5 Years a spoonie: The GooD BAD HIGHs and LOWS of My CHRONIC ILLNESS JOURNEY

Today is my diagnosis anniversary. Another year in my chronic illness journey in the books.

It’s been 5 years since I was diagnosed with myasthenia gravis (MG).

As the date approached, I honestly felt a little anxiety and I’m not really sure why. This date has passed multiple times before and I didn’t think twice about it. Or maybe I did and never put two and two together.

Anyway, as I sat down to journal about my 5 years, I felt this overwhelming sense of relief. I’m not really sure what I expected my life to be like 5 years post-diagnosis but I’m pretty sure I didn’t expect it to be my current reality.

My Expectation of Chronic Illness Life

When I read about MG, or even about people living with chronic illnesses, I felt as though their quality of life was very grim and bleak. If I had to summarize- mysterious symptoms, doctor appointments, medications and being a nomad.

Success stories about people living happy-ish lives with a chronic illness were few and far between. But then again maybe I didn’t look hard enough. Or maybe the people living those happy lives are too busy living to write about the good times on a blog or post it on social media. (shrugs)

So I pretty much resolved early on that my life would be reduced to the bare minimum . My worst case scenario is that I would lose everything and become completely unable to take care of myself.

The Reality of Chronic Illness Life

Fast forward to today and while I’m definitely not the poster girl for how to be a beast at chronic illness life, I must give myself kudos for getting where I am today.

The truth is having a chronic illness is hard. It doesn’t matter what chronic illness you have, it’s all hard.

I’ve had good days and I’ve had bad days. And if I’m being honest, my good days have overweighed the bad. But I had to do a lot of work to get here.

Having a chronic illness means prioritizing my health above all – work, relationships, fun: everything!

It requires becoming in tune with my body that I can notice the slightest bit of “off-ness” and be able to adjust accordingly. It means advocating for myself and my needs because not doing these things can end in crisis.

Once I had a baseline (on my symptoms, my triggers, and my medications) I was able to test the waters to get a true gauge of chronic illness life. Lately, it’s been looking pretty good if I may say so myself.

The truth is – having a chronic illness doesn’t restrict what I can do. Having a chronic illness changes the way I go about doing it.

Reflecting On my Chronic Illness Journey

I wanted to commemorate the day by just reflecting back on some of the highs and lows of my chronic illness journey thus far.

My Lowest Moment

It’s honestly hard to pinpoint the lowest moment in my chronic illness journey. If I had to pick, I think I’d say it was crying in the dressing room at Marshall’s.

I was on a heavy dose of prednisone and the pounds were packing on. So logically, I go buy new clothes. In my eyes, everything I tried on made me look disgusting.

It wasn’t the clothes. I was self-loathing. Truth be told, I probably looked like a million bucks but couldn’t see it because I was depressed, being self-critical, and lacking self-love.

I sat in the dressing room crying for about 10 min before I walked out with nothing.

My Highest Moment

A tie between the day the doctor said I could come off all my medication and my interview with SELF Magazine Podcast – Checking In.

Who am I kidding?! Getting off medication is definitely the winner.

Everyone thought I’d be on medication for the rest of my life – including me. But I was very adamant about not taking them forever and articulated my wishes to my doctor.

Here I am today – maintaining med free.

My Most Embarrassing Moment

I’ll never forget the day I fell in public. I had just gotten home from work and decided to go check the mailbox before going into the house. As I was walking across the parking, my legs just gave out and the next thing I know, I was face down on the pavement.

I stood up slowly, looked around to see if anyone was looking at me, and then continue on to the mailbox.

To this day. I’m not sure if any of my neighbors saw me. None of them came out to help. But I was mortified.

My Scariest Moment

Hands down my scariest moment was one morning while driving to work, my legs felt extremely weak. The cars in front of me were slowing down. I tried pressing my brakes, pushing down with all of my might but I couldn’t press hard enough. I just knew I was going to crash into the car in front of me.

Luckily, I’m a pretty good driver. I decided my only choice was to ride onto the shoulder and allow the gravel and grass to slow me down.

It worked.

I was slightly apprehensive about driving for about a month or so after that.

My Proudest Moment

This is definitely a difficult one to choose.

I was definitely proud of myself for getting my motorcycle license. If you all remember I failed the first time I took the test and I wasn’t sure if I failed because it wasn’t meant to be or because of MG. If so, that’s one more dream of mine chronic illness had stolen from me.

Only one of those things I could live with. So I decided to try again and I passed with flying colors.

I’m also proud of the work that I continue to do on myself and my community. Every time someone reaches out to me to say that can relate to something I’ve written or posted about I feel an immense sense of purpose. Proud that I was able to take my pain and make it my passion.

Sorry I couldn’t choose just one.

Final Thoughts on 5 Years of Chronic Illness journey

If you all remember, I wrote this love letter to my MG on my one-year anniversary. it was kind of the catalyst that started Is Was Will Be. I went back and read it. Whew! Ya girl was hurt but still tried to push through.

To that girl, I say thank you for your strength and tenacity. You got us here. I’m so proud of you for choosing to happiness, self love and peace with a chronic illness

Thanks for passing the torch to me. I’ll continue to live our illest life for years to come.