Titia is airlifted to a remote island

What is your advice to people who are just diagnosed?

The more rest you give yourself, the quicker you will be able to start building up again.

Who is/ are your biggest supporter(s) and what did they do?

My boyfriend, first of all for sticking with me, even though we only started dating 2 months before I was diagnosed! And for continuously learning about it, asking me questions about what I experience and what I need. And for reminding me of what I need at moments I forget 😊. Secondly, my sister-in-law, because she keeps telling me that she is so impressed how I am dealing with it all, which is amazing to hear when you feel rubbish and weak!

“My daily routine helps me to avoid overdoing it and to avoid falling into depression”

What were the key elements for your improvement?

Establishing a daily routine. It both helps me to reduce the risk of overdoing it when I feel well, and helps to avoid falling in depression during bad spells. I adjust the intensity up and down depending on my energy levels, but I do them every single day. Inspired on the book Atomic habits by James Clear, doing anything once does not make much difference, but if you start doing small healthy habits every single day again and again, it adds up. For me, my routine includes: meditation, journaling, light yoga, walk, taking vitamins, practising Spanish and a siesta.

What do you do when you have a bad day, or feel one coming up?

Number one rule for me is to stick to my routine, in a super light manner if needed. It grounds me and, even when my brain is not functioning and my body not willing, it helps me to keep going. It makes me feel I achieved something, despite having a set back and that I am still working on my recovery. So, for example, I still meditate, but maybe I allow myself doing it lying down. I then get up and get my yoga mat out. I pick a recovery yoga, or even just a 5 min sequence or a moving meditation, as long as I do something. Apart from my skeleton routine, I just treat myself with things that make me feel comfortable, cups of tea and curling up on the sofa with a blanket.

“My illness taught me how little I need to be happy and knowing that has made my life lighter”

What good thing has your illness and journey brought you that you would not have had otherwise?

It made me realise what is actually important to me. When I had to tune my life down to the absolute bare minimum, I found out what was really important for me to hold on to, and how many things I actually didn’t really miss when I stopped doing them. Being aware now how little I need to be happy has made my life a lot lighter.

What is your go-to comfort food?

As anyone in my family can tell you, dark chocolate. I don’ really have a sweet tooth, and eating healthy is important to me as I instantly feel worse when I indulge in cookies, cake or crisps. But my daily chocolate is one of the small things that does make me happy 😊

What is the best and worst movie or series you watched while you were ill?

Fleabag and Mrs. Maisel are the definite winners. Both with female lead characters, but I am sure that’s a coincidence? I haven’t bothered sticking with anything I didn’t enjoy, so don’t really have a worst. During the day I prefer an audio book over telly.

Can you share a quote, cartoon or inspirational message that cheers you up?

“Give me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.” – Reinhold Niebuhr. I think the tricky thing is the last part, and rather than focussing on blindly trying to accept everything that happened to you or to go crazy finding solutions, it’s taking the time to reflect and use your limited energy and serenity wisely.

“It’s like being airlifted and then dropped off on a remote island where you don’t know what the rules are”

If you have to come up with a metaphor for CFS what would it be?

Be taken to a remote island by surprise. You get airlifted and dropped off, and when you arrive you don’t know anything or anyone, nor whether you will ever be able to come off the island again. But once you accept that you are on the island and slowly start exploring, you find out that you can sit in the sun and that there are some coconut trees nearby. Then you discover there are other people also living on this island and you don’t feel so alone anymore, and they have already figured out how to make a fire and what to use to make a nice bed. Slowly you start building a comfortable home for yourself. You are even learning how to build a boat and are able to travel to other islands. The option that you may be able to travel to where you came from seems on the horizon, but you realise that you may not want to go there anymore.

Please share a picture of you in your happy place

Symptoms starting: October 2018
When diagnosed: August 2019
Living at about 40%, but feeling much happier
Hometown: Reigate, United Kingdom

Adele living with her mother in law

What is your advice to people who are just diagnosed?

Be kind to yourself. I know it’s so cliché, but chronic illness is real and it’s no small thing. It’s life-altering and, in the case of Chronic Fatigue, you need to allow yourself to take care of yourself in new ways. It’s not something you can ‘beat’.

Who is/ are your biggest supporter(s) and what did they do?

My biggest supporter is my best friend simply because she always ‘believed’ me. That was SO important to me in the early years of having this illness. She knew and saw how my life had been altered, and she often asked about it even when I seemed to be doing well. She is also no stranger to bringing me amazing baking, meals, and books!

“The key elements for me to get better were rest, acceptance, and focusing on what I could do rather than what I could not do”

What were the key elements for your recovery?

The key elements for me were rest, acceptance, and focusing on what I could do rather than what I could not do. And in that order! In the early days, the more I rested, the more functional I could be. That meant a lot of sleep, sitting down whenever I could, and sometimes wrapping up the day at 4PM. That was a hard time of disbelief that my life had been altered so dramatically and so permanently, and there was a lot of mourning the things that I could not do–things like exercise and engaging with my kids with a full tank. But as I mourned, I began to accept my new ways, and that brought healing both physically and mentally. Once of the biggest things that came from this ‘acceptance’ was realizing that, even though I couldn’t (and still can’t) do vigorous physical activity, I could still practice my art of writing which I even made into a new and exciting career! And I still could be a mom to my kids in almost every meaningful way. And I could walk with my friends and drink tea and enjoy sunshine and argue about politics and spend time in my favourite places in nature!

What do you do when you have a bad day, or feel one coming up?

If I have a bad day, I plod slowly through, nap if I can, and go to bed early. I avoid anything overly physical and keep going slowly. I remember after a long trip, coming home and knowing that I was going to suffer terribly with jet lag for a few days. The first thing I did was mentally accept that I was going to have a bad day or two, and then reminded myself that I would be better in a few days. And I was!

“The best thing my illness brought me was uncovering my passion for writing”

What good thing has your illness and journey brought you that you would not have had otherwise?

The best things my illness brought me were uncovering my passion for writing and EMPATHY. Before this illness, I was go-go-go and NEVER set time aside to explore my artistic side. CFS literally forced me to stop and the art of writing emerged in that space. I am so thankful for that. The other thing is empathy. Every new life experience, especially struggles, help you better understand and empathize with the adversities of others.

What is your go-to comfort food?

Soda crackers. So salty and comforting! But if it has to be a meal, Lamb Lababdar!

What is the best and worst movie or series you watched while you were ill?

I did binge many seasons of the Bachelor in the early years of my illness. So yes, that is both the best AND the worst series I can recommend. Honourable mentions go to: The Crown, Downton Abbey, Suits, The Office, Poldark, and This is Us

Can you share a quote, cartoon or inspirational message that cheers you up?

“Mom, can you read with me?” YES! I CAN!

“It’s like your Mother-in-law showing up one day and never moving out”

If you have to come up with a metaphor for CFS what would it be?

It’s like your Mother-in-law showing up one day and never moving out! It’s not easy, but you’ve got to learn to live her. This is a time to discover your shared loved of British period dramas and long cups of Earl Grey.

Please share a picture of you in your happy place

Symptoms starting: December 2012
When diagnosed: 6 months later
Living at almost 90% when all is well
Hometown: Saskatoon, Canada

Adele Paul is a freelance writer and editor living in Saskatoon, Canada. Find her at: www.tuesdaysisters.com.