August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Wheelchair Use; when, why and how?

Discussion in 'Lifestyle Management' started by CeceNoel, Jun 21, 2016.

  1. CeceNoel

    CeceNoel

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    Hey! I have a question that is both practical and emotionally challenging for me. How do/did you go about concluding that you needed a wheelchair to function better? How did you overcome the emotional 'trauma' (for lack of better phrasing), and how did you get support for using a chair from your clinician (or not, as the case may be)?

    I'm having a great deal of difficulty walking much less than a block outside my door, which means that quite often, I'm winded, exhausted, heaving for breath and getting faint if I try to walk further than..(gawd only know)...some days it's hard to tell. Aside from the insurance issues of covering the cost, has anyone managed to have the choice of using a personal mobility device with the support of their doctor?

    I'm going to ask my doctor to refer me to physiatry or occupational therapy for a functional assessment and support for resources, adaptive devices and other assistance to conduct activities of daily living, which I hope will help with my SSDI claim. I was also hoping that an assessment might showcase my limits with mobility. But, I'm interested in hearing from others about your experience with this type of thing.

    I'm also really reluctant to accept needing a wheelchair on an emotional level (feels a bit like giving up or giving in) but that's my personal bias regarding labels. But at this point, I can only go downstairs in my house when I need to go to the doctor appointment, and then I can barely make it out to the car! My life has to get bigger than this!
     
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  2. taniaaust1

    taniaaust1

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    I needed a wheelchair long before I got one, I fought the idea of needing one for a long time eg only old people use wheelchairs kind of thinking and went to using cane chairs etc first though should of had a wheelchair.

    In end I had to accept I had to get one for myself as I was collapsing too much when out in public and getting stuck, which is highly embarrassing esp when you then need to be taken to hospital due to a collapse.

    The first few times I used a wheelchair was when I hired one on special outtings eg at zoo they had motorised ones. I wouldnt have been able to go and look around the whole zoo otherwise or there was one free to use motorised ones in big stores where I struggling to walk around. These occassions helped me to get used to the idea a little.

    Its a massive thing to get ones head around using one if young, they though will make a difference though on whether you can do something or not..if you are limiting yourself due to not having one, it means you need one.

    i had no doctors support to get one even when I was collapsing in shops and ending up in hospital so dont count too much on getting that. I did end up though as I was a client of a disability service (for Aspergers though as they wont recognise ME/POTS) got one throu that .

    Ive had a very bad time with assessments, even today Im being assessed very wrong and not given the home support or modifications i need in my home for me to be able to more. It's cause most physios do not understand ME and cause you appear normal just to look at, they often think you can just push harder to do more or think you can continuely do stuff.

    I got lucky thou with my very first assessment I got on that occassion a physio who did understand ME, hence then getting one from disability service (which pay themselves the hire fee). The physios Ive had since from there, do not understand ME.

    I once went to an occupational therapy session which only had the affect of making me worst (left me not even able to eat with a fork at the time) as she didnt understand how activity would do that (and that was with a physio I got told had worked with some ME patients, i wouldnt have gone to her at all had i not have heard that but I was too unwell to be doing her exercises or even leaving my house to attend).

    If you are going to have any functional assessments, try to make sure that the person you are going to be assessed by understands this illness or it can backfire. Try to find other ME patients in your area and find out who there is doing decent functional assessments in us.
     
    Last edited: Jun 21, 2016
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  3. Kati

    Kati Patient in training

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    Hi @CeceNoel, you are asking very good questions.

    I asked for a mobility scooter to my doctor because I felt my quality of life could be improved by motorized scooter.

    I needed to ask her because my insurances covered the scooter. I am not sure where you are, if you ar enot covered, there is no need to ask your dr's permission, you can just go and buy one.

    i have had my scooter for a couple years now. I was more mobile a couple of years ago, and more able to go enjoy the nature. It served me right because i didn't need to spend energy walking but was able to enjoy nature.

    These days, i am sicker and I no longer go out for leisure time, but I use my scooter for groceries, which is handy and provides me with the opportunity to pick and choose what I want instead of getting a delivery. It is serving my needs.

    The first times I used my scooter felt really weird. The way people look at you sometimes, like they feel you don't belong in a scooter. That feeling goes away. The hell with them. I don't care anymore, you know? It was the right decision for me all along.

    i also think people are genuinly curious, they want to know what's wrong with you. Just smile and say hello when someone stares.
     
    Last edited: Jun 21, 2016
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  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The same goes for using a handicapped parking sticker: let em look; the hell with them!
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @CeceNoel I appreciate your post and relate to everything you said. I first purchased a manual wheelchair on Amazon for about $100 in Oct 2014. I really did not want to do it but I was having severe shortness of breath with walking more than about a block (at that time.) We kept it in the trunk of our car and I used it for distances (but if my husband dropped me off directly in front of where we were going, I could still walk at that time.)

    As time progressed, I needed the wheelchair any time that we went out, not just for distances. And then it got to the point that we kept it inside as I could no longer walk to the car. The grand finale (now) is that I ended up having to get a motorized wheelchair which I use inside of our home as I can no longer walk from room to room. Am not saying this to scare you (or anyone!) and it is very doubtful that your illness will follow the progression that mine has.

    For me there was no choice in the matter as the wheelchair allows me to pretty decently participate in life and without it, I would be 100% homebound. My illness is completely on the autoimmune side of the spectrum (mast cell disease, Hashimotos, several rare auto-antibodies, positive ANA titer, etc) in addition to dysautonomia and POTS. My #1 life-changing symptom is the shortness of breath but my current doctors think either the MCAS or the auto-antibodies could be causing phrenic nerve neuropathy (which showed up on an EMG) and pulmonary restriction to the diaphragm. I have three doctors now hoping that IVIG and other treatments could improve this which is giving me hope that something could still help me.

    I have zero flu-like symptoms, and don't really even have fatigue, but am completely disabled due to the breathing issue which becomes intolerable with standing and walking. I had to go to an assessment yesterday for my long-term disability insurance (separate from my SSDI and it's through a private plan I purchased from my former workplace.) When the doctor asked my husband how long I can stand and walk he immediately said, "30 to 60 seconds maximum" which surprised me b/c I actually thought it was more!

    But lying flat or seated, I can breathe normally. It is only with standing/walking that I become breathless as if a tight band is around my chest and I cannot inhale a full breath. Most people assume when they see the wheelchair that I have an issue with my legs but my legs are actually the strongest part of my body. My arms are much weaker than my legs, especially my grip strength is very poor. So I can transfer from the wheelchair to the car, to the table, to the bed, to the toilet, etc, but that is about it. When we go out, people are often surprised when they see me stand up and transfer and I have been questioned many times, including by medical professionals.

    Children often stare and a little boy once asked me if I use the wheelchair because I had "burnt feet" LOL. I still HATE the fact that I have to use it but at the same time, the motorized wheelchair has dramatically increased my freedom and independence. Prior to getting it, my husband, mother, best friend, or a caregiver would push me around the apt just to get from the bedroom to the bathroom and now I can go anywhere inside the apt by myself. If I need to get something, I can get it myself without having to ask someone to get it for me.

    And the manual wheelchair allows me to go out. We had relatives visiting from out of town for a week and I was able to go out 4-5 days in a row with them. I feel guilty that my husband has to push and lift the manual wheelchair into the car but thankfully it is lightweight (about 12-13 lbs) and he is strong. Once we get to someone's house or a restaurant or an event, I transfer to wherever I will be seated and then I stay there. If others move to another room/location, they understand that I cannot follow and thank God, my entire family and friends understand. Our bldg has elevators as I cannot climb stairs and my parents installed a wheelchair ramp at their house last summer as I had no way to get in.

    It is more strangers who ask me questions or somehow feel entitled to know details. If they ask why I use it, my first answer is, "Because I am sick." If this is not good enough and they continue to pry, I say that I have "Autonomic and breathing problems." Most are satisfied with this but there are the rare people who want to know more about POTS, mast cell disease, pulmonary restriction, or even to the level of info of N-type calcium channel auto-antibodies affecting my phrenic nerve. If they have good intentions, I am happy to discuss and sometimes they are very empathic and provide support or good info. But if they are just being nosey, or want to ask me if I've tried "x, y, z treatment or supplement" then I do not feel obligated to disclose my info to them as it is really not their concern IMO.

    I have not driven a car since approx Oct 2014 but I have a permanent disabled placard so when my husband, parents, friends, etc, drive me, we can use it for parking as long as I am in the car. It's been a God-send and don't know what we'd do without it b/c it would be very challenging to have to park blocks away with the wheelchair every time I go to a doctor appt or blood test.

    I hope this helps and it is still hard for me to view myself as someone who requires a wheelchair even though in Oct, I will have used one for two years. Best wishes to you on this journey.
     
    Last edited: Jun 21, 2016
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  6. CeceNoel

    CeceNoel

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    Oh, thank you for your responses! It's at the point, now, where I almost never go out. We're preparing to move to an apartment on one level (both to accommodate my mobility limits and because I've been out of work for almost two years - denied disability insurance claim, of course! and can no longer afford my mortgage payments). The property management company wants a physician to sign off on my need for a ramp into the apartment as an allowable accommodation under the Fair Housing Act. Not sure what I'll do about that when the time comes. It's likely that I'll be able to convince my husband to agree to use some of the equity from the sale of our house to purchase a good motorized, portable wheelchair.

    I've had some issues with mobility before I got ME. Or, at least, before I got diagnosed with ME two years ago. I've been dealing with something that stops me in my tracks in a relapsing and remitting way since 1987. I've lived with a diagnosis of "probable MS", probably, then definitely "fibromyalgia", and the "you are crazy" diagnosis of conversion disorder. Twelve years ago, I had trouble walking more than a city block for two years! The PT who evaluated me concluded it was all in my head and suggested that getting a wheelchair would just be "enabling me"...to do what, I couldn't imagine. As if I was going to be dependent on the chair even if or when I could walk again - I was just that lazy!

    So, they gave me these horrid double forearm crutches which simply served for me to drag myself around by my arms most days and tire myself out. I'd get some pretty bad treatment walking around with those things. People ignored me pretty aggressively if you get my drift. Sometimes even clutching their children out of the way. So, you see, I have my own weirdness about using a chair.

    That, and now I'm pretty heavy, so I hate to think people are concluding that I'm in a scooter or chair because I'm a fat, overloaded pig! It's hard enough! Being sick, and fat, and tired is a big drag! I try not to pay too much attention to how people perceive me out in public, and most of the time I'm okay with having a "none of your business" attitude about their stares, or their sighs or their whatever. I guess I'm also dealing with the whole other overlay of presumption that goes along with race and gender and socio-economic class. Since I've been sick this last time I've gained 60 pounds and have gone from being a respected community leader and CEO of a large non-profit, to being a fat, old bum who uses food stamps.

    I'm probably making this more complicated than it needs to be, but some days are harder than others. Thanks for letting me unload!
     
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  7. SickOfSickness

    SickOfSickness Senior Member

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    A manual wheelchair got frustrating for me, because I couldn't turn myself around or move myself at all. I'm not strong enough.

    Motorized carts are so different. I was like other people, hesitant to even try one, but when I did, it helped so much.

    I would suggest pretending that you're using it for fun, and not because you need it, so that psychologically you are thinking of it as a fun thing to try. Do that a few times, and hopefully you have good experiences.

    I kept hearing about people's bad experiences like getting dirty looks, but I found almost all people are actually nicer. Then I felt a lot more comfortable because I realized the bad experiences will be rare.

    If you want to be more sure about people understanding, hang your parking permit on the scooter or have it sticking out of your purse.

    A power wheelchair is not that different from the motorized cart but it's a little easier to maneuver and stop, and other people don't have to move so much.
     
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  8. Kati

    Kati Patient in training

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    @CeceNoel welcome to the forums. Here we understand about marginalization, stigma and bias. the stories are unbelievable and yet each one of us understand what it's like. i have also gained a fair amount of weight as I got sick.

    I like @SickOfSickness's idea to use our sense of humor when confronted to stares, disregards and indiscretion. I had a little boy pointing the fingers at the scooter, and looking at his mom asking what's this, and I said "that's my car :rolleyes:" and then i pushed on the beep beep. :cool:

    I hope you can get one soon. I am sorry you had to lose your house and you were declined for disability. It's not right. Are you allowed to appeal?
     
    Last edited: Jun 21, 2016
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  9. Gingergrrl

    Gingergrrl Senior Member

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    A difference for me, that may not apply to the OP, is that I have a lot of arm weakness and am not able to hold my arms out in front of me in the position that is required of most scooters. Whereas with my motorized wheelchair (besides it's smaller size), my arms are at my side (where my elbows are at my waist) and I just have to move a lightweight button to stop or start it. I have a great deal of difficulty with anything raising my arms due to the dysautonomia.

    @Kati and @SickOfSickness These are phenomenal ideas to use your sense of humor and I do this with kids who want to know about the wheelchair. Once some little boys talking loudly to each other pointed at my motorized chair (within our apt bldg) and said, "Cool, I want one of those..." and we laughed about it. I find when adults stare at it or question me to be more challenging than kids who are just curious.
     
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  10. SickOfSickness

    SickOfSickness Senior Member

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    I read your second post. I'm sorry you also get treated badly because of race and gender :(

    People are stupid and uninformed. Many people don't understand that invisible disabilities are possible. A lot of wheelchair users feel sheepish at first, but after a while, they feel mad enough and brave enough to start educating strangers.

    I also feel that most of us can't dress up, wear jewelry and makeup, and do our hair, and we're treated worse for looking like that.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Agreed and before I read anything and just saw the original poster's avatar, I thought how beautiful and friendly she looked and it drew me in and made me want to post. My reaction would be no different if she (or anyone else) was in a wheelchair but you are right, many people out there in the world are stupid and uninformed.
     
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  12. Mary

    Mary Senior Member

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    The PT's evaluation is so insane, it leaves me speechless (almost). Yes, enabling to do what exactly?!?

    I was talking to my sister the other day - even though she doesn't have ME/CFS, she is extremely supportive of me and I'm extremely fortunate to have her. So she was telling me that she had completed the MEAction survey/petition which is going to be submitted to the NIH (http://forums.phoenixrising.me/inde...n-me-cfs-theyre-asking-you.45253/#post-736487), and she said she had checked yes, or very much to each item.

    I then asked her about the CBT (cognitive behavioral therapy) and GET (graded exercise therapy) items, and she said she knew enough to say no on the CBT, but goofed on the GET and checked yes for that. I told her that if my body ever starts working right so that I have enough ATP, enough energy, THEN GET will be useful to help recondition my unconditioned body. And then she accused me of SGS - Secondary Gain Syndrome! (I think it's a real thing!) (All these acronyms! :confused:) I said, oh yeah, I get so many benefits out of my life stopping due to ME/CFS - I don't have to deal with people or relationships any more, I get to read all the murder mysteries I like, and then I ran out of Secondary Gains. We howled. She was being sarcastic of course - she's a drug and alcohol counselor - a very good one, and knows all the terms. She has RA but still has a very full life and has told me several times she'd much rather have what she does than ME/CFS. Anyways, your statement about being "enabled" made me think of this.

    Re a wheelchair - I don't need one for daily living, but I do get one when I fly to see my kids. Waiting in the security lines and walking the concourse would wipe me out. I still crash when I get where I'm going but not as bad as if I had to do all that walking. I still am not used to it, but the wheelchair assistants have all been very kind (each time I almost burst into tears, they are so nice). And I need it - so, as the rest said here, the hell with anyone who doesn't get it!

    I am sorry things have been so rough for you - welcome to the board --
     
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  13. CeceNoel

    CeceNoel

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    Thanks @Kati. I've exhausted all the appeals for disability from my workplace. They say the next step would be litigation. Doing the appeal was hard enough! I'm now preparing to apply for SSDI. We've also looked into trying to get my husband paid as my caregiver. It seems they won't take my word for it (needing his help to bathe me, for instance) but may be persuaded if there was more evidence of the need according to Medicaid rules (keeping me out of a nursing home at considerably more expense to the system). Yeah, it's a tough row to hoe.
     
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  14. Vasha

    Vasha Senior Member

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    Hi @CeceNoel and a warm welcome!

    I can't add much to what's already been said, but wanted to add my support for you doing exactly what you need to do in order to "embiggen" your life. @taniaaust1 hit the nail right on the head: "if you are limiting yourself due to not having one, it means you need one" and also @Kati noting it would improve your quality of life.

    You deserve the best quality of life you can have.

    On stigma etc - I don't know if this resonates, but I found that getting a wheelchair challenged my sense of my identity in some really difficult ways. The little voice went something like: First, I can walk at times, and for short distances, so who am I to use a wheelchair? I have a stick to lean on if I'm too unsteady. Second, this will be so conspicuous....

    Realizing I would be appalled at myself for thinking this way about any other person using a wheelchair helped me get over that. I realized that part of what was going on was also my own unexamined "able" identity and biased ideas about who uses a wheelchair. Yes, I am disabled. There is no way around it. That is also emotional to confront, but it makes none of us any the less.

    The fact of the matter is, I can't walk more than a little bit, often I am too unsteady to walk well or sometimes at all, and either way, the exertion of trying to do a doctor's appointment etc without a wheelchair will cause much worse effects later. I am almost entirely housebound, and a wheelchair helps tremendously getting out and about at all. Them's the facts, and facing them by getting the wheelchair really improved my quality of life.

    I am also so sorry you've had such trouble getting benefits. It's maddening. Re SSDI, the very generous @KitKat just started a thread with some tips on that:
    http://forums.phoenixrising.me/inde...or-social-security-disability-ssi-ssdi.45105/

    All best wishes to you--
    Vasha
     
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  15. SickOfSickness

    SickOfSickness Senior Member

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    @KitCat also started a good thread on getting a home caregiver paid for.

    Physical therapists seem to be very against devices. They mostly think their profession has all the answers for everyone. That everyone can do physical therapy and they try to steer patients away from things that will weaken the muscles (so they are taught). But they don't account for the chronically ill who would collapse or get worse from the PT. Occupational therapists are sort of opposite and like to get patients set up with devices, with the warning not to use them constantly.
     
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  16. Kati

    Kati Patient in training

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    Hi @CeceNoel look up Linda Nee disability blog, https://lindanee.wordpress.com she maybe able to help you out. She used to work for a big disability insurance and now she is helping patients getting theirs. She is knowledgeable with ME/cfs.
     
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  17. KitCat

    KitCat be yourself. everyone else is already taken.

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    I heard there is such a thing as a power RECLINING wheelchair. That is what I want. I have not yet looked into it yet.

    I have mixed feelings about stigma. I think it will be challenging to me, but also a relief for people to just "see" that I am disabled. I've been sick for so many years, at this point, I am ready to let go of the "invisible" in invisible illness.
     
  18. KitCat

    KitCat be yourself. everyone else is already taken.

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    @SickOfSickness thank you for tagging me.

    @CeceNoel I started two threads that might interest you:

    1. How to Get Free Help in Your Home (cooking, cleaning, shopping, personal care)\

    2. Applying for Social Security Disability for CFS

    these are both in the disability work and finances section... come visit if you wish :)
     
  19. KitCat

    KitCat be yourself. everyone else is already taken.

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    Sorry, I hadn't read this post yet.

    I am in a medicaid waiver program. I did not run into any problems like this. Your state may be different than mine?

    I would love to see you get in this program!

    If you don't mind sharing... Did they give your doctor a form to fill out? Or did they give you a form to bring to your doctor?

    Did you ask them why you didn't qualify? Are you sure it was because they wouldn't take your word for it? There may be another reason.

    If you can figure out the reason, you can probably solve it :)

    Do your have a doctor who believes you are disabled and supports you?

    I'm also wondering if you can get regular medicaid or a waiver to pay for a scooter for you? Maybe you are in a state without good medicaid regs.

    but... are you selling your house? This may disqualify you financially from any medicaid programs :(

    I agree with the person who suggest to contact Linda Nee about your LTD. I have heard she is very knowledgable.
     
    Last edited: Jun 22, 2016
  20. AndyPandy

    AndyPandy Making the most of it

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    @CeceNoel

    Getting a wheelchair was life changing for me. It allows me to snatch little pieces of life outside of my home when I am up to it.

    That's me in a borrowed beach wheelchair in my photo!

    I bought a cheap secondhand wheelchair on the Internet and asked for permission from no-one! I knew I needed it.

    Best wishes to you

    Andy
     
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