Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
We celebrated heroes day last weekend. Jamaican's love long weekends and take them as an opportunity to traverse our fair isle. There are tons of waterfalls, beaches, parks, farms .. endless attractions. Jamaica is so pretty you need no destination, just get in the car and drive, stopping at streetside vendors to sample our local cuisine like fried fish and bammy or the world famous jerk pork...
Thanks to CFS most holidays for the last 5 years have been spent at home in my bed. This time I decided to take pity on my poor son and find a way to get out of the house. I thought about it for days, wavering back and forth but eventually decided to chance driving down to visit family ,only 40 minutes away.. could have been Australia for the amount of trepidation I experienced.
My back locked up on the way there so I was in pain the entire weekend, on my last day instead of heading home at the crack of dawn, I was once again wavering. The family was heading out to a farm and a river .. quintessential Jamaican family activities for a long weekend and I did not want my son to miss the experience. But I was in pain, I feared my ability to drive home after a day out, I dreaded the inevitable crash afterward...
But I went, 2 hours of driving, walked around the farm, made it through the trip to the river (sat on the bank and watched longingly as everyone else frolicked..I am a water baby..come close to drowning 4 times that's how much I love water .. but I wasn't strong enough to swim..so I just watched).
I drove home..at night and guess what .. DID NOT CRASH!
Yes I am very tired this week, yes pain level is up..but I did not crash. I gave my son a good weekend, I did so many things I felt I could not or should not do because of the fear of the consequences .. and it was OK.
That is my encouragement for my DS friends.. a very real risk of living with this illness is we become self limiting. We assess the price of every activity and slowly but surely we shut our lives down, because we are afraid that having fun or living our lives will make us sicker. And sometimes it does .. but sometimes it doesn't. And its worth taking the risk for the opportunity to ENJOY LIVING OUR LIVES!
I'm sure I'll pay for this outing for a few more days but hey .. I'm tired and in pain almost everyday anyway, at least I've added one more healthy childhood memory to my son's sadly limited trove.
Thanks to CFS most holidays for the last 5 years have been spent at home in my bed. This time I decided to take pity on my poor son and find a way to get out of the house. I thought about it for days, wavering back and forth but eventually decided to chance driving down to visit family ,only 40 minutes away.. could have been Australia for the amount of trepidation I experienced.
My back locked up on the way there so I was in pain the entire weekend, on my last day instead of heading home at the crack of dawn, I was once again wavering. The family was heading out to a farm and a river .. quintessential Jamaican family activities for a long weekend and I did not want my son to miss the experience. But I was in pain, I feared my ability to drive home after a day out, I dreaded the inevitable crash afterward...
But I went, 2 hours of driving, walked around the farm, made it through the trip to the river (sat on the bank and watched longingly as everyone else frolicked..I am a water baby..come close to drowning 4 times that's how much I love water .. but I wasn't strong enough to swim..so I just watched).
I drove home..at night and guess what .. DID NOT CRASH!
Yes I am very tired this week, yes pain level is up..but I did not crash. I gave my son a good weekend, I did so many things I felt I could not or should not do because of the fear of the consequences .. and it was OK.
That is my encouragement for my DS friends.. a very real risk of living with this illness is we become self limiting. We assess the price of every activity and slowly but surely we shut our lives down, because we are afraid that having fun or living our lives will make us sicker. And sometimes it does .. but sometimes it doesn't. And its worth taking the risk for the opportunity to ENJOY LIVING OUR LIVES!
I'm sure I'll pay for this outing for a few more days but hey .. I'm tired and in pain almost everyday anyway, at least I've added one more healthy childhood memory to my son's sadly limited trove.
I can remember the first time I decided to do a weekend away from home. I was terrified of the consequences my body would pay from being away from everything "familiar".
Well, I had a fabulous time! I didn't crash either, just like you! Ya see, we have to push the envelope sometimes. We can't let the illness close us off from the rest of the world.
I'm so glad you made this step! Wasn't it wonderful for your self confidence??? And aren't you happy! OH YES!!!!
You'll do it again now!! You have just freed yourself in a great way, and I am so proud of you!!!
Sometimes we have to take risks with our precious energy envelopes! And sometimes we get wonderful surprises. Like you just did.
I'm happy for you!! xoxo
I have decided some things are worth the crash. By this I do not mean housework. Crash on housework and more piles up, so that just isn't worth it. But going to a "sing-along" every other month (we have a potluck and sing oldies in the living room sitting down) and going to a board game group every other month, are completely worth it.
If I look forward to those two activities, get to laugh and talk to people, than I usually don't crash or not very bad. I'm not worried about it because I already decided it is worth the sacrifice. I think the lack of worry helps.
And the beautiful part.... Sometimes I will be just so sad I make myself go. And then the joy from it gives me the opposite of a crash. Wow, we don't have a word for that! It makes my symptoms a little less for a few days.
I've learned I need to get out sometimes. I think this would be different if things were better at home. I think then it would be somewhat reversed - where being at home would be a haven instead of something I need a break from.
Oh yes, and everyone who can't relax anymore, schedule time for it! I swear when I did this it eased my symptoms.