Cultivating Self-Compassion through a WIHMG Member's Post

Hello all of you amazing people! It's been awhile since I checked in. I am cheering you on everyone in this group, and post to offer hope of some kind. This is a long story, but stay with me if you can.

I am in a season (knock on wood) of relative 'health.' Mind you, I have been dealing with these symptoms for 35 years, so what I consider "health" is very subjective.

It has been almost a year since my last big relapse. It was a scary one, really paralyzing me for a day. I bounced back fairly quickly though. Special thanks to a good neuro who has helped me for almost a decade with meds and lifestyle to stabilize this craziness!

Since then it has been the mostly low-grade stuff I can manage. Neuropathy, occasional migraine headaches, temporary brainfog that thankfully seems to recover. Is it great? No. Yet it is manageable.

In November 2023, COVID gave me a 6 month migraine (at least thats the best explanation I can come with 'cause docs stick at this). My stomach forgot how to digest without extreme pain. I lost my appetite and tons of weight. I started losing my hair due to malnutrition. My dad died in the middle of that mess too. I had to go whole foods and seek BIG dietary changes. Gastroenterologists were useless but I am finally back to 'normal" eating, sans chemicals. Big lifestyle changes, I am okay now.

Where is the hope? This photo is of me in June, on my third trip to the Amazon rainforest in Ecuador. Even with all the stuff I have been through, I have managed to do things with my body that I would have not thought possible. It blows my mind that this is me.

I have had times I could not get around without a cane or even a wheelchair. And, in the rainforest I have had a traveling companion help me throw my weak leg over a big log when it was tired. Did I slide down a muddy slide in the rain, "Romancing the Stone" style? Well, yes I did. It was embarassing and lacked any kind of grace, but I had a great team of indigenous friends with me that treated me like a sister, and helped me back up again.

I am now closer to 60 from 50 now. When I was 30, I was convinced my life would be only about what I cannot do. I was scared. The uncertainty was overwhelming. I still have bad days. I still have some scary attacks sometimes. I will have pain and weakness out of nowhere. I will have ups and downs, because that is that nature of this disease.

A friend of mine called this story "heroic" and I shot her down quite emphatically. True heroism is waking up in the morning and facing a new day when it feels hopeless. True bravery is taking a shower when it feels too hard. Facing uncertainty in the face of a super bad relapse takes a special kind of character, especially when it is super discouraging to be called "strong." No one wants to be called "strong" when we mostly feel so darn tired of the cycle.

I offer us hope. No one knows how bad this disease can be except us. But also, I offer the possibility of good days too. My plan is to enjoy those good days when they happen.

Big hugs y'all., and lots of love. If you woke up another day today, you rock just for being being, just for existing in this day. Love you all.

*Post written by Jen L.

WE LOVE YOU, JEN!!!!!!!