tag:blogger.com,1999:blog-22576999.post8176057335255778311..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Vacationing with ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-22576999.post-31499266271008735922012-07-08T17:30:10.242-04:002012-07-08T17:30:10.242-04:00Dear Doubting Thomas -
By mistake, I just delete...Dear Doubting Thomas - <br /><br />By mistake, I just deleted your two comments (just hit the wrong button), and I wish I hadn't because I'd like to address them.<br /><br />Basically, you left 2 anonymous messages saying you didn't believe we had ME/CFS because of all we'd done on vacation.<br /><br />Well, this is what moderate ME/CFS looks like. Not everyone is bed-ridden or housebound by it. Some people are even higher functioning than I am and are still able to work - that's still ME/CFS, too. There is a broad scale of severity in this illness, and that's one of the challenges in properly diagnosing it.<br /><br />I think I clearly explained our limitations and crashes here. Vacation is definitely easier than everyday life - there are no responsibilities, no stress, no worries - so we can do a bit more than during a typical time at home. But if we were well, we'd be doing a lot more. We are NEVER able to tackle a hike longer than 1.5 miles now, and before CFS, we loved going on long hikes and even backpacking for days, hiking 8-10 miles a day! I still have to nap EVERY day, no matter how well I am doing, and I am pretty much useless in the afternoons and evenings. If we were well, we would be doing a lot more - maybe taking a hike in the morning and then doing something else active in the afternoon (instead of resting at our camper).<br /><br />I firmly believe that we can still live our lives in the face of this devastating illness. I have worked very, very hard to find effective treatments for myself and my sons. I have read every bit of research that has come out in the past 10 years and tried anything that shows any promise at all. As a result, I have been able to improve my quality of life - if you click on the links in this post, you can read about which treatments have worked the best for me. We each take a big pile of pills every day.<br /><br />Besides small improvements through treatments, we have always strived to maintain positive attitudes, finding joy every day, even in our very restricted lives.<br /><br />I hope that you can find this same sort of improvement - and also peace - in the face of this debilitating illness.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34146116766151298702012-07-08T17:19:56.774-04:002012-07-08T17:19:56.774-04:00HI, Rob -
I can see how you'd be confused if...HI, Rob - <br /><br />I can see how you'd be confused if you weren't a regular reader - it's a complicated mess is the short answer!<br /><br />Both of my sons and I have ME/CFS - I've had it for 10 years and they've each had it for 8 years. One my sons' (Craig, the younger one) CFS is quite mild and is thankfully well-controlled with Florinef (OI treatment). The other's has always been worse but we noticed he kept getting worse over recent years. About a year ago, he was diagnosed with Lyme plus two other tick infections, bartonella and babesia, which we suspect he has probably had for about 5 years, since the last time he was diagnosed and treated for Lyme (but not tested for co-infections). So, he is now undergoing treatment for those 3 infections, but it is a long and difficult process when they've been around for so long.<br /><br />So, short answer is we all three have CFS (to varying degrees of severity), but Jamie also have the 3 tick-born infections.<br /><br />If you are interested in more info on ME/CFS and Lyme and how to tell the difference, I have written about it fairly extensively - just click on "Lyme disease" under the categories/labels in the left sidebar.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-73003245773842740852012-07-08T12:41:03.718-04:002012-07-08T12:41:03.718-04:00Is it ME/CFS or Lyme? Confused.Is it ME/CFS or Lyme? Confused.Rob Hynesnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59542632770279059032012-07-07T18:54:02.771-04:002012-07-07T18:54:02.771-04:00Sue, you said what I was just getting ready to pos...Sue, you said what I was just getting ready to post! How we can never escape this monster living in us. I've been struggling terribly lately.... and when you mentioned the emotional part, I wanted to cry. (never do as it just takes too much out of me)....<br /><br />Thanks so much!<br />ElaineElainehttps://www.blogger.com/profile/06922200217770835483noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80677584894926539272012-07-07T18:49:01.221-04:002012-07-07T18:49:01.221-04:00Thanks, Heather!
I forgot to mention that - the o...Thanks, Heather!<br /><br />I forgot to mention that - the other highlight of our trip was meeting up with two other families dealing with CFS, one mom and son in Chicago whom we met at CFSAC last year, and another mom in South Dakota who is part of our Parents Facebook group. We loved meeting up with these friends!!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-81392656878959451302012-07-07T17:13:51.179-04:002012-07-07T17:13:51.179-04:00I enjoyed hearing about your trip, but was sorry t...I enjoyed hearing about your trip, but was sorry to hear about Jamie's migraine and the crashes...you write it so well, Sue. A 5th member of the family that is not fun to be around and causes havoc. Ugh. It is wonderful all that you guys can do though...Yahoo!!!! Lots of good memories.Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-67159652169854024032012-07-07T16:38:54.599-04:002012-07-07T16:38:54.599-04:00you said it best Sue, its the every minute every d...you said it best Sue, its the every minute every day - its like our constant shadow that doesn't need the sun - but i am so impressed with all you accomplished - and next year give me a heads up and your family is welcome to enjoy a few days at our lake house in Waupaca, WI -hkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.com