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If you have Chronic Fatigue Syndrome, regular days are exhausting, holidays are like a beating. Well, look out. There's one coming right at us.
How do you get through, and maybe even enjoy, Thanksgiving?
1) Know your limits.
If you know full well that you must rest every two hours, or nap every afternoon, this is no time to ignore it. Between now and Thanksgiving (and this pertains to Christmas in spades) maybe have a rest every hour. Don't just nap in the afternoon, lay down in the morning and the evening.
2) Stick to essentials.
Sure it would be nice to invite everyone to Thanksgiving dinner. But if it would crash you until well after New Year's, set your sights on something less draining. Maybe you love to cook, but defer that for now. You may yet cook for them one day. Just not this week.
Pick one or two people you miss the most, and invite them to visit for an hour. If that's too long, ask them to stop by for twenty minutes. Good friends will understand. Good friends who miss you will jump at the chance of even a glimpse of you. And don't feed them. Your job is to expend as little energy as possible so you're conscious when they arrive.
3) Be sensitive to yourself.
A lot of us have some type of dysautonomia, that is to say our body systems don't always work together well. We may have sudden dizziness or heart palpitations or vertigo. Some days we're unable to move. Or to think. We don't know why. We just try to roll with it.
With a holiday on the horizon, those tricky body systems are under extra strain. Doesn't matter if you don't normally have to lay down in a dark room to get the ringing out of your ears and the buzzing out of your head.
Don't want to look like a wimp by excusing yourself to collapse for awhile? Too bad. You know the price you'll pay if you don't. Lay down, rest up, and maybe be able to come back and join the fun.
4) Listen to your gut.
Are there things you'd like to do but you have a gnawing feeling they'll tip you into a crash? Heed the gnawing.
Or are there things you don't normally do, but you really want to do them for the occasion? Maybe you'd like to write something or create a gift for someone special. Maybe you want to paint something. Maybe you've been practicing a special piece on the piano.
If your gut says yes, seriously consider it. Those little jewels of pleasure and accomplishment are hard to come by for the chronic community. If the desire is that strong, sometimes you should go for it. The endorphins released will do you a world of good. You're the only judge as to when to say yes and when to say no.
5) Learn to embrace solitude.
This may seem out of place in a piece about holiday gatherings. But some people with CFS aren't going to be gathering for a holiday. They can't travel to see family. And for some, even if family came to them, the neurological chaos it triggers is too heavy a cost. Some can't handle the noise and visual commotion of a celebration. They may love the idea of it but their bodies can't handle the reality. And so they are alone.
6) Do you know someone with Chronic Fatigue Syndrome?
Would you like to do something, but you're not sure what to do? Ask them what they're sensitive to, what they can tolerate, what they'd like. Sometimes there isn't anything you can do. But being asked by someone who cares is a great gift to someone who hasn't gotten too many requests in awhile.
7) Will someone with CFS be at your gathering?
Try to have a quiet place they can retreat to. Let them know it's for them. Not for them and the napping baby. It must have a door that closes and a place to sit or lie down, where they can be alone as long as they need to. Better yet, tell them well in advance. They'll be grateful for your thoughtfulness. And knowing they have a haven may be the deciding factor in whether or not they'll come out.
8) Do you know someone with CFS who can't have company?
Write them a letter. Send a card or an email. Send them photographs or a CD of their favorite music. Let them know you're thinking about them. You may be the only person who tells them this.
9) Many with CFS live in poverty.
A favorite food or a gift certificate to a grocery store would be right on the money. Consider a bottle of omega-3 oil or vitamin D. You'd be surprised what is a luxury to people with no money. Taking them shopping or better yet, doing their shopping for them may be the greatest gift of all. Especially if you foot the bill for some of it. Or all of it.
10) Some with CFS are so sick that almost none of the above applies to them.
They may have to be alone in a darkened room -- if they have a room. They may be living outside. Many do. They're homeless because of financial ruin that dropped on them when they got too sick to work. Or they're so chemically sensitized to toxins in our environment that they can't live among us. They're in the woods, or in the desert, in a tent, a car or a gutted van. They may live this way for days, week, months or years. For some it's decades.
It may seem almost pointless or embarrassing to do something for Thanksgiving for someone in this situation, when their needs are so great. But every contact and every small creature comfort matters. And every reassurance that they're not forgotten by the rest of the world is something more to stand on.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment6 Comments
I expect there are other things that are more of a priority. Like breathing, and not having sound pierce your ears, not being worn out and having your brain becoming fractured ... Not having a crash due to the exertion of having company ... The essentials must be met, and it sounds like you've got your priorities good and straight.
I wish you well, and hope for healing for you.
Thanks for writing about your thoughts.
December 7, 2010 - 3:21pmThis Comment
Things like having celebrations or going to other people's houses for something like this are pretty much over for me, at least for now. I can't imagine spending my precious energy on them.
December 7, 2010 - 3:05pmThis Comment
Anonymous,
Your post underscores some of the reality of what I was writing about. Thanks for helping to give a fuller picture of what it's like for many who are chronically ill.
I hope you have a restful and pleasant night.
November 25, 2010 - 7:43pmThis Comment
I am actually by myself away from my family
November 25, 2010 - 3:30pmbut it's ok because I know that this is what my
body needs right now - quiet relaxation.
When I feel stronger, I know my family will be there
for me.
This Comment
Thanks, Anonymous.
Glad to know I'm hitting the mark. :)
I hope you're able to enjoy a peaceful but satisfying Thanksgiving.
November 25, 2010 - 1:12pmThis Comment
Jody did it again.
November 25, 2010 - 1:03pmIn her clear sensible way, she is expressing what all of us stricken with this illness feel.
thank you!
This Comment