As part of our ongoing community spotlight series, we have the privilege of asking NURA Community members to contribute their unique perspectives on living with Long COVID and ME/CFS. These conversations illuminate the diverse experiences, challenges, and triumphs within our community. If you'd like to take part, contact us here, or email us at nuracommunity@gmail.com.
What do you wish people understood about living with Long COVID?
That it is so changeable! Some days I will be OK and have some semblance of my old life back but other days I am back to rock bottom. This then brings with it a lot of frustration and complex emotions to deal with on top of the physical symptoms. The other thing people don't understand is that the NHS lacks knowledge about this and you are often given misinformation, bad advice or even dangerous advice so you need to be prepared to self advocate and undertake your own research.
Discuss an aspect of your condition that people rarely talk about.
I think for me one of the things I see little about is the complex emotions that come with a chronic condition. And that even when wonderful positive things are happening, there can still be a tinge of sadness or guilt. For example, I recently booked my honeymoon. It's going to be the trip of a lifetime, and we got a great deal on it. Of course I'm excited for it. BUT, a cruise is not the kind of trip we would have chosen if I was healthy. We would have done something more adventurous and active. Being excited for a wonderful trip doesn't take that frustration away. Or the guilt that my partner is missing out on doing hobbies he loves. It's such a difficult balance and you're constantly having to tell yourself all the positives to keep them at the forefront of your mind.
I think for me one of the things I see little about is the complex emotions that come with a chronic condition. And that even when wonderful positive things are happening, there can still be a tinge of sadness or guilt.Â
If you could invent something to help with your health, what would it be (besides a cure, of course!)?
I think I'd invent a device that blared out some sort of alarm anytime a medical professional said something ignorant or inappropriate. And for medical gaslighting, of course. This alarm would also then send a report to the Care Quality Commission!
I think I'd invent a device that blared out some sort of alarm anytime a medical professional said something ignorant or inappropriate.
My health often stops me from _cooking_, so here is what I do instead.
Cooking from scratch is really hard for me now. I'm often tired and in pain by the end of the day. But I still want to have a healthy meal! So, when I do cook from scratch I always make extra and freeze it down so I've got portions of healthy, ready made meals. I use my slow cooker a lot as it makes cooking more accessible to me. I also buy pre chopped veg, and frozen veg a lot of the time, as well as sitting down to prepare food!
What's the best piece of health/management/coping advice you've ever received?
Use the damn mobility aids! They're freedom.Â
What has surprised you most about living with Long COVID?
I'm so often surprised by how much other people take their health for granted. That's been a big one for me. However, I've also been surprised at how much I've taken joy in little moments since being ill. When you're forced to live life at a slower pace, and future planning is so uncertain, you learn to live a little more in the moment. And I try to find the joy in the little moments, something I never used to be very good at!
When you're forced to live life at a slower pace, and future planning is so uncertain, you learn to live a little more in the moment.
Reflect on the role of advocacy in your life with Long COVID, whether it's advocating for yourself in healthcare settings, raising awareness in your community, or participating in advocacy campaigns.Â
If I didn't self advocate, undertake my own research and share this with my doctors, I would be dead. I have had terrible experiences with my GP. I diagnosed myself initially and pushed for tests. I didn't get a formal diagnosis until 6 months later. By which point I'd already started self treating and had prevented some of my symptoms deteriorating. It is not an understatement that this has saved my life. Never be afraid to self advocate, you have a right to do this. You have a right to a second opinion and to question advice given to you. If you're in doubt with medications or treatment you've been prescribed then get some more info before you take it. And if a diagnosis doesn't feel right then keep pushing and questioning it.Â
Never be afraid to self advocate, you have a right to do this. You have a right to a second opinion and to question advice given to you.Â
Some misconceptions about my illness are...Â
That I'm lazy. I desperately miss hiking and climbing. I want to be active and doing these things. I do not enjoy sitting down so much!
How have the relationships in your life been affected by Long COVID (and any tips for others)?
I am incredibly lucky. My parents have supported my brother through similar conditions so they understand it. My brother understands it because he experienced similar first hand. And my partner is incredible.Â
The hardest relationship for me is with my son because he's so young and he doesn't understand why I can't do what I was doing last year. And that brings a lot of guilt. I try to be present with him and have one on one time with him doing activities that aren't physically draining. I've also used this as a learning opportunity to teach him about ableism and accessibility. He loves my wheelchair!
The hardest relationship for me is with my son because he's so young and he doesn't understand why I can't do what I was doing last year. And that brings a lot of guilt.
Have you found any particular outlets or activities that help you find comfort or distract you from your illness?
I have a huge range of hobbies in my toolbox to keep me distracted. I love being creative because it's known to be good for mindfulness, and you get a sense of achievement when you finish it. I also try to have something at least once a month that's a treat for me and me only. Such as getting my nails done, or having a massage, or buying a new pair of comfy jammies! It's important to maintain some self care.I'm also a really big reader and this is escapism at its best. I know people struggle with brain fog but on days when my brain fog is bad I'll read kids' books! It's easier to digest but still good fun.
Share your story
If you'd like to take part in a member interview, get in touch at nuracommunity@gmail.com.
Equally, if you'd like to write or create any other content for the community, let us know. We’re interested in:Â
Reflective essays on personal experiences with chronic illnessÂ
Opinion pieces on policy, science or advocacy surrounding Long COVID, ME/CFS and related conditionsÂ
Scientific articles communicating emerging research developments - or other aspects of science or medicine relating to these conditions - in a digestible manner (particularly if you are scientifically literate and/or have a background in science)
Creative pieces, i.e. prose, poetry, illustration or graphic design, communicating or exploring different aspects of chronic illness experiences around Long COVID or ME/CFS