I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Tuesday, August 16, 2011
A Long Journey
We went away this weekend on a short vacation with my extended family to the Poconos where my mom and her husband have been living. We only had to drive about 3 hours each way to get there and back, but it was light-years away from earlier family vacations when I was first sick.
There were 14 of us all together - 8 adults and 6 kids, sharing one house and all of our meals. We had a similar vacation together in the Adirondacks six years ago. In fact, I brought along a bunch of home movies and photo DVDs this weekend, and we watched a slideshow of that previous trip. As everyone else in the room exclaimed in delight and said, "Wasn't that the best vacation ever?" I just kept my mouth shut. That week stands out in my mind as the worst week of my entire life.
I was the sickest I have ever been, before or since. I had tried to warn my mother that I wasn't up to a full week with family, but she took it personally and insisted we come. By the evening of the first day there, I was plunging into the worst crash I have ever experienced. I spent three days in bed, not even able to read, doing nothing but lying in the dark with my eyes closed. I barely made it out of my room for meals. I tried to be personable, but I was just so horribly sick. I really thought I wouldn't survive the week. This was early in my illness when all of my family was in deep, deep denial about how sick I was, so they all just pretended everything was fine. It was a nightmare.
Contrast that to this past weekend...I had a great time and was able to participate in almost everything. I helped with meals, went to the beach with everyone, paddled my son's kayak, and played games with the kids. Sure, I still had to respect my limits - I took my daily nap, went to bed by 10 pm, and had to rest up a bit on Saturday morning after an active Friday - but I felt well enough to truly enjoy the vacation. And it is so wonderful to see my kids having so much fun with their cousins, building bonds that will last a lifetime.
The best part of all? Saturday night after watching some old home movies and telling stories of past escapades, we all laughed so hard there were tears pouring out of my eyes and I couldn't catch my breath. There is nothing more rejuvenating than laughing until your stomach muscles hurt! I felt as if I had my family back.
I have come a long, long way from those early years.
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12 comments:
I'm truly glad that you had a wonderful time! I'm sorry that the last time was so difficult.
Your blog is truly an encouragement to me and my own health journey.
Thank you for sharing.
Oh, how wonderful Sue! I am so glad you were able to go and be an active participant..Yahoo!
This is so hopeful....that things have improved.
I know what vacations can be like when we're sick. I'm so glad you had a good time....and your family too.
Praise God for your wonderful return to better health!
I'm so glad you can do so many things and enjoy your family so much!
Blessings,
Elaine
I am so glad you had such a great & memorable time this go-around!!!
Fantastic, glad you had a good time.
It is so hard for people to understand how sick we can be with me/cfs, sometimes I look in the mirror at my 'normal' reflection and lapse into happy denial myself. But then reality sets in pretty quick (as quickly as I need to sit down).
It's great to hear of your improvement, I look forward to the day when my health mirrors my reflection.
I realise that you are in no way cured but what a long way you have come, fantastic. :)
thanks for sharing. K
You have come such a long way. You give me hope. I'm so glad you had a wonderful weekend this time around.
May I ask how long it was before you started feeling better after the initial nastiness? I'm now 15 months into it and feeling a bit discouraged by my lack of progress.
Baffled -
Unfortunately, there's no magic to my improvement. It's the result of being VERY persistent and trying LOTS of different treatments. I take dozens of pills every day, but some of them have helped. I guess I need to write a detailed post about what has helped (and maybe what hasn't). This is certainly not spontaneous recovery (or recovery of any kind), just a few treatments that are helping to control symptoms and a couple treatments that are helping my immune system.
As for timing, I've had CFS for 9+ years and have been through many ups and downs in that time.
Sue
I'd love to know what you think has helped...You know it's just over 9 years for me as well. I got sick in June, 2002.
It seems like you have a good perspective when it comes to dealing with and accepting the ups and downs as part of living with this illness. I wish I could learn to do this better.
Well, Upnorth, you have just been through a really difficult time. Setbacks like that are hard to deal with no matter how many years we've been sick! I went through a bad 9-month period two winters ago. Hang in there - it WILL get better again.
I will definitely write a post about what has helped. Maybe after my nap today - tomorrow is another crazy busy day, driving to see the Lyme doctor.
Sue
I glad that you got to enjoy your time with family....
Hi Sue!
Sounds like a great vacation.
I've just found your blog & I look forward to reading more of your posts. I'm 36 & have lived with CFS since I was 12.
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