Saturday, September 25, 2010

September 23- Twenty years living with ME/CFS

Last Thursday marked my 20th year anniversary since I awoke with all of the symptoms that were later diagnosed as CFIDS (now ME/CFS). For those of you who don't follow my blog, you can read the 'about me' page on my website for a description of my experience with the illness (  This link opens in a new window. All I'll say here is that the first 9 years of this illness were terrifying. I had tremendous difficulty thinking and understanding. Light and sound made me shake. I couldn't read. I couldn't listen to music or watch tv. Never mind do more complex things. I made it through by pacing the house, lying down, pacing again to keep my body going, lying down....when I did pace it felt as if weights were attached to my limbs. My mantra was 'all I have to do is get through the next 15 minutes'. I decided that the POW's didn't know when or if they would be released until it happened and I hoped a door would open for better functioning for me.

That door finally did open. It didn't free me, but it allowed me to begin using a computer, writing poetry, reading very short things, and watching a movie on tv ever so often.

On Wednesday night, I was very bravado. I told myself that the 20 years marked 20 years of survival, that I'd made it. The fact that my mother had died 14 years ago on that same day, too, made it a double whammy but I still didn't think it would affect me. I woke up out of a sound sleep at 3 30 Thursday morning crying and I knew that no matter how hard I tried, I couldn't stuff down the real grief over the losses that day represented. It was important for me to release that as well as recognize my strength in getting this far.

Fortunately, my college friend Marilyn was visiting this week. Even though it's been a rough period for me with the whiplash and lumbar strain from being rear-ended, we managed to drive over by the ocean I love so much for a 15 minute visit. The wind was blowing too hard to comfortably stay longer and I was tired from lack of sleep. are a few photos from that day. I look at the photo of me and think what everybody who doesn't know this illness always says....'but you LOOK so good'......

My friend, Marilyn, below:

 A shot of the pier with the waves rolling in:

 Me, trying to keep my visor from blowing off and hanging onto my cushion so IT wouldn't blow away.

Click to enlarge.

Thanks for listening.



Kerry said...

I don't remember the exact date, but September marks my 20th anniversary with CFS as well.

Congratulations to us both for making it this far.

I had friends over last night and we had cake.

Jo said...

We have to find a way of living with it because, what's the alternative? Thank you for your courage.

Pris said...

Kerry, 20 years for you, too? Yes, congratulations to us both for surviving.

Jo, so true! We have no choice.

Thank you both for commenting, most especially since I've not been able to read many blogs in quite a while now.

Toni said...

I feel like a rookie, being only at the 9 1/2 year mark, but I really enjoyed your post Pris. Your spirit showed through the difficulties of the past 20 years. And you've written a book, continued to write poetry. You're amazing.

I share that frustration of being told "you don't look sick." People have no idea what affect it has on us!

Thanks for sharing this.

Pris said...

Toni, thanks for your support, and 9 1/2 years is a loooong time!

Jim K. said...

Here's hoping something
good comes. Thanks for being here.

Pris said...

Jim, thank YOU. You've been a good friend from the time we met.

Renee said...

It is an anniversary we would rather not have to celebrate, that's for sure. But we are still here, still finding moments of joy and our desire to survive is strong. I began this journey in 1984 but became very ill in 1991. Been a roller coaster ride since....
How wonderful you were able to go to the beach for awhile....