Tag Archives: RRMS

Days that become years.

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It would seem that just not too long ago, I was every perception of healthy.  Vibrant, maybe.  Lifelike.  Slowly, things just started to shut off.  Lower tolerance to stress.  To pain.  Less fight.  Fewer emotions.

With a chronic illness like MS, there are no doubt to be emotional and mental battles, trapped in a body that just does not feel well.  On my best day, I have substantial enough pain that I must medicate every couple of hours with both prescription and over the counter meds.  The fatigue comes out of nowhere to collapse the canopies over the top of your perfectly planned days.  It becomes difficult to schedule.  Difficult to see past today.

In February, I had a stomach bug.  I do not vomit.  I am not a vomiteer by nature.  (I totally just made that word up.  Nailed it.)  Wouldn’t you know, that the this flu would hit me, the owner of a flower shop, on the evening and day of Valentine’s.  The thing is, Valentine’s happens once a year.  It’s like the super bowl.  You have to wait a whole season to go at it again if you’re not one of the two teams playing or one of the devoted fans.

So, I start feeling nauseated the afternoon before the big day of love and, to make it even better, this year, this year only, I make a different plan and decide I can make enough flowers in advance to totally wing NOT having to have another florist come on staff.  In theory, and in actuality, it would have worked out perfectly, but I got sick.

Bending over, talking, moving…  all created the sense of nausea.  I was so exhausted from all the hours I had put in before the holiday.  My body ached in places I didn’t realize existed.  It was a true test of God’s stamina and endurance in me.  I worked until three that day and then had to leave my employee and a big group of family and friends in charge to finish the day.  Even though I was so sick, it was such a good day to me (the next day 😉 ).  A major core of the people I love most coming together to help me.  It felt good.

As I recuperated from Valentine’s, I still struggled emotionally and mentally.  I had completed extensive work with my therapist the summer, fall, and some winter before.  We worked a lot on creating a world for me where I felt safe.  I had some worth and some power.  I did put in a lot of time trying to get better from my depression, as much as being a mom, wife, florist, and my budget would allow.  Something was still not clicking, however.

Later in February I would discover that I was really thought to have PTSD.  I had been told this before, but evidently, it didn’t really register.  Silly brain.  The therapist explained to my husband that there are certain triggers that spur my already agitated, anxious body into full battle mode.  As I sat there listening, I felt like such a freak.  Not that she was calling me a freak, but that I really didn’t realize how sick my mind and body were.  Suddenly, nothing became real.  Are any of my feelings real?  Why now?  I was defensive, upset, overwhelmed.  Couldn’t breathe.  I left that appointment early.  I felt ashamed and embarrassed.  I haven’t been back to therapy.

I needed time and space to evaluate things.  To figure out who was safe.  It sounds so silly, but it’s true.  Nowhere in the world feels safe at times, except being alone.

As days faded into weeks, I purchased a great book on trauma, started doing research on PTSD, and started discussing it with some of the people closest to me. It seems that my case is probably complex-PTSD as it was the duration of my childhood.  The trauma occured at critical points in my development and it changed the way my nervous system, my physical and emotional self, my God intended design, would grow and blossom.

Since before my son was born, just over five years ago, I have regressed into a fragment of who I used to be.  I can trace it back now and see where PTSD took over Dana.  Empty and disconnected.  I lost a lot of friendships, could not engage in new relationships and experiences, and have suffered with depression, suicidal thoughts, and more.  I don’t have much of an attention span. I can hardly answer the phone at work and dealing with customers feels like a major ordeal.  Confrontation at any level immediately sends me into “CODE RED, find safety.”  Criticism at any level immediately sends me into “CODE RED, find safety.”  Rejection at any level immediately sends me into “CODE RED, find safety.”  Betraying my trust in the slightest sends me into “CODE RED, find safety.”  What is ‘code red?’  Like, in real life?  This is a real question, as if I heard it in a hospital or grocery store, it might have different meaning.  To me, I’m just sayin’ CODE RED is like, “Immediate danger!  Escape!  Run!  Flee!  Who is safe?”  My heart will be pounding and I will experience something similar to panic.

It is hard to digest that this is what you have become:  A “Code Red” machine.  Always looking for signs of new pain.

In the meantime, my neurologist has consented that she is treating me for Primary Progressive Multiple Sclerosis (PPMS), rather than Relapsing Remitting.  There is a new drug selling in Europe, the first drug targeted at PPMS, that has just been approved by the States.  It is still in trial mode, but is expected to be a viable option soon.  It will not fix what damage has been done, but will delay progression.  I can’t help but wonder how the emotional deficits in my life are not to blame for the physical damage that has been done.  Autoimmune disease.  My body physically attacking itself.  I can’t fix the damage of one while ignoring the other.  So much damage.

I hate damage.  I’m at a juncture of what to do with this damage. Some of it is beyond me to heal.  Like, without the mighty hand of a valiant God, I will not get through this.  Where I go from here and how to get there, God please lead me.  Lord, grant me comfort, peace, healing of body and mind and spirit.  Rejuvenate my broken heart, Lord.  Consume my thoughts with you so that I may not destroy the temple you have created.  May I not be held captive to fear.  May God know my heart. In Jesus name, Amen.