Joining in with the lovely Hannah’s #TruthfulTuesdays on Instagram this week to spread awareness of what daily living with a chronic illness really looks like so I’ll keep this blog post short, truthful and to the point. I’m kinda all over the place this week for two reasons. One, over the past week it’s come to my attention that two more people, that we know of, Merryn Croftsand Ian Rudd, have passed away from ME/CFS and this breaks my heart, and two, I’m preparing for my disability hearing next week. I’ve been denied four times since 2014. Twice through my previous employer’s long term disability plan (I believe, I can’t remember the exact name) and twice through Social Security. So next week I’m to sit in front of a judge and explain why I qualify for disability. How about the fact that I’ve been paying into social security since I was 13 years old and now I’m so ill I spend my days in bed and that’s how the system is supposed to work? Especially when you have literally seven letters from health care professionals saying you are not fit to work. But it doesn’t work like that at all, does it. I have no idea if this hearing will result in my receiving disability payments but I do know how incredibly unfair this process has been for me. As my mom used to say, life’s not fair. No mom, you were absolutely right, life is not fair. What I realized later in life is that my mother wasn’t saying that to be mean but to warn me. My heart has always been a little too big for its britches and I think she was trying to protect it in any way she knew how.
As you may be able to imagine just preparing for this hearing is utterly exhausting, stressful and not in any way healthy for me so in an effort to conserve my energy I’m going to wrap up with a few little paintings below. Also, if I may be so bold might I also ask that if you pray or send positive energy or whatever you choose if you could include the families of the two precious souls who lost their lives to ME/CFS. I did not know either of them personally, but having read what their families have shared my heart hurts (click links above to read about them) and I can’t even pretend to know what their families are going through.
Hug your loved ones, take good care of yourself, the best you are able, and my apologies for the sadness today but it’s our reality. We are watching our fellow sufferers waste away without appropriate care and it’s incredibly heartbreaking.
The first picture is my #TruthfulTuesday picture (taken in portrait mode). It’s me working on my daily watercolor a few days ago, mixing paint colors, lost in art therapy. So lost I was not aware my picture was being taken😁. As I’ve shared before I paint in bed, with a towel over my lap (ummm watercolors do not come out of seemingly anything!). You can see my paint tray, water glass, and watercolor journal. When you think of someone painting you picture them at a desk or standing in front of an easel but for many of us with chronic illness it looks a little more like this, but we love it just the same!😊🌸