Giving up has a bad rap. We are taught - by our parents, by our schools, by society - to never give up, to persevere, to overcome whatever obstacles stand in your way. I have always been a fierce push-through-it kind of person which made adjusting to my new life with ME/CFS so much harder. This illness runs contrary to everything we have ever heard in our past lives: if you keep pushing through, persevering, never giving up...then you just keep getting sicker and sicker.
My first years with ME/CFS were defined by this crazy rollercoaster ride known in CFS circles as the push-crash cycle, especially before I had my diagnosis or learned about post-exertional crashes. I'd feel horribly sick - too sick to do anything at all - so I'd lie on the couch and in bed, unable to do anything. Then, I'd miraculously feel better and jump up and resume my normal activities again - even worse, I'd do more than normal in an effort to make up for those lost sick days. Then, of course, within a few days I'd be back on the couch again. Back in those days, the ups and downs made no sense to me. Now I know better, but it is still hard to go against all those societal norms and give up.
I had plans today, urgent plans. I "had" to go to the Post Office to mail my step mom's birthday gift so it will arrive in time for her birthday on Friday. I "had" to go to the Verizon store to change an erroneous bill and fix my sadly broken cell phone. I "had" to stop at the grocery store and grab a few items for the rest of the week.
But I woke up feeling awful - exhausted after 9 solid hours of sleep, still tired but too wired to sleep anymore. I thought I'd feel better after washing up and doing some gentle yoga. I procrastinated on getting my package ready and instead read my e-mails while watching the Today show. I kept telling myself, "I don't feel that bad." I tried to trim down my to-do list, thinking that I have to get to the Post Office but I could put off the other errands.
Finally, after putting in a load of laundry and noting the sore throat creeping in and the aching-all-over feeling, I gave up. After 11 years, I should be familiar with this sort of day - what I call a Plan B day - but it still took me several hours to finally admit that I needed to give up and give in. The world won't end if I don't get those things done. I decided I will just call and let my step mom know that her gift may be a day late.
You know it is a crash day when you finally decide to give up your to-do list and stay home and almost weep with relief. Maybe it was the very busy weeks and weekends filled with houseguests we've had lately. Maybe it's my son's cold triggering an immune system flare-up. Whatever it is, I've been struggling all week - told my husband yesterday I've just been feeling wiped out and sluggish in spite of getting plenty of rest - and it just feels so good to give in.
I've made another cup of herbal tea, piled up the pillows on the couch, and gotten myself horizontal. I have my book by my side and the Fall book catalog I never seem to find time to go through.
I am giving up and giving in. It is the right thing to do. It is what my body needs. Why is it so hard to do?
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.
You are so not alone in this! I have been struggling with this (and anger, as well as the rainbow of emotions that comes with chronic illness) so much recently and I find it seems to be getting worse as I get older! Not easier, as I somehow (and foolishly) thought it would. Thank you for sharing this! Thank You! I hate knowing others suffer in similar ways, it breaks my heart to be honest, but it is also such a deep comfort knowing there are others how do understand. (That's why I shared when I was angry last week and got a reply that helped me through at that moment!) (((hugs)))!!!
ReplyDeleteAh, Jo - Sorry to hear you have been going through similar challenges. You are right - it;s awful to know others are suffering but also comforting to know you are not alone.
DeleteI love your phrase - "rainbow of emotions" - that says it all!
Sue
It does and I wasn't even sure how to say it to begin with lol!
ReplyDeletewow, yes, I know the exact type of day. For me it's going to do something I can usually manage and feeling weak and out of breath. And the sore throat creep oh YES! It seems like you have been running a bit ragged lately, I'm glad you were able to just rest and give in to it. It's funny how when it happened to me 2 days ago (and I didn't even have out of the house stuff planned, just at home items I wanted to do)...it was still hard and frustrating to let go and just colapse on the couch. It's been 11 years! Hope that the rest brings you back to 'normal' quickly.
ReplyDeleteThank you for sharing this. Once again you've managed to eloquently communicate a typical experience for sufferers of this illness. Even when we're used to the concept of having to give in to plan B days its never easy. Hopefully this post will encourage others to accept the necessity to give into them.
ReplyDeleteI also agree that whilst none of us want to think of others suffering it is reassuring to know that others understand the challenges of living with this condition.
Love and best wishes.
I've had medical people tell me that I need to do a little more each week or month to gradually improve. Lately I've been thinking--would they tell this to people that have MS? That's kind of an extreme example. Would there be other ways of saying this? For me, it's not something that I can improve.
ReplyDeleteActually, that might be OK advice for someone with MS! But CFS is unique in that it includes an intolerance to exercise aka post-exertional malaise, where any kind of exertion makes us sicker - this has been very well-proven in many studies and research. So, the key is to find a level of activity that you can tolerate without crashing the next day - this requires careful observation and record-keeping by you. Once you figure out what your limits are, then try to stay within them. So, maybe you will discover that you can tolerate a slow 10-minute walk, but walking for 15 min causes a crash - then try to take a 10-min walk each day that you feel well enough (anytime your symptoms are flared, it is a signal that you need to rest). By staying within your limits this way, you may be able to slowly improve and gradually tolerate more activity. You gain nothing by pushing past your limits - in fact, you lose ground. You can also help to monitor activity level with a heart rate monitor.
DeleteTo increase your limits, try treating Orthostatic Intolerance. Beta blockers have worked very well for me - they lower my heart rate to more normal levels, allowing me to do much more without crashing.
For more information, search for any of these terms here on my blog or send me a message.
Sue
Well written, Sue. After twenty six years of this damn disease, I still have trouble admitting it's a plan B day.
DeleteGreat post!
ReplyDelete