I'm so sorry it's all so difficult. I have just enough experience with all of it (overdoing and its aftermath , frustration, jealousy, guilt, internalized ableism, pain management classes, clueless "help" from others, people who just don't get it) to empathize deeply. I hope you can choose whatever will give you the most of the life you want to live. It is so short. We all deserve accommodations for our needs.
It was so obvious that the well-meaning facilitators had no personal experience with chronic pain. Yes, gaslighting is exactly what it felt like. I made myself go to all 8 sessions, once a week for two months. Ugh is right!
Mine expelled me from the course a) because I used descriptive language to describe the pain (I actually was describing in fairly textbook language (without knowing it) the pain of severe vitamin D deficiency.) which they missed and ridiculed me about: b) I missed a session they didn’t tell me about - the first session was to see if I could do the course, which they told me they would let me know about, and then didn’t. Ugh, ugh, and triple ugh.
Oh Tamsin, I really relate to this, a lot. In fact you have ''stolen'' quite a lot of what I was going to write in my post today... (It''s ok, I forgive you!! ;)) For what it is worth, I think you should go for it with the power chair, you know you need it, and it will really impact your life for good, so sod anyone that tells you otherwise - including that damn ableist inside voice of yours!!! I am in the same boat at the moment, having used a mobility scooter a few weeks ago for a festival, I realised how much less energy it takes up compared to the stick, or even my rollator (which I HATE with a passion, but it helps, a bit). It is really shitty that they cost so much though, it really is the only thing holding me back from looking into them - I haven't even tried to look for one because I know, like you, I will find 'the ideal one' and not be able to afford it!! This shitty illness is bad enough without wasting mental exertion trying to work out what mobility aids we can afford - we deserve them as much as the next person, so what we still have our limbs, we still can't use them properly!!! Anyway, thanks for sharing, I am thankful for you, and others on here for being honest about the realities of chronic illness which we all live with, you've got this!!
Thanks Lisa. Please write your piece as well, including all my stolen bits. It’s still your story too.
Maybe we can conserve the energy, I’m happy to share my findings in all sorts of scooter, powercahir, all terrain, off road etc. and have had some advice on Facebook groups. It so incredibly shitty as well that I can get help because I don’t use one inside (yet).
Could you not just tell them you use it indoors, in order to get the help? (I know thats not truly honest, but honestly the lengths we have to go to just to prove our disability sometimes is just dehumanising and I am over it!!) Sharing findings with one another to conserve energy sounds great, I am thankful for the few facebook groups I am in for ME/CFS - we are a supportive bunch!! And yes, I shall share later!! :)
I struggle to tell a lie, I’m awful. I blush, stammer, and turn my face away. When we tried for the manual wheelchair the doorways were too small so couldn’t have had one anyway, and that meant I could get help. I couldn’t move house, I couldn’t alter the doorways as it was MOD rented accommodation. I might see if I can talk to my drs about it but I hate going there even though they seem quite nice at this one. And of course they won’t pay for the expensive one for rambling.
Fair enough, yeah I get that, well either way, I hope you can manage to sort something - but definitely go for the power chair, whichever way is best for you!! :)
I live in a city and was able to hire a mobility scooter after I injured my leg and couldn’t walk. It was freedom with a capital F! At the time (2107) it was AUD90 per month, so around £45? Even a standard behemoth was a bit unstable on steep cambers so I agree with you about the small lightweight job. If it didn’t fit into shops, I left it outside. Most of my local shop keepers were happy to carry my groceries out to me, from the till to the scooter. Sure, I was often invisible to ‘normals’ but I felt like I was a super hero doing my bit for Social Inclusion For All. Would you be able to hire different devices to try? I would have been able to ‘rent to buy’ the scooter if needed, and that would have helped too.
There is one scheme that hires that I’ve found, but they are around £300 a week for what I’m looking at and the choice is extremely limited. I wouldn’t dare leave it outside the shops round here either. It’s a fab idea though. I’ve got a couple coming out today for a test drive on the moor, so we shall see.
I can relate to so so much of this (from overdoing it to look "normal" to being scared of getting or needing a mobility aid). Thank you for sharing your experience and feelings so openly. It helps so much to know we're not alone sometimes.
So identify with this, currently weighing up the options for a new set of wheels to add some power to my existing ones (Alinker, rollator, walking sticks) and it’s so hard!! 💛
I don't have any wisdom to offer, only hugs. I get that it is a big one-time purchase, but it will give you so much. There was an essay by Serena Menken (Evidence of Grace) about taking a family vacation with her daughter who needs walking assistance after a few minutes (she has POTS and Hypermobility Spectrum Disorder). I'm linking it here for you in case it helps: https://serenamenken.substack.com/p/when-health-takes-a-holiday.
It was very moving and informative to read your post and then Lisa’s in the same day. So much good information and striking similarities. You’ve got me thinking about other invisible infirmities that we try to brush off. Like, my husband is recovering from covid. It’s hit him harder because he’s a middle-aged guy, but also because most illnesses go straight to his lungs. Thank God he’s getting better, but I see him trying to brush it off; not out of arrogance or pride, but because I believe we were all taught to “walk it off” and “be strong” and all that, and sometimes it’s just NOT possible.
That is tough, if you can get him to stop and rest it out rather than tough it out. The thing with ME and Long COVID is that you can make it so much worse by trying to push through, and it can make recovery time so much longer, or sometimes never. Rest, rest, rest. Pace, pace, pace. If it takes 6 months it takes 6 months. I’m as bad as I am for not allowing myself to rest after my 2 big infections. Please make him take care of himself.
Thank you for saying that. I’m working on it. He had a huge work thing starting this week that has been moved to a later date, and I’m breathing a sigh of relief. It will make this week much less stressful.
Oh, this is SO tough - I can't begin to know what to say...I am reminded of the words of a lovely chaplain I once knew, who turned up on the doorstep of a couple who had just lost a baby, with the immortal line:
"there are no words, so here I am, not saying them..." and open arms
Urg the "are you not better yet?".. my mum has a physical disability and I hear that question all the time. Sometimes I even get it on her behalf!
This was such a lovely article to read, though. I feel your points echoed in the conversations I've had with my mum. You have to remember that the world and our society isn't built for disabled people, so do whatever will help you the most. There's absolutely no shame in that.
Thank you Lucy. It’s so galling always being asked if I’m n enter yet, or being given suggestions’ as to how to get better. Yoga is a constant, as well as just ‘trying not to be’? 🤷🏼♀️ especially from strangers: people need to educate themselves.
I'm so sorry it's all so difficult. I have just enough experience with all of it (overdoing and its aftermath , frustration, jealousy, guilt, internalized ableism, pain management classes, clueless "help" from others, people who just don't get it) to empathize deeply. I hope you can choose whatever will give you the most of the life you want to live. It is so short. We all deserve accommodations for our needs.
Thank you Rita. Ug pain management classes, you just reminded me of more gaslighting.
It was so obvious that the well-meaning facilitators had no personal experience with chronic pain. Yes, gaslighting is exactly what it felt like. I made myself go to all 8 sessions, once a week for two months. Ugh is right!
Mine expelled me from the course a) because I used descriptive language to describe the pain (I actually was describing in fairly textbook language (without knowing it) the pain of severe vitamin D deficiency.) which they missed and ridiculed me about: b) I missed a session they didn’t tell me about - the first session was to see if I could do the course, which they told me they would let me know about, and then didn’t. Ugh, ugh, and triple ugh.
I'm so sorry. That sounds terrible.
Oh Tamsin, I really relate to this, a lot. In fact you have ''stolen'' quite a lot of what I was going to write in my post today... (It''s ok, I forgive you!! ;)) For what it is worth, I think you should go for it with the power chair, you know you need it, and it will really impact your life for good, so sod anyone that tells you otherwise - including that damn ableist inside voice of yours!!! I am in the same boat at the moment, having used a mobility scooter a few weeks ago for a festival, I realised how much less energy it takes up compared to the stick, or even my rollator (which I HATE with a passion, but it helps, a bit). It is really shitty that they cost so much though, it really is the only thing holding me back from looking into them - I haven't even tried to look for one because I know, like you, I will find 'the ideal one' and not be able to afford it!! This shitty illness is bad enough without wasting mental exertion trying to work out what mobility aids we can afford - we deserve them as much as the next person, so what we still have our limbs, we still can't use them properly!!! Anyway, thanks for sharing, I am thankful for you, and others on here for being honest about the realities of chronic illness which we all live with, you've got this!!
Thanks Lisa. Please write your piece as well, including all my stolen bits. It’s still your story too.
Maybe we can conserve the energy, I’m happy to share my findings in all sorts of scooter, powercahir, all terrain, off road etc. and have had some advice on Facebook groups. It so incredibly shitty as well that I can get help because I don’t use one inside (yet).
Could you not just tell them you use it indoors, in order to get the help? (I know thats not truly honest, but honestly the lengths we have to go to just to prove our disability sometimes is just dehumanising and I am over it!!) Sharing findings with one another to conserve energy sounds great, I am thankful for the few facebook groups I am in for ME/CFS - we are a supportive bunch!! And yes, I shall share later!! :)
I struggle to tell a lie, I’m awful. I blush, stammer, and turn my face away. When we tried for the manual wheelchair the doorways were too small so couldn’t have had one anyway, and that meant I could get help. I couldn’t move house, I couldn’t alter the doorways as it was MOD rented accommodation. I might see if I can talk to my drs about it but I hate going there even though they seem quite nice at this one. And of course they won’t pay for the expensive one for rambling.
Fair enough, yeah I get that, well either way, I hope you can manage to sort something - but definitely go for the power chair, whichever way is best for you!! :)
I live in a city and was able to hire a mobility scooter after I injured my leg and couldn’t walk. It was freedom with a capital F! At the time (2107) it was AUD90 per month, so around £45? Even a standard behemoth was a bit unstable on steep cambers so I agree with you about the small lightweight job. If it didn’t fit into shops, I left it outside. Most of my local shop keepers were happy to carry my groceries out to me, from the till to the scooter. Sure, I was often invisible to ‘normals’ but I felt like I was a super hero doing my bit for Social Inclusion For All. Would you be able to hire different devices to try? I would have been able to ‘rent to buy’ the scooter if needed, and that would have helped too.
There is one scheme that hires that I’ve found, but they are around £300 a week for what I’m looking at and the choice is extremely limited. I wouldn’t dare leave it outside the shops round here either. It’s a fab idea though. I’ve got a couple coming out today for a test drive on the moor, so we shall see.
Oh my! That is prohibitive. Wishing you all luck with the test drive 🤞🏻❤️🩹
This post https://open.substack.com/pub/teriadams/p/walking-is-overrated?r=1trc68&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
Was inspired by your post here.
Wise words there Teri. Wise words.
I can relate to so so much of this (from overdoing it to look "normal" to being scared of getting or needing a mobility aid). Thank you for sharing your experience and feelings so openly. It helps so much to know we're not alone sometimes.
Thank you for reading. It’s hard to be vulnerable on the internet, but here I’ve only had good responses so far, and that’s heartening.
It really is! So glad you’ve only had good responses so far though.
So identify with this, currently weighing up the options for a new set of wheels to add some power to my existing ones (Alinker, rollator, walking sticks) and it’s so hard!! 💛
💗 it’s not easy is it? It makes us look so hard inside of ourselves and face what we don’t want to accept.
I don't have any wisdom to offer, only hugs. I get that it is a big one-time purchase, but it will give you so much. There was an essay by Serena Menken (Evidence of Grace) about taking a family vacation with her daughter who needs walking assistance after a few minutes (she has POTS and Hypermobility Spectrum Disorder). I'm linking it here for you in case it helps: https://serenamenken.substack.com/p/when-health-takes-a-holiday.
I also have POTS - a very interesting article
It was very moving and informative to read your post and then Lisa’s in the same day. So much good information and striking similarities. You’ve got me thinking about other invisible infirmities that we try to brush off. Like, my husband is recovering from covid. It’s hit him harder because he’s a middle-aged guy, but also because most illnesses go straight to his lungs. Thank God he’s getting better, but I see him trying to brush it off; not out of arrogance or pride, but because I believe we were all taught to “walk it off” and “be strong” and all that, and sometimes it’s just NOT possible.
That is tough, if you can get him to stop and rest it out rather than tough it out. The thing with ME and Long COVID is that you can make it so much worse by trying to push through, and it can make recovery time so much longer, or sometimes never. Rest, rest, rest. Pace, pace, pace. If it takes 6 months it takes 6 months. I’m as bad as I am for not allowing myself to rest after my 2 big infections. Please make him take care of himself.
Thank you for saying that. I’m working on it. He had a huge work thing starting this week that has been moved to a later date, and I’m breathing a sigh of relief. It will make this week much less stressful.
Oh, this is SO tough - I can't begin to know what to say...I am reminded of the words of a lovely chaplain I once knew, who turned up on the doorstep of a couple who had just lost a baby, with the immortal line:
"there are no words, so here I am, not saying them..." and open arms
🫂
What a lovely chaplain. And thank you.
He was fab - wrote a book called 'the motorcycle hearse...' . One of the good religious sort 🙄
I have borrowed and used that line many times.
Urg the "are you not better yet?".. my mum has a physical disability and I hear that question all the time. Sometimes I even get it on her behalf!
This was such a lovely article to read, though. I feel your points echoed in the conversations I've had with my mum. You have to remember that the world and our society isn't built for disabled people, so do whatever will help you the most. There's absolutely no shame in that.
Thank you Lucy. It’s so galling always being asked if I’m n enter yet, or being given suggestions’ as to how to get better. Yoga is a constant, as well as just ‘trying not to be’? 🤷🏼♀️ especially from strangers: people need to educate themselves.