It's been a little over a month since the beginning of NURA Community, and members have been engaging with a plethora of thoughts, comments, and reflections. From valuable insights to candid observations, here's a selection of our community's contributions so far.Â
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1. Pacing is tiring (and boring)
Pacing feels like a full-time job. I get tired of constantly thinking about the potential impact my every move might have on how I feel. That said, I'm grateful to be able to have a tool that helps me to manage my condition.... It just gets really boring sometimes!
2. Everything is relative
I think my opinion of how my symptoms/energy levels are is rather different to what it was prior to being ill. A positive day wouldn't be symptom free but it would mean I could shower or read a chapter of a book. If you'd have asked me 10 years ago if that would be a positive day i'd have said it would be a very bad day.
3. It can be helpful to embrace the joy in small moments
For me, I discovered a newfound love for houseplants. I was indifferent about them before and frequently killed them. Now, they are treasured. Taking care of them has become a quiet and rewarding hobby and seeing them flourish under proper care fills me with a feeling of accomplishment.
I played hockey and basketball before I got sick. Nowadays I play online chess and do chess puzzles constantly, keeps my mind and my competitive spirit alive.
Little rituals definitely help.Â
How do you find joy when you're limited with energy? Have you found any new hobbies or interests since developing your illness? Answer this NURA member's insightful question here. Â
4. PEM avoidance applies to mental effort, too
...It has meant things that used to be restful for me (like watching tv or scrolling on my phone) are no longer restorative. I have found some good podcasts and audiobooks to shut my eyes and listen to for a bit.
5. Validation and self-compassion are important
In the early days of my Long COVID my family doctor said, "What you are experiencing is very real." That meant the world to me back then. Still does!
None of us chose this road. It chose us, so how can it be my fault? However, it's so easy to blame yourself when you've got no one else to blame.
6. It's difficult to talk about your illness, even to loved ones
I only tell one person how I’m really feeling. I think I’m boring the hell out of everyone else and because they can’t see an ‘improvement’, they don’t have anything to hang their response on.
I think unless someone sees you everyday or has experienced the condition themselves they won't understand the undulating nature of it!