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How to Deal with the public


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Last night I went to orchestra for the second time since SAH. I had told my section leader that I'd need my own stand, Sit in the back, and leave at break-time which is 1/2 way through. However, This old woman-cellist that I've never seen asked if she could look over my shoulder since she didn't bring her own music that night. I told her no because I have issues and need my own space. She said, 'Well I have issues' and looked down at her arm in a cast. Then I felt like I had to tell this total stranger that I had a stroke and I can't have extra stimulation. She looked at me and said, "you're too young for a stroke." I said, 'Yes'. Then she said, "Well, I'm glad you're over it." I said, "I am not over it!...it's like saying-I see you've gotten your cast, I'm glad you're over it, now." She moved to another location finally.

It's so hard to deal with people who didn't see what you've gone through to get where you are today. Such a long hard road...and they just seem to think that when you're released from the hospital, you're 'Cured'. However, I feel like I wish I could handle it better when it comes up.

It's like Win's story with the bumped head at the doctor's office. Health professionals are sometimes the worst!

What do you do or say?

~Kris

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Hi Kris,

I think you handled it well. You explained your situation nicely and if she doesn't get it then tough. With an SAH, we've learned life is short right? I don't have time for people who don't care or understand. I will tell them nicely at first and then I'm done. There's a saying called "keep it movin". Anyone heard it? It means if you don't have something positive to say, then get out of my space. Nice and simple. You did fine Kris.

David

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Welcome to the world of ignorance which is so sad, but you explained it well when she said your too young i would have said aw thank-you for that, it can happen to people much younger than me you know....

but please dont let a little thing like that put you off going places it improves over time honestly....

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There are days, not many mind you, where I wish I had a package of alka seltzer. When people are inconciderate and presume everything is ok, just pop one of those in my mouth and froth away for a few minutes, roll my eyes a little then shake my head and say. Wow I am all better.

I think you did amazing. What we really need is a business card with the side effects on it. That way we dont have to explain everything to everyone.

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  • 3 weeks later...

One of the reasons I liked to have a cane around is that while I was still in that "no one come near me because you might knock me over" stage it was a signal that something was wrong and I needed space. It is hard to come out and tell people but I think you did the right thing. You advocated for yourself and got what you needed. She may have been ticked, but so what? She'll live!

I'm back teaching and it's hard with my new kids because they know what happened, but don't really understand. They didn't experience me any differently than I am now. Today I had a horrible headache and was feeling pretty blech. I explained that I had a headache and I'd try not to be cranky, but they could help by keeping the noise down. My returning students were great. They understand. The new kids don't. Can't blame them, they're kids, but it is hard to get them to understand it's not "just a headache" it's "A MOTHER FREAKING BULLY OF A HEADACHE".

Just keep educatin' 'em, I guess.

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Hi All

I still find it vey difficult to find the words to descibe how I feel.

If I say I am tired whoever I am speaking to usually retorts "yes,,,me to"

I don't want to fully explain what I mean and how it is different from their tiredness because it would drain me too much thinking of the words to use to describe it!!

So I just shut up and give a wry smile and think to myself"they have no idea!"

Its the same with sensory overload working in an office with bright strip lighting, lots of noise like being in a swimming pool and then trying to concentrate on complex problems. All too much but people just think its whingeing to ask for a bit of quite of turn the lights lower.

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Diduck--I would highly suggest sunglasses and ear plugs. Even just a set of ear buds without music going into them. When I went back to work teaching I wore sunglasses all the time. Still do, sometimes. If I didn't have them on, everyone knew I was feeling better. If they were or are on, they knew I was having a hard day.

Instead of saying "I'm tired" I say "I'm struggling today" and with my students, "Zombies are eating my brain." I even refer to my headaches as "Spidey" (because it used to feel like spiders were crawling over my brain. Using terms that others don't associate with "Me too" really helps because they can't say "I have Spidey too." It also cuts down on "Have you tried Excedrin?" I joke now "Look, I've tried everything short of meth...trust me."

Last school year I actually would put a slide in my daily PowerPoint of agenda and announcements, a barometer of how I was feeling so the kids knew. I feel very strongly you have to advocate for yourself and if you can find humorous, but specific ways to do so it's better.

Of course there are some who won't get it. I have a local client who is just "different" and felt it was her personal responsibility to find a "cure" for me. EVERY day she'd send me information, post things to my wall on FB, etc. I finally after saying no less than six times "I have a medical team and I trust them. I know you mean well, but please stop." I had to block her on FB. After a few days of her FREAKING out over it, emailing my husband, texting him "What did I do?" and a long whiney email about how she just wishes something like this would happen to her :crazy::crazy::crazy::crazy: I responded with "I'm sorry, but you aren't getting it. Please just stop."

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I used to wear sung glasses inside all the time. Now only in a big box store occasionally. Also, a hat works great, it shields those overhead lights/sun and I finish whatever I'm doing with a normal feeling instead of major fatigue. I don't know how acceptable hats are inside over where most of you are, but here in the USA, people do it all the time so I don't even feel out of place at all.

~kris

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Glad to hear about you all wearing sunglasses inside. I am never happy with the light. I spent the drought summer inside, finally got sunglasses that go over my new glasses. I hate lights and I hate sunshine now. Sun shine is like a knife in my eyes. My neurologist put me on 400 mg of Vitamin B2 daily last visit. I sometimes walk with my eyes closed which is really not very "bright" of me ( pun intended).

When they did my angiogram someone picked up the scope that was not suppose to ( nice that I was awake and could hear this conversation as well). Anyway it was like Frankenstein movie and the lightening coming in and hitting me in my right eye. I get so tired at times that I am afraid I will close my eyes in a store and walk with them that way.

Glad I am not alone, I thought it was just me.

Maryb

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  • 4 weeks later...

Mary I'm sitting in my office in my classsroom right now with the lights off, hat and sunglasses on. It's not just you. I carry them with me all the time. Yesterday I forgot them, but one of my students left his in my room so I put them on. He said "Hey? Aren't those mine?" I said "Yes, but I have a headache so I'm stealing them for today if that's okay." He was cool with it. They know what happened and are very respectful.

One of my favorite things has always been to turn my face to the sun, close my eyes, and just soak in the rays. Unfortunately I can't do that often any more.

I also walk with my eyes closed! LOL! I thought I was the only one who did that. I also go into the bathroom on my lunch break and turn out the llights because it has no window and gets pitch black. If I can have a few minutes on a bad day, it really helps.

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Oh Teecher~ So happy you walk with your eyes closed as well! I cannot tell you how happy I am! :lol: When I told my Dr. I did that he looked at me like I was crazy!

Hope you are doing well! maryb

After I posted this I was reading under the post ( it was mine about my condition) but I thought it was yours and was like "OMG we had the same thing!!!! How weird is that?????? That is why we cannot see!". :lol::lol::lol::lol:

Guess I am tired!

Edited by MaryB
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Haha Mary! I was thinking of you yesterday. I went out for a run in the morning and the weather changed, bringing with it a LOVELY headache! As I was finishing up my run and on my own block, I found myself closing my eyes and still running. Fortunately there's a path and a bike lane and I did NOT run into traffic!

I know I'm blessed to still be able to run on many days, so I'd better not push it by running with my eyes closed!

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