Have you finally accepted your disability and asked for help?

Posted by mayoscout @mayoscout, Feb 19 7:52am

For years I have had issues accepting all of the disabilities that I have had for 15+ years. I've always just shrugged it off and acted like I was fine. And now things are getting worse.

I am tired of acting like I am fine(I always put on a smile in public settings) because I am not and I can't keep fighting that I am not disabled. It tears me up to think that I can't run anymore among other things.

For those out there... Did it take you years to finally accept it and start asking for accommodations? How did that work out for you?

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It took me about five seconds to accept my disability; I had a stroke and lost complete use of my right side.

I got better, and hoped I'd recover fully, but I haven't. I've learned to live with it. I struggle to get better, and I am improving, a tiny bit at a time.

But my old hobbies -- hiking, nature photography, travel, etc. -- are gone forever.

I focus instead on what I *can* do, and which directions I *can* go. I learned that people find my story inspiring, so I am working at getting engagements where I can use my experience to help others.

I call it going "From Recovery to Discovery".
Part of that is my YouTube channel: https://www.youtube.com/@srlucado/videos

So yes, I have accepted that I have a serious disability, but I am not totally disabled.

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It took a long time for me to finally come to grips with the fact that mobility is an issue/concern. And then more time before asking to get a handicap parking tag. At first it was due to a knee issue, but I developed neuropathy in my left leg, and it is numb from knee down. After failing to navigate a curb and falling into a stranger's car, I have learned that any step forward from a stop, has to be with my right foot first.

Now, I use a cane everyday outside of the house. Hopefully, it is an educational situation for some people, as I need to remind them [and their kids!] to allow me enough room to maneuver. I grieve the things I can no longer do, like running, or walking for miles, riding a bicycle. But today I am "on the right side of the dirt".
Ginger

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@mayoscout Refusing to accept my limitations (I refuse to say disability) led me off the cliff into chronic pain and I was headed toward becoming a cough potato instead an "energizer bunny." My very insistent primary provider pushed my toward a pain rehabilitation clinic, where I learned numerous (non-drug) therapies for dealing with my situation. My care team included a pain doc, a wizard of a physical therapist and a counselor. I learned coping strategies, set up a strengthening and exercise routine, learned to pace myself, and to say "No" when necessary - the very hardest thing for me.
I too had to quit doing the heavy work in my gardens, climbing ladders, and running among other things, and have learned some other more sedentary pursuits that entertain me and distract me on bad days.
I still mostly keep my aches and pains to myself, and stay home if I am not physically up to being out and about. But, on days that are low psychologically/emotionally I have learned it is better to be among others than sit at home having a pity party. I guess it helps that I live half my year amongst many seniors and younger who have a variety of afflictions, but strive to keep on going. It helps me to realize that few of us get through life without challenges - and many other people have it much harder than I do.

What do you do to distract yourself on bad days?

Sue

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Hello @mayoscout, I can understand how difficult it must be for you with acceptance of your neuropathy condition after reading about your neuropathy journey you shared in your first discussion (https://connect.mayoclinic.org/discussion/tttt/). Acceptance can be extremely difficult for most of us with neuropathy but even more so when you have multiple things going on like yourself.

@ray66 also has shared his journey on acceptance along with many other neuropathy members in another discussion here:
--- PN: From Anger to Acceptance: https://connect.mayoclinic.org/discussion/pn-from-anger-to-acceptance/

Like you I really struggle with not being able to do the things that I used to be able to do quite easily. I do feel blessed that I can still think straight and do some things around the house and yard but winter and dealing with the snow is the hard one for me. I also struggle asking for help when I know that I can't do it myself, especially with small repairs around the home. I am getting better at it though but sometimes I think it's just stubbornness on my part. It helps me to read the experiences shared by others. Have you found anything that helps you ask for help when you need it?

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Still working on it after five years.
I struggle at work remembering things and make mistakes more often now. Constantly at the doctors for various pains, nerves, etc...
Always tired and when I do take a long walk, I am wiped out for a week.
Still deciding my next step. I would retire immediately if I had enough money.

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Such a good question. I was disabled at the age of 21 due to swine flu, surgery, and a long hospital stay. Since I was so young, I really hid it (from myself too). I was 40 before I began to treat it head on. But I still never took my cane to work. Then one summer's evening I was at an outdoor concert, all dressed up and clutching my cane, when I ran into my boss. Then the usual questions--what's wrong, what happened etc. I was very embarrassed and upset but also, right at that moment, realized how ridiculous it was to hide. The next day I took my cane to work! Eventually my work load was lessened and I used years of accumulated sick leave to reduce it. I worked full-time a lot longer than I'd have managed otherwise, and had a better pension. Plus, I was able to stop being afraid I'd be "found out." A cane helps me the most, although I do use double sticks and sometimes a staff. I'm very grateful to something simple that has let me do so much I couldn't have done without it.

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This particular disability has been crushing. I am lining up all the referrals from different providers as far as physical therapy is concerned (feet/back/neck/swallowing). I push myself to walk with pain in each step. So far I’ve been having to back off certain chores.

Well, mentally I did not accept it. Then with therapy I learned to. (Over time) Granted there are times I have feelings that go against it but all and all what choice is there. Not going to give up or throw in the towel. I want to be a, the glass is half full person and not negative. That would stink!

My goal is to live with peace and happiness in my life. That includes coming to terms with disability.

I hated asking for help but am learning to be okay with it because frankly the choice is ask vs. ask. It gets attention or neglect, and some things we cannot do without.

Part of the difficulty comes from losing my identity. It is a loss.

If I’m not doing “my part” what is my role? I took pride in what I did. It was near impossible to accept. I realized I had to learn a way ask for help and learn and apply what I’ve learned.

Accepting something so difficult - changing roles, asking for help and knowing my limitations. We all have them. When diminished it is no doubt a rough ride towards acceptance.

I can say every day I feel better about it. In part, because I have a lot of love and he does not look at me in any other way but a look of compassion and love.

Faith. That it important to me, helping every step of the way.

Do what I can. Do things that are fulfilling. All within my limits. I don’t like the limits but I don’t have to. I just need to live in the moment. Because tomorrow is not guaranteed. Knowing, it could get worse. But I’m not going to devote much time there because I know where it will get me and take me.

Hope you are feeling better soon.

💜

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@nemo1

This particular disability has been crushing. I am lining up all the referrals from different providers as far as physical therapy is concerned (feet/back/neck/swallowing). I push myself to walk with pain in each step. So far I’ve been having to back off certain chores.

Well, mentally I did not accept it. Then with therapy I learned to. (Over time) Granted there are times I have feelings that go against it but all and all what choice is there. Not going to give up or throw in the towel. I want to be a, the glass is half full person and not negative. That would stink!

My goal is to live with peace and happiness in my life. That includes coming to terms with disability.

I hated asking for help but am learning to be okay with it because frankly the choice is ask vs. ask. It gets attention or neglect, and some things we cannot do without.

Part of the difficulty comes from losing my identity. It is a loss.

If I’m not doing “my part” what is my role? I took pride in what I did. It was near impossible to accept. I realized I had to learn a way ask for help and learn and apply what I’ve learned.

Accepting something so difficult - changing roles, asking for help and knowing my limitations. We all have them. When diminished it is no doubt a rough ride towards acceptance.

I can say every day I feel better about it. In part, because I have a lot of love and he does not look at me in any other way but a look of compassion and love.

Faith. That it important to me, helping every step of the way.

Do what I can. Do things that are fulfilling. All within my limits. I don’t like the limits but I don’t have to. I just need to live in the moment. Because tomorrow is not guaranteed. Knowing, it could get worse. But I’m not going to devote much time there because I know where it will get me and take me.

Hope you are feeling better soon.

💜

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I appreciate what you wrote here because it expresses how "acceptance" isn't exactly a goal I can reach once and for all. Rather it is an on-going process. I didn't choose to have to do this but over many decades it has gotten easier.

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@mir123

I appreciate what you wrote here because it expresses how "acceptance" isn't exactly a goal I can reach once and for all. Rather it is an on-going process. I didn't choose to have to do this but over many decades it has gotten easier.

Jump to this post

Yes!

In things, I often bite off more than I can chew or have higher self expectations that are not feasible or attainable. I just want to do it.

Important thing I’ve been doing for a while since I’ve become aware of this is I shave the list down to more realistic goals that are practical and attainable. That way the pressure is reduced and I stop overwhelming myself and accomplish what I set out to do.

I am the list queen and should have stock in post its. It helps me track what needs attention vs. at leisure and so on.

Thank you and All The Best.

💜

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@sueinmn

@mayoscout Refusing to accept my limitations (I refuse to say disability) led me off the cliff into chronic pain and I was headed toward becoming a cough potato instead an "energizer bunny." My very insistent primary provider pushed my toward a pain rehabilitation clinic, where I learned numerous (non-drug) therapies for dealing with my situation. My care team included a pain doc, a wizard of a physical therapist and a counselor. I learned coping strategies, set up a strengthening and exercise routine, learned to pace myself, and to say "No" when necessary - the very hardest thing for me.
I too had to quit doing the heavy work in my gardens, climbing ladders, and running among other things, and have learned some other more sedentary pursuits that entertain me and distract me on bad days.
I still mostly keep my aches and pains to myself, and stay home if I am not physically up to being out and about. But, on days that are low psychologically/emotionally I have learned it is better to be among others than sit at home having a pity party. I guess it helps that I live half my year amongst many seniors and younger who have a variety of afflictions, but strive to keep on going. It helps me to realize that few of us get through life without challenges - and many other people have it much harder than I do.

What do you do to distract yourself on bad days?

Sue

Jump to this post

Hi sue I do jigsaws online, games, reading, seeing family spending time with house rabbit Mr bobs.i don't do pitty partys either.

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