Comments on: The Unexpected Afflictions Of Easing Restrictions

By: Cassie Creley

Cassie Creley — Mon, 13 Sep 2021 23:47:15 +0000

So relatable Pippa! I keep hearing about things re-opening and having a moment of going, “Yay, we’ll be able to go to theaters and concerts and travel again!” And then it hits me that just because things are available doesn’t mean I’ll suddenly be well enough to actually do those things. You explained the feeling so well—in many ways it reminds me of first getting diagnosed and losing the ability to do most “normal” things. Thanks for recognizing a new challenge many of us are facing with chronic illness.

By: Sue Jackson

Sue Jackson — Sat, 24 Apr 2021 20:29:20 +0000

Yes, I can completely relate! I definitely have mixed feelings about the lockdown ending. For the past year, the world came to me on my terms for the first time in my 19 years of illness! Everything was available online, even my book groups, and I didn’t have to miss out on anything. Now, everyone else is getting back to “normal,” but my normal still involves a lot of time at home.

My issue is slightly different than yours – I didn’t lose stamina from not doing as much, but I AM in far worse shape than at the start of 2020. In March last year, I suffered a serious relapse that I am still working my way out of. I am starting to make progress and finally see some improvements, thanks to a bunch of new treatments, but like you, my stamina is still quite low and old activities I could enjoy most days – like a walk with a friend – will now cause a crash.

I am also horribly worried about getting the vaccine (though now, after extensive immune testing, I will try it) and having it cause an even worse relapse. So, again, friends are all so excited about being vaccinated and getting out again and inviting us out, and I feel like odd person out.

Thanks for putting into words what so many of us are struggling with!

Sue

Live with ME/CFS

By: Dawn

Dawn — Sat, 24 Apr 2021 10:41:54 +0000

Absolutely! I’m a lot older than you (heading towards 60) and I’ve had ME for nearly 20 years now. I’m really worried about how I’ll cope with noise and people, although as a chronic asthmatic with badly damaged lungs I’m still pretty much shielding until I’ve had my second jab. I’ve been lucky enough to manage outdoor swimming throughout the winter, but that’s not the same as meeting friends for a coffee somewhere or going to stay with a friend. I do wonder if I ought to try and have the TV or radio on to try and get used to background noise, but I like the silence. I really hope that your body gets back to your “normal” relatively quickly and that you can start to get back some social life.

By: Anitra Cajander

Anitra Cajander — Thu, 22 Apr 2021 02:08:14 +0000

I have been laying down totally alone here on my sofa over 21 years (after a car accident) with hypersomnia,cfs/me,chronic pain etc. so my ‘lockdown¨’will continue forever…so yes…I can relate too !
Greetings from Finland <3

By: Ester Fleurke

Ester Fleurke — Wed, 21 Apr 2021 08:29:25 +0000

Feeling you! I relate!!!