Missed Another Wedding

I missed a friend's wedding today. Too sick to go. And I feel like she doesn't really get it. So many people around me don't understand that I really have a hard time with driving and parking. And large crowds and noise and all that. They just keep expecting me to act like a healthy person and I can't.

I have sound sensitivity, and when my friend told me about the music she was going to have playing at the wedding and reception, it sounded like torture to me. There was no way I could sit through that. And the flowers filling the church and everyone's perfume. And the whole sensory overload thing. Just no way.

On top of that, they expected me to drive myself there and find parking, and I can't physically walk for ten blocks. I can't even make it half a block. The POTS tachycardia is really severe. And she even said to me, well you know the first ten spots are reserved for the wedding party, so you'll just have to find parking some place else. And then I was supposed to drive myself over to the place they were having the reception at that also had no parking. Impossible.

Even if I had had the money for a cab, which I didn't, the sensory overload of being around a hundred people with the music and the flowers and everything else would have killed me. So, I didn't go. And a part of me feels like I should apologize for missing it, but another part of me feels like if they had really wanted me there, they would have understood how sick I am and at the very least offered to have someone drive me. But there is no understanding. I still would have declined, even if they had offered, but at least I would have felt like someone understood.

I am barely driving now. I was not driving for three years prior to my mother's death because I was too sick to do so. After she died, I had no choice, but that doesn't mean I belong behind a wheel of a car. My depth perception is off and I can't park on city streets. I can only park in a regular lot in a handicapped spot. I go to the store twice a month, rarely go out another time for an odd errand like a prescrip refill or doc's visit and it has to be really close to home. And when I get home, I pay for that trip in spades with severe pain, fatigue, sensory overload, and a flare up for days.

I'm working on getting disabled busing, which I hope I can get. I can't afford to keep the car beyond this year. The mechanic already told me he won't pass it at the next inspection without alot of money and I don't have it. And I'm not well enough to get stuck anywhere anyway. My other friend keeps saying to simply take the car to another mechanic. She doesn't get it that I just can't do this anymore and I can't afford it as well.

I'm just so tired of people not understanding that I'm really not well. Even when they say they do, they don't. Even when it's right in their face that I can't do things, they just don't get it. They see that I can't even drive to their house anymore. They still don't get it. For some reason they just want to believe that I'm better than I am and I'm not. In fact, I'm worse than even I believe sometimes. I'll think I can do something and really believe I can, but then when I try to do it, I can't. The disease is deceptive.

Anyway, I don't miss events because I want to, I miss them because I am not well enough to go. And no one gets that. They just don't. I can't turn off the disease every time people want me to be somewhere. It doesn't work that way. There is no off switch. I can't just flip a switch and be healthy for everyone. I can't turn off the millions of symptoms. I can't make the vertigo or the lightheadedness or the sensory overload problems go away. It would be nice if I could, but I can't. I don't know why people can't get it through their heads that asking that is like asking a person in a wheelchair to suddenly get up and walk or a blind person to suddenly start seeing. It just doesn't work that way. I'm just as disabled, I just don't look it on the outside.


Oh Carrigon! I wish I was close by to give you a very light, gentle, perfume-less hug. I understand that you want to and can't. Been there and am currently 'there' myself. I think I have lost every girlfriend for the most part and many in my family. The few that 'get it', know that I want to be invited but don't count on me. I think it is difficult to understand what someone with our illness goes through because we don't 'look' sick. Don't beat yourself up, save your energy for yourself. Rest, rest, rest. I noticed what time you posted. Do you use any sleep meds, even natural ones? I am on 40mg of Doxepin at night and it works very well. I try to get at least 10 hours. But I also know that when one is in a flare, no amount of sleep seems to work. My thoughts, heart and prayers are with you, you wonderful, fine, courageous person!

I take a tylenol/butalbital combo when I really need sleep and to calm the nerve pain. But I don't sleep a full night, ever. I sleep a few hours, then I'm up awhile, then I go back to sleep. I haven't been able to regulate my sleeping in like almost twenty years.

I'll tell you what's got me sad. They didn't call me to ask if I was okay or alive. They know I'm alone, they know I'm sick. It didn't even occur to them to check and see if something happened to me and that's why I didn't show up. Like I could be dead or in the hospital and they didn't even bother to call. Glad I'm not, but it's the principal of it.
i know that feeling all to well too, none of my Friends and family that know im sick ever check on me.
my daughter is the only one, ad i thank god for her every day.
we all need someone, even if it's just one person to understand how we feel and to validate the fact that we are Truly SICK! i Know it dosen't replace a Good friend
or a Family Member, But were here Carrigon:) i hate that you are going thru this. but it's a sad Fact of life for a lot of us on here.

So sorry to hear you had to miss your friend's wedding. I understand how you feel. It's very hard for people to get it. I know how much it hurts. I am sorry you are having such a rough time.

The good thing; they keep asking you. When people stop asking is when they stop caring. I know what it feels like to want people to understand this. The reality is; they can't. I don't even think I could if it wasn't for the fact that I have it.

My point is; I am glad they ask you instead of completely ignoring you, because they know you are sick...they just don't get it.
Carrigon, I completely relate to your story. (I am still able to drive though, which I am VERY grateful for).

Might I suggest emailing your newly married friend the link to Teej's video? Even the couple of people in my life that "get it" came away with a different level of understanding.

If nothing else, you'll have the feeling of advocating for yourself with no more energy expended than sending the email.

Hang it there. Sending you a scent free, pain free hug.

I think I've lost this friend. I sent her an apology message for missing her wedding, she never answered me in almost a week and she's been online and to where I sent the message. She didn't bother to call me either. But she has no trouble talking to all of her healthy friends. So I guess I'm just out. Last friend in the real world, too, except for her mother, and I don't know how she feels about me now that I didn't go to the wedding. It's not a good feeling to be this alone in the world. Totally and utterly alone. This really sux.

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