I’ve been gun-shy to write.
There is so much going on it’s hard to not only keep my blog up-to-date, but keep myself in check when writing.
No, I’m not censoring. But thee are things I write that are just for me. Writing is part of my therapy. There are also things I write that are just to rant. And as you all know, once I get going, sometimes there is no stopping me. And lately, there is writing for you, the reader.
I’m getting more and more emails. More and more messages. More and more of you reaching out to say “It’s not just you, it’s me too” and “my family is going through the same thing” or even “I’m so glad you are putting words to the struggle we face ever single day.”
Which leads me to think hard about what I put on these pages. I want it to be honest. I want it to be real. Authentic. But I also want it to not hurt so bad for me, for you, for all of us as we move forward in our world where these ups and downs of chronic illness hit us all hard.
Right now I’m feeling better. I can walk a bit further. I can do a bit more. Of course it’s not anywhere near what a normal person can do, but its huge progress for me.
This scares the hell out of me. I can’t tell you how much it scares me.
It was almost easier being sick as hell and not having a treatment that worked well enough to pull me forward. Sound strange? Let me explain:
Now I have hope. I have hope that I will go back to work soon. I have hope that I will walk and then run. I will exercise. I will lose all the prednisone weight. I will do everything I did before I got sick.
That’s a scary place to be when you know at any time you can go backwards if Lupus or RA or Fibro flares and my numbers rise again and all my hope turns to despair.
I can’t get the kids’ hopes up. I can’t get my husband’s hopes up. I can’t let anyone think things might….just might…be normal again. Because they will never be normal again.
Everything has changed. And nothing will ever, ever be the same.
Nothing makes me more angry than that fact. Because there is nothing I want more than for life to be what it was before this all started.
What I do know, is that there is progress. Slow, steady progress. And as I get stronger, my hope grows. But I keep so much of it inside it makes me burst into tears when I am alone.
I am so afraid of being sick again.
Correction: I am so afraid of going backwards, because I remain sick. I want to keep moving forward. I want to keep showing those I love I can do this. I can get better. This is really happening. It is.
But one small step back and the emotions flood. The what ifs. The what ifs this is as good as it gets for me? What if this is as healthy as I can be?
No. No. Forward. I keep moving forward. I have to. I won’t accept anything less. And I will continue to move at a slow, steady pace so it remains safe.
Safe. Safe. Safe. It has to quiet the hope in my head.
Because hope is a dangerous thing.
I hear and feel everything you are saying. I just returned from a trip to the family farm where I spent an hour without my cane, and where I rode a horse for 10 minutes. I wanted to burst with pride and have my family celebrate these milestones, but I also wanted them to understand how much pain I was in after, and that these markers are not ever leading away from illness, but progress within the illness that will always be with me. My partner, who is also chronically ill, and I often discuss how life is a constant balance between acceptance and hope. The hope is scary, but it also nurtures us – without hope we could not push forward and celebrate our victories. They may not be permanent, but that does not make them any less real. with love, Deborah
Yes, this. At the beginning of the month I found out that I am 1 year cancer-free and that my follow-up MRIs will move from every 3 months to every 6 months. I couldn’t bring myself to write a blog about my good news. The road has been so long and there have been a few setbacks along the way and somehow learning that life is going to be as normal as it’s been in 2 years sent me spinning into a well of worry and what ifs.
I wrote every detail of surgery and treatments but couldn’t bring myself to share my good news. It’s nice to know I’m not the only one.
It’s a marathon, not a sprint. The pain is worse, I know, when sliding downhill backwards instead of making strides in the right direction. I’ve had the opposite problem; I blog progress (clinical depression), but I’ve had trouble blogging relapse symptoms. One reason: I don’t want to worry my family any more. They see me getting better, and I don’t want them to worry when I’m not.