This Is MS Multiple Sclerosis Community: Knowledge & Support

I was at a "hen" party - bachelorette in the US I think - but it was a very quiet affair at a spa and dinner, then a few drinks but nothing mad. I had to go to bed by 11pm, exhausted. I just FEEL so disabled when out with people, and like I'm trying to hide it all....I'm deaf in one ear so I miss most of what people I'm not used to, say. I can't manage high heels anymore, I am so tired after just 2 hours of being with new people, I am a coeliac so I've a special diet, I just feel so problematic and I hate that feeling. Long to be back with people who know me.
Does anyone else feel like this?

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

WW,
Yes, yes, and yes!
My social circle has grown much smaller. This is more comfortable for me, yet a little sad.
I have gone to events that I thought would be a disaster, and I did fine. I have thought I'd be fine and it turned into a disaster. (An ego disaster, at least.)
I have been to business meetings, where speaking (when I HAD to) was hard and I had to concentrate to make sense, and folks thought I was angry. This has happened more than once.
I do best with old high school friends, a limited group of work friends, close family friends, and of course, family.
I am rather quiet by nature (some would argue that) - at least not chatty, so I do well in groups that are full of chatters. Sometimes I get lost in the conversations, but if the others are chatty enough, nobody notices and it doesn't matter.
My social awkwardness has been one of the hardest parts of MS for me to take. Tiredness, not following the conversation, having to concentrate to speak, lack of physical grace (bumping into everything and everybody!!)-it has all been difficult and hard on my self esteem.
When out of my element...It helps to hang out with people who drink so much they don't notice, or if they do, don't remember.
Terry

Just a note that one way I have found to still feel connected socially is to do volunteer work on behalf of people with MS at a local nursing home as a volunteer with a local MS community service organization. Aside from feeling useful (I've been unable to work for a few years now), and providing information and assistance as I'm able, it's been a nice way to feel connected and to interact socially w/o needing to feel embarrassed because of word finding problems, memory issues, word slurring, etc. Everyone understands without my having to say anything.

The other benefit in doing this is that I realize how fortunate I am in many ways. I still have my mobility. I can still use my hands and arms. etc. etc.

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I absolutely know I am fortunate, Questor. I am thankful when I wake up that I can get up, and I am thankful when I go to bed that I have made it another day "mobile".
I do still enjoy seeing friends, but occasionally seeing them makes my MS glaringly obvious to me. It is almost like I can ignore it for the most part but when I am around others, different people than usual, I notice the deficits in me. I think that is what WW was talking about, too.
It is good that you volunteer. I have often thought that I should.
What I thought was that I could run errands for someone while running my own. I have looked to see if I could find that need, but I didn't find anything.
My daughter is having a baby- docs are inducing her labor next Sunday night. She has been recovering from leg blood clots since late June/ early July. I am her nurse. I am her cook. I am her taxi. (Is there a tired emoticon?) Maybe when the baby is here and she heals a bit more I'll look again. I'll let you know if I find something.
Terry

Info on how to use this emoticon and others can be found in the Forums FAQ.

NHE

Thanks Terry, you understand
That's it exactly, I normally don't feel that problematic, or disabled when around those that are used to me, in my normal life. You put me into another situation and I feel like a big walking disabled problem.



It's like as if I wrote this myself. You're spot on. hehe like the advice!


Questor, don't get me wrong, I agree with you on this. I wasn't having a pity party moment! - it was more that I normally feel quite "normal" but just fatigue issues predominating. It is only when I step outside my comfort zone, and am interacting with new people that I realise there's a whole raft of problems there and it adjusts my sense of sense, you know?
You are lucky that you can volunteer, it sounds very rewarding. I only have enough energy for me and my family at the moment. Just making it through each week is an achievement of sorts. Maybe next year we will have better drugs and hoping that there is good times ahead.

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

WW, I had a similar experience a few years ago. My friend was having a bachelorette party but I didn't want to drink much cause it was shot night, I didn't want to get into a bathing suit in front of people I didn't know cause of all my lovely red blotches, and I had to go home early with a lame excuse cause yet again, it was shot night!! I doubt I could've lasted past 11 anyway. What a bummer. I only feel completely able to be myself with people who know my story which is only family and a few close friends. I hate telling new people about my MS cause then they look at you with pity and treat you like you're fragile and that kills the mood too. I guess nothing about MS is particularly easy. I just try to do the best I can. I hope we have better drugs next year too so life might be a tad bit easier and spontaneous. We can always hope.

You said it Scooby!

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.