DancingLight Posted November 30, 2004 Report Share Posted November 30, 2004 hello all!!!i just wanted to share my excitement....as most of you know i am pretty much homebound and get symptomatic so quickly...well, i was DETERMINED no matter what to go to my ten year high school reunion.i have actually been doing a tad bit better these days and surprised myself with how well i did. i didn't even crash quite as badly as i thought i would.for those of you who have struggled to get through each day or even leave the house....i know you can understand the absolute sense of triumph i feel over being able to do this! i am just so excited. i felt 'normal' for jsut a little while. these moments have been so few and far between for me over the past 6 and 1/2 years. in fact, this may be the biggest outing for me! i did stay too long probably b/c i had the shakes for the last hour...does anyone else get this? then, when i got home my bp was actually high for me...weird. i guess it was the fight or flight of keeping me from passing out? how do you stop that after it starts? like, for the last hour i was there i was shaking and i knew it was b/c i was over-doing it...does anyone else get this way? i was frozen too!i don't know...but i DO know...that i went, and i did it!i was so proud of myself...b/c i hate situations in which i have to answer the 'what do you do?' question a hundred times over. you know? but i found that most people were great about it and i was able to sit the whole time and people came to me. i felt loved! i saw so many folks and was so glad that i went.i even looked good i think! one thing that is hard...is that i hate telling people that i have health problems and sometimes feel embarrassed or ashamed.but, i also realize, that if i do not show my face and speak out...i just perpetuate myths about invisible chronic illness. so, i am going to put a face to this. so, i can't avoid these situtations if i want to make a difference (however small it may be) in this life i have been given...so, i just watned to share my joy. the joy that i felt well enough to go. that i felt well enough to enjoy it. that i didn't crash terribly afterwards (the crash after is always the worst for me). that people were loving and kind. that i re-connected with folks i had lost touch with. that my best friend is amazing and served as my protector for the evening...even going to the bar for me to get a drink (water, of course) and driving and everything. she really made it so that i could feel safe there.thanks for letting me share! sorry if i bored you!well, need to crash now! i think this week will be all about 'recuperating' from the whole thing! still, it was soooo worth it.wow! later alligators!emily Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 30, 2004 Report Share Posted November 30, 2004 That's wonderful, Emily. Thanks so much for sharing your courageous experience. I am so glad it was a positive one, too. I hope the experience will help continue to give you hope and confidence that you will recover to a highly functional level, eventually.How hard it is to explain to people you are ill--even harder, to so many people from your past. And how hard it is to face the outside world again after so much time away from it all.I am glad you have such a loyal and understanding friend, too.Rest and be very proud of yourself. May this be a first step in your journey back to wellness.Katherine Quote Link to comment Share on other sites More sharing options...
blackwolf Posted November 30, 2004 Report Share Posted November 30, 2004 I'm glad you could go. I will probably miss my 20th (yuk, am I really that old) as it is 435 miles away. I do go the my hubby's and we have a really good time. They get together about every 5 years.Yes, I often get the shakes if I over do it. As to getting over it. Just rest, put my feet up and drink lots of water.Blackwolf Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 30, 2004 Report Share Posted November 30, 2004 That is great to hear, Emily! Tomorrow I am going to visit my old childhood best friend. I haven't seen her in about 14 years and I'm so excited. It is neat to reconnect and catch up with people every now and then. I hope I have as good a time as you did! Michelle Quote Link to comment Share on other sites More sharing options...
geneva Posted November 30, 2004 Report Share Posted November 30, 2004 Emily, FANTASTIC! I am so proud for you that you set out to go to your reunion and not only did you go but you looked great and had a good time!! Doesn't it give you a feeling that you can still have control over your life? I am really very happy for you and so glad you shared with us.I also get the full body shakes from time to time and for me, it is usually when I have had to much overstimulation. A quiet rest is what works for me. I am in a full recovery mode from 32 of my husbands relatives at our house last Thursday. My head is spinning!Rest well. geneva Quote Link to comment Share on other sites More sharing options...
Gena Posted November 30, 2004 Report Share Posted November 30, 2004 Wow Emily, I'm impressed. That's a wonderful accomplishment. I'm glad you were able to do this. You should definitely feel proud of yourself. I hope and pray that your post crash recovery goes quickly and that your up to more outings in the future. Quote Link to comment Share on other sites More sharing options...
corina Posted November 30, 2004 Report Share Posted November 30, 2004 Hi Emily,I'm very proud of you. And the feeling you describe, feeling embarrased or ashamed I can sooooo understand. It's how I feel all the time, when I'm in my wheelchair or in my electric cart, now that I'm getting an elevator at home, when people see me walking at home (I walk like drunk most of the time, and no I'm not )). I know I shouldn't have those feelings, and you shouldn't either. Hope you DID enjoy every minute and I'm glad it was sooo worth it. These are the things that let us know that life is REALLY worth living. Hope this keeps you going for some time,Corina Quote Link to comment Share on other sites More sharing options...
Eillyre Posted November 30, 2004 Report Share Posted November 30, 2004 I'm SO proud of you Emily! I can identify with all your feelings of embarrassment, doubt, frustration over the "and what do you do" questions...the whole nine yards! I was so encouraged to hear what a wonderful time you had, too. I've been invited to a big holiday party a friend is holding this weekend (my very first since being diagnosed with POTS earlier this year), and I'm rather sorry to say that I've had my doubts about going. I agreed to go, and look forward to it so much (actually being out with friends, meeting new people, etc.), but I couldn't help but dread some of the same things you mentioned. I never feel like I'm a normal 21 year old anymore....dance career pretty much shot, trouble studying due to "cognative disfunction" , difficulty just walking or getting breakfast, all my friends away at college, etc. I'm not depressed by it (although I do break down in tears of frustration at times), and I am trying to find ways to be useful to others and productive, but still....You know. Your message was such a great reminder to me to remember that I can go out and have fun with people my age, feel pretty, and help dispell the "it's all in your head" myths floating around society.Hope your post-party crash is quick and not too dreadful. Thanks again for sharing with us! Quote Link to comment Share on other sites More sharing options...
opus88 Posted November 30, 2004 Report Share Posted November 30, 2004 Way to go, Emily! Sometimes we just have to prove that we can push ourselves a little and still be relatively ok. What an exciting evening that must have been for you!I do get the full body trembling when over stimulated, and so often it is accompanied by feeling like I'm gonna freeze, so I don't know if my body's thermostat gives out first and creates the shaking or the other way around. When that becomes too strong I take one dose (10 mg) of my beta blocker (propranolol) and within 15 minutes or so I'm ok again.Anyway, I'm thrilled for you - and I'll bet it will leave you riding on an emotional high for a while, which may soften the crash. Let us know how your recuperation goes! Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 30, 2004 Report Share Posted November 30, 2004 Hi Emily,That's a way to go girl. What an accomplishment! Hope you recuperate fast.Have a nice week.Ernie Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted November 30, 2004 Report Share Posted November 30, 2004 Way to go Emily!I'm so happy for you. I remember those days of shaking. It would always pass, but I was truly very wiped out after. That fact that you were not too wiped out is encouraging. I am so glad that you were able to enjoy your 10 year reunion------wow what timing, to actually have a good day too----how exciting!I pray for this good luck to continue for you, and for times to get even better for you. I'm also glad you have such a good friend who understands, and is there for you.Take Care,Julie :0) Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 30, 2004 Author Report Share Posted November 30, 2004 you all rock! thank you so much for supporting me in the excitement i feel...and really 'getting' what a HUGE deal this is! i am smiling from ear to ear. i know some of you are having a really crummy time right now...and i appreciate you being able to still feel joy for me! but, i think you also know that i have spent the majority of my 6 1/2 years feeling crummy...so i didn't post to 'rub this in' to anyone's face! i hope you know that! i also know how fleeting these 'good days' and 'good moments' can be, but, as corina said, these moments are what sustain us from day to day...especially the bad days!also, it was helpful for me to hear that others of you get the 'shakes' from the overstimulation. that was definitely what it was. i was glad that it didn't 'stick'. i have had that happen and then had it last for the whole night or days without being able to sleep or stop it. my fear about the reunion was more the after-effects than the reunion itself, b/c i knew that the adrenaline would kick in! although, i probably used it all up now! he-he.there was so much stimulation...five conversations at one time, plus the worst part was the DJ and having to yell to talk. i find that so exhausting. i am doing so much better than i could have expected. and julie, you are right, i prayed and prayed for a 'good day' that day. b/c it changes so much from day to day! on thanksgiving day we had a visitor and i felt lousy, and then the next day better. so unpredictable. i am mostly just tired and not super-symptomatic if i take it easy...like, i didn't get up until noon today and need a nap now! oh well! i am used to that. i allowed for some 'down time'...so what will be will be.thank you again! hugs and better days for ALL OF YOU!!! later alligators! time for that nap!emily Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted November 30, 2004 Report Share Posted November 30, 2004 Hey Emily,Good for you!! I think it's great you were able to go to your reunion. You should be very proud of yourself. I know how hard it can be to put yourself there and go to social events. I too have a hard time talking about my illness and tend to avoid events. Anyhow, you were brave to go and I'm so glad you had a good time. I'm also glad you are doing a little better.GayleP Quote Link to comment Share on other sites More sharing options...
corina Posted December 1, 2004 Report Share Posted December 1, 2004 Emily,ofcourse we all know you didn't want to 'rub it in to anyones face'. "Au contraire" the French say (do you know the french language?), meaning: on the contrary: it makes me even feel more excited that there are possibilities to do very nice things while having this POTS. Not that I didn't know that but every time one of us has a great time doing something fun it makes me feel soooo good and it helps me in standing strong and make the best of my life (as well for myself as for my family). So Emily you just keep on telling us every time your having your wild party's (sorry, just joking )Corina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 1, 2004 Report Share Posted December 1, 2004 Emily, thank you for sharing this news! I felt very proud of you while reading it. It took a lot of planning and you did it! It isn't always possible even with our best intentions to be successful (as you well know) but you managed to do it all for the reunion! It must have also been so uplifting to reconnect with your old best friend who acted as your "protector" and renew friendships...sounds like it was a wonderful event! Now go take a nap.PS..I never know how to answer that dreaded question "so what do you do?" how did you respond? The best I can do is: " I'm a personal life manager for two boys". They tend to look puzzled and then I say "I'm a full time mom and I help manage my sons home and school life." It usually leaves them smiling and me feeling more valued. It is always difficult for me, anyway, thank you for being a good role model. hugs, tearose Quote Link to comment Share on other sites More sharing options...
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