Hi. Here’s a quick one to let you know that I’m still here. ❤️ Hal
Summer Cold
I'm a super nice guy. But I'm living with a very mean illness. ME/CFS has shown its ruthless side once again this week. My symptoms have been very severe. Under the reign of this illness, I feel so fragile, so alone and so afraid. I spent most of the day yesterday crying. It was a kind of bottomless pit crying that didn't seem to have an end. It eventually ended when the melatonin and the ZzzQuil finally kicked in around midnight.
My breathing has been heavy and labored. My legs are aching with fatigue. Even the slightest exertion makes my heart race and gives me an overwhelming feeling that I need to lie down. I did the dishes tonight and then retreated to my bed in fear of the potential consequences of my actions. When I lie down, I feel wired and trapped. I move my arms and legs up and down, side to side and all over the single-size bed trying to ease the restlessness. Right around 10 o'clock, it's like there’s a wire that gets turned on in my body and I can't lay still. I writhe in the bed until I finally fall asleep way too late. Sleep is my refuge.
Today I'm trying to stay calm through all this. I’m trying to accept the amount of rest that I need and not fight it. I started the day with a half milligram of Ativan. That helped for a little while. But then every once in a while, I experience a swell of weakness and heavy breathing and I return to that place of panic and crying. I'm tired of being in this bed and I'm tired of being in this room. It's been a really rough week.
After spending an enjoyable few days at the US Go Congress at the Kent State Student Center, on Thursday night, I came home with a nasty summer cold. ME/CFS doesn't handle viruses well. The cold symptoms on top of my chronic symptoms have been just about more than I could handle. But one crying call to my sisters after another, I somehow keep handling it. Today is day seven of this cold and most of the cold symptoms are gone, but I'm left with the post-viral state of ME/CFS -- a post-viral crash. With every labored, exhausted breath, I'm hoping and praying that my body will go back to its previous state of normal. In the past, the rougher days have always eventually eased up. But with this illness, there's no gaurantee. There's no way to know what's gonna happen next. My brain is full of ME/CFS horror stories of people for whom the illness just kept getting worse -- more and more bedridden year every year. I hope and pray that I'm not gonna be one of those people. I just want to get back to the way I was last week.
I'd like to say that I'm facing these challenges with great spiritual finesse, but I don't think I am. I'm so pissed at the way things have turned out for me. It's not fair. I'm full of fear, self-pity and remorse. (I should have taken more precaution when I was in that ball room full of Go players.) This illness terrifies me. I'm scared of the severity of my limitations and I'm scared of growing old in this body. It seems that the potential of worsening symptoms is always just looming around the corner. My mind and body have been through so much in the last two years. The grief and the trauma is more than one guy should have to go through in a lifetime. I’m sorry if this seems dramatic, but I gotta let it out.
After a month long break from the writing, I'm struggling now to put a few words on to the page to let you know that I'm still here. I’m still living in this body. While the rest of world on my Facebook feed is living up the summer, I’m still here in this room with a fan pushing air through the window. I write a few words and then I rest. My foggy, buzzing brain can't keep up with my desire to create.
I'm finding the quiet of this summer to be a bit maddening. My summers of the past were always packed with camps and trips and gigs. I did get to have a weeklong vacation on Lake Erie with my family. It was awesome. I'll leave some pictures below. Other than that, I've been enjoying playing my handpan on the front porch... watching the hours pass by.
That's all for now. I'm sorry that this post has been a bit of a downer. It's the reality of ME/CFS. The physical symptoms and the isolation have had a strong effect on my thinking. I'm just not the fun loving hilarious guy that I used be. Hopefully we'll get back to that.
I love you. thanks for listening. Thanks for being here. I’ll see you next time. Hal
Summer Cold