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Living with Severe ME/CFS

Anil van der Zee lives with severe ME and has given permission for Emerge Australia to share his lived experience.   

Anil van der Zee May 1, 2023  

Before this year, I was too ill for approximately five years, which prevented me from even thinking about anything related to dancing. A mixture of it being too far of a distance from the life I was “living,” and it being too painful. On top of that, I could not tolerate watching moving images on a screen, listening to music or sound, among other stimuli. Since I moved to a quieter place, I have been able to watch some short videos of dance, sports, and general life again, and that heightened my own awareness of the life that I unfortunately have lost. Who knows for how much longer?  

I’ve been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I’ve decided to film my current life with M.E. Not that my days are that exciting, but I often receive questions about how I get by, including how I eat, clean, go to the toilet, etc., from both my non-ME friends as well as individuals from the patient community and medical professionals. It might give a unique insight into what the disease forces you to do. I’ve tried not to hold back on any details, including the private ones, and show a step-by-step guide through my day. I hope you’ll enjoy watching it. There are English, Dutch, French, German and Spanish subtitles included. I advise you to turn them on to understand my English. 

 For more information, please visit Anil’s website 

The days with M.E. 

Ricky Buchanan worked with Emerge Australia to write this in 2021 and was too ill to update or add to it in 2022, as her severe ME/CFS has worsened. Ricky has again kindly allowed us to share her tips in 2023.

What is Severe ME day? 

Severe ME Day is recognised globally as a day to acknowledge the strength and spirit of the estimated 25% of individuals living with ME/CFS who have severe or very severe symptoms. These individuals are often housebound or bedbound and the least visible in research, support, education, and awareness. 

In recognition of Severe ME Day, severe ME/CFS patient Ricky Buchanan has worked with the Emerge Australia team to collate a collection of severe ME/CFS tips and tricks she has shared on her website and social media along with some new tips too. Ricky describes herself as a Geek-Creative-Writer-Disabled-Bedridden-Queer-Internet Citizen. Ricky has been a severe ME/CFS patient for over 20 years and is a prolific writer online, sharing her thoughts on living with ME/CFS and how she spends her time. She and the team hope these tips can help someone in even a tiny way. 

“When you have severe ME/CFS, even small things can make a really large difference to your quality of life. It might be buying a remote control power socket so you can turn the fan on and off yourself…or hanging crystals in your window to turn the slivers of sunlight you can tolerate into rainbows to delight you…realising you can save energy by brushing your teeth lying flat in bed…or buying a tiny fridge for your bedroom so you can have a cold drink available anytime. 

Each thing is small by itself, but the result of all of them added up can make your life meaningfully better. 

Here are some ideas and hacks that may help. Every one of them may not work for you but I hope you can find one to help improve your day.” – Ricky Buchanan

Hacks & tips: 

Pathology accessibility: Did you know you can get blood drawn at home if you are too sick to go to a blood collection location? Your doctor probably needs to refer you there at least the first time (different places have different rules). Ask your GP if they know which local pathology centre does home visits, or ask your chronically ill social media friends if that fails!

Hydrant bottles: Hydrant bottles allow you to remain lying down while taking a drink and are a fantastic way to allow you to save a little energy. Every little bit counts. The 1L bottle can be hung from a bed, chair, or wheelchair and has a bite valve to allow you to sip easily with no spillage. Hydrant bottles can be purchased on Amazon here

Picking clothing: I can’t go to the wardrobe to choose clothes and thanks and to brainfog I can’t remember what’s there to tell disability support workers what I want. So I’ve taken photos of the shirts I have and built myself a “virtual wardrobe” on my computer. This way I can look at the photos and choose exactly what I want. Unfortunately, it doesn’t stop me from choosing things that are currently at the bottom of the laundry basket! 

Here is an example of what my virtual wardrobe looks like:

Slowing audio down: Slowing down audio doesn’t help everyone but it’s a handy trick that’s worth experimenting with nonetheless. Slowing down audio can allow you to listen to audiobooks and podcasts bringing enjoying them back into the realm of possible. To read more on how to slow down audio visit my guide here

Severe ME/CFS Lifestyle and Activity tips: 

Prioritise ambience: Having a cozy and pleasant home that feels good to be in is key, especially when you spend 24 hours a day 7 days a week there. By doing little things to improve your space, you can make it feel warmer, personal and a place that brings you joy. This can be as simple as a string of fairy lights, a small desktop water feature, pretty quilt covers, it all makes a difference. To read more about how I get the most out of my home, click here

Self-care: Being realistic with your self-care when chronically ill is difficult, the usual suggestions of going for a walk or going to the movies just don’t apply. That’s why I designed a unique set of self-care cards with chronically ill people in mind. The deck offers 60 action cards, plus 5 blank cards you can personalise with your own actions and instructions about adapting cards to your own ability level. When you need some time to focus on yourself, draw a card and follow the suggestion on it. You can purchase the deck here.

Computers: Having access to a computer or a similar device such as an iPad or tablet can make a huge difference and open a wide range of activities. Personally, I like to write, you can download art programs to draw and paint, you can do short educational courses to learn something new, the list goes on. 

They aren’t suitable for everyone but if you can manage them, computer games are a great way to pass time and keep yourself occupied. Unfortunately, they are not usually accessible to those with more visual sensitivity but for those sensitive to sound you can simply mute your computer or mute the game itself. Puzzle games and hidden object games are great to use at your own pace and can be found for free online. Websites like Puzzle Garage allow you to make an account so the work you do on a puzzle is saved for when you return. To read more about how I spend my time, click here. 

Thank you

The Emerge Australia Team gives our deepest thanks to Ricky for taking the time to work with us on this piece. We know time and energy are precious things in our community and we cannot thank people like Ricky enough for giving us a little bit of hers. To read more about Ricky, her life, and her projects, you can visit her website Not Done Living.  

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