Titia started feeling unusually tired from October 2018. In August 2019 she was officially diagnosed with Chronic Fatigue Syndrome. Although she still operates on a limited capacity of about 40% of what she is used to, she is learning to live with the limitations and is feeling much happier. Often even happier than before she fell ill. Originally from the Netherlands, she is now completely at home in Reigate, United Kingdom.
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!
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.
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.
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