Mobility Aids for Chronic Pain & Fatigue Q & A

My most requested video has been a Q&A all about my mobility aids which I use to help me with my Chronic pain & Fatigue caused by EDS (Hypermobile Ehlers Danlos Syndrome) and POTS (POstural orthostatic Tachycardia Syndrome) My wonderful followers over on Instagram gave me some amazing questions and I've tried to cover them all in this video. They cover everything from when should I start using one and what aid should I start with to my journey with using a mobility aid. Plus how to have confidence using mobility aids and how I deal with judgement. And so much more! I hope you find it helpful please drop me a comment if you have further questions or want me to clarify anything! Also use the chapters below to find the answers most helpful for you. Spoons & Love!
Chapters:
00:00-01:03 Introduction
01:04-04:09 When to start using a mobility aid
04:09-08:50 Feeling confident with a mobility aid
08:50-12:20 How to deal with judgemental looks, comments and questions when using mobility aids
12:20-13:57 My mobility aid journey
13:58-16:08 Why I find mobility aids helpful
16:09-17:04 Do mobility aids help with chronic fatigue
17:05-17:52 Do mobility aids help POTS symptoms?
17:53-20:42 What are the best shoulder supports
20:43-22:09 How much does how you look impact how you feel with a chronic illness
22:10-24:11 Do you use a mobility aid everyday?
24:12-26:05 How do I choose the most comfortable walking stick handle?
26:06-28:43 were you shocked by how expensive mobility aids are?
28:44-30:48 were you embarrassed to start using a mobility aid?
30:49-31:51 which mobility aid should I start with?
31:52-32:37 What should I look for in a mobility aid?
32:38-34:28 How to get the correct height walking stick (neowalks)
34:29-36:05 Initial thoughts on Rollz Motion Walker
36:06-36:56 final thoughts
Join this channel to get access to perks:
/ @chronicallyjenni
I also have a vlog called Chronic Illness Weekly which is, you guessed it, a weekly vlog showing you my life with Chronic Illness. I share my experiences with Ehlers Danlos Syndrome ( EDS ), Postural Orthostatic Tachycardia Syndrome ( POTS ) and Chronic Migraine. I fight chronic pain and fatigue and many other symptoms on a daily basis but I try not to let it stop me.
If you liked this video please subscribe to my channel :)
You can support my content by:
Checking out my merch at teespring.com/stores/chronica...
Buying me a virtual Coffee at www.buymeacoffee.com/chronicj...
You can also get a membership for extra Chronically Jenni content
Taking a free trial of audible audiobookswww.amazon.co.uk/Audible-Memb...
Heading to my Amazon Store & purchasing from my POTS & EDS survival kits -
www.amazon.co.uk/shop/chronic...
You can also find me on other social media:
Instagram: / chronicallyjenni
Facebook: / chronicallyjenni
Twitter: / jennipettican
My Support Group: / 785786465114178
Email: [e-mail]
Blog: www.chronicallyjenni.com

[@sarabartel4285]

I'd like to personalize some of my aids and braces. I feel like when you have the standard issue aids, people assume it's an injury, but a custom item indicates that it's a long-term necessity and people won't question your condition.

[@sarahwalters8454]

I love this take on mobility aids

[@ChronicallyJenni]

Oh I've had people still think many of my mobility aids were temporary even when they are pretty & personalised but sensible people should think the way you've just described yes! For me personalising them, and naming them, made them feel so much more me and made me feel better about using them in the beginning for sure! Spoons & Love x

[@VintageRayne]

@@ChronicallyJenni And that’s it right there. “Sensible people”. And they call us crazy. At least we don’t go around judging what we don’t know. 🤷🏼‍♀️

[@rachiesherlock3739]

People always question my splints like wtf have I done to my hands. But I haven't done anything 🤦🤦 I have rheumatoid arthritis and now I need support walking I can barely stand up xx some woman tutted at me the other day because I was waiting for the lift and she assumed I should be running up the stairs

[@azariasthompson4812]

I used this video to show my mom how much help a mobility aid would be for me. I'm 15 and have Chronic Migraines (Almost 20 a month) that lead to vertigo and joint pain due to medications. She was very against it but now I see her watching more of your videos and has even offered to help me decorate it!

[@Voldycat]

My main issue is my family, my friends are totally fine with the idea of me using one but its important to me that my family are understanding and they're currently just not. My mum has told me she doesn't want me to on multiple occasions and my brother has even made a couple of jokes about it, one that particularly hurt was a joke about how I'm always ill and there's always something wrong and 'oh I totally bet you would get a stick I bet you would' but said with such spite like that was such an awful thing and that I'm just doing this whole thing for attention and not because I'm in pain everyday lmao. I know they mean well or just don't understand but I'm finding it super hard to get over that at the moment. I'm also struggling with the idea that once get one it's almost like admitting to myself that this is permanent like everything else doesn't feel as drastic as a stick and that's a super scary thing for me. I'm getting there and seeing content like this is defo helping, but I think it's gonna take time.

[@Voldycat]

Thinking about it this feels super similar to when I had to come out to my family and friends, which is a sad thing to think about having to 'come out' as disabled.

[@sarahwalters8454]

I feel this way so similarly. My family and friends are the biggest concern. If, sans covid, we were to be doing our normal activities with cousins and my sister n law, I physically wouldnt be able to do the things we did 2 years ago without the aid of a walker or wheelchair. I know i would be, not just made fun of, but completely ridiculed. I know it isnt my fault having a degenerative disability, but I also know it will just put that much more strain on my relationships using mobility aids to help get through outtings. I know for a fact my sister'n'law wouldnt go places with me if I suddenly showed up with a walker or wheelchair. She would think it is attention seeking amd pathetic amd blame it on my mild weight gain

[@ChronicallyJenni]

Have you tried to sit down and explain to your family exactly why they would be useful and send them links to professionals websites or videos about how they can be helpful? Explained spoon theory or battery theory to them? What is she says about why she doesnt want you using one, can you find evidence to suggest her point is wrong? Brother's are just dicks in general dont listen to them :P I know they can be hurtful. You're at uni at the minute so experiment whilst they aren't around if it works for you and helps and you go back home confident about that fact what can they do? I think we also have to get away from the idea that once you get a mobility aid you must use it forever and all the time. Some days I cannot function without them, they really do help me but when I'm a princess I have to go to work without them. It's something you can pick up and put down as and when it's helpful to you, it is there to aid you with whatever you need aiding with, like my shoulder supports I was talking about still an aid but I use it as and when I need it which is maybe once or twice a month for me, why should a walkign aid be any different when used for pain/fatigue which is so variable? Also your illness is permenant even if you don't want to admit it, there's not getting around that, so you may as well live with it the best you can rather than fighting it, I've learnt that the hard way sometimes for sure. Anyways sorry for the essay, lots of love to you beautiful!

[@ChronicallyJenni]

No not sad at all I literally had to come out in a blog post just before I had surgery. It was a whole year after being really sick and having left uni without telling many people at all. You have to come out because you have to accept it yourself then tell the people you love in the hope for acceptance. It's very similar. Just like being LGBT+, you can't change the fact you are disabled and people have to accept you the way you are. Lots of love x

[@ChronicallyJenni]

@@sarahwalters8454 Sarah this is horrible I'm sorry but unfortunately these people are toxic and I know its worse when they are family but having them in our lives isn't good. If your sibling is more understanding see if they can explain it to their partner in a way she will understand and hopefully not be so damn right rude x

[@beeb6730]

I definitely like having cool looking aids so I can talk with strangers about the coolness of my aid and I can sneak in how much better they've made my life and talk about how much I love my wheelchair rather than the "what's wrong with you" convo over and over again.

[@ChronicallyJenni]

YEESSS!! I love all of this! x

[@Jayman2800]

This is why I zebra printed my forearm crutches!

[@beeb6730]

@@Jayman2800 that's awesome!!

[@eriberry1sm]

I was literally just trying to find advice on mobility aids with EDS. Love your channel. Thank you for raising awareness about hypermobility and EDS.

[@ChronicallyJenni]

So glad I could help! Spoons & Love x

[@fishfish7985]

I dyed my hair and decorated my rollater now I get small cute kids waving at me and asking me questions and it's so cute and I also got to explain invisible disablitys to a tiny kid and that made me really happy

[@kellylyons1038]

Im too scared to make my mobility aids look fun and cute bc i dont want people assuming i'm doing it for fashion (namely the canes--ive had ppl literally say "i like your pimp cane" even tho i only use normal drug store-looking canes 🤨)

[@sarahwalters8454]

I can't wait to see your walker/wheelchair video! I have eds/pots as well. I have been reluctant to get a mobility aid, knowing though that I need one. Unlike most people I have heard talk about this, I'm not nervous about being questioned or stared at in public and would love the opportunity to have open honest conversations with strangers. My concern is how my extended family and friends would view me as faking it and being attention seeking. I have a few close relatives and friends that don't believe there is anything wrong with me because of all the physical activities I used to participate in. If you happen to read this and got this far (lol) my question would be what are your personal experiences with family and friend acceptance? I personally was not diagnosed until last year at 27yrs old.

[@Voldycat]

It's super sad how much I relate to this!

[@sarahwalters8454]

@@Voldycat aww I feel for you amd yet am sadistically so happy someone somewhere out there feels the same way

[@ChronicallyJenni]

Hey Sarah, I'm super excited to show you guys I just really want to get out and use it more first so I can give it the proper review and video it deserves! I'm so sorry this is your experience with your family. I have been very lucky with my family on the whole. Friends that didn't get it left of their own accord but others really wanted to learn and support me. My main bad experience was my ex boyfriend and there were times I used my mobility aids less to appease him not only did this make me really sad and stressed but also put me in a lot more pain and I just wasnt being me. In the end that relationship didn't end too well after 6 years (i talk about it a little more on my blog) but it ending made me realise more about myself and how much my mobility aids help me and how confident i could be with them without him holding me back. As I said in the video I think with closer people its about relying on resources that are out there and sending it to them. I often find the battery theory is a good one to share as it's something everyone can easily comprehend and makes it easy to explain how one day you might be able to do your activities and the next you can't do anything. I know how hard it is when they just don't understand but I really believe you have to do what's best for you in those situations and if people can't or wont understand then they aren't worth it when there are so many people who will love and accept this part of you even if you don't know them yet, I know that was the case with me. Hope that sort of helps! Spoons & Love x

[@sarahwalters8454]

I really appreciate your reply and advice. I can relate as I am currently in an somewhat unhealthy relationship since becoming more ill and being diagnosed. It is an unfortunate situation but I have high hopes that when I move on things will be so much better and that I may be able to move on in life and find a support system that is accepting

[@ChronicallyJenni]

@@sarahwalters8454 My ex could never truly accept it and thought it was something I would recover from and it was really awful, its such a sad situation but remember your worth, because I definitely didn't and stayed in that relationship far too long. That relationship ending let me accept & love myself so much more and know what my real support network was. And meant I was confident and happy when I met my partner now and the level of understanding and support is something I never thought could be out there, but it really is. So much love to you! always a message or email away if you want to chat more/need some support from people who understand x

[@lydiamoss2632]

Perfect timing! Literally just got a cane, and been using a shower chair for a few weeks. Had these questions and didn't know where to go, thanks!

[@ChronicallyJenni]

I'm so glad! If you have any more questions please feel free to drop a comment and I will answer as best as I can x

[@fightmilk77]

This was such an awesome video!! I’m 17 and looking into mobility aids for getting about college with my physio-therapist , and this really helped me come to terms with the idea of needing that extra bit of help. Thank you for doing what you do💓🌙✨

[@ChronicallyJenni]

Thank you so much! I'm so glad I could help! x

[@eggsbenedict4287]

Ik this is late but like, I'm 13 and desperately trying to get an eds diagnosis, my parents are finally understanding and my cane is coming tomorrow, I've been looking into this stuff since I've been 9 and I'm super nervous about school cos I already get enough questions, this just really helped so thank you :)

[@eggsbenedict4287]

Update, I'm homeschooling now because I physically could not go to school

[@mlapointej]

​@@eggsbenedict4287 hang in there🤗

[@misscazb85]

I’ve come to the realisation that I need to get a mobility aid. My balance is so bad and I’m falling so much, getting nervous to go out on my own. I do have a knee brace but I definitely think a mobility aid (stick) would help me!! Deposit my family judgmental comments I need to do this for me! So glad I found this video!! Spoons & Love 🥄🦓💜

[@ChronicallyJenni]

You can do it Caroline! Sending spoons & love your way x

[@lovely__shadow9305]

I'm in a lot of pain in my legs sometimes. Most of the time, I'm fine, as in it doesn't hurt so much. Like it, it's uncomfortable. But some days it is so bad that I can't stand it. Those days, I think about mobility aids. A cane, crutches, a wheelchair. They all seem too much to me when I'm not in pain. I know knee braces help a lot, but I'm worried about my mom and sister. They are rather abilist. Everyone else doesn't care or doesn't say anything.

[@lovely__shadow9305]

My doctors have decided I have fibromyalgia. Although it could be something else. Also, my heart palpitations have now gotten worse, and I have almost passed out many times.so yeah, my mom believes me more. My sister still doesn't believe me.

[@juliabickley3174]

I’ve struggled for so many years but finally decided I have to accept I need mobility aids….ive always thought I needed to be told directly by a nurse, gp, physio, to use one to justify it….but I actually told my physio today I’ve ordered one and her reply shocked me..that it was a great idea and will help me loads

[@Chirpingcherub]

I have joint issues and am thinking of getting one for “just incase” if I’m out in town with friends and won’t have to sit down and rest every 30 mins I feel like an imposter though

[@ChronicallyJenni]

Please dont feel like an imposter! thats a totally valid reason to use one. At the end of the day its an aid and there to give you support as and when you need it however little or often that is x

[@VintageRayne]

I feel like an imposter, too. Doesn’t help that people can’t grasp the concept that I can put it down momentarily, do something, & pick it back up. Sometimes it’s just more time, hassle, & spoons to fight against the aid than to set it down momentarily. I’m not faking. I’m just managing the best I can. 🤷🏼‍♀️

[@dangercrue]

agh i've thought about getting one because i am tired of just sitting on the nasty ground everywhere, when i'm in line, etc i sit down every few minutes and i definitely hate feeling like i'm getting nasty on the floor

[@cryptcryptici8004]

I have severe r.a. and many other disabilitys along with it, my favorite cane has a skull with a top hat on the top, it to me indicated that ,yes I have bone issues...

[@doricoldwell29]

Mobility aids make such a difference for my adult son. It helps him leave the house more often and feeling he can make it without falling or having support when his knees go out. It's a safety thing!! I'm glad hes got options!

[@ChronicallyJenni]

100% agree x

[@Bongwater6920]

I have severe arthritis in legs, wrists and spine, it has gotten worse over the years and I only 21 but I have a long family history of severe arthritis. My aunt has it, my grandad had it, my mum has it and so does my granny. I've had to switch from a cane to crutches but go between depending on how much I'm pain in that day. I feel constantly tired, sore, depressed and ashamed/embarrassed when I use/need my mobility aids. My life has changed so much in the past couple years, I can no longer do the things I love most because of my limited mobility. I might have to move flat again and possibly re-home my cats cause it's more difficult to take care of them and so basic things in my condition and moving again would better cater to my physical/mobility needs. But moving and redecorating all over again really stressed me out, strains my anxiety and my bpd. I'm so worried man. 😅

[@messenger3478]

Thank you for this! My fatigue has lasted for over a year. I'm finally looking into mobility aids. This is a big help!

[@uwubro8911]

Wait I'm also 20! I started using a cane earlier this year but alas I need a walker soon which sucks but it's awesome to see other young using mobility aids

[@kelviannaepperson3677]

I'm 26 now and I've been feeling like I may need a mobility aid because I use walls and counters while at home my knees and upper legs try to support each other but they are hurting more and numb. I've always had back and hip pain. I have spastic diplegia cerebral palsy

[@ChronicallyJenni]

Sounds like it would probably help, I hope you can find whatever is right for you x

[@Marie-du2md]

I'm 17 and I'm looking into mobility aids since I've always had this issue with my hips and with the past few years its gotten so painful to walk and even harder to balance. I've fallen over before with my legs giving out on me especially my left leg and I truly want an aid whether a walking stick or anything similar to help me get around campus and daily life but I struggle with so much guilt thinking I'm over reacting and maybe my problems aren't that bad and I'm exaggerating my pain... I do have a brace/wrap for my hips but it does little to help with the exhaustion/mobility issues...

[@nunyabusiness6450]

If balance is an issue, I'd look at walkers(two wheels or less) which are designed for weight bearing + people who are a fall risk. Falls are really serious, and think of it this way: if you were 60, and you had those symptoms, you'd be prescribed a walker without question. I think the hardest part is accepting that younger people aren't all perfectly able-bodied (I'm 18 myself and struggling) and it's a huge cause of ableism. Hope you've found a mobility aid by now, but if not, definitely check out a walker

[@CarolCreates]

Came across this video. Love your 💕 canes. I’ve purchased a few online BUT, Lord 😱 I’m 55 and I don’t want a “granny stick”. I’ve got black with rhinestones, a flowery rose one. But I want something with more personality. I’ll check out those neo canes 🤗

[@kinglizzy612]

Hello there .... Get a nice wood cane ... Then get a bike light style flash light .... any thing 25 lumins and above and then attach it to the stick were you want to place it .... boom good non granny cane with light

[@CarolCreates]

@@kinglizzy612 😆 I’m actually using bespoke crutches from Cool Crutches. I was gifted a pair. I wasn’t sure at first, but now I tend to grab a crutch more so than my walking stick. And, if I want to move faster I’ll use both. I think it gives me more stability and, for me, it feels more cooler than using a walking stick 😊 Although, the crutches are non-folding so I’d still carry a folding walking stick, if needed.

[@Pieisyummy999]

Thank you so much for this video! I have Crohn’s and type one diabetes (illnesses people typically don’t associate with needing mobility aids) but because my Crohn’s is so severe there are often times I end up unable to walk long or even short distances. This has happened multiple times since I was diagnosed 5 years ago but this past year really struck home for me that a mobility aid is something I should consider. I’ve always been a bit hyper aware of people’s opinions of me when I say I’m sick since I’m often told “you don’t look sick” or “just lose weight” and was scared using a mobility aid on top of that may cause a draining amount of attention. But you are 100% right about needing to think on the reason I need it. Idk if fatigue gets like this for you but when I’m exhausted I end up running a fever, my face and sometimes throat swell and barely I’m able to stand. Since this has happened in public it’s become almost impossible for me to spend more than 4 hours out of the house (when not sitting a majority of the time). It would be amazing to be able to enjoy more time out of the house again but in order to do that safely I’ll need a mobility aid.

[@ferncurtis2437]

Thank you for speaking so frankly and being incredibly encouraging. I’m 37 and started using a stick a couple of years ago. I think you’re amazing…you you’ve inspired me to not be ashamed of my walking aid. If I need to get a wheelchair I’m going to get one when the time is right.

[@syenite]

"were you shocked by how expensive mobility aids are" (*laughs nervously in Disabled in the US*) I was shocked by how inexpensive they are. When I first started looking at them, I asked my doctor to write me a perscription so Medicare (the govt insurance for senior citizens and people with disabilities) would cover it. Despite having POTS, neurogenic orthostatic hypotension, and vestibular disorder caused by CTE, I was denied. When I found a cane that worked for me, I was expecting a $2500 USD price tag. It was ONLY $40 USD. Which is a still TON when your only income is a meager disability allowance. I was prepared to sell my kidney to afford a cane. But in a happy surprise, when I lamented the fact that Medicare wasn't covering it to my service dog trainer and asked how I could add cane fetching to the list of my dogs tasks, she asked the board of the service dog organization to get me one. Will hopefully be getting it this week and am set up with a physio. Thanks so much for this video, it's been super helpful.

[@kinglizzy612]

Welp some are really expensive and some are still a little pricey but like I go for the more affordable options cus there always in a nice shade of wood

[@headbanger1853]

I get around much better with forearm crutches. My physical therapist recommended my rollator, but I prefer to use that when I need to walk a lot. I also own a couple of canes. But my crutches work on all terrains and are perfect when my leg almost gives out. My neuropathy caused by fibromyalgia and pre diabetes gets bad at times.

[@user-hr9vs4dr5k]

I have needed mobility aids since at least 8 months ago due to HSD, IST and CFS, and increased sensitivity in pain due to autism. But I lived all my life trying to hide and not be the centre of attention or be looked at, even friends sometimes, tho I only have very few irl, mostly online. My mother has the old school Asian beliefs which are using any visible aids are embarrassing, and only the "actually disabled" people should be using, and I look like a "normal" person so don't "make myself sick" or "don't be dramatic". I am 20. My symptoms started when I was 15, very mild, then it just suddenly started to get worse when I was 16, then it has been worsening since then, hasn't stopped yet, had a few breaks, but never stopped. I started becoming bed bounded in March 2022, this year, at first I could still move around on my own, just very uncomfortable and rather painful, and then I became more and more bedbounded, I can't get out of the bed 90% of the time, and that 10% is when I have help from my partner, also my carer, which has been with me even before the mild symptoms started. He tried to convince me for years that I shouldn't be embarrassed, and "they can go f*ck themselves if they care". I made my first step at the end of last year by wearing a badge and accepting that I need help. I also got a concessionary bus pass mid-year, and applied for a blue badge at the same time, but didn't get it until recently. I also managed to get LCWRA, I am not eligible for PIP etc. due to residency status. All applications went straight through without complications or hesitations. As my case is, extremely, complicated and all together it is severe, I should get PIP without too much of a problem, I expect quite a bit of hassle tho. And as I very rarely do need to go out on my own to appointments, I am like a walking zombie, barely alert, but enough to not go into a coma haha, but my muscles would start "sleeping" so I would start to wobble a lot when I walk, I have so many bruises and scrapes because of it. So my partner said, that's it, u r getting at least a walking stick. I know we can't afford anything more than that. I have heard neo-walk before in a few medical groups on Reddit. But the time I could spend on social media was reduced significantly, so I forgot about it overtime. I started looking for posts and videos to convince myself that it is ok to not act tough in front of people, using help doesn't mean weakness. I know that it is ok, it is the action that I can't proceed. I looked up neo-walk after this video bc it rings the bell, I understand why so many people recommend it, I thought, this is it!!!!!! If I have to stand out either way, I wanna stand out specially and not negatively. I was thinking of folding ones. Can't find one that I favour(autism makes me extremely picky, it has to give me "the feel", I either go right for it and won't give up until I get it, or I don't try at all), also none of them give me enough reassurance of quality, durability and appearance. They are under £20. This is something I can't go cheap on, bc it's a day-to-day item and it will be very important. Neo-walk is so out of my range, considering I can barely afford food.... But I hope one day I can get it, and that's before everything gets even worse due to the amount of exertion.(It would not have worsened this fast and bad if I did this when I got to the "I need it" stage after the "I should consider" stage. Thank you for sharing your collection.

[@MockingJay702]

I have fibromyalgia and pots and I think even tho ik if I use perhaps a crutch/cane now might help me reduce stress on body, but I think the hard thing is being scared about perception of me, like stares and constant comments. And also the judgment on how I use it some days and some others not. I'm going on a trip alone to disney for the first time since my health issues appeared and worried about constantly having it trying to get on rides and such... do you have any experience with that?

[@emilyvbr1878]

This is so informative! 😊

[@wildflowersar3595]

this is excellent and really helpful - thank you

[@kristinabettenhausen8060]

Thank you Jenni for taking the time to talk about all of this.

[@202cardline]

A great video! Also I'm obsessed with your translucent sticks here, definitely will have to look into those.

[@lisamorgan3787]

Thank you for this awesome video! I have endo and fibromyalgia so have fatigue and pain and am considering trying a mobility aid so this provided me with a perfect start :)

[@Trash_Gremlin.]

I'm considering getting a cane or waking stil for my FND (more specifically my leg pain and occasional weakness) this was SUPER helpful

[@penelopepolinsneemeyer4757]

What a brilliant video! Thanks, Jenni! xxxxxx

[@ChronicallyJenni]

Aww thank you so much Penny! x

[@bevishhh]

Such a helpful video, thank you!

[@ChronicallyJenni]

Glad it was helpful!

[@Diana3229]

Completely off topic but your eyeshadow makeup is absolutely stunning!!

[@gabrielleangelica1977]

Back in the day, a walking stick was a sign of prestige in the U.K. I just have a busted knee from gymnastics! 🤸

[@steven3517]

That's right to show society a more gentile approachable man,also if the man didnt use his cane respectfully correctly a person could take it from him without worry of arrest if he dared.. I have barely used any cane yet should,but I have the coolest cane ever and would not suggest anyone try to take it.. lol

[@Roughdiamondgrl86]

This was super helpful, thank you for taking the time to explain and provide suggestions.

[@ChronicallyJenni]

No problem glad it was helpful!

[@uwubro8911]

I started using a cane for a foot injury and tbh I was so embarrassed about it at first, still kinda am but seeing vids like this helps. Especially now that I'm getting tons of blood tests for joint, muscle pain and fatigue. Like I'm talking if I dont have my cane and my leg cramps up and gives out I fall over. It came out of nowhere it totally sucks.

[@danielacampos4987]

Hi - I refer back to your EDS hacks videos very often. They've helped me so much since my diagnosis. I've gotten to the point where I really need a mobility aid, but I want to feel confident in my stick!! Yours are so adorable, and I was wondering if you'd drop the link. I haven't been able to find anything similar online.

[@fishfish7985]

My first stick was a tada stick that I got and did a bunch of reaserch before and after on what sticks do and stuff and how to use it and then I took it to my physio and they confirmed I was using it correctly I got it because my balance was awful , I got a walker recently because my pain started and I could carry stuff when shopping I recently decorated it I sewed a tube of orange for the back rest made a seat cover and painted it and got a bright orange cup holder

[@Howdybabes]

I’ve been using braces for a long time, but I’ve really been looking into forearm crutches. Just need to work on the confidence!

[@saltydinonuggies1841]

Got my first cane last friday and its already been incredibly helpful. I plan to upgrade to forearm crutches in the future to help with my upper body pain. Id love some stores that sell cute accessories and stuff for mobility aides if anyone has any.

[@t-98]

Etsy might be a good place to look?

[@RhiannonAimee]

At the point I only use walking sticks and my cruthes so far with my EDS. I was 21 when I starting using my walking sticks. 18 for my cruthes. Like you I got bright pink and blue sparkly ones. I haven't started decorating mine but I think might and I think I might start naming them too. I am totally with you with the judgement stuff. I ignore it or pretend that I don't see them.

[@ChronicallyJenni]

Yes definitely decorate them and make sure to show me when you do! I loved decorating my old walker. And let me know what you name them! It's the easier way to deal with it I think x

[@RhiannonAimee]

@@ChronicallyJenni I definitely will show you my sticks when I decorate them. I was actually just watching a few of your other videos when you replied to my comment I am still trying to understand my Heds and POTS so I have be binging all the youtubers I can find with EDS and POTS right now. I got diagnosed with EDS Dec 2019 and POTS November 2020.

[@jacquelinemolloy2977]

My first walking stick I made out of an umbrella.

[@bionicbookworm3928]

This video is perfect timing. I think I’m finally coming to the realization I need a cane for bad days. I’m tired of knocking stuff over trying to hold myself up on a wall 😂 where did you find the pink and red clear cane’s? You’re totally right. I think I need something that matches my personality in order to be comfortable using it in public

[@ChronicallyJenni]

They are from a company called Neowalk which is amazing they make the vast majority of my sticks x Hope you find your perfect match x

[@bionicbookworm3928]

@@ChronicallyJenni thank you!! I’m starting physio soon so I’ll have the chance to speak to a professional about it 🙂

[@annettesuterswiss]

I habe hEDS, and using a northern walking stick which is basically made for sports, is more useful than another stick. Better for wrist, causes no carpal tumnel syndrome, and also better for my shoulder. I got them in a regular outdoorshop in the supermarket, costs about 40€. Wheelchairs, basic models, are paid by health insurance as are walkers.

[@Michelle-qd9gm]

I used to take my kids to school on my powered scooter if you need help with a aid you need it don’t worry about what people think as you get older you care less what people think anyway get what helps you I’ve got all sorts around my home to help me you feel safer if you have the right aids for your disability and it’s great if you want to live independently as well

[@s.e.n5516]

I'm about to turn 18, and for about 1 year I've been experiencing fatigue, dizziness, nausea, brain fog, swollen legs etc... With the heat, it is worse and i can't live a day without laying on the floor with my legs up. I feel like i need a mobility aid but i don't feel valid getting one. And i know it most comes from the fear of judgement you're talking about in this video. But also by the fact that sometimes i don't need it and i feel like in people's brain, if you're not always using it then it's no true... But i'm so scared of falling in public spaces because of dizziness. But also I don't want to "appropriate" idk if it makes sense but I don't want to "stole" it from people who "really" need it. But if it is helping me with walking and staying up then I need it I think. The only way to really know is to try it right ? Well, it was a really long comment but it was kinda liberating for me. Thanks for reading till there. :))

[@heneralantonioluna8725]

When I was fifteen, I collapsed at a store and my mom rushed me to the the hospital, having a heart condition is very painful, a doctor gave me a metal yellow derby cane and said I needed it if I might collapse again. Now I just put my first cane in an umbrella stand within my home office. I now use a wooden cane with a small heart painted on it, it was given by a close friend on Christmas 2017

[@zr9570]

my new d&d character has chronic pain and this was super helpful for building her mobility aids, as was the rest of your channel! thank you for making this!

[@melima_]

Thanks so much! I've been thinking about getting a stick, as I'm having a flare-up, but I doubted if I would really need it, but I've been thinking about it as I get exhausted and my knees will fricking kill me at the end of the day. I'll try it, we'll see if it helps!

[@ChronicallyJenni]

Really hope it helps xx

[@Bekahhhxo]

Hello!! I just got my first neo walk stick and ugh i looove!!! Just wondering where you got the straps for them? Are they also from neo walk or? I cant find anywhere for them :(

[@clairepaul3573]

Can you please link the posture shirt thing I need this looks amazing for work

[@helloIisperson]

Thank you for making this :] I'm 13 & only just realized recently that maybe flopping around and clinging to walls maybe isn't normal- (school exahusted me by just existing there honestly, i really dont want to go back after summer ends-) i feel i need to do more research since I'm not sure but my best guess for whats been going on is that i could have Fatigue issues? (contrubuting also probobly is that i have asthma live in an area commonly hit by smoke in summer & have scar tissue from surgery when i was younger so it streatches & it can be PAINFUL). I think this has been going on off & on for.. about a year? Maybe 7-9 months on the low side- As you can imagine i dont like believing im struggling lol. In the last few days I only just realized that maybe I need help so I'm starting to look into mobility aids (& how to ask my mom if i do end up thinking it would help me)

[@christinerandolph3237]

Me: alright time to do some research as we gear up to draw a character who uses mobility aids. also me: oh dip i could use some of these for my own chronic pain

[@user-jd3pr8bm1p]

What about anti- depressiva? It's good against chronical pain.

[@VintageRayne]

May I inquire where you got your fun sticks & the “wrist straps”, please? I have a leopard print one but I don’t use it as much as I should. The wrist strap on it is awful. I currently live in the town I grew up in so a lot of people know who I am. And that seems to make them think they have the right to question me. I really would feel more comfortable away from home. I’m a lot more open to answering questions when they’re asked out of genuine curiosity & not out of judgmental need for me to justify myself if that makes any sense. Thank you for the lovely video!

[@emilyvbr1878]

I think she got most of her sticks from Neo Walk

[@trinibini9548]

I'd also love to know where those gorgeous wrist straps are from!

[@johnnysdad3855]

Hi. I just came across your video I just got a walker. I feel more relaxed. And walk faster I used to walking stick. But I found I walked very slow and felt I would fall now with my walker I am walking faster. My son don't understand why I got a walker and says its all in my head. What can I say to him to understand why I got a walker. Love ur sticks

[@pamhill4]

Where can we get some of those gorgeous walking sticks please? Nhs is awful and folding ones are a bit too twee and flowery at 18. Thanks

[@emilyvbr1878]

Most of hers are from Neo Walk

[@donnairenephotos]

I'm trying to find a mobility aid to use at music festivals which is one of my passions. It's hard because a lot of festivals get muddy and have uneven terrain. I don't think a cane would work for me because it's my low back and lower body joints that I have a lot of weakness in with prolonged walking and standing, any other ideas?

[@thelegioncollective]

I use a wheeled walker, but I think I can transition to a walking stick now. The problem is buying one.

[@JustMxAsh]

I have problems with my upper body strength but i know I'm probably going to need a walking aid soon... i just don't know if it's the best choice... i don't suppose you'd have any suggestions? please and thank you.

[@kinglizzy612]

So I don't like feeling like my leg is going to give out even though it doesn't it's just it's a little jelly like and feel like it gave out even though it has not even really and I cut my toe really bad and it has healed and is better now but the way I walked with my leg when I had cut my toe it has stopped feeling like it is straining slightly but still it just not really gives up just that feeling of it being jelly at times

[@kinglizzy612]

Yeah and I some times I just take a cane for balance and always never forget if you need it as a improvised weapon it can be don't look at this as bad think of this like extra security

[@abbigailcarr2725]

I just started using a cane and though I frequently switch sides I find it really hurts my wrists and hands as those joints are really affected by my hEDS. Any tips for using a cane for balance and stability with hEDS?

[@ChronicallyJenni]

I find the question mark handle makes a huge difference for my wrists and i have some gloves which have extra grip which really help with my hands. Hope that helps xx

[@CuteKittyKat1987]

Hi Jenni, I was wondering what should I use to decorate my walker aid that looks pretty old and used was thinking a different coloured tape or wrapping paper I’m just not sure would be great to get your opinion on this many thanks. I also Just wanted to say I was born in the 80’s and I was diagnosed with floppy baby syndrome which no turns out to be HEDS but I didn’t get effected badly until I got pregnant and was told my body had a biological imbalance which caused me all the mobility and health problems I have now which I didn’t have until I got Pregnant still trying to process this as I was if you can say it led a normal life before being pregnant and I was told the only reason I have some sort of mobility when this biological imbalance happen is because of my muscle memory not because of actually having the muscles Xx

[@ChronicallyJenni]

Hey so sorry for the late reply I use duck brand duct tape for decorating best thing over washi tape or wrapping paper is that its waterproof! x

[@YOOOOOOOOOOOOOOOOOO_00000]

Hi! Question, were would be the best place to get a possible chronic pain diagnosis?

[@supercharger5727]

Isn’t chronic pain like multiple disorders connected cause they cause pain on a daily/regular basis

[@YOOOOOOOOOOOOOOOOOO_00000]

@@supercharger5727 Yes, thank you, past me didn't know that, but thank you

[@ineedabetterusername4803]

Cannot remember the name of it but i found out my kneecap is too high on my leg so theres nothing keeping it from trying to dislocate i want to get a cane since i cant walk without extreme pain. But im scared about the facility im living at thinking im being dramatic

[@mayyahbhatti4425]

do u need a diagnosis to get a mobility aid? I'm looking into getting one before school starts again and my parents said u do but I don't really trust them on that bc they also thought a walking stick n crutches could do nothing for chronic pain and google isn't being helpful

[@ChronicallyJenni]

It's always helpful to have input from a medical professional to make sure youre using it correctly this could be a doctor, physio or occupational therapist. It depends how your chronic pain affects you but they can be a really useful tool in offering your body support like any supports you might wear. hope thats helpful x

[@aprilnewton_x]

@@ChronicallyJenni I’ve been diagnosed with osgoodschlatters which causes really bad knee pain after sports and can cause me to limp as sometimes it’s very painful to weight bare would it be a good idea for a little colapsable stick for my bag for after pe incase my knee is in severe pain

[@marktyler2396]

only just found your channel found a link through amy lee fisher

[@ChronicallyJenni]

[@PrettyHazelEyedMLS]

When I go out in public, with my mobility aids I don't notice anyone starring at all, and no one has ever said anything rude to me either. So I guess everyone's experiences are different. But even if people did stare I wouldn't care. I live my life for me not anyone else. However I guess the only questionable comments I have gotten have come from my mother. She just doesn't understand and I feel she doesn't like the fact I use a cane and a rollator. I think she prefer that I didn't use them at all. I think to her she looks at it as giving up. But I use them because they're needed. Without them I feel much more worse.

[@lejandro4575]

I am only 18 years old and i need a cane for my arthritis and also i am overweight which gives me a problem maintaining my balance, and i want these neo walking sticks because its too beautiful but it is not available here in the Philippines and also if i buy online its to expensive and i am self-supporting student, i want these sticks because i think if i have these those judgemental people will not judge me why i am using a cane at 18 but its too expensive 1 Dollar is equivalent to 50+pesos here, and i consider people that have these canes so lucky because they can afford and it is available in their country ☹️

[@kinglizzy612]

Yeah it's not even my wight I'm a big guy I mean I'm pretty big and that's not even the issue it's that my right leg felt funny like jelly a few times and I said screw it when this happens I will use my cane

[@darlingstuff1560]

LOVE the clown make-up. Are you auditioning for a Show somewhere?