I am still severely crashed, still stuck lying on the couch with a terribly sore throat and severe aches all over. It's been more than three weeks of this now, when my crashes typically only last a day or two. I am forced to consider the unthinkable: could this be my "new normal"?
Ever since the boys and I improved to the point of being able to function somewhat normally (they with Florinef and salt for OI; me with OI treatment, antivirals, and low-dose naltrexone), a part of me has been waiting for the other shoe to drop. If you read my blog regularly, you know that I am not normally a worrier. I try hard to stay positive, to focus on today, and to be grateful for what we have. But there's always a little bit of anxiety hiding behind the surface, feeling like all three of us are time-bombs waiting to go off.
That part of me has been worried - more about the boys than myself - that one of us will be exposed to one of CFS's trigger infections that will cause a long-term worsening. Both of my boys still test negative for Epstein-Barr Virus, so I mostly live in fear of one of them getting mono, a well-known CFS trigger. I've certainly read plenty of stories of others with CFS who suddenly and inexplicably worsened. So, after almost a month of feeling awful, I have to wonder - is that what's happened to me now?
Fear not, though. While I recognize that my fears could turn out to be valid, I am trying not to let them overwhelm me. I reminded myself last night of the lessons I learned years ago about hope and control, namely that I do have some control over my circumstances and that I am not entirely at the mercy of forces outside myself.
So, I am doing what I can to try to promote recovery - mainly what I like to call Aggressive Resting (a wonderful oxymoron). This is very hard for me! I realized this weekend that I definitely get worse after sitting at the computer or cooking dinner,and I get a little better after lying down for several hours. So, I am newly dedicated to REST...lying down as much as possible, letting Ken handle cooking, even - gasp! - limiting my time on the laptop (this is it, I swear...). Even harder, I think I need to stay home this afternoon and miss Craig's soccer game. I've been dragging myself to the games twice a week, and I always feel worse afterward. This morning, I even turned off the tv, put down the books and magazines, closed my eyes and meditated (twice). I am a multi-tasker at heart, so it is real work for me to truly slow down like this, but I am trying.
And in that spirit, it's time for a quick lunch and a long nap.
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,
ReplyDeleteI am so sorry that this crash has gone on for so long. I think aggressive resting is exactly what's called for. My best guess is that this is not your new normal, that it's the result of a combination of conditions not the least of which is the change in seasons.
You're doing the right thing -- the very advice from your previous blog entry: taking control of your situation and not giving up hope.
This too shall pass. I'm positive of this -- based on what I've read of the ups and down in your illness over the past few years.
Toni
Sue, don't let yourself worry yet. I was hit by two bad viruses in a row this fall and was down for over a month. Am just now beginning to come out of it. I'm pulling for you!!!
ReplyDeleteThanks, Pris and Toni - you're probably both right. Sometimes it helps just to voice your fears out loud. And it certainly helps to hear back from friends like you who've gotten to know me so well over the years. Thanks so much for your encouragement and support.
ReplyDeleteNaptime now!
Sue
Hang in there Sue. This is a long stretch for you, but you willget better again..all of us have had these same fears at times..how can we not? BUT you are doing all you can to improve and manage symptoms.... and it has helped before! My new motto is, "Control the controllables and leave the uncontrollables to God!"
ReplyDeleteThat's a good motto, Renee! I am not good at giving up control of ANYthing to ANYone!! That is a tough lesson that CFS has taught me over the years (but one I seem to keep learning over and over). Very tough to give up control, but I'm trying hard to let go this week!
ReplyDeleteSue
I know exactly what you mean - how each illness (or, hell, even each sneeze or case of the sniffles) makes you worry that this could be the thing that makes it worse. But you're right, you can't live worrying about how much could go wrong, and I'm just going to keep hoping that this is just a temporary setback for you, and that you'll be feeling better soon!
ReplyDeleteYikes! Take care of yourself and do lots of Aggressive Resting.
ReplyDeleteSue-
ReplyDeleteI've noticed that there are a number of us who have had extended crashes starting in August.
I, like Pris, got hit with a couple viruses in a row. The whole thing lasted about 5-6 weeks and has since lifted but I had the same worry you did.
Aggressive resting is in order.
Hang in there Sue!
Yes, I'm all for Aggressive Resting - and even Aggressive Scheduled Resting.
ReplyDeleteI'm with everyone else on this. You had a great Summer and this all started once the kids got back to school. Whether it's stress, worry, viruses or overdoing it, who knows? Probably a combination of all those things.
CFS is a moving target. This is probably not your new normal but a reaction. It may even be a sign your immune system is improving if it is starting to throw symptoms. I'm no doc though.
Time to concentrate on yourself, eat well and rest. It will come right. Advice I need to take myself!
Sue,
ReplyDeleteI only just found your blog over the weekend, and love it already. I've just started my own about my CFS/ME, and yours is a real inspiration!
I'm also going through a major relapse at the moment, and my symptoms are the wosrt they've ever been! It's hard to stay optimistic, but it's the people we love, and who love us, that carry us through!
Hope yours sorts itself out soon!
Sam
Hang in there, Sue. I don't think you're down for the count. This is just a bad one and you'll pull through.
ReplyDeleteI love Renee's quote. So true - now if I could only follow it! :)
Oh jeez Sue… Sorry to hear you're on the 3rd week. I have had that EXACT thought about "the new normal" often; it's amazing how often and well you articulate my (and many others') feelings, anxieties and frustrations. I have been having a really rough spot myself for the last several weeks (sore throat, TERRIBLE body aches, headaches, gut issues, etc.) I just keep juggling meds and supplements trying to get back on track. Here's a question: aside from just feeling like complete crapola, how do you know you're getting mini-viruses? It seems completely plausible; just asking. I'm with you on the "AR"; although I feel like a complete sloth and I worry about income. Hoping my "crashes" will align to my freelance gigs ; )… Thanks for posting this too; we all know it takes major effort to organize thoughts and even sit up long enough to do so sometimes!
ReplyDeleteBest, Martine
Hi, Martine -
ReplyDeleteThanks for the kind words and encouragement. Sorry to hear you're also down and out. I, too, worry about income when I'm crashed for so long, though I'm trying hard this week to just focus on the "job" of resting!
I have pretty much the same symptoms as you - terrible aches, severe sore throat. For me, I know this kind of crash comes from exposure to viruses. I don't actually catch viruses very often (no fever, congestion, or cough) but these are signs that my already over-active immune system has really gone into overdrive. I was actually even worse today, even after resting so much yesterday, and I think it's because my kids are both starting to get congested - more germs to further stimulate my immune system!
You rest up, too - I hope you improve soon.
Sue
Hi Sue
ReplyDeleteI thought I was over the 'plague of viruses' but woke in the night soaked with sweat and now my throat is so bad I can't talk. This is the worst season I've had in a long time. I honestly think a lot more vicious bugs are going around and our systems can't handle it.
Let's keep pulling for each other. It gets so frustrating.
Sue, Aggressive Resting--what a perfect term and empowering term for the passive rest, rest, rest that CFS demands.
ReplyDeleteI'm sorry you are still in the midst of such a big crash. Crashes do come in different severities and lengths. Hopefully this one will let you go and get feeling better and functioning more as soon as possible.
I can relate much to your frustration at not being able to be on the computer for a length of time without worsening, as this is what I experience. It is hard to put it down even when I know the consequences if I don't.
It is ever challenging to let go and not do...especially for personalities that are go, goers. Our personalities do not change with the changes in our health. How frustrating for the doer inside of us! Aggressive Resting--what a perfect term for go go goers with CFS. Turns "resting" into the important task...which it is with CFS. Do you mind if I adopt the term Sue?
Your attitude is always positive Sue, it still comes through even when you are feeling lousy and worried in the midst of a crash.
Sending you warm thoughts and wishes as you rest aggressively, Kerry
Thank you, Thank you!! The outpouring of support from all of you is - as always - amazing and very, very empowering to me. It helps so much when I'm trapped in the house like this to know that I'm still not alone!
ReplyDeletePris - Yes! This is absolutely the worst virus season in ages and not just because of H1N1. My kids' schools are overrun with sick kids. In fact, I think I know why I got so much worse on Monday and Tuesday - both of my sons are now congested and obviously carrying some virus(es). They're immune systems aren't quite as messed up as mine, so they actually catch viruses once in awhile.
Thanks for all the encouragement - it's really helping!! From the couch...
Sue
Oh, Sue, you are sounding more like you are in our boat now with the fatigue. I test positive for Epstein Barr, but my doctor is helping and I keep being encouraged. I pray you continue to find hope and encouragement, too.
ReplyDelete