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happy and sad


blackwolf
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i'm walking that line of being happy and sad today. we got my walker :)

one side of me is so happy to get the help of the walker, and one side of me is so sad for have the need to get one. my sence of balance is shot, has been for a long time. i also have been getting weak faster than ever. and i'm not so sure how well my left side is really doing. i see a neuro doc at the end of the month, i hope ther are some answers there as i have just about nothing left.

the walker i got was one of those really nice ones with 4 wheels, hand breaks and a seat. it is just what i need right now. but i can't really admit i need it so much.

very depressing :(

blackwolf

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oh conflicting emotions **** :)

I hope the walker can help you! i dont know your whole health situation but is it possible that this could help you build muscle strength? (when you say walker i am assuming its like a moving walking frame? or is it more like a scooter?)

heres to hoping that its positive side outweighs the negative side for you! ....

hang in there :(

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I have been caught walking around hooked up to an iv and boy, do I get weird looks. But you know what, not as many looks as I would get if I was on the ground with paramedics around me. So, it's a choice. It's just one of those things I have to do in order to have a "normal" life. Same about a walker, scooter, or wheelchair- those are our tools for normalcy. I bet the more you use your walker and see its benefit, the less hang-ups you'll have about using it. Congratulaions- I know that it is a hard thing to do and maybe one day soon you can put it away because you don't need it anymore. Good luck!

Carmen

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Ok i realise this may seem really stupid and it may not be your thing at all ... but maybe you could try and make the walker seem more 'fun' .. like add personal touches to it paint it/decorate it or do differnet things so it feels like its more a part of you instead of a symbol of illness. Just a thought. Feel free to ignore it :)

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I use a wheel chair, and at first my mother was really upset about it, but now i can do some normal things for a 16 yr. old. My mom made me some covers for the w.c., and everyone always comments on them. try to have fun with your walker. is it a custom walker, that is a cool color. my wheel chair is a custom w.c., and it is bright purple! i hope that this walker will give you some normal aspects of life.

Alexa

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Hi,

I felt like you when I got my wheelchair. Also I was so ashamed to be in a wheelchair when so young and looking so healthy. I did not want anybody who knew me to see me in it. After months and months of not using it enough (fainting everywhere at university) I finally accepted to use it and let people see me in it. It took months before I got emotionally adjusted to using it and now I almost don't care if people see me in it. Even if I am disabled I don't consider myself disabled. I see myself as someone needing to sit to "walk around"! When I go for a ride I bring my dog and people talk to me so I have fun.

Ernie

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blackwolf,

It took me a while to get used to the idea that I walk with a cane. Especially as we live in a smallish community, people notice things. I'm also in a wheelchair on and off. The best thing I ever did for myself was not hide in the house because of my disability (even prediagnosis, when sometimes I would get curious expressions, as if to say if you don't have a diagnosis, how can you be disabled?-at least my interpretation at the time...) Getting out, by any means necessary, and going about my life as much has possible is a big factor in keeping me from getting down.

Evie's suggestion about personalizing your walker made me smile. It reminded me of something I did to my first cane. I hand marbilized it with paint, and then wrote inspirational sayings all over it. I said that if I need a cane at the age of 32, gonna do it in style. It turned out to be a big discussion item, with people gathering, reading, sharing and all of us walking away uplifted. I no longer have it, I was walking to the grocery one day and a real old, senile, man, must have been close to 100 years old, was begging on the corner. I gave him some money, and he asked me for my cane. I gave it away. My new one is unadorned and lightweight.

Ariella

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thanks everyone!! :)

funny isn't it, i came here to tell everyone how glad i am to have it.

it is already helping, i stand straighter and walk in a much straighter line.

as to the model, it is one of the less expensive models with 4 wheels, hand breaks, and a basket for the bottom. it is a nice cherry red and everything else is black. the seat folds up and down for use, and the "backrest" is cloth, which i plan to embroider and/or cross stitch(evie's idea sounds neat) and i am also thinking of seat covers that i can slip off and on(velcro or snaps) and mabey some little "bags" for the basket and to hang from the sides. mabey some beads and paint, crazy quilting?

a sewing we will go

a sewing we will go....

thank you everyone!!!!

blackwolf

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Oh im so glad its helping you! :(

With my suggestion i was worried it would sound like i was diminishing your emotions by saying "decorate it" heh ... i was not trying to diminish them at all of course and it sounds like you already had the plan! I wish i could do embroidery .... im jealous! :)

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blackwolf,

thanks for checking in with us...i miss you here!

i have begun to wonder about the wheelchair thing and more assistive devices and all of that jazz. i am beginning to recognize more and more that, yes, i am a person with a disability and i need to utilize the services and accommodations out there for us. you know? that being said...it is soooo hard. like, somehow, i feel like a failure. what is up with that? so, i hear you. and i can't take away your pain. it's a loss--having a body that doesn't do what we so want it to. it's painful.

you are brave to have gotten a walker and not just curled up and said forget it. and, if it helps you to have more of your life back then, in the long run it will be worth it.

i know that you are super creative and crafty, so i think the suggestions to personalize your walker (and make it feel less 'sterile' and 'institutional') are great...and i know you will create something beautiful. if you feel brave and courageous one day...share a pic of you and your newly decorated walker with us on Faces of DINET! ;)

i think the best thing for us to do is to not hide...i think that if we go out with our assistive devices we will make the road easier for those who follow us. i want someday for the world to be much, much easier for people with disabilities to navigate.

emilh

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Blackwolf, I sure feel for you. There are so many of those bittersweet moments with this illness. I never thought I'd be completely dependent on medication, but I am. Maybe someday, I wont be, but for now, this is just the way it is.

I am happy for you though, that you now have increased your potential for mobility at home and in your community. I hope you get to go strolling wherever your heart takes you. And I'm also proud of you for setting aside your unhappiness about not wanting a walker for long enough to take the risk and get one. That's bold and brave.

Nina

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Emily,

You wanted to know "what's up with feeling like a failure". You (like me) truly believe that positive attitude can make it better. It can. and it does. But hasn't made it better to the point of taking it away. So maybe you feel that if you would have more say, spiritual strength, you wouldn't need the help as much. And maybe that's what's making you feel guilty? Just a thought, I felt the same way for a while...I have a good friend who remind me that real strength is not in what we can or cannot do, rather if we can deal with equanimity and peace with what we've been given.

Ariella

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"Emily,

You wanted to know "what's up with feeling like a failure". You (like me) truly believe that positive attitude can make it better. It can. and it does. But hasn't made it better to the point of taking it away. So maybe you feel that if you would have more say, spiritual strength, you wouldn't need the help as much. And maybe that's what's making you feel guilty? Just a thought, I felt the same way for a while...I have a good friend who remind me that real strength is not in what we can or cannot do, rather if we can deal with equanimity and peace with what we've been given.

Ariella"

ariella,

i know this thread is for blackwolf...so i am sorry to get a bit off topic here, but if you are reading...THANK YOU from the bottom of my heart for your heartfelt words. i needed them very much today. yes, i do hear what you are saying. and you are sooooo right. i need to hold on to how 'strong' i am spiritually...not how 'strong' i am physically. i think sometimes after 7 years, i think, why am i sooooo sick???? why i am still homebound?? am i just not trying hard enough? well, i think most of you here know how hard i do try...it's hard that this illness isn't always about how hard we try...and that is where we have to dig deeper for the other type of strength of which you speak.

thank you again,

emily

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  • 2 weeks later...

blackwolf -

i know that i'm WAY late with this, but i just wanted to give you a hug and an "i get it" re: your getting your walker. i'm sorry i never had a chance to reply when you first posted as your post totally rang true with me having just gotten my wheelchair this summer. but....i was equally glad to hear how quickly you realized how much it's helping. and i hope you're still having the same experience. i actually was a bit more prepared by the time mine came b/c i'd started using a wheelchair at the store, etc...but getting my own delivered was still reaching "another level".

this may sound odd, but i've actually found that NOT thinking about it makes it easier on me. b/c honestly if i don't think about the meaning behind it, the fact that i'm 25 and have to use a wheelchair to go to the store, etc. i actually just enjoy the fact that i can more easily do things that i haven't been able to do in quite a long while. of course that's easier said than done at times, but there seems to be something to it for me....b/c the reality is that my wheels are wheels of freedom, not confinement...

do make sure to let us know how the decorating goes! (my chair is blue & a bit sparkly:-))

i hope you're still able to be enjoying your new helpmate. my wheels give their regards to yours :)

:rolleyes: melissa

p.s. here's a cool link about a lady with MS getting her wheelchair called "A Wheelchair? Me?"...it's a power chair but a good read in my opinion...it made me smile!

http://www.findarticles.com/p/articles/mi_...202/ai_n9078694

ernie, are you reading? i thought of you!

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Hi Melissa,

Thanks for posting the article. I read it through and it's my experience to the penny! It makes me feel better to know that I am not the only one feeling like that. I also like that fact that she mentions insurance. I has assumed that I was insure but I better check it out.

Ernie

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Hey Blackwolf. I just thought I'd offer some support here. I'm 23 and I have a wheelchair, walker and stick. Oh, and a perching stool for the kitchen, a board for the bath when I can't stand and an electric bed which tilts so I can sleep at an angle. Mycardio thinks it might reset my baroreceptors if I lie at a tilt. It works sometimes, but not others. I get all this from the NHS, so luckily don't have to pay for it.

I'll never forget the day the Occupational Therapists took me over to the 'assessment centre' it was while I was in the cardiac ward. Talk about depressing- the only other person there was a 93 year old woman who didn't know what day of the week it was.

I felt so angry at first- utterly humiliated that I had been reduced to this. I usually trry and manage with my stick, or if I'm really bad, go out on wheels.But in the hospital my walker was really handy.

You've GOT TO be positive. This is your key to independence. If you need it, it's great you've got it.

And you can have some REAL fun with ignorant people who stare. Some examples might include:

In the supermarket, a shop assistant asks if you can sign your name when you pay for something by card. Smile blankly, nod and say "yeah, I can even pull up my pants and tie my shoelaces! amazing, huh?" :)

Another one would be if people stare at your walker, say "I know, i'm sex on legs...would you like an autograph?" :rolleyes:

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sorry i missed these last few comments, i have been busy and kinda tired. we have had a round of doctor apps, and then getting ready for school.

i have been so tired and wear out fast. i am seeing a nuero doc on the 30th. i really hope that goes good. he specializes in pain mgt. and i am also trying to get in with a neuro that knows alot about POTS(new to area) but he is really backed up, ie i might have to wait till nov or dec to get in. still working on it.

the walker has been helpful and nice to have, thou i still use my cane when i can.

thanks for all of your support,

blackwolf

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I can relate! I'm in the process of trying to get a wheelchair. It's both exciting to think of the things you can do on your own using these devices (like maybe I won't have to crawl around my house anymore) and upsetting to admit that at our age we have to consider these options.

I recently got a shower chair. I cried when they brought it and there are still times when I have a hard time looking at it (I try not to think about it..I just hop in the shower and use it) but...it has helped me more than I ever thought it would and that is exciting and freeing to me. It's nice that I have a little energy when I get out of the shower instead of the shower zapping all of my energy.

Hang in there! I'm glad you are using the tools you need

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