It very often fleeting. And more often caused by feeling guilty about how much others (like R) are missing out on because of me. And it never more than a ‘is it all worth it? Maybe I’d …’ and then I stop and know it is all worth it, and it’s just guilt talking.
Honestly, I don’t go further down that route than that. It’s not in my nature. Thank you for caring lots though, but I’m not a depressive or the unaliving type. There is far too much to live for. I stop myself at ‘maybe’, knowing it’s pain or frustration that caused the beginning of the thought. Look out for Wednesdays poem, it show you what I think of death.
Please don’t apologise, you didn’t over react, it’s hard to know how to explain myself and your response was perfect really, you couldn’t know and you were thoughtful and gave good advice, and that advice (whilst not for me) could help someone else. And my autistic bluntness probably shone through. You were right to say what you did, I just wanted you to know I wasn’t in danger.
Its worth it just to feel less trapped, more possibility, a tiny breath of autonomy as you pootle along. When I was injured, a hired mobility scooter for a few months changed my world. Now my ME/CFS has me wishing I had it for the bad days. I’m not sure why we often believe mobility aids we don’t use every day are ‘indulgent’ but a lot of us seem to. Good luck!
Thank you. It’s hard isn’t it. I think because ME/CFS has been so maligned. Because we don’t ‘look’ ill (though you should see me on a bad day) when we venture out. Because it is hard to believe this happened to us, wasn’t it meant to happen to someone else? And I don’t like being seen as old and infirm. But that’s on me purely. It will be worth it. I really hope we find a good chair we can afford. But I have a back up plan if we don’t.
I’m ‘lucky’ to be diagnosed in the last three years so have faced less direct stigma. And practice at invisible illness mind management after a couple of decades of chronic migraine. Maybe what people see is a plucky and vibrant person living their best possible life? Even if that’s not how it feels? Internalised ableism sucks mightily.
The cost will be worth it when you're on the moors with the wind in your hair... So much better than the doldrums, although I totally get it, I've been visiting there a fair bit myself lately!!
It’s annoying isn’t it? I don’t want to be in the doldrums but it happens, so I accept it and try to slowly move out of them. I hope your doldrums move away soon.
Mobility aids can be game-changers. I hope it works out well for you!
Do you have a subscription with the arm band through Visible, or do you use only the app? I recently heard about it and would love to hear about your experience.
Thank you! Do you mind telling me how long you've had it? And have you found that the cost is worthwhile? I'm interested for myself (I have POTS and IBS which worsen with stress/overexertion) as well as for my sister (fibromyalgia, similar digestive and dysautonomia issues) and would really like to hear anything else you'd like to share about the specific ways in which it is helpful/worthwhile for you.
So I used the phone app for about 18 months before I decided to go for the sensor. I got it firstly on a month to month payment just to make sure I was okay with it. And then recently paid for a full year. I’ve used the sensor or for about 3 months now. It was very revealing in the first few weeks, showing where I needed to slow down or get extra help (like sitting to face wash and clean my teeth- so I now have a stool to sit on). It warns me when I’m overdoing it, and apparently it is very unusual for people to start shouting ‘I know!’ at their phones 😂. I do regularly. I struggled with the band, found it very itchy and very much overwhelming sensory wise so I bought a leather watch strap I altered and wear it on my lower fore arm (most wear it on their upper arm *shudders*. You aren’t meant to use it whilst asleep at night. I also have POTS and it’s easy to see when I stand up. It can be used to produce documents you can show your dr. It’s made me understand how I am. And how to help myself more. So another thing was we went to see Bill Bailey, I didn’t wear headphones for the first half, but did for the second and I could see in the graph how that helped me. It is a constant heart rate monitor (things like Garmin only take it every few seconds and people have found that very helpful.) That’s most of it I think. Can you think of anything else you’d like to know?
Hooray for power chairs! Hopefully it will be all you hope, and get you outdoors. Can’t wait for updates 🤗
Thank you.
I hope you don't often seriously wonder if it is worth it?! And that you have the right people on hand to listen to you when you are wondering?
Sending you love and light 🫂
It very often fleeting. And more often caused by feeling guilty about how much others (like R) are missing out on because of me. And it never more than a ‘is it all worth it? Maybe I’d …’ and then I stop and know it is all worth it, and it’s just guilt talking.
Please don't go down the 'maybe...' route - ring Samaritans if none of your cheerleaders are around xx
Honestly, I don’t go further down that route than that. It’s not in my nature. Thank you for caring lots though, but I’m not a depressive or the unaliving type. There is far too much to live for. I stop myself at ‘maybe’, knowing it’s pain or frustration that caused the beginning of the thought. Look out for Wednesdays poem, it show you what I think of death.
Sorry to over-react 🙄
Please don’t apologise, you didn’t over react, it’s hard to know how to explain myself and your response was perfect really, you couldn’t know and you were thoughtful and gave good advice, and that advice (whilst not for me) could help someone else. And my autistic bluntness probably shone through. You were right to say what you did, I just wanted you to know I wasn’t in danger.
You're still a doer - it's just that you're doing in a different way. You have so much to offer and I greatly enjoy your posts.
I'm excited for you about Friday! Do let us know how things go! 🛞
Thank you. Yes I’m a ‘from my sofa’ type of doer now arent I, I suppose.
I often say I can use brains or legs, but most days I can’t have both at the same time.
That's an excellent way of putting things! 😘
I'm glad, it's a subject I keep tripping over and getting a panic 🙄
Its worth it just to feel less trapped, more possibility, a tiny breath of autonomy as you pootle along. When I was injured, a hired mobility scooter for a few months changed my world. Now my ME/CFS has me wishing I had it for the bad days. I’m not sure why we often believe mobility aids we don’t use every day are ‘indulgent’ but a lot of us seem to. Good luck!
Thank you. It’s hard isn’t it. I think because ME/CFS has been so maligned. Because we don’t ‘look’ ill (though you should see me on a bad day) when we venture out. Because it is hard to believe this happened to us, wasn’t it meant to happen to someone else? And I don’t like being seen as old and infirm. But that’s on me purely. It will be worth it. I really hope we find a good chair we can afford. But I have a back up plan if we don’t.
I’m ‘lucky’ to be diagnosed in the last three years so have faced less direct stigma. And practice at invisible illness mind management after a couple of decades of chronic migraine. Maybe what people see is a plucky and vibrant person living their best possible life? Even if that’s not how it feels? Internalised ableism sucks mightily.
The cost will be worth it when you're on the moors with the wind in your hair... So much better than the doldrums, although I totally get it, I've been visiting there a fair bit myself lately!!
It’s annoying isn’t it? I don’t want to be in the doldrums but it happens, so I accept it and try to slowly move out of them. I hope your doldrums move away soon.
Mobility aids can be game-changers. I hope it works out well for you!
Do you have a subscription with the arm band through Visible, or do you use only the app? I recently heard about it and would love to hear about your experience.
Hi, I have the subscription to Visible, happy to chat about it any time.
Thank you! Do you mind telling me how long you've had it? And have you found that the cost is worthwhile? I'm interested for myself (I have POTS and IBS which worsen with stress/overexertion) as well as for my sister (fibromyalgia, similar digestive and dysautonomia issues) and would really like to hear anything else you'd like to share about the specific ways in which it is helpful/worthwhile for you.
So I used the phone app for about 18 months before I decided to go for the sensor. I got it firstly on a month to month payment just to make sure I was okay with it. And then recently paid for a full year. I’ve used the sensor or for about 3 months now. It was very revealing in the first few weeks, showing where I needed to slow down or get extra help (like sitting to face wash and clean my teeth- so I now have a stool to sit on). It warns me when I’m overdoing it, and apparently it is very unusual for people to start shouting ‘I know!’ at their phones 😂. I do regularly. I struggled with the band, found it very itchy and very much overwhelming sensory wise so I bought a leather watch strap I altered and wear it on my lower fore arm (most wear it on their upper arm *shudders*. You aren’t meant to use it whilst asleep at night. I also have POTS and it’s easy to see when I stand up. It can be used to produce documents you can show your dr. It’s made me understand how I am. And how to help myself more. So another thing was we went to see Bill Bailey, I didn’t wear headphones for the first half, but did for the second and I could see in the graph how that helped me. It is a constant heart rate monitor (things like Garmin only take it every few seconds and people have found that very helpful.) That’s most of it I think. Can you think of anything else you’d like to know?
I can't think of anything else at the moment. This is so helpful, thank you for sharing!
💛💛💛