How Could I Explain All My Conditions In A Nutshell

[Maxine]

Hello---

I'm in a sort of dilemma. My husband belongs to the Swiss Singers choir, and they want us to go to Banff, Canada.

My Husband's Dad was 100% Swiss, and one of the few yodelers in town who sang with them until he retired from it in 1989. He has since passed away in 1997. He played multiple instruments, and sang also. My husband sings, and was invited to sing with them. They have asked him for years, but he never had the time.

Now they have something called the Sanger Fest (spelling?) every three years or so, and this one is in Banff Canada. I'm not able to fly, and my husband doesn't want to go. Even if I wasn't sick, he still feels this is too big of a trip to take after the big year we had with my son's wedding in Oxford Maryland, and the local reception we had at home for those who couldn't travel to MD. We're tapped out. We just can't deal with a big trip, and I couldn't fly there anyway. There is no way to take a train, as a train doesn't go up there. The drive is way to long for both of us to handle. This would be the first trip with the group, and it's just too big to handle.

How do we convince these people? We try to explain my illness to them, but it's terribly difficult to try to explain how my illnesses interrelate. If I had POTs alone, EDS alone, or the spine instability alone it might be easier------but I have all three in addition to other affects EDS has on my health----SUCH as the way it's affecting my intestines-----(which I didn't find out until early this year.) I always look OK---But I'm not. If I'm not in bed that day, I'm moving around as much as possible to keep the muscles toned, and the blood moving. I can do this at home, because I have the option of laying down whenever I need to. I have to deal with a lot every day, but it doesn't show on the outside. I struggle just to sit up. We all know what POTs does, and I have other issues, not to mention a lot of daily PAIN. They keep asking my husband to go on this trip, and he has told them about my illness the best he can for someone who is not medically literate. I have to give him credit, as he has learned quite a lot, but he's not great at conveying the information very well--------he gets things mixed up.

I dread explaining it, as I have become fairly literate in the medical terminology world, and I always explain it in more simple terms, but you can't help throwing in a few words people don't understand.

You all know how it can be, as it can be taken like we are obsessed-------RATHER then educated on a rare medical condition because we have no choice if we want to advocate for ourselves to get the proper medical treatment.

I hear the same stories over and over again on anyone who has these kinds of disorders when they try to explain it to others----both medical professionals, and non professionals, family friends ect.

FRANKLY, I get sick of explaining, then getting the old, (your trying to sell me a kirby vaccuum cleaner look). I've become so cynical from the countless dismissive attitudes, that I want to throw up in my mouth. Meanwhile, I continue to take the high road, and keep the brave smiley face when people don't understand--------(but I'm thinking in my head what an idiot they are). I know my husband wishes we didn't have all this stress around, then he might feel more up to the BIG trip. It's not just the stress from my illness, but stress from work, and the stress of trying to survive this economy. He just returned to work today after taking stress leave for two weeks due to unbelievable harrassment from route inspections at work. I swear this has made him think about working on his Master's degree to give himself something to fall back on. He has his bachelor's in Accounting, but makes more $$$ with the post office as a letter carrier, and has good medical benefits---(extremely poor dental though--- ). If he gets his CPA or Masters this will give him more options. He is majorly stressed, and already works two jobs. During Tax season, he does taxes. He comes home after working 10 hours on some days, then has to get in dress clothes to go do taxes. It's been difficult at times since I lost my income, and had to go on disability.

He wants this singing group to be a positive outlet for him, and it gets us both out of the house, but these folks won't leave him alone about this trip. Meanwhile I have two more trips to Cincinnati to EDS doc, and orthopedic surgeon.

He continues to tell these people he doesn't want to go this time, and they continue to make him feel guilty. My husband used to sing with his Dad, and he's been in a few shows, but he never has had the time to continue. Now he has an opportunity to be in this group, but it looks like a lot of strings are attached. They all knew his Dad, and a lot of them are older folks. They were excited to have his son join the group, but don't get the clue we can't make THIS trip. We told them that it's probable we would make other trips, but not this particular one.

Any thoughts on what to tell these people to make them understand how difficult it is to do something like this with my illness? They won't believe my husband about his own reasons---- Maybe they will leave him alone if he can make them understand how traveling affects us who have ANS dysfunction, and other illness.

Maxine :0)

[yogini]

Hi maxine,

That's so frustrating! I don't think you even owe them an explanation or any info about your condition. There are some people that do get it, and others that just don't. It sounds like some of these people fall into the latter category. Can you just say your doctors won't allow you to travel? Or that you can't afford it or that you have another commitment at that time?

[Maxine]

There is fund rasing going on, so even if we can't fully afford it, they tell us that they will help us---

They don't want to let it go.

Maxine :0)

[Ernie]

Hi Maxine,

I would just tell them:

We have personal reasons which don't permit us to do this trip with you and we are not willing to discuss it.

Then you stick to your guns!

[Sophia3]

Maxine,

PLEASE listen to me.

JUST SAY NO. PERIOD.

You do NOT OWE these people long winded excuses. Your husband has had a stressful year as have you. The physical toll is not worth the risk.

I have no problem saying NO. I have missed weddings to attend the reception with a big band of a late relative..and when that relative died, I went to the visitation but not the early morning Funeral in a warm crowded church. I went to the gathering after the funeral and nobody noticed my absence due to their own grief.

So, I am not people pleaser and after 18 years of this, I JUST SAY NO.

Doesn't matter the CAUSE or whatever. My brother has OFFERED to to FLY me across the country to visit for years but I just can NOT do it.

End of story.

[yogini]

Have you seen the movie "Young At Heart"? It's a critically acclaimd documentary about a senior citizen's chorus that travels around singing pop/rock music. The seniors live for their singing - some are on their last legs and they literally risk their lives to be in the chorus. The funniest part is that there are only a couple of people int the group that can sing in tune and remember the words - maybe that's why they want your husband so bad...LOL!!! Anyway, your post just reminded me of that movie, which I loved. You might get a kick out of it...

Anyway, I agree with the others - stand firm. Good luck!

[Bella127]

Maxine,

First of all, I'm sorry that these people can't seem to stop hounding you or your husband about this trip! Your family is obviously going through a stressful time, much less your health doesn't need the extra "weight" of worrying about how to get these people off your back...jeez!!! The last thing you need when you're unhealthy is people wondering why you/your family are not able to go and do things (wow, maybe it's because I have difficulty even showering??!)...ughhh it is so frustrating.

I definitely agree with the "just say no" approach. Obviously you have tried this and they are just a very hard-headed group! I would say something like "I'm sorry you don't understand. As we have already discussed, we will not be able to make it this time, and I would not like to discuss this any further." And hope they leave it at that. It seems like NO amount of explaining/validating your reasoning to them will get through their thick skulls...and of course, you are not obligated to validate your illness to them. Some people will just never understand, and as frustrating as that is, the only thing we can do is "accept" it, learn that not everyone will "get it", and not let it bother us/get in the way of our health. I'm still working on doing this myself! Trust me, I've explained things to people until I am blue in the face, have given them literature, brochures, definitions, etc. and yet, I get the blank stare back (always a shocker)

The last thing your husband should feel is guilty after it seems he works so hard for your family. I know it's hurtful when others don't understand and when they question you, etc., but try not to let it get to you...easier said than done, I know. You and your husband are making the decision that is best for both you and your family at this time, and that's it. It's your life, and you know best what you can and cannot handle at the moment, and don't let them tell you different. If these people bring up the topic again, I would change the subject. Just like that. Talk about ANYTHING else, as if you didn't hear them - and have your husband do the same. Eventually they should get the hint!

Is there any way your husband could get together with these people for just a short time, maybe to have lunch or something and catch up? I don't know if your husband has that kind of relationship with these people or is close enough to them for that, but I say this only because maybe spending time with them that way would be sufficient, and a way for your hubby to still stay connected to them/not feel out of the loop even when he can't always participate.

Hope this helps....keep us posted.

Chrissy

[Maxine]

Thank you for your support, I appreciate that---

We have told these people NO so many times. Tonight my husband is going to practice alone this time, as I'm not in any mood to keep answering their question on WHY? My husband has told them he simply doesn't WANT to go with no explaination. He's also given them his reasons, and when they had a little mini concert on Sunday he talked about my illness with a couple people. We'll see if they bug him again tonight.

This illness is hard to understand--------------and it's difficult to believe it myself sometimes.

Maxine :0)

[Miriam Poorman-Knox]

My husband is a Bagpiper..... and in a band. The understanding is he can practice, comets etc...if he can, schedule permits. They know I am not able to participate in band activities... I have been able to attend a couple performances. These are great people. Mark tells them I really like them but have to make last minute decisions about any activity. As for your husband, I might suggest "If you want me, I need you to respect my decisions. When I can't I can't. I also agree that no explanation necessary. And these are friends so to keep the social aspect this might help? Miriam

[mom4cem]

You tried explaining. Some just don't get it and never will. The severity of any illness that someone has can't always be explained. Not everyone is or reacts the same.

They will just have to accept it, and I'm sure they will. They are excited and probably just can't control themselves.

I've given up on explaining. Day to day I change good, bad and in-between. So I think some people just think I use it as an excuse. Believe me, there are things I would love to do rather than sit home and take an extra hit of beta blocker!! Sure you are the same.

Ask them if it's possible they can have someone videotape them so you both will be able to enjoy it later on.

[Troy]

If your feeling courageous then just send them an email with this link...... http://dinet.ipbhost.com/index.php?showtopic=11046

If your not then just send them this one... http://www.dinet.org/

if they really care then they can just read it for themselves instead of you having to explain the reason.