Even after 11 years of living with ME/CFS, the emotional highs and lows that go along with the unpredictable physical symptoms still take me by surprise. I know intellectually that it's all about chemistry - cellular metabolism, hormones messed up, neurochemicals in the brain present or absent - but it still feels like some kind of voodoo when these ups and downs hit me.
This week has been a typical rollercoaster in that respect. I'm going without Imunovir for the 3rd week in a row (it's been back-ordered - more on that next week), so I expected to feel awful, but I've actually been doing pretty well - just when you think you can predict this crazy illness, it proves you wrong, just to keep you on your toes! Monday night, I was looking forward to the next day - nothing special going on, but I was feeling good and just looking forward to another good day.
I woke on Tuesday feeling a bit tired but thinking I'd be OK. I had to drive my husband to the eye doctor for a retinal check (all good!), and while I waited in the waiting room, I felt worse and worse. By the time we left there, I was achy all over, exhausted, even getting a mild sore throat - you know, typical CFS crash. But we had some errands to run, and we had been looking forward to having lunch together, so I kept going. An hour later, I was hitting bottom, not just physically but emotionally, too. I was feeling like I just couldn't take another moment of being in the car, and even after I got home and into bed, I felt horribly depressed, thinking to myself that I couldn't possibly tolerate a whole lifetime of this torture. Now, that is a pretty normal feeling for many people with ME/CFS, but as I said, I've actually been quite well lately. I couldn't believe that one bad day could put me in such a dark state of despair.
The next day, Wednesday, I woke up feeling good again. I was able to go through with my plans to go shopping for Mother's Day and my mom's birthday (both this weekend) and took advantage of the rare shopping excursion to get a few things for myself, too. I had another good day today, picking up the house for our cleaning service, dancing to the radio, sending my gifts from the Post Office, and even doing a little weeding in our flower bed (yes, all in one day!).
During these last two good days, I have been feeling euphoric, absolutely filled with joy and grateful for every small thing in my life. Like I said, I know it's all brain and cellular chemistry, but it still feels so miraculous...and bizarre. If I didn't know better, I would fear that such drastic mood swings meant I was losing my mind! But no, it's just another "normal" week in the crazy life of someone with ME/CFS, riding the rollercoaster of chronic illness. Wheeeee!
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.
6 comments:
I could have written this same post (except the good days lately). I mean it seems like one day things aren't too bad and the next (unperdicatable much of the time) the body swings into severe illness and our mood with it. We are tough women for ploughing through all this, that's what I think.
A very relateable post, Sue. It's only been two years for me, but I'm already starting to forget what it was like to NOT be on this rollercoaster.
Wow! It is amazing, what you describe.....ups and downs..good days...bad....the dance of ME/CFS
That's just me! Yesterday I had the first good day I've had in a while and u felt on top of the world, I wondered why people ever hit in bad moods when they have health!
Then today I'm right back, and I'm struggling to be patient, and I'm easily upset. And I've no idea why yesterday was good and back to normal today!
Thank you thank you thank you....this is the hardest part to describe to others how crazy you feel...i often lie and bed and rewind history and think is this all some weird messed up dream...thanks again xo hd
I want to thank you too because I go through this as well (right now as a matter of fact, crying as I type this although the beginning of May has been hellacious for me ever since I lost my daughter the day before mother's day 14 years ago so that's not helping). It is SUCH an emotional and physical roller coaster for those of us living with disease!
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