An ME/CFS Blog

A disabled gal living her best life with Myalgic Encephalomyelitis. I am an amateur patient advocate and will be sharing my experiences and research to raise awareness.

[thesecretlifeofmecfs]

Welcome to my blog!

I've been living with ME/CFS for almost 11 years now. I have learned a lot from my journey, and I also have made it my mission to become a patient advocate so I can share my experiences and research to help other patients, their families & friends, and their medical professionals.

I've been wanting to start this blog for several years now, and after coming down with another very severe bout and becoming bedridden- I realized that now was as good of a time as ever.

ME/CFS stands for Myalgic Encephalomyelitis, previously known as Chronic Fatigue Syndrome. This illness is characterized by its trademark symptom of Post Exertional Malaise, or PEM, which is an inappropriate amount of fatigue following minimal activity. In as many as 25% of cases, this leaves patients bed or housebound (source: Mayo Clinic Proceedings). ME/CFS is considered a severe disability, with very few people living with this illness that are able to work.

Despite being such a disabling illness, ME/CFS is severely underresearched and most medical professionals are vastly undertrained, frequently leading to inappropriate or even harmful care for patients.

This is why it's so incredibly important to spread awareness, and become our own advocates.

I will be sharing research that I've done from a combination of credible, peer reviewed sources (such as medical journals, publishings from major hospitals, etc), patient stories, and my own experience. I will also be sharing journal entries into glimpses of my life with very severe ME/CFS as well as tips for others going through the same thing.

I believe that the information I share can also greatly help those with similar illnesses, such as fibromyalgia, POTS, EDS, and Long Covid.

Art by Sylvina Day, "Unmade Bed"

[thelatestkate]

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[thesecretlifeofmecfs]

[thelatestkate]

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[coquettefawn]

[thesecretlifeofmecfs]

[thesecretlifeofmecfs]

From Decode ME:

"Key genetic differences found in people with ME/CFS > Swipe to find out more.

We’ve identified eight genetic signals where people with ME/CFS differ from those without, linked to the immune and nervous systems.

These landmark findings reflect the lived experience of thousands of people with ME/CFS, providing validation and exciting new avenues for research.

Thank you to all our participants and supporters who made this possible!

Want to know more? Read a summary of our results: https://shorturl.at/pgsjk "

[akindplace]

Self-care is taking that warm shower at night and letting your neck muscles relax under the water. It is eating your favorite meal. It is sending wholesome and funny memes to your friend and remembering why you are so happy you have them in your life. It is petting your dog or your cat and letting them soothe you. It is listening to a song five times in a row just because you need those lyrics to make you feel better. Self-care is not about being lavish and expensive with yourself even when you can’t afford it. Self-care is to listen to your body and give it what it needs most with no judgment and or guilt, it is to allow yourself to have some peace of mind, even for a moment.

[onceuponagingercat]

[transfaguette]

one major thing ive had to learn about my pain and fatigue is that overexertion does NOT result in more sleep. a healthy person might have a busy, physically active day and then have a really good sleep as a result. When I do this, I can’t fall asleep at all, and i’m often in terrible pain. So I end up being miserable twice, first when I pushed myself past my limits, and second from the resulting pain and insomnia. So here’s my message to you, chronically fatigued person: don’t push yourself when you don’t have to.

[thesecretlifeofmecfs]

[lifeafterpsychiatry]

You can't expect to good decision and healthy lifestyle your way out of becoming disabled. It's more about luck than personal choices who ends up with a disabling diagnosis and who doesn't. We don't actually live in a moralizing children's cartoon. People don't always "get what they deserve" in real life.

[sandersstudies]

There’s one thing I always think of when I hear “how could you let it get so bad?” and similar phrases. It’s in the comments of every video of matted hair or a dirty kitchen.

I think the appropriate response is “what would have to happen to you for you to let it get that bad?” And when you think about that question, and the horrifying answers that come with it, you almost certainly have more sympathy for the person you were being judgemental to.

[sandersstudies]

People who let their self-care needs go unmet for long periods of time are only rarely lazy and even more rarely comfortable and happy with that state.

How badly injured would you have to be to say “fuck it” to washing dishes?

How bad would you mental health have to be to give up on brushing your teeth?

How much grief would you have to be in to stop making yourself meals?

And the answer is probably lower than many of us have ever had the misfortune to realize.

[thesecretlifeofmecfs]

Canadian criteria for ME/CFS diagnosis

Source

[wishful-seeker]

To those who have to accept they will be ill/ in pain/ disabled the rest of their lives:

You will still have good days, fun moments, and fulfilling times. You will still have days you are okay, happy even. Life is a cycle, its good, then bad, then good, so one thing you can always count on is no matter where you are in life you are always on the way to a good and happy day or moment, you are always on the way to seeing the bad end.

[myalgicencephalomyelitiscfstom]

Pre-chopped fruits and veggies make it possible for so many people with various disabilities to prepare healthy meals and maintain their energy.

[thesecretlifeofmecfs]

✨Forceful reminder you are a unique soul, irreplaceable in this world, and bring so much to everyone you meet. You have done so much good and have so much more to do. Thank you for just being you✨

This was such a sweet unexpected surprise, thank you so much for the kind words. Nearly brought me to tears 🥰 I hope you're having a wonderful day, anon!