Today I was sitting here and I had 4 phone calls about medical appointments within a 20 minute period. Not one related to the other.

I have an appointment with pain management in an hour. Then I have to pick up my nutrition & order my catheters. I know I’ve shared how time consuming being sick is, but it’s more than than just the time factor. You feel like you can’t keep up, you’re drowning, here you are delving deeper into the darkness.

There’s nothing more satisfying to a list maker, than crossing stuff off a list! But what if the list is never ending. For everything I crossed off on today’s medical todo list, I’ve had to add several more. I have no life outside of staying alive. That is how it feels some days.

It’s seems like forever since that very first call to the doctors office, when I started getting sick & eventually getting diagnosed with MS. So much time has passed since they questioned my MS diagnosis. An eternity since I heard them say, “it’s not MS, it’s Systemic Sclerosis. Oh and the treatments you had for years contributed to progressing what you actually have.”

However it seems like yesterday that I was in that dark space, majorly depressed and sick as hell after I went off all my meds at once. I’ll remind you again, I do not recommend this, DON’T DO IT! So sick, I should’ve gone through my doctors to go off my meds. From over 20 pills a day to none. It was a horrible move on my part.

Now as I sit here and I’m frozen in place, I am right back there. In a blink of an eye, I’m transported back to that dark space. One to many calls, thinking about what needs doing, medical junk stealing my life, it’s overwhelming & it triggers my PTSD.

I start running through everything I’ve been through. Every detail, I think it, I feel it, I relive it. This is the reality of living with PTSD. I start questioning why it happened, why me, why no one knew, why, why, why…

I mean they’re doctors! They’re highly educated and it’s their job to make us well. My rational brain says, “they do their best with the information they’re given”. But my PTSD screams, “they didn’t care enough, believe you enough, you weren’t enough.”

I struggle with the dark thoughts. I still find it hard to believe that not one doctor thought enough about me as a person to try something better.

The truth is that it took decades, but someone did care enough. Eventually, I was correctly diagnosed & treated. It’ll never end, my disease is incureable, I will forever have to deal with overwhelming healthcare needs. My PTSD will always be there nagging at my sensibilities & emotions. I will never be free from any of it.

You know what I can do? I can fight. I can fight for those moments of self care, the times I am having fun and making memories, for time with those I love, for anything & everything I can do to live my best life.

Everything is harder these days.
I still love my life.

I thank God everyday that he is with me. I’m never completely alone. Although so often I feel that way. I was asked how do I live like this and still smile. Well, I have no choice, we only get so many minutes and I’m not wasting mine. I can get through anything with the 5 F’s.

  • Faith
  • Family
  • Friends
  • Fighting
  • Fuck it.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s