Came across an excellent article by Dr. Lapp (one of the world's foremost experts on CFS) regarding swine flu advice for people with CFS (aka H1N1).
This pretty much echoes my own approach and what our doctors have supported here. I would add to Dr. Lapp's advice that it makes sense for non-CFS sufferers in the household to get flu shots, just to avoid bringing the virus into the home (we find that even though we don't often catch viruses, being exposed can trigger a crash from the over-stimulated immune system response - probably what's going on with me this week).
I'm still feeling awful, but Jamie went back to school today. I had a little mental breakdown last night sobbing on the couch (sometimes you just have to, you know?), but my wonderful husband talked me down and cheered me up. Trying to rest today so I won't be totally flat for our little getaway tomorrow.
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.
Sue, it must have been something about yesterday because I had a little breakdown too and aren't we so fortunate to have spouses who are there for us when it happens? I thought you might like to know what we call it in our house: a meltdown. I used to have them frequently. Now, because I'm able to accept the illness so much better, it's a rare occurrence. But yesterday in the early evening, I had a full-out sobbing meltdown.
ReplyDeleteSame here, Toni! I had been trying to hold it together all through this busy week, taking care of the boys (they each had a crash day), all the time feeling awful myself. Finally, thinking about all I had to do for the upcoming weekend was the last straw last night. Definitely a meltdown! Doing better today (mentally anyway).
ReplyDeleteSue
Thanks for the info on Dr. Lapp's advice,Sue. Joel and I struggle some with this and in fact worry about our whole family coming this Dec. for a visit! Don't know what their plans are for the shots...expect some will get~ it some will not.
ReplyDeleteSorry about your meltdown. Good name for it Toni. I have had one or two in the past few days myself as I struggle with yet another health problem....it WILL get better for us all!
Hi Sue,
ReplyDeleteThanks for the link. I have been absolutely torn. I think that Jessie is one of those people who gets viruses and they tend to hit her harder than the average healthy person. (she has one right now - thought it was the flu, but not) For example, she and hubby got the exact same virus. He was better after 2-3 days and she's not coming around quite as quickly. I know, however, that most with CFIDS are better off to avoid the shot. So I think she will get the shot. If she had not had it in the past couple of years, I'd be even more torn. UGH. I hate tough decisions.
Glad to hear the boys rebounded quickly & I hope and pray that you and your hubby have a great getaway.
Lori -
ReplyDeleteSince CFS is such a heterogenous condition, I think this is a very individual condition. Even knowing I rarely catch viruses, I've considered whether I should get the shot this year, figuring maybe a guaranteed short crash from the crash might be better than getting the flu. Hard to say for any of us with any certainty. At least you don't have to worry about school absences this year...
Sue
Renee -
ReplyDeleteSo sorry to hear you're having a bad week, too. Must be something in the air! Thanks for the words of encouragement. Take good care of yourself and Joel.
Sue
Glad i'm not the only one who melts down from time to time.
ReplyDeleteI hope you continue to improve so that you enjoy your getaway. Take care!
ReplyDeleteSue said,"being exposed can trigger a crash from the over-stimulated immune system response"
ReplyDeleteHmm, I wonder if that's what happened to me this past month, Sue. Almost 4 weeks ago, I came down with a bad cold. It went through the usual stages, though never into the usual bronchitis and sinus infection, which happens often with me, and a week later I was back at work, still snuffling a lot of drainage but thinking I was over the worst. I'm a college instructor, so I've been surrounded by students coming down with swine flu. And the day after I returned to work, I got a seasonal flu shot that I had scheduled weeks in advance. I started feeling crummy again, but figured it would pass. Well, by Friday of that week, I got the chills while teaching, and for the next two weeks, felt like I was going through another cold, except the obvious symptoms of runny nose and cough didn't emerge. Just felt general malaise that comes with a cold, and some stuffiness. Finally, a couple of days ago, I thought I was getting over this 2nd pseudo cold, and whamo, woke up this morning with another case of chills, feeling like I'm starting the process all over yet again. I've had relapses with bronchitis before (pre-cfs)but never a lingering cold or sequence of colds like this one. So I'm thinking that maybe it's really a crash brought on by continued exposure to sick students (and exhaustion from chronic bad sleep).
Our campus is offering swine flu shots next week, but I'm thinking I'll pass on it. Not sure my depleted system can handle any reaction. To tell you the truth, at this point, I almost think a case of flu with clear beginning and ending would be preferable to this never-ending cold malaise. Thanks for listening to my moaning.