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4th year anniversary


Ernie
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Hi,

Four years ago today I got acutely sick. Started to faint every time I stood up. I had a busy clientele an active life and many friends. In a couple of months I lost all my clients because I could not work and they found someone else and I lost my friends because I could no longer follow them.

65 years olds have a more active and fun life than me! I always thought that I would work until 80 years old. Boy was I wrong!

Yesterday I went shopping with my husband for clothing. It was the first time in 4 years that I was well enough to shop for cloth. (My husband has been doing the shopping all by himself for 4 years). I only went a couple of time in a wheelchair. So yesterday I took the wheelchair. Since it was snowing he drop me off in front of the store and went to park the car. I renewed a lot of my cloth because I was basically wearing the same things for 4 years. When you don't go out who care!

Now that I am a little better I leave the house alone occasionally and I want to look nice.

Our cart was full of clothing and I was pushing the cart and my husband was pushing me in the wheelchair. I don't have the muscle strength to push myself. When we got the the dressing room he asked for the disabled dressing room. The last client in line up looks at me and says: "The end of the line is after me!!" I answered: "I am disabled". She said: "I did not realise that". I answered while I was sitting in my wheelchair and pointing my wheelchair: "Yeah, it does not show". The employee came to help me with the cart and they wheeled me in the disabled cabin. The client put her hand on my forearm and apologised. I said to her: "It's OK." Then I was wheeled to the cabin and I just felt like crying and crying. It made me feel good that the lady apologised for being rude but my reality was that it was my first big shopping in 4 years, I was showing publicly that I am disabled (being in a wheelchair), and even then I was having a hard time.

N.B.: Here we have a law that says that stores have to have a cabin for disabled clients and we have priority to use them. So the line up did not apply to me because there were no disabled in the cabin.

Today I kind of feel emotionally numb.

Last year I was at Vanderbilt at this time. I am glad to be home now.

P.S.: I reread my post and I have a hard time understanding what I am saying. I hope you will be able to understand me better than I undestand myself today!

Thanks for listening

Ernie

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Hey Ernie,

I think I know what you might be saying. That 4 years after getting sick you finally were able to get out and shop for clothes but you are still having a hard time. And admitting to someone else that you are disabled means you finally have to admit it to yourself. Maybe you are disappointed that you are not further along in recovering.

I'm sure when you first got sick it never would have occured to you that you would still be having a hard time and be sick 4 years later. I know exactly how that feels.

But I think it's great you were able to go out and shop although I know you would have rather walked into the store. And in the 4 years you have been sick you've accomplished more things than many healthy people. Just graduating from university was a major accomplishment considering how sick you felt.

I know what you meant about "65 year olds having more active lives" You and I are about same age and yet our activity level is like a much older person. I think that's something we can all relate to. Young at heart and spirit, old in body.

I have no words of wisdom ( got brain fog again) except to say hang in there and that I understand.

GayleP

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Ernie,

I agree with Gayle. I am sorry you are bumming out, but I think you are justified in being sad on your anniversary. You have a wonderful spirit which has kept you going all this time and I am sure it will help you get through the anniversary.

I am glad that you were able to go shopping after all of these years! I am also happy to hear that you are feeling a little better these days.

-Rita

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Ernie

Thanks for sharing your experience with your first clothing shopping trip in four years. I think you are a courageous person.

I understand how you would feel emotionally numb after an experience like that. Like Gayle said, it put you in a situation where you had to admit openly to the outside world that you are, at least for now, disabled. Also, when you are home a lot, I think it is disorienting at first to go out into public spaces, especially. I know I felt that way--in fact I had this odd feeling like I was an imposter--when I finally started being able to go out places (besides the doctors' offices!). It is also so hard to feel pitied--which is perhaps how the fellow customer made you feel--even though probably she was genuinely apologetic and wanted to express that--not pity.

I hope you are finally at a turning point where you can slowly start to become more active again.

Katherine

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Ernie

Last week for me was a reminder of how cold people can be and even though we've experienced it before it doesn't make it any easier accepting their cruel behavior everytime they do it.

I hope we don't have to wait another decade before the public gets educated on Chronic Illness!

I'm sorry for such a horrible, public experience on your first trip out to shop. On the bright side did you find some nice clothing? I hope your husband was able to give you some support.

Hang in there Ernie, we're all here with you.

steph

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Ernie,

That shopping experience had several layers to it that made it difficult for you. Never when you got sick 4 years ago did you expect to look back now in 2004 and see so many losses as you described in your post. To choose go out to get some clothes because you like to look nice when you do get out meant that you had moved onto a certain level of "acceptance"- wanting to look nice instead of just settling for wearing your older clothes is a sign of moving forward- getting on with your life. To get to such a point takes a lot of spiritual growth.

To actually BE out there in the store knowing that while you pushed the cart and your husband was pushing you probably felt quite surreal to you- strange- new- maybe reminding you that although you had the courage and perserverance to make such a trip it still had elements of sadness because of all the losses- a mixed bag. And here you were doing your best- trying to make the best of your circumstances and you encountered a person who was so invested in herself - a woman so fixed on her own circumstances- a woman who only cared that nobody cut in front of her in the line that she was BLIND to your situation- BLIND - to your wheelchair.

You answered her comment properly and I'm glad that she apologized and that an employee came over to "rescue" you from that woman and that uncomfortable experience. I am also so sorry for the angst that this situation caused you.

It sounds like your shopping cart was full of clothes and I hope that you were able to leave the store - after trying the clothes on- with some nice things that will make you feel good the next time you go out. That was a lousy experience but I think people like that are rare. I think that you will find - as you go out more and more that people in general will be very kind- more than not. It's just too bad that during this big step of you going "out there" such a thing had to happen.

Recently a young neighbor gal- 26 years old- who own the house next to us- someone who I had befriended- someone to whom I have been very kind - a friend and a mother figure to her- she said something very heartless, hurtful, and cruel regarding Nicole's illness and dyautonomia patients in general. My husband and I have experienced some insensitivity from people not "getting it" but this "thing" from the neighbor gal was unbelievable. I don't know what to do with it- what she said to me. I have been mulling it over - trying to get up the energy to vent about it on this forum. Sometimes these things happen- and it's a shock. Mostly people "try" to be kind and understanding. But when someone is cruel - it can feel very violating.

Meanwhile- by reading these posts for you today I have just learned that you have completed college. What a wonderful accomplishment. I do hope- very much- that in time - you find ways to improve your health so that you can get out more and more. I will keep you in my prayers. Take care.

Best wishes,

Beverly

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Hi Ernie,

I think it's very courageous of you to get in your wheelchair and go out shopping. Although it's fun to do such a thing (especially since you didn't go out shopping for clothes for such a long time) it's also vey exhausting AND takes courage to show to the world you're in a wheelchair. I'm proud of you you took this decision because otherwise you couldn't have done this. And Ernie, 4 years is a long time. I think no one of us could have thought never to be the same again when we first got sick (does this make sence?). I'm sorry it happened to you as well. Have a relaxing day today, take care, ;)

Corina

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Ernie, I am so proud for you that you got out and did something really nice for yourself. I hope some of the clothes in your cart fit! Funny how sometimes a new outfit or even a haircut can make us feel a little better. Please don't let the rude person spoil the outing for you. I can almost promise that she went home and continued to think how rude it was...speaking without thinking most likely...otherwise how could she have missed the wheelchair. The fact that she apologized when she realized her mistake is refreshing. Anyway, it was a big step for you to go out and I hope you will do it again.

I became ill 5 years ago but it was 4 years ago this past Thursday that I was diagnosed. I still remember that day so well and asking, OK, now that we know what it is that is wrong with me, what do we do? I have a life to get back to! Anniversaries are really difficult emotionally.

Ernie, I hope that you have a better week ahead and just remember how much you have accomplished in the last 4 years. It is truly amazing to me.

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Guest tearose

Hello Ernie,

Thank you for taking the time to share this painful experience with us. I wish I could take away the hurt. I can't believe people can be so self absorbed as to not see what is before them. Not that you need to advertise your challenges but you were in a wheelchair! Please don't let this incident interrupt your progress.

I am so proud of you for getting out and in the snow too. I am so happy that you were able to do some shopping for yourself. What next? A trip to the beauty parlor?

I am also thinking about what you said about your 4 year anniversary...nothing can take away the sadness of letting go of what we had. We all have to go there once in awhile.

I came up with an alternative anniversary idea for you to consider. Begin to think about how you want to celebrate on February 3rd, 2005. That is the anniversary of the day you joined this forum! We can't change the onset date of our dysautonomia but we can certainly celebrate the courage and strength it took for us to reach out and reach to each other. Maybe we can begin to celebrate our "member anniversary day"!

Just wishing you the best, tearose

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Dear Ernie,

That's great you got out to shop a little --which can be a culture shock if you haven't been for a while --that's how my husband knew I was first really ill because I refused to go to the mall. If I do go to the mall anymore I am usually hanging off his arm because I get such bad sensory overload and am quite dizzy. I don't know what that woman was thinking when she said that to you. Thank goodness there are generally really nice people in the world who will help you in times of need. I hope you continue to make progress. Martha

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Ernie, glad you got out to do some shopping. I hope you got some nice outfits. About the rude self absorbed lady...well a lot of people seem to get like that around the holidays. It can be such a stressful time!!!! I bet she feels really bad about what she said. I am sure it felt awful when she said it, when it took a lot of courage to get out.

Like you since I have become ill (3 1/2 yrs), I really no longer have friends. My closest friends moved away and the others have disappeared. I do not really ahve the energy to socialize, I save all that I have for my kids. From being ill, I feel like I have developed a social phobia. To many bad experiances have happened around others and it gets harder and harder to reach out. I wonder how many others feel this way.

Dawn

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Ernie -- just saw your post ... I want to join the others in expressing some sadness over what sounds like a difficult afternoon ... but I also want to join in their praise and good wishes ... You did it! Yes, you needed to awaken someone from their sleepwalking (people do just sort of drift in this crazy shopping season, as if blinded to the realities around them) ... I too hope you found something fun and festive to wear--and that when you do put on something new, you'll put on a new you as well and don't think about the circumstances in the dressing room!

Hey, here's a poem for you. (I just reminded myself of it ... I love it--this poem has obviously become a part of me!)

Purchase

I like the smell of new clothes,

The novel aroma of challenge.

This dress has no past

Linked with regretful memories

To taint it,

Only a future as hopeful

As my own.

I can say of an old garment

Laid away in a trunk:

"This lace I wore on that day when. . . ."

But I prefer the new scent

Of a garment unworn,

Untainted like the new self

That I become

When I first wear it.

by Naomi Long Madgett

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Hi,

I just came home after visiting the only friend I have left. She is the one that drives me to all my doctors visit. I am glad I did not stay alone at home because I wanted to have my mind off this anniversary.

I am amazed at what everyone of you wrote me. You are all so very generous and understanding. I read every answer and I will answer each one of you personaly (in this post) tomorrow when I feel better. I want to thank you before going to bed.

Ernie

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Ernie

Don't think of it as the anniversary of when you got sick, more like the anniversary when you made true friends :)

Four years ago you were starting on a journey of strength, character and the unusual challenges of life that hopefully make us tougher and better individually.

Hope you understand what I'm trying to say.

;) steph

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Ernie,

I need to post quickly because I need to get to work.

However, I must say I'm sorry about the rudeness you got from the store clerk. POTS is a pretty invisible illness, and some people aren't able to realize that you don't need to be crippled to be disabled or need a wheelchair. This is the kind of thing they should teach in school!

A good friend of mine is in a wheelchair, and I once took her shopping, only to find out how insensitive some people can be. When she stood to try on clothes (which she can do for a couple minutes) she got a nasty comment from another shopper and I just remember being so furious. Lara is a shoe fiend, and has a whole closet full of hundreds of shoes. While I wanted to punch the women, Lara laughed and told her that she didn't really need a wheelchair (and pointed to whatever designer shoe she had on that day) but she just didn't want to get her shoes dirty.

She's told me that some people will never get it, so you might as well have fun with them. I know I could never be that way, but I'll still never forget that day.

Good luck and congratulations on your degree. What an accomplishment!

B'Ahavah,

Ayelet

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HI!

I just want to say that I so understand your frustration! I know that when I attempt to go and do something like a trip to the mall all though I am happy that I did it it is so hard to realize how hard it is. And it always comes as a bit of a shock. You feel like you have the energy that day to go out and do a little more but then you start to fell worse and worse and it is so frustrating because you think why can't I do this even? And then everyone is so excited that you did this and it is but how awful you feel is so frustrating and dis-heartenening (not sure how to spell that or if it is even a word so I hope you know waht I mean). But you will try again and overall it was a triumph but I know exactly how you feel. And then to have some one be rude on top of it is just the worst. But she did apologize and hopefully you got some fancy new clothes. The passing of the years so hard I know but you have gotten this far and that is a thing to be happy about it . At least I try and tell myself that. Of course a few days after the anniversary has passed. I guess I just wanted you to know that I understand I have felt the same way and that you have people who support you!

Stacey

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Sorry for taking so long to answer. I had written the answer and then I hit a button and lost everything. I was so frustrated and needed to calm down before rewriting.

I feel much better today because “the day” is over and because you helped me see other things in life.

Hi Gayle,

You are right on the dot. Yes, yes, yes, I would be further along in recovery. As a matter of fact I would like to be cured but my reality is different.

Katherine,

It is very hard to admit openly that I am disabled and I have decided that if I want to have an active life I have to do so. In a way I feel like an inposter because when I am at home I don’t use the wheelchair because I can lay on the floor or I can take all the time I need to recuperate when I faint. It’s funny how we think sometimes!

Rita,

Thanks for telling me a have a wonderful spirit. It’s nice to see how other people perceive us.

Steph,

I did find some nice clothes! I bought a coat with a fur lining. You know how cold it gets here in the winter –35 F. I am cant of eager to see if the coat will help me out but I can wait a few more weeks before the temperature gets low enough. I hope that with this coat I will be more cold tolerant. My husband got a suit. Yeah, I am getting a “character”.

Beverly,

When I started to get acutely sick 4 years ago I though I would be cured in 2 weeks, then 6 months, then I did not know anymore. Thanks for making me realise that I made another step. You are very insightful.

Corina,

You are right. I could have never done that without the wheelchair. My husband what happy that we were able to go out together and not have any “incident”. I will try it again!

Geneva,

I remember when I got the POTS diagnosis and the doctor telling me that it was not a fatal disorder. I looked at him meaning: “Do you think that I feel better because I have a normal life expectancy?” There are things like that that we will never forget!

Tearose,

I like the idea about celebrating our member anniversary day. This is something I had to learn, to reach out to the others to ask for help. I had always been the caregiver!

Martha,

I usually meet nice people, at least when I go to doctors’ place. Maybe the woman was stressed out because of the x-mas shopping or other personal issues!

Dawn,

I don’t have social phobia but I am afraid to hurt myself or get mugged if I faint in public. I avoid as much as possible crossing streets alone. Many of my therapists have told me that they don’t want to treat me anymore because of all the syncopes so I am kind of stuck with cancelling at the last minute because I am too sick (and risk being fired) or going and fainting (and risk being fired). In any way I feel I am loosing out because people don’t understand. A month ago I was going to an acupuncturist and I cancelled my appointment 1 hour before the time because I had just fainted at home. He insisted that I find someone to go later during the day. I kept telling him that I had diarrhea and my periods but he was so upset that I was cancelling. I had 2 floors to walk to get to his office and I kept telling him that I would not be able to go up. The following week I was OK but when he did the treatment he triggered an adrenaline rush. I told him that I was not able to walk to my car but he insisted that I leave his house. So I fainted down the street. He told me that it was because I got up too fast! So when I went to see him the week after he asked me to cancel 24 hours ahead of time. Yeah, sure, as if I am going to know 24 hours ahead of time when I am going to faint. So I stopped going to see him.

Merrill,

Thanks for the nice poem. You just made me realise that I kept some cloth because of the emotional souvenir. For example, one dress I keep because this is the one I used to wear when I went to ballroom dancing. Guess what, I was able to throw away a full garbage bag of cloth after reading your poem.

Ayelet,

I really like the example you gave me about your friend. I think I will use this line whenever someone says that I can stand. The other day at the store a few people looked at me when they say me stand. Nobody said anything but I could see their surprise in their eyes. Like you said we don’t have to be crippled to be disabled!

Stacey,

When I left the house Saturday morning I thought it would be an easy job since I was in the wheelchair. I was surprised that I had to lay down in my wheelchair and that when I came home I was so exhausted. But I am proud of myself to have succeeded. I got some new clothes!

Good night

Ernie

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Briarrose and Ernie!

Thank you! My friend, Lara, has OI (Osteogenesis Imperfecta; had to look that spelling up :) ), which means that there is not enough collagen in her bones. Her bones break and fracture extremely easily, but from the outside she looks completely healthy. Even though she has had this since she was a child, she often finds it very difficult to face the world in a wheelchair. She is one of the smartest and kindest people I know, so it is just such a shame that some people make false presumptions about her. Ernie, even though it is for a different reason, your situation seems a lot like hers. I'm here if you want or need additional support with this. :)

B'Ahavah,

Ayelet

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