Tech-savvy spoonie wanted!

I’m looking for a partner in crime. The mantra of focusing on the things you get energy from is important for everyone and even more important when your energy is such a scarce resource.

I am really enjoying collecting the stories and becoming an active part of the ME/CFS community. However, the technical web bits are not for me 🙂 But I know that’s not the case for everyone! So, are you inspired by the project, interested to start building up work experience or looking for a way to contribute within our ME/CFS community and… you have some experience with building a website, or get energised from figuring it out, please get in touch!!

Volunteer position website/ social media

Do you have experience with or are keen to learn:

  • Website development, using WordPress
  • Newsletter management, using mailchimp
  • Search engine optimalisation, using Yoast or similar
  • Expanding reach on social media
  • More creative ideas about how to bring this project to the next level

I am looking for someone who likes to take initiative and can bring ideas to the table. It would be particularly suitable for someone with with ME/CFS or other chronic illness, as you can do everything remotely, at your own pace and at a time that is suitable for you. If it interest you, please get in touch on info.cfschronicles@gmail.com.

Simon’s car is back on the road

Born in Kenya, Simon spent most of his childhood in Kent, England. He developed a successful career as mental health practitioner, but started having fatigue symptoms after he took on a stressful management job. In 1997 he was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. After eight difficult years, his road to recovery really began in 2005 when he learned the right mind/body tools. From that moment, his recovery went fast and in a year’s time he was back to working full time, playing sports for hours and living a full life. He now works as a Hypnotherapist, Coach and neurolinguistic programming practitioner and has a great toolbox to help others on their road to recovery from ME/CFS.

What is your advice to people who are just diagnosed?

First and foremost, understand that some people do recover!

You may not understand why you got sick or how to get better, but the pieces to the ME/CFS jigsaw are out there. What I recommend to focus on:

  • Make it your mission to learn what helped others.
  • Establish a routine around rest and activity.
  • Listen to your body – rest when you need to rest.
  • If you are doing an activity and you get signals that you need to stop, then stop.
  • Pushing and crashing hinders recovery.
  • Pausing, recharging then doing a bit more when you feel able helps recovery.
  • Learn to process what is going on emotionally. This can be a complete game changer.
  • Less hare, more tortoise!

Understand that it is difficult for some people to understand the condition. Your job isn’t to help them understand the condition, Your job is to help yourself understand the condition.

“My biggest supporters listened, didn’t judge and respected my boundaries”

– Simon

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

My partner at the time, my daughter, some family members and a few close friends.
They listened, they didn’t judge, offered support and respected my boundaries.

What were the key elements for your recovery?

The keys to my recovery were learning how to:

  • Identify and interrupt the stressors that were hindering recovery, some of which were unconscious.
  • Create new responses; for example instead of fearing relapse, learning to trust that I will be ok even if I overdo it, and that I will keep moving towards my goals.
  • Worry less and cultivate more calm in my mind and body.

At first I had no idea that what was going on in my mind was hindering my recovery. Catastrophising, worrying about overdoing it, worrying what others thought, being upset by other people’s behaviour and their disbelief about the condition and judgement of me, were not helping me to get better.

“When I’m upset I try to reflect and
acknowledge that I acted with the best intentions”

– Simon

What do you do when you have a bad day, or feel one coming up?
I don’t think of days as being ‘bad’ these days. If I have a day when I feel tired or unwell, I look after myself. When I have a period of feeling upset by something that has happened, I am learning to:

  • Reflect on what has happened.
  • Acknowledge and forgive myself for any wrong doing on my part.
  • Feel good about myself if I know that I have acted with good intention.

“I learned to stop burning the candle at both ends and smell the roses”

– Simon

What good thing has your illness and journey brought you that you would not have had otherwise?
I have learned how to relax and smell the roses. How to appreciate simple pleasures like being able to go out for a meal, work, exercise. And I learned that I don’t have to keep going. I used to be a total hedonist and would burn the candles at both ends.

What is your go-to comfort food?
Porridge with coconut milk, apple, cinnamon and dark chocolate!

What is the best and worst movie or series you watched while you were ill?
I watched very little TV for a long time when I was unwell, because I couldn’t look at screens. However, The Way is one of my all time favourite films about a man, played by Martin Sheen, who reluctantly walks the pilgrimage route to Santiago de Compostela. Initially, he is grumpy and avoids the other walkers, but starts to open up his mind and heart to the people and the experience.

Worst movie: The telephone starring Whoopi Goldberg – turned it off after 10 minutes!

Can you share a quote, cartoon or inspirational message that cheers you up?
Whatever you can do, or dream you can, begin it.
Boldness has genius, power and magic in it.

– Johann Wolfgang von Goethe

“I had been ignoring the warning light in the car until it completely broke down”

– Simon

If you have to come up with a metaphor for CFS what would it be?
For me, CFS was the result of ignoring the warning light in the car when it came on, I just kept driving on. Eventually, the car broke down completely and needed a complete overhaul. It was only when this happened, that I realised that I had been driving too fast, in the wrong direction, and that had developed bad driving habits. I had to get the car back on the road, establish better habits and decide on the route I wanted to go!

Please share a picture of you in your happy place

Watching the sunrise at sea is one of Simon’s favourite experiences

Simon Pimenta is fully recovered from ME/CFS and Fibromyalgia and works as Clinical Hypnotherapist, Life Coach and NLP Practitioner. To learn more about his journey and his work visit:

https://mecfsexplored.com

Raelan making it through bootcamp

Raelan started to have symptoms in 2008 and was diagnosed with Chronic Fatigue Syndrome about a year later. Since then she has taken control in her own hands and developed her own recovery programme. Now, fully recovered, she is determined to supports others in their journey. From her home in Edmonton, Canada, she has set up a website, youtube channel and facebook community where she shares a wealth of information and good vibes.

What is your advice to people who are just diagnosed?

Even in the most dire of circumstances recovery is possible. Hope and optimism are everything. You need to be ruthless when choosing who and what you surround yourself with. Make sure the content you consume and virtual spaces you visit are recovery-focused. Finding a source of hope and inspiration is mandatory. Read about the recovery stories of others and surround yourself with uplifting and optimistic things. It can be incredibly helpful to learn from others who have gotten past this, but also listen to your gut. Find what fits for you because there is no one size fits all plan.

“My biggest supporters asked questions rather than giving advice”

– Raelan

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

My father, my husband Geoffrey, and my close friends. They listened when I needed someone to listen, they had flexibility with plans and understood when I needed to cancel or reschedule, and they opted to ask questions about my experience instead of giving advice.

“My recovery program was focused on supporting my body’s own healing power”

– Raelan

What were the key elements for your recovery?

I put together my own program of sorts that was all about supporting the body’s own ability to heal. It covered a few areas:

Pacing – I needed to break out of that boom-bust cycle. I needed to respect and accept my limits and use the vast majority of what usable energy I had for things that were going to help me recover.

Mental health – I worked on reducing stress and calming my autonomic nervous system by catching and dealing with my anxious thoughts throughout the day, through meditation, counseling, journalling, and so forth.

Diet changes to support my body and heal my microbiome – I switched to a predominantly whole food plant-based diet, I regularly consumed fermented foods, I did intermittent fasting and juice fasting, and I mostly eliminated  processed foods; added sugar; and alcohol.

Movement /exercise – I did a very gradual, gentle, and regimented  movement program to support my lymphatic system and slowly build back up strength and endurance.

Overall body support – I put a lot of focus on getting consistent good quality sleep,  getting daily exposure to sun, minimizing toxins, and drinking lots of water. I also got regular massages and took alternating hot and cold showers to support my lymphatic system

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

It’s all about rest and distraction! Double down on self care and binge watch a favorite TV show or whatever will keep your mind occupied on other things until it passes.

“I’m an entirely different person now in a dramatically different and better place”

– Raelan

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

After years of being in a battle with food I’m finally at peace with it. My addictions around food are healed. I enjoy exercise, but I am no longer an exercise addict. I have crystal clear knowledge about how I want to live my life. I have a thirst and love for life. I no longer bend to expectations. I own that I want something different than what most people want and that’s perfectly ok. I’m more empathic. I care more about others. I can connect more easily with people in pain. I’m an entirely different person now in a dramatically different and better place as a result of all I’ve been through.

What is your go-to comfort food?

For an unhealthy indulgence it’s a charcuterie board with a glass of wine. My healthy comfort food is berries and kombucha.

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

I watched The Big Bang Theory and Weeds start to finish multiple times!  Loved them. Don’t recall a bad one.

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

Don’t let the perfect be the enemy of the good.

“Recovering from CFS was like a growth bootcamp”

– Raelan

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

It’s like growth bootcamp! It can be a nightmare but it will teach you so much.

Please share a picture of you in your happy place

Raelan diving in Southeast Asia

Raelan Agle is an authorYouTuber, and ME/CFS community builder who fully recovered from ME/CFS and is now passionate about sharing recovery information with others. You can find her on:

Website: https://raelanagle.com
YouTube: https://www.youtube.com/channel/UCy4EjD4exCbtuGQkSa71ozA
Instagram: https://www.instagram.com/raelan.agle/

Nyki surviving the black fog

Nyki started having niggling symptoms in the early nineties and eventually in 2015 the doctor suggested it was fibromialga. However, learning more about the illnesses over the years she recognises that she was actually showed more the classic CFS/ME symptoms in addition to fibromyalgia symptoms. Nyki has made a great recovery and is now living close to a full life. She lives in High Wycombe, United Kingdom, with her dog Oscar and is about to finish her degree in Chinese medicine. Here she shares her story and what has helped her to recover.

What is your advice to people who are just diagnosed?

Take control and own your own illness. Your doctor can advise but ultimately it is up to the individual to make the decisions about their body. It isn’t always a life sentence and recovery is possible.

“Letting go of toxic people and emotions was crucial for my recovery”

– Nyki

What were the key elements for your recovery?

Targeted nutritional supplementation. This can be overwhelming so finding a good functional medicine doctor is worth considering. I also had to make lifestyle changes that included diet and letting go of toxic emotions and people. Five element Acupuncture was beneficial for the emotional aspect.

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

I rarely have a bad day now but if I do I usually recognise the trigger. Resting up and remembering tomorrow is a new day is important.

“My illness has led me to a degree in Chinese medicine”

– Nyki

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

A degree in Chinese Medicine! I discovered this amazing modality of medicine quite by accident and it has taken my life in an extraordinary direction. I am in my final clinical year with a focus on female healthcare in the area of Chronic Fatigue, Myalgic Encephalitis and Fibromyalgia.

What is your go-to comfort food?

I always had a sweet tooth but refined sugar will cause me flares in Fibromyalgia symptoms. I discovered a Bristol based chocolate company called Adams chocolates. Sugar and dairy free and absolutely gorgeous!

A lockdown favourite has been deliveries from a local Indian restaurant that does Indian street food using only 100% natural ingredients. Light, fresh and absolutely delicious. Convenience, processed food makes me feel ill so it is important to me to find good quality takeaways so I can have a break from cooking everything from scratch.

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

My recovery was a long time ago so I can’t really remember. I do remember however, spending hours online searching for answers once I realised my doctor wasn’t going to be the route to my recovery. I think I was so determined to find answers that TV didn’t really figure.

I have recently binged watched the Handmaid’s Tale though which I can highly recommend!

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

Watch your thoughts, they become words
Watch your words, they become actions
Watch your actions, they become habits
Watch your habits, they become character
Watch your character, it becomes your destiny

– LAO TZU

“CFS was like a thick black fog pervading my mind and muscles”

– Nyki

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

My experience was like I had a thick, black fog pervading my mind and muscles, impacting movement and clarity of thought.

Please share a picture of you in your happy place

Nyki with her dog Oscar

Titia is airlifted to a remote island

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!

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

– Titia

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”

– Titia

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”

– Titia

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

Titia looking out over the ocean, during a dolphin watching trip.

Adele living with her mother in law

Adele started to have symptoms in December 2012, not being able to do the runs she usually enjoys. She investigated more about it and discovered she met all the criteria of Chronic Fatigue Syndrome, based on that, six months later she self-diagnosed. Now she is able to live at 90% of her usual self when all is well, and has started a new career as freelance writer and editor. She lives with her husband and two children in the remote town of Saskatoon in Canada.

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”

– Adele

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”

– Adele

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”

– Adele

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

Adele with her daughter in snowy Saskatoon

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