.
Thanks! It is lovely, isn’t it? Yeah these scooters have such good turning. It’s sort of amazing. Probably because they only have one wheel in the front. I was always banging into the hallways with my power wheelchair, though that could also have been operator error.
Great video! Thanks for sharing. It's always interesting to me to see how people pace differently. Keep up the good fight! And I'm looking forward to more videos on this channel.
@@gusparaguss Hey thanks so much! It is interesting to me as well. Both how others pace and even looking back at how I paced five or ten years ago compared to what I am doing now. Not sure if I am doing things better now but that’s something I’m always striving for while also doing things that bring me joy. Hope you’re hanging in there and finding joy when you can!
Thanks for sharing! It's amazing to see how far you have come! I saw you in some documentaries some time back and I read your book when it was released which shocked me to my core! You so vividly described what life is life for someone who is bed-bound, it was a real eye-opener and sounded like such a brutal experience. So it is nice to see you mobile and more functional.
I would love to see a video on how you lost so much weight! Ive been housebound for almost 4.5 years now (ME/CFS and POTS from Long Covid) and have been really struggling with weight gain. I was slim before I got sick so it is hard to see myself in the mirror now. Keep posting! It is interesting to see someone else's life with this illness!
Hi! Thanks so much for reading my book and following along with my journey. I am so sorry that you are going through your own struggles as well. I totally know what you mean about looking in the mirror. When my health improved and I was able to look in the mirror again I was like, “Wow, my hairline is receding and my belly is expanding. What the hell!” I will definitely try to make a video on all that. It’s a good topic. Thanks so much for the suggestion!
@@JamisonWrites Yes totally agree! I hadn't looked in the mirror properly for ages and when I finally looked I was shocked. Lots of grey hairs and a much larger body than Ive ever had. Its not just the physical suffering thats hard but the transformation of our appearance. Its tough as its such a shocking visible sign of our changed identity. Would be great if you could cover it!!
Great video! And a very nice looking bathroom.
Thanks man 🤗 I’m just trying to get on your level. Give me a couple years and I’ll get there 😆 And you can use my bathroom anytime!
Great tour of your daily life, it showed me the nitty-gritty of your daily existence, I apologize for all the emails cheerleading the desire for your increased ability to walk ... I still hold out that hope as your incremental progress continues ... your are an Intrepid Dude, dude ... keep it rolling son ...
Thanks Dad 🤗 I always appreciate a little cheerleading! Love you!
Good to see how you have improved, how long can you sit up right in the scooter?
@@marinadurrant6322 Thanks! It depends on the day and how I’m feeling but usually a few hours before I need to lie down. If I can recline a bit and elevate my feet I can stay in my scooter most of the day. I can sit up way longer than I can stand.
I read your book a few years ago, and am so pleased that you've improved enough to do some things for yourself & take occasional trips. I'm impressed that you can hold up the shower rose. I can't (and can barely type this comment!) On the other hand, I can walk to the bathroom and stand long enough to brush my teeth as long as I don't already have PEM on board. How do you find the bed wedge? I like having my head elevated but find that my hips & glutes get really jammed so it's a tough one to solve!
@@FionaEm Hi! You know you are not the first person who has said that they can walk to the bathroom but can’t sit up for long. For whatever reason I seem to have the opposite problem. I can sit up for long periods of time but can’t be on my feet more than a few seconds before feeling terrible. Such a mystery. I got the wedge pillow from Amazon. Are you in the US? I’ll send you a link to it.
@JamisonWrites No, I'm in Australia. Have tried a few bed wedges but they're too high and the angle kills my hips.
@@FionaEm I have a few different ones at different angles. I actually bought a big one and just cut off the smaller end and used that for a while. If you can’t find one that works you could try something like that.
Loved seeing this (especially the very sexy parts) Thanks for sharing 😊
Thank so much! 😆 I had to put the sexy stuff in there.
@@JamisonWrites Hey, disabled folks are sexy 😝