Beginner's Guide To Home Aids & Accessibility for Fibromyalgia // Fibromyalgia Awareness Month 2019

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  • เผยแพร่เมื่อ 20 ธ.ค. 2024

ความคิดเห็น • 70

  • @ag-dn1vl
    @ag-dn1vl 3 ปีที่แล้ว +23

    i just got diagnosed yesterday after 9 months of being told it was just growing pains (both by my parents and my doctor)
    i don’t really blame them because fibromyalgia is rare in people my age (i just turned 14) and on average takes 2 or 5 years to get diagnosed. i guess i was really fortunate.
    i had to pay for my walking cane by myself from money i saved up (no matter if it’s a good or a bad day, my left leg is always in moderate to severe pain.) because my parents didn’t think i really needed it.

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว +3

      I'm so proud of you for going out and still getting that cane to help you! And you are right, it is less usual for younger people, but it doesn't make it less tough.
      I hope you know you are not alone!

    • @divyajangir2518
      @divyajangir2518 2 ปีที่แล้ว

      I was around your age when my symptoms started

    • @AlexxWretched
      @AlexxWretched 2 ปีที่แล้ว +1

      I'm so happy for you that you were diagnosed young, I experienced symptoms for over 15 years prior to diagnosis. "Growing pains" for myself as well, as well as other lame excuses, such as dehydration, gas, weight, etc. I. 'm still actively fighting to get my hypermobile joint issues evaluated. I really urge you to push doctors and push them hard if they ever ignore symptoms. Ive had a new issue of everything being pushed aside as fibro when it likely isn't. Doctors love to ignore blatant symptoms until they finally diagnose you, then theyll blame everything afterwards on that one condition. I'm really sorry you're going through this, and urge you to stick close to the chronic illness community if you haven't been in this past year. It's a helpful group that will keep you sane and offer many solutions and aids where a doctor will shrug their shoulders and the people around you may underestimate your struggles.

    • @DreamixVA
      @DreamixVA ปีที่แล้ว +2

      LITERALLY SAME TT I just turned 15 and I was diagnosed with Fibromyalgia about 1 year ago. It got so bad I couldnt go to school and had to be homeschooled for 2 years because of my disability (fortunately I live with my mom who was A LOT better at listening to me than my dad) I am better though and looking into schools in my area, with a cane for my okay times and a walker to help my bad days! I hope your situation is better and you live a happy and fulfilled life despite your ailments!

  • @AlexxWretched
    @AlexxWretched 2 ปีที่แล้ว +5

    The electric blanket is my NUMBER ONE for fibro! I also keep a supply of things directly by the bed for when I inevitably crash at the end of a work day: basket of snacks, drinks, and also small desk bins for trash and recycling. Ive learned to stop fighting the "lazy" and work with it. If I don't have trash bins i will inevitably leave so much trash piled around the bed, but the bins keep it under control. Ginger candy is a big one too, helps with stomach issues, which a lot of us have. A tip I learned from my great grandma for opening jars is to tap them hard a few times on a surface while rotating, makes most jars really easy to open, though may not work for some who struggle exponentially with opening things.

    • @klb374money
      @klb374money ปีที่แล้ว

      Yes! I can't live with out my electric blanket, my memory foam mattress and my chair/back massager. ( with heat off from amazon) Great tips.

  • @GeeklingNo1
    @GeeklingNo1 3 ปีที่แล้ว +8

    I use that exact stool as a shower stool bc I can't stand how heavy and medical shower stools usually are.
    ALSO another tip! Put things in boxes or on trays to you can carry them places. I put all my Jewelry and hair stuff in little boxes so I can take them to my desk or out to my table. It also means you might not have to get up from a chair to reach into the back of a drawer bc you can just pull out the tray you put in the drawer

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว

      OMG Yes, I do that too! I have little boxes, trays and baskets for everything! I even got some plastic tool box type of organizers for my sewing stuff so I just need to grab the box and go to the sofa or whatever.

  • @Ashbrodie
    @Ashbrodie ปีที่แล้ว +1

    Thank you I’m 12 and have fybro my mom was diagnosed at 10 and this helped a lot

  • @orirose9100
    @orirose9100 3 ปีที่แล้ว +5

    This was so helpful, thank you! I was diagnosed a few months and kept putting off getting aids because it felt like that'd make the diagnosis more "real" in some way. But your chill and encouraging vibes in this video got me to get a cane and a wedge pillow and I'm looking forward to getting some relief from them. Thank you so much!!

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว

      Aw thats awesome! I hope you find them helpful 🥰

  • @sleepygrlgamer
    @sleepygrlgamer 3 ปีที่แล้ว +6

    This video was great! I got diagnosed with Fibromyalgia this year and I was really considering a mobile aid like a cane or a walker because some days my legs and feet hurt so bad I can't walk... Thank you! ❤️

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว +2

      I'm so glad it helped! I never considered a walker cause I was scared they'd be too heavy, but a cane is an awesome aid! :)

  • @Carlie_flower
    @Carlie_flower 3 ปีที่แล้ว +4

    I like to put a blankie in the dryer so it's all warm when I use it but you do have to wait for your warm blankie... I learned that from the hospital. I like when they bring me hot blankies ❤️

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว +1

      Thats such a good idea!

    • @Carlie_flower
      @Carlie_flower 3 ปีที่แล้ว

      @@olgachronics3273 thank you! it works best with nice thick blankies or multiples so they stay warmer longer❤️
      I gained inspiration from when I was small and my mom would pull out the warm laundry I'd always crawl in and make a warm nest lol 😂

  • @shoujophobic
    @shoujophobic 2 ปีที่แล้ว +2

    Thank you for this. After years of extreme joint pain and tons of blood tests, my doctor said that it's more than likely my condition is fibromyalgia. Thank you for making a video on mobility aids, they could help me so much.

  • @janinemark633
    @janinemark633 5 ปีที่แล้ว +4

    I use a grabber to pick things up of the ground so that I don't have to bend down because of my lower back pain

    • @olgachronics3273
      @olgachronics3273  5 ปีที่แล้ว +1

      I know about those but haven't felt the need for one so far. I guess it really comes down to each of us individually, and how our symptoms affects us.

  • @JustIsTime890
    @JustIsTime890 ปีที่แล้ว

    I need that back support

  • @cameronmat
    @cameronmat ปีที่แล้ว +1

    I'm currently in the process of seeing specialist to get a diagnosis. My symptoms very much align with fibro, but my goal is really just to get any answers. I already own a cane which I used after bunion surgery (I was only 23, rip). I will use the cane when my legs are really bad, but then since my hands and wrists can also be pretty bad, the cane can make it worse. It's really about deciding between the lesser of two evils.

  • @emilyvbr1878
    @emilyvbr1878 3 ปีที่แล้ว +1

    I like that trolly idea!

  • @LibbyWithnall
    @LibbyWithnall 5 ปีที่แล้ว +5

    What a great video Olga. Lot's of useful info and tips - I should make a similar video because while I use a lot of the same things, I also have different aids that I LOVE.

  • @bunnycloud6404
    @bunnycloud6404 5 ปีที่แล้ว +9

    I just got diagnosed with fibromyalgia and am so instable but my mom wont get me or i dont know how to convince her to get me a mobility aid. Do you have any tips on how to convince her?

    • @olgachronics3273
      @olgachronics3273  5 ปีที่แล้ว +9

      I think maybe showing her, in a way that she will understand, that a mobility aid would be a way to improve your quality of life and that you would maybe even improve with the help of it. Showing her videos from disabled creators might help, but I think finding out why she is so reluctant might help guide you in how to proceed to convince her. I hope you find a way to get the mobility aid you need :)

  • @aleah697
    @aleah697 4 ปีที่แล้ว +8

    Im 13 and have had all the symptoms for fibromyalgia (not saying i have it i dont want to self diagnose) for the past three years but my parents arnt doing anything about it nor have they taken me to the doctor because they say its just growing pains..... do you uhhhhh have any advise on how to start up a conversation with a doctor?

    • @olgachronics3273
      @olgachronics3273  4 ปีที่แล้ว +4

      Hi! I'm sorry to hear your parents aren't being as supportive as you need right now. Have you considered maybe showing them some reliably sourced research on both fibro & how growing pains have been proven to be a myth?
      Since you are still so young you will alway have to have your parents there when you see a doctor I guess, but I would suggest mentioning other symptoms as well as the pain - the memory loss, the fatigue, numbness, whatever your main symptoms are, and how often you feel them, and also how limiting they are. I find mentioning this isn't how a normal person my age is supposed to feel works sometimes. I think it's crucial as well to get tested for everything else, because there are a lot of conditions with very similar symptoms, some of which do have cures, or better prognostics, so making sure you can go through a process of elimination is super important.
      I think you should be patient and consistent, make sure you are speaking up for yourself - sometimes it takes parents a little while to believe you, which can even be because they don't want to admit/believe that you are really in so much pain, you know? So try to be patient, but keep on reminding them that you want to know what is going on with your body :)
      Stay safe, and let me know how you get on :)

    • @ladybugs774
      @ladybugs774 2 ปีที่แล้ว

      I'm 16, and have been asking for years to get seen by a pain management doctor. Finally got seen, and was diagnosed with fibro and started on 2 new meds and have a back injection on monday

  • @JustIsTime890
    @JustIsTime890 ปีที่แล้ว

    I use a can for short walks or if I am going to be sit. And a weelchair for comercial centers, all this going out that requires a lot of walk

  • @VixenRedx
    @VixenRedx 2 ปีที่แล้ว +2

    I have fibro symptoms (I'm 18 so not being taken seriously only physio on my side)
    This has been useful for me to figure things out for me. As doctors arnt don't really anything. Got some crutches and wanted to know if it could help. Thank you so much for helping x

    • @olgachronics3273
      @olgachronics3273  2 ปีที่แล้ว +2

      I hope you get the help you need soon, keep advocating for yourself ✊

    • @VixenRedx
      @VixenRedx 2 ปีที่แล้ว +1

      @@olgachronics3273 Been using crutches since seeing this and it's bit extra freedom so thank you ☺

  • @cynthiacordoba9492
    @cynthiacordoba9492 5 ปีที่แล้ว +4

    Olga thanks for these video!! It’s always super helpful...I have everything but I need that medication box..it’s hard finding one that has the one split for morning afternoon and night and bedtime...question. You mentioned working from home. I’m trying to find something myself cuz right now I rarely get out to work..I know you do these Videos but I was wondering if you also did something else

    • @olgachronics3273
      @olgachronics3273  5 ปีที่แล้ว

      I found that pill box at my supermarket. I know they have them online though. Try amazon, maybe ebay. I think you might have to really dig to find the right one though. Well, the only money I get from my videos is from the people who support me via patreon or who purchase items from my etsy store. I have a video talking all about my work from home, but I do freelance caption editing as my main source of income. :)

  • @nickyannajones
    @nickyannajones ปีที่แล้ว

    At one point my fibro got so bad that i spent a year in an electric wheel chair. I went into mostly remission for a good while, with flares now and again. Fast forward 20 years and i found out my fibro is actually ankylosing spindolytis and ive been in a flare for over a year now. Ive finally given in and bought a 2 in 1 rollator. I havent put it together yet. Just got it yesterday

  • @abbsmo
    @abbsmo 5 ปีที่แล้ว +3

    That is THE CUTEST hot water bottle I’ve ever seen! 😍💕🥰
    Edit: this was referring to the sheep one, but the bear is adorable too! Haha 😄

    • @olgachronics3273
      @olgachronics3273  5 ปีที่แล้ว +1

      haha thank you! I'm a firm believer that my aids have to be cute - if I have to have them, I might as well make using them a more pleasurable experience :)

    • @abbsmo
      @abbsmo 5 ปีที่แล้ว

      Olga Chronics truer words have never been spoken! Lol same for me

    • @olgachronics3273
      @olgachronics3273  5 ปีที่แล้ว +1

      haha Glad I'm not alone!

  • @myflower9106
    @myflower9106 5 ปีที่แล้ว +1

    Thanks Olga

  • @jennyhall6614
    @jennyhall6614 4 ปีที่แล้ว +3

    Do you have any suggestions for storage next to the couch? I spend all day on the couch and I can't move much so I need something to hold my necessities near me

    • @olgachronics3273
      @olgachronics3273  4 ปีที่แล้ว

      I do! A sofa caddy! I have one that sits on the arm of my sofa, which has a bunch of pockets as well as a flat surface where I can place glasses/cups and it's surprisingly steady. You can also find one of those little side tables that have a foot that can be tucked under the sofa, so you have the table over your lap while you sit (hope that makes sense) and that can be used as an area to place things. But Sofa caddy is probably the best option. Another thing I do is I have a project bag with all my embroidery stuff so that's easy to reach and is all tucked away when I'm not using it.

  • @jackiem7390
    @jackiem7390 4 ปีที่แล้ว +2

    Your medication thing looks really helpful. Where can I find one like that?

    • @olgachronics3273
      @olgachronics3273  4 ปีที่แล้ว +1

      Thank you! The one I showed in this video I bought at a supermarket called Lidl, they have random stuff like this sometimes. But I have since switched to a different one which I bought on YesStyle. You can also find similar things on amazon and wish :)

    • @jackiem7390
      @jackiem7390 4 ปีที่แล้ว

      @@olgachronics3273 Thank you!!

  • @Hypomanicpanic
    @Hypomanicpanic 4 ปีที่แล้ว +3

    Thank you so much for this, there were some things I hadn't even thought of and some that it was nice to know other people need too. Where did you get your pill organiser? I've been struggling to find one like that

    • @olgachronics3273
      @olgachronics3273  4 ปีที่แล้ว +1

      You're so welcome, I'm happy it helped! The one I am currently using I bought on YesStyle, but I'm sure you'll be able to find it on Wish, Amazon, sites like that! If you want a link to it let me know :)

  • @moonchildkoya552
    @moonchildkoya552 3 ปีที่แล้ว

    Thank you for this video! I just got diagnosed so this really helped me!

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว +1

      That's awesome, I'm happy it helped :)

  • @redisthecoolestcolour
    @redisthecoolestcolour 4 ปีที่แล้ว +3

    Oh yeah, I named all my aids! Red walking stick: Glenn (named after Glenn Jacobs, look up his WWE name you'll get the joke). Black walking stick: Calloway (named after Glenn's character's brother's real name). Blue walking stick: Percy (after their character's father's real name). Work walking stick: Claude (it has waterlilies on it).
    Rollator: Enzo (it's a BRIGHT red and I work with Italians, they thought it was Ferrari red, so...). Next item will be a wheelchair, power chair or scooter (can't decide which) will need to brainstorm their name.

    • @olgachronics3273
      @olgachronics3273  4 ปีที่แล้ว

      I love all of those! Enzo is my favourite!

  • @frankienixon8413
    @frankienixon8413 ปีที่แล้ว

    I think I have fybromalgia as my dad as it I have been experiencing chronic pain and fatigue for nearly a year now I’m using crutches and waiting to see a gp about it as I’m unable to walk atm

  • @ladybugs774
    @ladybugs774 2 ปีที่แล้ว

    Do you think that forearm crutches might help, or do you think they would hurt more

  • @Chemdoll
    @Chemdoll 3 ปีที่แล้ว +1

    I have fibro and have been thinking about getting a walking stick because I have to take the bus and walk quite a bit more lately and feel it would help, but I have the problem of feeling like I shouldn’t because my pain isn’t as bad as others. How can I help myself and not put myself down about it? Any tips or advice?

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว +2

      I think you need to start by working on your internalised ableism - we have all been raised to believe mobility aids are bad, like giving up or whatever. But they're the opposite. They are freedom and confidence and independence. They mean you can enjoy your life more, and spend less time tucked away resting or flaring. Sure, some people might be in more pain than you, but that does not make your pain any less valid, and does not mean you have to be uncomfortable. We all have our own struggles, and we shouldn't not try to make our life better just because someone's life is worse! Maybe look into the #babewithamobilityaid or #disabledandcute tags on insta, they helped me a lot in accepting my aids. And decorate them to make you more excited to use them!

    • @Chemdoll
      @Chemdoll 3 ปีที่แล้ว

      @@olgachronics3273 thank you so, so much!!

  • @HomkHomk
    @HomkHomk 3 ปีที่แล้ว +1

    I might have fibromyalgia (I'm almost 17) I'm thinking about getting a cane because I fall alot, due to dizziness or my knees buckling/giving out. Is it a good idea to get one? :)

    • @HomkHomk
      @HomkHomk 3 ปีที่แล้ว

      I also experience weakness in my legs

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว

      A lot of people in the community say that if you are considering an aid then you should get it, because that means you need/could benefit from it 🤗

    • @HomkHomk
      @HomkHomk 3 ปีที่แล้ว

      @@olgachronics3273 thanks! :)

  • @shannongreenwell1278
    @shannongreenwell1278 2 ปีที่แล้ว +1

    My sister has Fibromyalgia, but she doesn’t use any walking sticks.

    • @EC-yd9yv
      @EC-yd9yv 2 ปีที่แล้ว +1

      Ok.. many have same illnesses to varying degrees

    • @shannongreenwell1278
      @shannongreenwell1278 2 ปีที่แล้ว

      @@EC-yd9yv that’s true, I have EDS and everyone is different but we have the same illness. Our symptoms are what’s different. I use a cane( walking stick) and I have a Rollator ( walker with wheels and a chair that I can sit on when I need a break from walking).

  • @55SilentShadow
    @55SilentShadow 7 หลายเดือนก่อน

    ❤❤❤

  • @dalenedrinning9112
    @dalenedrinning9112 3 ปีที่แล้ว +1

    Thank you for sharing your produts VERY nice THINGS.IVE GOT FIBROMALGIA AND I CAN RELATE TO HOW YOU FEEL.I GET REAL HOT AT NIGHT ITS HARD TO COOL DOWN.ALSO GET REAL COLD IN THE WINTER SO YES ITS A CRAZY DISEASE AND OTHERS JUST THINK IM CRAZY...HOW CAN YOU BE SO HOT ITS NOT HOT.OR HOW ARE YOU SO COLD ITS NOTCOLD.WILL SORRY PEOPLE IT IS TO ME..IVE GOT A FEW AUTOIMMUNE DISEASES AS WILL .WILL KEEP RHE VIDIOS COMMING I ENJOY WATCHING THEM AND I FEEL AT LEAST IM NOT THE ONLY ONE WHO FEELS THIS WAY AND IM NOT CRAZY LIKE PEOPLE THINK I AM.THIS FIBROMYALGIA IS REAL!!! CAPITAL R...... REAL .NO FUN DISEASE.IT HAS ALOT OF SYMPTOMS THAT GO ALONG WITH COLD AND HOT.JOINT OAINS MUSCLE PAINS WEAKNESS HEADACHES FATIGUE FIBRO FOG CAN'T REMMBER THINGS FORGETTING STUFF.LOSSING THINGS
    CANT FIND STUFF.AND A HOST OF OTHER THINGS DEPRESSION ANXIETY...SADNESS LI ELYNESS .THIS IS A DISEASE NOT A JOKE.!!! PEOPLE NEED TO WAKE UP A RECOGNIZE HOW BAD FIBRO IS.ITS PAINFUL AND BREAKS MY ❤ HEART THAT PEOPLE DONT BELIEVE HIW REAL THIS IS.HOPE THEY NEVER GET IT ITS AWFUL.TAKE CARE MY FRIEND GID BLESS YOU AND YOUR FIBRO PAINS FROM CALIFORNIA🌞🌴🌸🌻🌳🌍❤😇😴😴😴

    • @olgachronics3273
      @olgachronics3273  3 ปีที่แล้ว

      Thank you! hope you have a low pain day :)