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Old 04-04-2011, 09:07 AM   #1
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My friends still don't get it

With the weather getting nicer I'm starting to get emails and calls from old friends and co-workers. "Let's get together for lunch" or "Let's meet for a couple of beers some evening". I tell them "I really don't think it's going to work. it's getting much harder for me to get out". Their reply is always "Oh come on! What else have you got to do? You're retired!".

Even after I explain to them that it's just too hard these days and that I feel unsafe, exhausted and vulnerable going out they still put pressure on me. I realize they don't know what it feels like to be in a body that doesn't work, but I wish they'd try a bitter harder to understand. I also realize that they probably do miss me and want to help out by including me.

But I feel like they're secretly feeling like I've gotten lazy or become a party-pooper when I turn them down.

I don't succumb to the pressure. But I'm a little mad that now I'm in a situation where I feel guilty.

Still keeping my spirits up but I just needed to vent on the subject.

Mark

 
Old 04-04-2011, 05:44 PM   #2
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Re: My friends still don't get it

Hey Mark,

I think I may be lucky, as my friends all seem to understand. When we go out, they are always very conscientious, and help me out whenever they can and in whichever way they may need to. I am, however, not in the mood to be around people right now. I really just want to be left alone, and stay at home curled up into a little ball in a corner. I have, over the past years, developed a pretty strong case of social anxiety, I have a really hard time going places if I have to meet new people. Being out in public bothers me less than going to a private party where there are people I may not know etc. I will do anything to avoid those situations including faking headaches etc. Anyway I am getting off topic here.

Have you thought about asking them to come to your house?

P

 
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Old 04-05-2011, 09:59 AM   #3
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Re: My friends still don't get it

Oops. My bad! Let me make it clear...these are wonderful people. They have no problem helping me....unloading my scooter, lifting me out of a chair or booth. They do all of that and they're happy to.

I didn't mean to imply that they don't realize my limitations.

The real problem is mostly me...I'm just not in the mood to expend the energy or risk falling. I guess it's more me than them. They've been a great bunch. They just don't understand that I'm scared and usually too tired. And i guess I can't expect them to. They're in healthy energetic bodies.

It's not their fault. It's the stupid MD. Mostly I'm venting about that.

PS - My true friends do stop over at my house once in a while. There's even a few that help haul me and my equipment up north for a camping weekend each July. Hats off to them......Jerry, Tom, Kurt, Dave, Scott & Dale.

 
Old 04-05-2011, 10:05 AM   #4
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Re: My friends still don't get it

next time they want to go out for lunch, why not invite them over to your house and get a pizza delivered! That way you can socialize, and not deplete all your energy!

 
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Old 04-06-2011, 12:33 AM   #5
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Re: My friends still don't get it

Hi M

I know exactly what you mean. Although I'm an outgoing person I don't feel like going out. I want to go out but I don't want to go through the hassle of going out. There is so man factors to take into consideration when you go out and the biggest problem for me is bathrooms - I cannot use them without help and I mean who wants help to a bathroom?

I also feel like a burden sometimes and then I feel guilty. I have to admit when I was still healthy I socialised with a person who was disabled and I thought I understood the limitations and had the compassion but I didn't REALLY understand till I landed in the same situation.

We cannot expect an outsider to understand how we feel. They think they are there to help, like I would have if I had a friend with MD, but it goes way beyond being pushed in a wheelchair to some place.

My boys always complain that I don't want to do new things and even they who live with me don’t understand this. I do make an effort to please them and I have to admit in the end I enjoy myself even though I cannot drink anything : )

People also don’t understand that I feel embarrassed to be helped and to be looked at. I'm not a pensioner that you expect to be helped but a young woman having to hold on to something or sit in something just to move.

I'm going to a friend’s house tomorrow and even today I feel like I have to make plans to get from the car to her lounge without falling. She knows by now how to help me but I am getting weaker and even though she has a bathroom that I can use the word "can" has to be changed to "could"

I could write a book (that I am doing) about all the problems we have on a day to day basis just to go have a drink somewhere.

Looking out the window South Africa has a nice summer's day today that I should enjoy before winter places me in a permanent position on my couch.

I would've love to have a supper with all of you as I'm sure we would have a lovely time together ordering pizzas

 
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Old 04-06-2011, 11:13 AM   #6
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Re: My friends still don't get it

Mandy,

It's like you are inside my head. You said it all.

I would truly love to go out and have 3 or 4 beers with my old friends. (I never did drink in excess). But using the bathroom is so stressful and exhausting. I don't even have a beer at home anymore because of it. I realize it's even harder on women. I can't imagine.

Well.....CHEERS to all!

Mark

 
Old 04-25-2011, 06:17 AM   #7
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Re: My friends still don't get it

Mark, sorry to hear your frustration. Of all people you are the one that is always there for us. I can almost always expect a reply from you when I am frustrated. People don't always understand. I have a boss, a DDS believe it or not, who constantly is telling me that I need to exercise to strengthen my muscles and doesn't seem to understand that my muscles are weakening despite strenous excercise. I have been critizied for not keeping up with them when we are going places. Recently, we went out for lunch several blocks away. I tried to hard to keep up with everyone that I fell and unfortunately could not get up on my own. My co-workers had to lift me up. You would think she would understand.

Marlene

 
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Old 04-25-2011, 08:57 AM   #8
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Re: My friends still don't get it

Quote:
Originally Posted by Monnie45 View Post
Mark, sorry to hear your frustration. Of all people you are the one that is always there for us. I can almost always expect a reply from you when I am frustrated. People don't always understand. I have a boss, a DDS believe it or not, who constantly is telling me that I need to exercise to strengthen my muscles and doesn't seem to understand that my muscles are weakening despite strenous excercise. I have been critizied for not keeping up with them when we are going places. Recently, we went out for lunch several blocks away. I tried to hard to keep up with everyone that I fell and unfortunately could not get up on my own. My co-workers had to lift me up. You would think she would understand.

Marlene
Hi Marlene,

You have mentioned your boss before. I CANNOT believe the she STILL doesn't understand. Does she drill people's teeth without Novocain as well?! Apparently she's one of those who is incapable of sympathy until it happens to her then she would want the whole world to stop. (Not that I want that to happen...never). But I've met the type all to often.

Thank for the kind words. And hang in there!

Mark

 
Old 04-25-2011, 09:03 AM   #9
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Re: My friends still don't get it

Surprisingly enough, she is a great dentist. She gives a local before administering anesthesia so you don't even feel the needle. Surprising, isn't it.

 
Old 04-26-2011, 10:37 AM   #10
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Re: My friends still don't get it

Hi Marlene,
I'm sure she's a very good dentist. I'm guessing that she just doesn't know how to handle your situation. I was very fortunate. My adult friends, boss and co-workers all seemed to be very compassionate and understanding when I told them I had MD. There was never any insinuation that I was lazy or that I was to blame.

Still they are always asking me to meet for lunch or meet them after work when it's SO much harder the past year or so.....not their fault of course.

I just get really emotionally affected when I hear stories of MD patients being persecuted. I had it REALLY rough in junior high and high school. Especially in gym class. It was a nightmare for me. I was just bad enough to look really out of shape (but not sick) and I was laughed at a lot. Thank goodness those days are LONG over and many of my old classmates now know the true reason.

Last edited by michigani; 04-26-2011 at 10:38 AM.

 
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Old 04-30-2011, 02:32 PM   #11
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Re: My friends still don't get it

I think your idea is a great one. It would be nice if the guest also brought the goodies to eat and drink. That's my favorite kind of company, the one who does the work for me. I have a few friends who are kind enough to do this for me.

 
Old 05-15-2011, 04:53 PM   #12
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Re: My friends still don't get it

Mark,
I am new to this site but have read so many posts and they all sound like I wrote them.I to have a hard time with people not understanding my problems. I can walk but I can't do stairs and I can't get out of most chairs when I have to sit like at a dinner or a show I can't enjoy myself because I'm freaked out about getting up. Now at least I know there are people that understand so I'm not alone. Thanks Dreaman

 
Old 05-16-2011, 10:48 AM   #13
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Update: My friends still don't get it

Dreaman,

I remember well, about 7-8 years ago, when I was still using a cane, I would go out to eat and the minute I sat down in a booth or at a table I was already worrying about getting up because I knew it would be very difficult and a spectacle for the whole restaurant.

Anyway.....Back to my update: I met 2 of my old co-workers for lunch last week. My family loaded my scooter in the morning. I have a rack with a built in folding ramp. I drove myself to the restaurant, about 20 miles away, and my friends were waiting outside. They unloaded my scooter and I was able to use that. It worked out really well and we had a good visit. They loaded the scooter after lunch and I headed home where my family unloaded it. Nobody seemed to mind a bit.

By the way, I use an UpEasy seat cushion on my scooter seat.

The only 2 issues are: 1, the weather must be sunny and warm. 2. I still can't drink much fluid because the restroom situation is still very scary and often not do-able. So I end up getting dehydrated until I get back home.

Mark

 
Old 05-16-2011, 08:16 PM   #14
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Re: Update: My friends still don't get it

Mark,
Glad it worked out for you, except for the bathroom part.
Terry

 
Old 05-16-2011, 08:50 PM   #15
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Re: Update: My friends still don't get it

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Originally Posted by michigani View Post
Dreaman,

I remember well, about 7-8 years ago, when I was still using a cane, I would go out to eat and the minute I sat down in a booth or at a table I was already worrying about getting up because I knew it would be very difficult and a spectacle for the whole restaurant.

Anyway.....Back to my update: I met 2 of my old co-workers for lunch last week. My family loaded my scooter in the morning. I have a rack with a built in folding ramp. I drove myself to the restaurant, about 20 miles away, and my friends were waiting outside. They unloaded my scooter and I was able to use that. It worked out really well and we had a good visit. They loaded the scooter after lunch and I headed home where my family unloaded it. Nobody seemed to mind a bit.

By the way, I use an UpEasy seat cushion on my scooter seat.

The only 2 issues are: 1, the weather must be sunny and warm. 2. I still can't drink much fluid because the restroom situation is still very scary and often not do-able. So I end up getting dehydrated until I get back home.

Mark
Thats great to have all that help. I do have a scooter but I can walk most of the time(with crutch help) so then I feel like a hipocrite and people don't understand how you can stand and walk but can't sit and get up.
I also have the bathroom problem. Most that say they are handicap accessable aren't.So to go out like you said you need to quit drinking ahead of time and hope for the best. Any way hang in there Dreaman

 
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