Hi friends. If you follow me on social media, you might know that recently, I’ve been dealing with the worst, longest lasting fatigue flare-up I’ve ever experienced. Fun stuff! After contracting Covid in late June, my fatigue levels (which were previously somewhat manageable most of the time), spiraled drastically. It made the wheelchair I bought in late May absolutely indispensable, but it has still been an incredibly challenging time mentally. While there are tips out there for handling the physical aspects of chronic illness flare-ups, today I want to talk about the effect fatigue can have on our mental health, and how I’ve been managing mentally.
[First, a quick disclaimer: if you’re experiencing drastic changes in your symptoms, please speak to your doctor as a priority. I am not a medical professional and this post is based on personal experience and is not intended as medical advice. Take care of yourselves and seek out professional help when necessary.]
Feel your feelings.
I know, I can hear you groaning. Not exactly the easiest one to start with, and I swear they get more fun from here on out, but this is important so bear with me! This one is easier said than done, but is a vital part of my coping toolbox. Flare-ups have far-reaching consequences in our lives beyond just their physical effects. You may struggle to carry out basic daily tasks, work tasks, and find yourself with no other option but to cancel plans you were looking forward to. All these things take a toll on our mental health.
Try as I might to remind myself that the people I rely on during flare-ups and those I may have to change plans with are happy to adjust and accommodate me, I still feel guilty when having to cancel. Having supportive and understanding family and friends is important, as is reminding yourself that this is out of your control, but it’s still tough. Journaling is a great way to vent, or just get thoughts and feelings out of your mind and onto paper if you’re struggling. Try to remember that by adjusting or cancelling plans now, you’re giving yourself time to rest which should allow you to reschedule things sooner.
Reading & audiobooks
Escapism can be so important during difficult times. One of my favourite and most accessible forms of escapism is books. I’ve always been a bookworm, and the great thing about books is that they are usually accessible for most people. If you have trouble holding a book, you can purchase book rests or use a light eReader. If you have vision impairments, audiobooks can be a good alternative. Check out my short about how to make reading more accessible for more tips.
I’ve had multiple books on the go during my flare-up which, if I’m honest, is not unusual for me even during better periods of health. That being said, having multiple genres and types of books easily available to me has been so helpful, because what I’m feeling cognitively able to read changes regularly.
Those around me can attest that it’s not unusual to find me sitting next to a pile of at least three books. If I’m needing escapism, I’ll delve into an epic fantasy book. If I’m feeling like I need some mental stimulation, a non-fiction book will do the trick, and if I’m feeling emotionally drained or low, a light fiction read is best.
Adapt where you can.
With all this talk of canceling plans, it’s easy to feel like canceling anything that brings you a little joy is inevitable. Luckily, this doesn’t always have to be the case! Even though you may have to make some adjustments, finding small moments even just once a week where you can get out of the house or chat with a friend can feel like sanctuary from the hours spent getting a little too close and personal with the texture of your bedroom ceiling.
I’ve had to adjust my plans many times during this flare-up. Having the use of my wheelchair has been a godsend and allowed me to make small trips out, and as my health has slowly started to improve, short walks from the car to the nearby bookshop with my walking stick have allowed me to get outside, get a little exercise, and feel safe knowing that the car is just a minute’s walk away. Okay yes, knowing that at the end of the walk there were hundreds of books waiting for me definitely helped to encourage me, too!
The point is, there is often a way around things if you think creatively. This is something disabled people become amazing at by pure necessity. Can’t meet your friend for a full day out? Meet them for lunch instead! Don’t want to cancel your D&D plans? Arrange it so you can take part from home via video call! It’s not a perfect science, but there are usually alternatives if you think outside the box.
Immerse yourself in nature.
Unlike me, you may not be a big nature person. Even so, studies show that getting outside in natural light for even a short period of time can give our mood a positive boost. Getting a little sun is best, but I’m in England so let’s keep expectations reasonable, because an overcast day still counts! If you’re lucky enough to have a garden like me and the weather is amenable to it, sitting outside for even half an hour can have an effect. If not, if you can make it to a local park or green space, that’s a great alternative.
This isn’t always possible of course. If you can’t get outside, even sitting by the window and getting some fresh air, or having plants or flowers in your house can have an effect. If you can’t go out, bring the outside in.
Watch Helpful Content.
Your mileage may vary, as this may be helpful or not depending on your state of mind, but I personally love watching videos by cosy, slow living creators on YouTube. I find that the ethos of slow living and finding the simple joys in life coincide well with life with a chronic illness. Many of the creators I watch make videos around their home and focus on the pleasures of being at home, rather than living a loud, busy, hectic life. These videos often help me to refocus on what’s important to be and what I value rather than what I don’t want or have, too.
Similarly, I sometimes enjoy watching vlogs of people I follow going out and about. Of course, if you’re struggling with feeling isolated or left out, this may not work for you. I find that it depends on the creator and the type of video, but sometimes it helps to vicariously travel the world from the comfort of your own sofa.
Try Video Games.
Again, this one depends on your interests, but similarly to books, I find that video games offer a range of experiences and require different levels of input, from absorbing to relatively passive and relaxed.
I’ve recently been enjoying playing Baldur’s Gate 3 on my PC, which is great for absorbing you with its immersive storytelling and engaging strategic combat. There are days though where I am cognitively spent, and during those times I turn to games like Animal Crossing and Stardew Valley. These games are slow-paced RPGs based on tending to your crops and island, talking to your fellow villagers, and have no defined objective- great for when thinking about what I’m going to have for dinner is a taxing enough exercise.
Enjoy supportive media.
Something that can give you a boost when you’re feeling low due to health issues is supportive media made by other disabled people. Instagram and Youtube are my main avenues for connecting with the disability and chronic illness community, and I sometimes open up my feed simply to remind myself that I am not the only one facing these problems.
If you don’t have many in-person disabled friends, it can feel extremely isolating to have only able-bodied people to relate to, try as they might to understand. This is where the internet is a brilliant resource for connection and belonging. Simply seeing a post you relate to or posting something yourself and having others say, “me too!” can be reaffirming. In a world not built to accommodate disabled people, having a sense of community can be incredibly powerful.
Here is a list of disabled creators who I find to be uplifting in challenging times:
And of course you can check out my channel for more tips on living with a chronic illness!
So, there we have it. I hope these tips and tricks have given you some new ideas to implement the next time you’re struggling with a flare-up. We are all different, and what works for me may not work for you, but the general rules can be applied no matter your situation and interests. I hope this has been helpful, and watch this space for more blogs about living with chronic illness and disability in future.
Until next time, love & spoons.