Recovering

[gdomaracki]

Boy did I have a doozy of a day. I went up to a thing called Motorcross up in Harrisburg. (a hick thing, hehe) And I was pretty nervous about going cause I didn't wanna get sick, but I thought ya know lets try it anyway. Well, I had a Great time and didn't realize that I had been walking around for WAY to long till I went to go up some stairs and I couldn't breathe. It was like I was stuck on that dumb TT, and they wouldn't let me off. The rest was almost a blur...

I ended up walking into a wall and thats when I told my bf and our friends that it was time for me to sit down. I literally just plopped down on the ground. Then came the horrible headache and I had confusion so bad I couldn't make any sense of anything or talk right. The words came out in random order.

So we tried to get me to the bus....

BIG MISTAKE! My bf was basically carrying me cause I couldn't walk and my legs were giving out.

I tried drinking water when we finally got there, and I threw up on the bus. GROSS!

All i know now is that I just woke up from sleeping 15 hrs and I still have a horrible headache and my eyes hurt.

So much for having fun!

Nicole

[futurehope]

Oh, Nicole, bless your heart for trying. Please don't give up. You overdid it. You'll learn when enough is enough.

You can do it. Please don't give in to this. Just pace yourself. I found when I need to "walk" because of a show or exhibition or something, I use (or rent) a motorized scooter. Or, your boyfriend can have a "regular" wheelchair handy.

That's the only way I could do it.

[morgan617]

Wow, so sorry it ended that way! My hubby says he's getting a regular w/c for me after having to carry me into the house on Friday. I agree you need a scooter or a chiar. I know it's embarrassing, but so is barfing on a bus and that feels worse too! Better luck next time. morgan

[Be Still]

Hopefully, with your onset, you will improve and lick this thing! But, reality is: right now you can't do what you did before. You're going to have to prepare for your fun. By all means, have fun, it's so good for your emotional health, but you have to take into consideration your limitations .

I?ve dealt with CFS for nearly a lifetime, so I can relate from there with some practical stuff. Classic CFS advice is: decide what you want to do, then cut it by 50% (another one is: lay down for 10 minutes every hour, not a bad idea.) Cutting something by 50% may mean using the wheelchair when you go out (not necessarily not going) or staying only half as long.

I pack a sort of 'survival bag' when I go out: lots of water (I see that some here use Gatorade or other fortified drink), several snacks, book to read when I have to lay in the car while everyone else is having fun, Walkman and ear buds or white noise machine to block out sounds so I can take a nap (I keep pillows and blanket in the car.) Meds would probably be included here.

I have a lightweight, aluminum, folding camping stool I take if I'm doing well enough not to need the wheelchair (some people get a cane/chair, which has it?s advantages in that it ?looks? like you may need assistance if you are struggling.) I can sit on it or put my legs up on it if I'm sitting somewhere else. (I printed out a handicap symbol and taped it on the leg to make it look more disability-related when I take it to a convention center or museum. When I am sitting in a long line for something, I usually get some wise cracks about it that it's such a 'good idea' and I could 'sell it for lots of money'. (Hmm. If I ever get well, I'm going to be a vendor of chairs for events. One such event is the Post Office about three days before Christmas. I took my chair and one guy was flabbergasted that I had prepared for the line. I looked at him and said, brightly, "I have a medical condition.")

Consider getting a handicap parking tag, your DMV will tell you what you need, usually a signed letter or Rx from your doctor. This way you can cut down on a lot of walking to and from the car (which is typical at outdoor events like the Motocross.) Another thing, when that bad, don?t try and walk to the car. Park yourself and have the car come to you, and if possible be drinking some water or Gatorade while you?re waiting!

I found it helpful to have a "We'll see" attitude. I can plan on going, but, "We'll see." I can plan on staying for hours, but, "We'll see." I don't want to have to pay for overdoing it so I take it seriously. If I feel like you describe, I'm waaay overdoing it, and I will really suffer for a day or two at home. It's hard to know, one of my main sx is brain fog and that makes it difficult to KNOW that you feel bad. I've learned to look for clues, like nausea or irritability or feeling like a zombie to let me know I'm over my limit. One idea, is to set a hourly chime on a watch and assess yourself each hour.

I, personally, never try to do a day-long event, I shoot for rare half days. I very much needed to go to a 6 hour conference for special education and took a chaise lounge, there was no other way to go. I was treated respectfully (I called ahead to explain, but with ADA, they have to accommodate you,) and was offered assistance. It made it possible, not comfortable.

I imagine the big thing is acceptance, that this is you at this time (not forever.) When you get smacked in the face with this, you will grieve. Acceptance is the final stage (after all that denial, bargaining, anger and sadness.) *sigh*

So . . . when you gettin' a bike?? Can you imagine the adrenaline rush on those jumps? Some extreme athletes are known as adrenaline junkies.

Brain researchers have actually found that some people lack an enzyme that facilitates neuron transmission between receptors. Thrill seekers are deficient in MAO enzyme levels in the brain, says Casey Dale. "The only way they can get elevated levels is by doing high-adrenaline activities."

My high-adrenaline activities involve waking up in the middle of the night.

Monica

[DSM3KIDZ]

I'm so sorry to hear about your day. I think you just have to start out with baby steps. Do a small event than as you gain more strengh you can add all day events.

Still make sure you have fun! I know it's hard. I hope the best for you.

Dayna

[gdomaracki]

Thank you all so much for your positive reinforcement. I am STILL recovering from Saturday, but the headache has finally left. I know I overdid myself, and my bf keeps reminding me that when he tells me to sit down, that means sit down. lol. Oh, how I want to be like everyone else without a care in the world. Maybe in time. . .

Thank you all again!

Nicole