This past weekend my family and I traveled to a soccer tournament that both of my daughters were playing in.
If any of you have ever been to a sports tournament you know how exhausting they can be. 4 soccer games for each daughter, traveling back and forth between games, lots of people everywhere, the hotels, dinners with the teams with tons of people and noise and activity...well you get the idea.
I don't sleep well in hotels so I was running on not much sleep so by the end of the last game yesterday I was completely exhausted. Of course, we were standing in torrential rain, 15mph wind gusts and temperatures in the low 50s which definitely didn't help!
While we were traveling home in the car I noticed that I just didn't feel well. I was just so cold I couldn't get warm. My head hurt. I was trembling. In fact, my hands were trembling so much that when we stopped for lunch on the way, I could barely feed myself. Food was falling off of my fork because my hands were shaking so violently. Terribly embarrasing, by the way.
Since my bleed I've noticed these things when I'm tired but it was really bad yesterday.
Do any of my fellow survivors experience this? Have you discovered anything that helps except for avoiding getting overly tired in the first place? Sometimes it just can't be avoided. I'm a mom of very active girls. Soccer tournaments will continue as will other things in my life that will require more brain power than I have.
I slept fairly well last night. I got abot 6 hours which is pretty good for me. I feel better this morning but I know it's going to take several days for it to ease up.
Of course Thanksgiving is just a couple of days away and I've got several dishes to prepare. It's going to be especially difficult for me this time around.
What are some things you do to help? Especially with the tremebling hands. That's still going on today and trying to write out my lists for what needs to be done is slow going :)
For me I have noticed that having a beer or glass of wine helps but I'm fairly certain it's frowned upon to start drinking at 8 in the morning!
Yep, see it all the time in my wife. I don't have an AVM and I get cranky when I get tired.
Get your good music on the smartphone/mp3/whatever. Attend as many games as you wish, but give yourself permission to go nap in the car or hotel. Your daughters will understand and love you for trying. Get one of the other Mom's to bring your kids home or to the motel.
T-Day: Buy as much prepacked food as possible. Enlist the help of friends. If your friend is making one pie, it's not much effort for her to make a 2nd one. And think of the joy it will give her to help you. (we often forget about the rewards the givers get)
Thanksgiving is about FAMILY, not food (though I know good food helps). Go out to eat or have a neighborhood feast.
I've come close to losing my wife a coupla time now (most recently 2 wks ago through a bad reaction to chemo). For T-Day, I don't care if we eat frozen pizza--I want HER there for me and the family.
I guess I need to make you a sign also Trish............. The money should be rolling in quickly.
Hey Trish, Except for "shaking hands" I am one miserable, EXHAUSTED woman who can't think straight, when I overdo it! :(
As Ron suggested, take some time-outs (even sitting quietly in your car for awhile) & know your daughters will understand.
And yes, when we overdo it (& depending on the extent), it can take days to feel better.
I feel the same way about the upcoming holidays, (stressed & exhausted in anticipation!), yet @ this stage in my life with adult kids, I know our kids will share in providing for the meal(s), so it does lighten the load.
After 25 yrs since my initial diagnosis, it seems I'm still adapting to the new me. ;)
Have a restful day, Trish. :)
Very similar!! It has been 12 years since my craniotomy. They said that being tired was a major side effect from the surgery. I can remember being carried to the bath tub & my ex husband helping me bathe because I was so exhausted. Then, having to sit down only halfway through drying my hair or putting make up on, because it was so strenuous!
12 years later, I am a nurse & work 12 hour shifts. When I get tired…my balance is off, I get dizzy, & my eyes "swim"
Take it slowly…rest when you need to…
Thanks Stacey. I'm just over 4 years since my bleed and surgeries. It gives me hope that perhaps it won't always be this way. I know that the fatigue is common but like you I am more dizzy and my balance is off as well when I'm tired. I'm encouraged to know that you are able to work a 12 hour shift!
It’s ironic that you bring this up because I had a chaotic, out-of-the-ordinary weekend with crowds, crying kids, photograph posing, planning and organizing, etc.
Fatigue is always a factor for me. I’m a pretty hard-core believer in sleep; yet there are always those times where there’s no escape for sleep in which case, I zombie out…meaning that even though my eyes are open, I’m completely zoned out and not listening to a single word that’s said.
In these cases, I try to plan out where/when I will use my energy, active listening, etc.
I will be making up for choosing over-stimulation and lack of fatigue-escape; and luckily going over someone else’s house for Thanksgiving; for this maybe recruiting help from friends or Boston Market:)
I will be thinking of you, and I wish you the best of luck, no matter what you decide.
I'm not actually hosting Thanksgiving. That would be out of the question for me. We're going to my friend's house. I'm only preparing 2 sides and 2 desserts. That should make it easier hopefully. Thanks all for your suggestions and advice.
I've had this happen... I think it's an anxious reaction. You're tired, and you need to focus (especially when driving) so your body goes into overdrive. Alcohol helps because it has a calming effect. I just try to breathe and stay calm, knowing I'll be able to rest soon! Hope this helps
Yea. I go through it too. Every single time I feel exhausted or run down. I get the shakes, memory fog and some times, a seizure. It normally takes me about 2 days to recover from pushing myself to far. On the days that I'm not able to rest when I need to - I meditate. Even if it's only for a few minutes at a time, it helps me to go the extra mile. I avoid all caffeine as well on days like that. No matter how tired I may feel, that's a big no-no for me.
I noticed that when i get tired ,i start to get a sick feeling and need to lay down even to much computor can cause me to feel sick...I also noticed at times the world has turned upside down and everything is so out of wack...i also get the shakes at times and cold as if i cant get warm...and i wish i could join you for that glass of wine at 8 am every morning cause im up before the sun..lol
Thank you all so much for you advice and for sharing your experiences. It is so nice to be able to share with others who know exactly what I am going through. This group is so fabulous!
You're welcome. :) This is not an easy road to travel. I'm with you - It's good to know that we aren't alone in this journey. Or.. should I say "chalenge"? Hee hee.
Hi, Trish. I sometimes tremble, but not necessarily when I'm tired. Neurologist calls the trembling a type of seizure. BUT the tired thing? When physically tired I feel like I'm vibrating, almost tingling inside and often have headaches. But when I'm "brain-tired" I can't think or focus and I feel physically tired. When I'm in an 'active' place (ie, a party) sometimes I have to find a quiet spot for a few minutes, even if it's the bathroom or my car. I also keep cotton balls with me at all times to muffle loud or too many different noises. It usually takes me 24-48 hours to recover from a party. And that's with NO alcohol, etc - LOL!
Karen, I do the same thing if I'm at a party or in a loud environment. I go outside or find somewhere quite and sit for a while until I feel like I can handle it again. Any yes, it takes me at least a day or two to recover but then I'm certainly not as young as I once was so that's part of it!
I probably can't add anything that you might want to hear because I'm always dizzy and don't even focus on the tired thing, just the school thing. Shaking hands? Haven't had that either.
But as far as the drinking. That is correct. Drinking should commence at 9am...or at least 8:30...
I am living with my elderly parents. Pass the wine, will ya? ;)
Hi Trish, I still have an active AVM and I get tired as well. I get lightheaded, off balance, have word retrieval issues and I get tingling fingers. I sit, rest, and drink 2-4 glasses of cold water and it goes away. I don't know why it works but it might be worth a try. Positive vibes coming your way! ~Elizabeth