Seeing this post on https://solvecfs.org/ (organization dedicated to finding helps for those with “Myalgic Encephalomyelitis” or Chronic Fatigue Syndrome) a few days ago really stirred up a lot of the memories from some of those roughest days. This post was actually submitted to Solve MECFS in December (hence the Christmas colors we were wearing!), and SO MUCH HAS CHANGED since then! You can read the full post copied below or in the link above at the Solve MECFS site.
I don’t know what I felt as I was re-immersed in those moments from the past. Was it grief? Was it relief? Was it joy or hurt? I honestly could not figure out my response.
I just know that I was back there.
• I was back to the day my sister was so weak that her whole body was shaking in bed.
• I was back to the first day I had to pull the car over before I lost consciousness.
• I was back to the moments my sister and I would lay down on the floor together all day, too exhausted to do much else.
• I was back to the times my husband would have to carry me from the car (or to the car!).
• I was back to when I remember feeling all of my friends slip away (I know you all didn’t, but ME/CFS had changed so much and I couldn’t be around) and how lonely and scared I was.
As I replayed different moments during all those sick years, some funny (I always know how to have a good time!) and some painful, I was thankful.
• I am so thankful that God had the two of us get sick together so we could love and understand each other. My sister is such a blessing to me and helped me wrap my mind around the bewildering symptoms of ME/CFS. “No Heather, you aren’t having a heart attack, your chest and left arm are numb because of a flare.” Yes, I had my hospital bag packed and ready to go for a long time, but my sister already knew what I was going to go through as the disease developed.
• I am also thankful for these times because I know they are opportunities to trust God more. I have learned a LOT about how caring and faithful God is. As the saying goes, you don’t realize that God is all you need until God is all you have. There were days I didn’t even have my “right” mind and felt my grasp of reality threatening to slip away, but even when my mind was cracking, God was there and His promises proved true. “The Lord is my Shepherd, I shall not want…” He did not judge, He just loved.
• Lastly, I am thankful that God has been healing me this year and has finally brought me the • right diagnoses and • the right treatments. These last 6 months have been a whirlwind of one miracle after another. I even told my husby this morning that I think God might actually be healing me completely! We are so full of hope and ENERGY.
If you would like to know more about my silver bullet protocol, please message me!
You can read about (and see some before and after footage) my first 60 days here
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And now, the real, a bit revealing, and slightly outdated entry Solve MECFS was so gracious to post.
When we were growing up, you could always find us running around at a park, traveling the world with family, playing sports, volunteering at church, and dreaming big. Eventually, both of us went into high-energy careers, one as a sound engineer and the other as a missionary.
Then it all went wrong.
(Corey) 7 years ago, I started having trouble handling the pressure of my job. It was during an exceptionally demanding year and I could tell it was leaving me running on fumes. The more I tried to keep up, the weaker I became. Until finally, I could feel my body and mind crash. I became mostly bed-bound, barely able to handle motion, touch, light, and sound. Panic attacks and exhaustion became a vicious cycle. Brain fog made it impossible to care for myself and I wondered if there was any hope of recovery. What was happening to me? It was such a shock to my doctor and family, and it took a long time for them to understand that I am not lazy, I really am sick!
(Heather) Watching Corey go through what she went through from the other side of the world was confusing and heartbreaking. For years I tried to “snap” her “out of it” and get her going again like old times. I just couldn’t believe she could be that sick. I couldn’t believe until it happened to me. Four years ago, after a busy season of ministry, I took my usual month off to recoup, but found it strange that I felt even more exhausted after than before my break. I pushed on through another busy season and eventually found myself barely able to walk, eat or even sleep. It felt like I had a constant flu. Having Corey there with me during the worst moments was a huge blessing. I don’t know how she made it through those first years without me because I know I couldn’t have done it without her!
For us, burnout soon turned into ME/CFS which forced us to quit our jobs and our lives. At its worst, we couldn’t even form complete thoughts. Over time, the disease has become less debilitating. Corey has gone back to work as a full-time professor and film sound engineer. When she’s not at work, however, she is usually sleeping. Heather is still unable to work, but is now married and much more active than before.
Grief is hard for us. It’s as if we’ve died but are still around with the memories of how things were and what we could do. When we dream, we run everywhere! No more “I’m-trying-to-run-but-can’t-seem-to-move” dreams. That happens enough in real life. We miss our friends, the food we used to eat, and simply how we lived.
It’s scary, but we thank God we have each other. We are also blessed to have the doctors, family, and friends who have loved us and cared for us.
For all of you struggling with ME/CFS, we are with you. Here’s to a cure!