N-O one

You are the only person who knows what you want and need. It is important, no matter how loud that you advocate for you to let that be known.

In my experience, because I am now visibly disabled, friends, family, doctors, nurses assume they can account for you better than you can.

They can never.

As much speciality or love they may have for us, we are still the only ones that can speak up for ourselves, our well being. Trust, it will be hard, some days all you can do is force your way through, maybe minute by minute, hour by hour, day by day.

Hell, some days it’s minute by minute for me.

It will be E X H A U S T I N G, it will be tiring, draining and sometimes compromising for your mental health. But press on, and do it. You will thank yourself later. I promise.

I have long, long, long, dark days, sleepless nights. I am done being on a high pill count, tired of rotating through meds, so with the condultation with my doctor, we gradually stopped my unnecessary in take.

No one is there during my misery, my downs, my lows, those LOW moments, so I've learned. to damn sure fight for myself. Only I, only you know what you want, don’t want, or need.

No one will understand, ever. Sympathy is the only sign of help people not in your body, going through your trials can offer. It will be lonely. It will be frustrating A F, but we must, because no one ever will—bet on that.

Advocacy—our voice, tells the story, tells our journey. It was def uncomfortable sharing my story initially, now I do so locally, at the state and congressional level. No one will understand where I've lost 😫. Where I've won 🙄, even though “Ws” doesn’t seem like “Ws” at times.

My struggle is one I handle, at times privately, and because I said I would, publically via IG (@TheMSMuse) and this blog. My pain and suffering are now regular. I wake up some days to my legs feeling as if they were on fire, but I keep on, because I, we, must.