Experiencing ME/CFS can change your life. It can feel really hard, but the lessons you learn from Chronic Fatigue Syndrome are so valuable. I finally came to a place where I decided that I wouldn’t change anything if I was given the opportunity.
Before experiencing Chronic Fatigue Syndrome, I was a stressed out and anxious person who was working jobs that I didn’t truly love. It took me a long time to realize that I had to slow down and find a new way to live.
10 Lessons I Learned From Chronic Fatigue Syndrome
1. Be patient.
It likely took many years for you to get to this place, it may take a while before you can get out of it.
Don’t expect to find a magic pill that will fix everything.
Now there may be supplements and medications that can help. There are also many layers to your health. Address them all. Keep in mind that your mental health, physical health, spiritual health, nervous system, and past traumas likely all will need time too.
You can do this step-by-step as you feel ready. Please don’t rush this process.
Think of it like building a house. The foundation, structure, walls, framing, driveway, appliances, and decor all have a place in the process.
2. It will get better.
I’m going to say that again. IT WILL GET BETTER.
Remind yourself of this regularly and keep hope. No matter what, stay hopeful and don’t let anyone take that away from you.
Your life may look different than it once was but you’ll develop a rich sense of love and appreciation for the little joys in life and deep empathy for others. This is priceless!
Use this time for good. Journal about what lessons you will take with you to the next phase of your life.
What will you do with these lessons? There are a lot of ways you can take this. Think of it as a chance to choose your own adventure. You get to decide which direction you go.
This is an opportunity for change and for a new kind of life. Choose wisely and choose what really matters.
3. Don’t lean on unstable people to prop you up.
Leave unhealthy relationships behind. This one is hard. I’ve been there.
You likely have felt or currently feel that you are losing everything and you need help. And maybe you do.
Just think about the emotional health of the people you lean on. If there is any hint of abuse or red flags, look clearly at it.
Maybe ask trusted close friends or family for their thoughts. It may be hard to hear, but this is a critical factor in your healing. If this rings true for you, please talk to a therapist or professional about this.
You need healthy and positive support right now.
4. Ask for help from people that care about you.
Try to educate the people that you love.
It might be easier to do this without getting overly emotional about your struggles. Save your emotion for people that can understand and empathize. Sharing articles can be a great place to start with this.
It can also be helpful to validate their feelings and then share your current struggles. Sometimes saying things like “I can imagine this is confusing for you” or “I can understand if you are feeling disappointed, I am too” can help them feel more connected to you.
Understanding their experience and speaking it out loud can help them to process as well and you two feel more like you are on the same team.
And if your family and friends are already empathetic, supportive, and understanding – let them know how grateful you are for this!
5. Find a great doctor.
For suspected ME/CFS, I recommend finding one that specializes in chronic illnesses like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, and Lyme disease.
Think about how your doctor interacts with you. Do they answer your questions in detail? Are they open to learning more about the condition? Are they open to tests that you’d like to run? Do they talk down to you? Do they discuss treatment options or dismiss your research? Do you feel like you can make progress together?
Are they open to discussing supplemental treatment options like brain rewiring/retraining programs, pacing or graded exercise, neuroplasticity, etc?
Do they ask about your personal stress levels, trauma experience, or if you have support? These three are key factors in chronic illness. If your doctor doesn’t address them, that’s ok! You can always add another team member to your health journey (therapist, coach, psychologist, somatic experiencing practitioner, etc.)
Feeling comfortable with a doctor that understands your experience and wants to help, can make such a difference. They specialize in these confusing health conditions for a reason.
Utilize their support and advice, while also educating yourself.
They may also be able to direct you to even more resources and opportunities that you didn’t even think about.
If you don’t have access to a great doctor locally, you can look into things like telemedicine for virtual support and guidance.
6. Save your energy!
Seek out resources for healthy food delivery and order most of your necessities online (pet food, medications, supplements, pantry staples).
You don’t have to go to the pet store or the pharmacy or health store to pick up these things. This can save you so much grief and allow you to use your energy for other things.
Let go of being the person that has to do it all and take some help from online services.
7. Get in the habit of resting, frequently.
One common thing in people with chronic fatigue is crashing from overdoing it on a day we feel good.
Be extra gentle and take things slowly.
Maybe you have a sink full of dishes, so you just wash three and then take a break.
Don’t expect to take the dog for a walk, take a shower, go grocery shopping, and clean the house all in one day. Break these tasks up and spread them out or just do the bare minimum.
8. Build up a way to earn an income from home.
Look into jobs or freelance work that offers remote and virtual options. Develop these skills if you need to through online courses. This is a great investment. You can find free and affordable course through Udemy, your local library (mine offers courses via Lynda), or YouTube!
There is a lot of space in remote work like tech, freelance writing, social media, administrative support, and more.
9. Reach out to people.
Don’t expect them to always be reaching out to you. And yes, I’m very sorry if that sucks to hear.
It took me a long time to realize this and when I did, I realized I wasted so much time!
People often don’t know what to say to someone that is struggling so much, so please give them grace. It’s a new process for you, for them, and for your relationship dynamic.
Additionally, find some community online. Maybe it’s in Facebook groups, on Instagram, or in a group coaching program. An online community can be really helpful in staying connected to people.
10. Find hobbies that you love and can do from home.
Painting, knitting, cooking, reading, starting a blog, stretching, gentle yoga, meditating, and coloring are a few ideas.
Take online courses or watch instructional videos on YouTube to get started or build your skills. Maybe you are interested in learning more about Human Design, astrology, the Enneagram, website development, graphic design, marketing, nutrition, coaching, fitness, writing a novel, etc.
List out all the things you might be interested in and keep that list handy! Refer to it anytime you need a little inspiration.
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