MOBILITY AIDS AND ME/CFS - YOUR QUESTIONS ANSWERED! WHEELCHAIRS & POWERCHAIRS WITH CHRONIC ILLNESS
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- čas přidán 28. 08. 2022
- When I was a teenager, I acquired a debilitating chronic illness called ME. I've been quite unwell with it for quite a long time, but over the last few years I've experienced significant improvements. My life as it is today is a million miles away from what it once was, and I really think a big part of that progress has come from using mobility aids. In 2015 I purchased a cheap and cheerful transit wheelchair to help me start leaving the house again. A year later, I was granted an NHS wheelchair in a similar model. Fast forward to 2018 and I made the decision to invest in an electric wheelchair, the Eden Comet from Eden Mobility. It’s definitely not a faultless chair and my experiences definitely haven't come without difficulties, but I can confidently say that embracing mobility aids in all shapes and forms has changed my life for the better.
I know it can be tricky to find information and resources, all the more so when you're thinking about chronic illness and mobility aids, and I also know that the term 'mobility aids' includes far more things than just walking aids alone, but I put a call out for wheelchair and power chair related questions on Instagram. In this video we cover how to choose the best aids, things to look for and avoid, the sensory experience of using a wheelchair with ME/CFS, managing storage and batteries alongside fatigue, tips for travel and must-have accessories, dealing with stigma and ableism, and so much more.
Please bear in mind that I'm not a medical professional nor a specialist and I'm talking purely from my own lived experiences, but I really hope you find this video helpful!
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MENTIONED:
Using A Wheelchair Has Helped Me To Walk: www.lifeofpippa.co.uk/2021/09...
Aids And Equipment For Managing Fatigue: www.lifeofpippa.co.uk/2019/05...
Power-Chairs Aren't Just For Elderly People (Mobility Aid Lookbook!): www.lifeofpippa.co.uk/2018/06...
Mobility Scooter Or PowerChair - Which Is Right For You? www.careco.co.uk/blog/mobilit...
Becoming A Powerchair User (FAQs): www.lifeofpippa.co.uk/2019/10...
NHS Wheelchair Services: www.nhs.uk/conditions/social-...
Eden Comet Power-Chair: www.eden-mobility.co.uk/eden-...
Access Your Life (Equipment Reviews): www.accessyourlife.co.uk/
Motability Powered Wheelchair Info: www.motability.co.uk/whats-av...
ShopMobility (Hire Mobility Aids): www.shopmobilityuk.org/we-hav...
Sunflower Lanyard Scheme: hiddendisabilitiesstore.com/
[AD - Affiliate] BundleBean Wheelchair Cosy (use code 'lifeofpippa' for 10% off!): bundlebean.com/?ref=lifeofpippa
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SHOP MY BOOKS AND EBOOKS: tinyurl.com/ybn7a832
MY TEDx TALK: www.youtube.com/watch?v=7j7JR....
BLOG: www.lifeofpippa.co.uk
CONTACT: lifeofpippablog@gmail.com
FACEBOOK: tinyurl.com/y8mgnb9a
TWITTER: tinyurl.com/yb46swvj
INSTAGRAM: tinyurl.com/ydxvl97z
GOODREADS: tinyurl.com/y8npna28
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My name is Pippa Stacey and I’m a disabled writer, presenter, and communications consultant based in York. I enjoy theatre, books, and fundraising, and can most often be found wearing some form of pyjamas and drinking all the tea.
I acquired my chronic illness as a young adult and struggle daily with the challenges of living my best life alongside managing a debilitating health condition. However, I’ve finally learned that I don’t have to ‘overcome’ or ‘defy’ my illness in order to be successful, and there’s truly nobody’s path to follow but your own.
You can find out more by visiting www.lifeofpippa.co.uk, and subscribe to see videos about working, travelling, and learning to make the most of life alongside my chronic illness. Thank you so much for being here!
Links for everything mentioned are in the description box! I originally pinned them in a comment here but that made them behave very strangely, so just click 'show more' in the description above and you'll find them in there. Thanks so much for watching!
Hello Pippa. I'm 73, have Parkinson's disease. In my case I suffer with rigidity. I found this video extremely helpful and also humbling! I will never again complain about my condition! Its done me the world of good just listening to you - your lovely sensible nature does you credit! I wish you all you could wish yourself. If you were my granddaughter I would be very proud of you! So bless you from this granma!
I’m still watching the video but omg this is so relatable. Learning the term post-exertional malaise is so handy. It describes perfectly what happens to me! Even with little to “moderate” physical activity my body can become exhausted to the point where I am feverish, head pounding and barely able to see straight on the verge of passing out.
This popped up in my YT suggestions & I'm so glad I watched it. You have a beautiful spirit. I didn't know that the sunflower was a symbol for hidden disabilities! ❤ In fact when I created this account, I didn't know yet that I had a hidden disability. I was unwell already, but I hadn't received my ME diagnosis yet. I'm happy to see you are still posting content & I hope you see this comment & are encouraged.
Thoughts from my own experience having ME/CFS and using mobility aids: Personally I have very varied days. On a good day I can do a little walking. On my worst days I can't get out of bed. I've been using a few different mobility aids for a few years now and they all have their merits and drawbacks.
I use a crutch to help with balance. As in I carry it and sometimes lean on it if I need to. I've used a walker/roller for similar reasons, with the added bonus of being able to sit down and take a break anywhere. Then for the last couple of years I've been using wheelchairs a lot more, because it just allows me to participate so much more without completely "crashing". On average I'd say I could last at least 10x longer in a wheelchair compared to using the walker.
I've been using manual wheelchairs up until this week when I finally got a powerchair. I find that even rolling myself in a manual chair is less taxing than walking. It's also slower. But it works well for participating in a shopping trip or something, especially if I'm not alone and someone can push me a bit. That being said, getting my power chair this week, I've managed to go for a "walk" for the first time in over a decade, and I'm very optimistic about the future and the freedom this is gonna give me to participate in things like concerts, football games etc. that I haven't been able to do nearly as much as I'd like over the last decade.
I remember the first time I encountered someone on a bus who had a powerchair that had a USB port. I just kinda looked at it, and then, after overcoming the awkwardness, I asked them "is that a USB port?" They said it was and said they use it to charge their phone. I was like "hell yeah! That's so cool!"
No wasted words. Just concise and clear information delivered with grace and humility. Thank you so much for expending so much of your precious energy on us
Wonderful video! 😊💜
I became chronically ill [with suspected ME & diagnosed POTS] a little over a year ago, and just last month I got my first electric wheelchair (after renting manuals, and being loaned a custom lightweight manual chair) 😊💜 I have been in and out of doctors offices trying to find ones that wouldn't gaslight me, and the GP i had when I decided i needed to get a power chair (was housebound at that point) spoke against it, saying it would probably make me worse and he recommended sending me to physical therapy 💀(ableist vibes from that one, he also didn't bother to read any of my notes 😑)
Long story short, I fundraised on my own and bought my chair myself. I now have a Fold&Go Magshock, it's a lightweight folding electric chair. This chair has improved so much in such a short time, and has allowed me to go outside again 🥺
Getting doctors approval and guidance is really important and if you can get it, work towards that! But, if you know your body and can afford to - investing in your own mobility aids when you have no supportive doctors can sometimes be the best thing you can do for your health!
Very well said, and I know there'll be so many people who've faced similar experiences! I'm so glad you've found a chair that makes things better for you!
(And thank you very much for watching and for the kind words!)
We have a mag shock as well! Love it. Just learned there are even lighter versions out there. Not from that brand. 😊
Hi Pippa, thank you for this video. I have ME and was lucky enough to be referred to Wheelchair Services, part of the NHS. They gave me a perfect powerchair. It tilts as I can’t sit upright for long. It has been brilliant for my mental health but I have to be careful as I get very tired using it.
Thank you for sharing this information. Some mobility and seating clinics that work with Occupational Therapists and ATPs can be given a referral from your doctor (even from a virtual PCP appointment) and they can sometimes come to your home to do a wheelchair evaluation. I hope this helps! (LimbTech in NC, SC, TN USA is an example.) I hope more doctors and people learn about ME/CFS. :)
Brilliant timing. I'm starting my wheelchair/Motability journey right now. It's difficult to decide what to do first as I need to try electric wheelchairs before I buy but I can't try them from my house. And I don't have the right car yet!! Finding places with wheelchairs or mobility scooters to try is my first step. Then go to a mobility shop for consultation. Getting the wheelchair depends on being able to get a vehicle too. It's so complicated.
It really is, wishing you all the best with it! I've recently found out that some mobility providers will come to you for a free home visit so that might be an option while you're sorting your car!
I have just moved back into my parents home because I didn't have the energy to make my own food even if it was delivered and was surviving off fruits and muesli bars. Been here a month and my energy has increased due to parents feeding me. But also I have stools in around the house for me to sit down on when I want to do something in a room and a shower chair. My grandma bought herself a new chair and gave me her old one when I explained I was thinking about it. Now my sister and I go to the shops and I'm the bah lady while she pushes and honestly my brain decides that I have to make racecar noises. I've been diagnosed POTs and suspected chronic fatigue, they suspect because we are still trying to figure out the right medications to manage my POTs as to high a dose can increase fatigue were as to low the high heart rate will cause fatigue. It's a balancing act
Thank you so much for this video - so helpful and insightful. I can so relate to all the positives of having a wheelchair since getting an electric one last year. So much more independence and definitely improved my health and energy levels. So glad you brought up the energy drain of using the wheelchair too which most people don’t understand. Wheelchair admin I don’t mind as much but sometimes I find the staring, comments and actual steering and extra thought of chair so tiring I just walk! Definitely would not give up my chair though, it has changed my life for the better.
Thank you so much for watching and for sharing Mina! I completely agree, sometimes it's the things that you'd think would be the least energy-consuming that drain you the most!
A lot of mobility shops will do free home visits/assessments. This is buying not NHS but with PIP money but they did motability too. I emailed with a couple chairs I liked and features I needed. They arranged to come a few weeks later to my flat (I'm in Wakefield think the actual shop is in Sheffield?). It was helpful because travel would've been impossible. But also meant I could check it fit in my lift/flat and I could open all the doors and gates from it. Trial it on slopes etc. So would recommend even if you could go to shop for that reason. And it was pretty relaxed and plenty of time to measure and ask all the questions 1:1
Oh that's brilliant to hear and good to know, thank you so much Verity! 💜
@@LifeOfPippa hope your okay .
Thank you so much for educating about (physical) disability!
I want to say ive only just come across your channel and im so glad that im not alone im 31 and have had me/ cfs and fibromyalgia and also Trochlear dysplasia (granding of the knee joint) and other mental health issues including autism and adhd i have felt like though i do need a wheelchair to get around more nowadays and i feel that at my age i should be running around etc but when i cant i really need my wheelchair people look at me and think she doesnt need to be in that where as my father in law is 60 and had a hip op over 20 yrs ago and needs a wheelchair they dont look at him the same
I can really relate to feeling like you're at a point of life where you should be running around and doing all the things. It can be so hard not to compare ourselves with other people! I'm glad you know you're not alone, sending only good wishes your way xx
@@LifeOfPippa thank you keep your spirits up high and continue to do your CZcams channel 😊
I have chronic fatigue and copd and use a mobility scooter otherwise I would not be able to go out or be too tired.I am now in my sixties
Thank you Pippa! Super useful video. I've probably had undiagnosed mild me/cfs for a year or more, but I am finally recognizing it and getting a diagnosis as I just became "moderate" about a month ago. I'll probably wait a little to see where my condition "stabilizes" before thinking about power chairs, but these stories and considerations are helpful to keep in mind, as I plan to buy a rollator with seat and/or cheap manual wheelchair very soon :)
Thank you.great information
This was incredibly helpful. Thank you! I am currently looking into getting a powerchair, hopefully via wheelchair services, all your tips are really handy! Fab video. X
I'm so glad it was helpful, thank you Rebeccah!
Really informative and helpful. Thanks for sharing.
Great video. Right to the end x
Thank you so much for watching! 🥰
Thank you Pippa! I did read your earlier blog a year ago, got a rollator but now seriously thinking about a power chair or mobility scooter…it’s hard to admit one might need it but you’re right and a wonderful example! X
Thank you so much Jennifer - if you do decide to go for it, I hope your experience is a positive one too! 💜
This is really helpful. I know I need something more substantial than the stick I currently have because I have been effectively housebound since 2019 (when my ME became more severe). I know that the world could be opened back up to me if I had the right tools, and believe me I am desperate to get out.
Everything crossed you find the aids that best work for you!
I watched to the end as well. I used a lot of AIDS tools and I have autism and I used a four Wheels walker and I maule wheelchair as well.
There was so much useful information in this video - thank you! I'm a manual wheelchair user looking into powered options at the minute and there's so much to consider - videos like this one make it much easier!
I'm so glad to hear that, thank you Beth! All the best with your search!
Such a helpful video! I'm needing to upgrade my power chair to a mobility scooter ready for the school run next September and this has reminded me of the impact these aids have on us. Thankyou for making this! ❤️
Thank you for watching Claire, and best of luck in your scooter search!
Thanks so much for your wonderful video I watched it all and I'm about to change from my rotator to a wheelchair
Thanks so much for watching Christoph, hope the changeover goes well!
@@LifeOfPippa Hi thanks again, in your opinion, I am aware that very soon I'm going to need a wheelchair for out and about, would you get say a ,£200 off the internet one or save lots and have a custom made one built just for me, thanks so much
You are teaching me so much pippa. I’ve had to come to terms with using a wheelchair if I want to contemplate trying to go out on small trips. Your videos have helped me so much. I really identify with your life’s experiences with chronic illness. I love the idea of an electric chair. I’ve a mobility scooter but that’s quite big . Great for outside but for holidays and shops a power chair is looking more attractive. Thankyou again Pippa xxx
Thank you so much for watching and for the kind words Lisa, here's to plenty of lovely, accessible adventures ahead!
Hi great video! I use a rollator or my eagle hd power chair. I can’t speak for everyone’s experience, but I bought my power chair used on marketplace. I couldn’t try things on in person, so here’s what worked for me: knowing alllll the dimensions - specifically bc I’m plus size. I needed to know if my partner could lift it, etc. I watched countless videos and narrowed my choices down to 5. And then I hunted on reselling places for those top 5. When the eagle came up, I took my time to ask a million questions, and I did try in person before buying. Hope this helps.
Great advice, thank you so much for sharing!
I've only just stumbled upon your channel and this video is full of so much wonderful information. Full disclosure, I don't have ME, but I do have another severely energy limiting condition. My situation is quite a bit different - I'm in between living situations and am very car dependent in my current home. It truly wouldn't be possible to move a powerchair in and out of my vehicle. I have a lightweight collapsible chair (soon to upgrade which I'm very excited for) with a power add on which I found far easier to manage as far as the wheelchair admin goes. It also had the side benefit of allowing me to manually push myself short distances when I could and slowly build up my endurance without needing to drain myself to do so. I'm able to go far further for longer and while some of that is due to adjustments, some of it is due to the ability to actually just get out within my abilities. When I was initially assessed by my physio team, I was told my walking speed and ability would make me a danger in the community and I'd need to build up more to go out. I deconditioned a lot during that period, rather than being able to build up. It was all I could do to go to physio and the rest of my days between sessions were sleep.
Thank you so much for the kind words and for sharing your experiences! I'm hearing a lot of positive things about power add-ons which is definitely giving food for thought...
How about having a friend or family member who knows you well to try out mobility aids? Someone who knows your challenges, needs and preferences. I'd say that would give a better image than only listening to the sellers speech. You can tell them to look for specific things and have them compare the different options. If you have the energy, you can even join them via phone or video call. 7:26
I believe also there are sellers that could come to you. Don't know of anyone, but it's worth asking your local shop.
Omg..... this is so cool. I have CFS, and i dont want to be tired anymore.... i get SO TIRED. I'm literally physically winded.... even taking a shower just makes me so tired
this may sound crazy....but when i take antivirals...
I feel so much better. I hope that helps....thank you so much ❤
Oh my goodness, you just answered all my questions about mobility aids!!! I just found your channel today! Yesterday I was talking with my family about mobility aids, and how it would help me go out in public more. (I usually only go out shopping every few months because it’s so exhausting) As a young person, I am extremely self conscious about my moderate/sometimes severe CFS. I already have to wear sunglasses in stores because of the awful lights. I don’t want any more attention. But just recently,it has been something I have been thinking about.I was wondering if you ever get motion sick from the power chairs? I get terrible nausea. Like you, I don’t have the strength to wheel myself around. I worry about getting dirty looks and others questioning my illness.😟
I was also wondering if it takes a lot of thought when using a powered wheel chair? I have terrible brain fog, and struggle with making sense of my surroundings especially out in public,with the overstimulation. I don’t want to run into things!😂
That's a really good question! It depends on the day to be honest, it helps a lot on the physical side but if I'm having a bad sensory day or my brain feels extra prickly and sensitive, I won't leave the house at all. Cognitively it does take a bit of extra effort to navigate things, especially in busier areas, but all things considered I got used to it and found it much easier than I expected to at the beginning!
Ciaooo spero che i tuoi desideri si possano esaudire alcuni nn so tutti ti vedo positiva sei giovane anche se ci saranno momenti duri però dalla tua presenza ti vedo forte spererei di si se a volte è no è normale io sono con tutti voi so cosa vuol dire ti auguro tante belle cose sicuramente farai sempre di più belle esperienze ora mi dispiace ma ti saluto e ti auguro tante belle cose x il futuro migliore Davide 🖖🤩
What made you choose an electric wheelchair over a mobility scooter? I have a scooter but I’m wondering if an electric wheelchair would be better or not sometimes.
Sorry just watched until the end and realised you have a post on the difference between mobility scooter vs wheelchair
Here you go! www.careco.co.uk/blog/mobility-scooter-or-power-chair-which-is-right-for-you/
Yes please how do I answer people who ask what’s wrong with you? Sometimes I don’t mind explaining but if it’s someone whose being nosey or who I know is not very gracious with understanding I find it hard to know what to say without being rude. Any suggestions?
"I appreciate that you care, but I don't discuss my medical history with strangers." A warm nod and wheel away if possible! You've assumed the best of them and been very polite, and so they can't really argue with that.
This response is brilliant, thank you for sharing!
You need a weelchair because of me/cfs?
And autonomic dysfunction, yes!
@@LifeOfPippa oh no! Did you ever made a nerve and muscle test at neurologist? EMG/ ENG
Rubbing the nose of a wheelchair user who does not want to be touched is a great way to get bit.
I would bite. Hard.
What a fantastic video! So full of helpful advice. You may have made this a year ago but I’d like to say a big “thank you” from a newbie to my own wheelchair 👩🦽👍
Thank you so much for the kind words, so glad it was helpful!