I can’t get a coherent post together, so this one is
just some mental dumping until some fully formed thoughts can coalesce.
I think I’ve walked into a portal to another
dimension. Can I click my heels three times and get back to the way things
were?
Everything is coming up weeds right now, a bit
haywire, a bit wrong.
Most of my time the last few weeks has been spent
prone in my bed, not being able to sleep, struggling to walk, breathe, eat. These things are still important, right?
I should write a 12 bar blues about living on just Gin Gins and Ensure. The Bedridden Blues. Maybe I will.
I should write a 12 bar blues about living on just Gin Gins and Ensure. The Bedridden Blues. Maybe I will.
I’ve been extremely depressed. Not just the ups and downs. I’ve been treated for
depression most of my life, and I know that I don’t necessarily talk about
mental health much here. But I need to. I will. Depression waxes and wanes, but
it never really leaves. I can’t shake it. I haven’t
talked about it not as a matter of shame but because if I acknowledge it, it
means it isn’t a fleeting moment. It suggests more permanence and that’s a thought I don’t want.
My psychiatrist, who I have been seeing for about 15
years, long before illness came into my life, has been trying to convince me to
add on to my regimen to treat this round of depression. Two weeks ago I finally
relented and tried something new. My body immediately expressed its dislike of that drug. I was so
nauseous it was hard to brush my teeth without gagging. It made my insomnia
much worse. It made my muscle paralysis worse. But I tried to stay strong on it
for 7 days. On day 7, I called her and said I quit. I hate to be a quitter but
the cost was outweighing the benefit. It wasn’t worth it.
Rolling the dice with medication is my least favorite carnival game.
Rolling the dice with medication is my least favorite carnival game.
I don’t know if I’d feel this awful if I wasn’t on
the drug. It’s always difficult to tell: broken or side effects? It’s
impossible to know. Either way, I’ve been pushing my body so hard every day to
try to exercise and move, but only making myself worse. So now I’m trying to
let my body win and just rest. Let my brain just spin wildly and let that
motion just take me. I’ve got my books and my documentaries to keep me company.
I might try to paint while lying on the couch today. Just roll with it.
The problem with being out for weeks is nothing gets
done. I have appointments to make. I need to find a lawyer because my
disability appeal was denied. I’m too ill to go find legal support to prove to
this company that I’m sick enough to get my disability benefits. You can laugh at the irony. I am.
I haven’t left the house in a week and I’ve barely
gone outside at all. But that will change. The thing with bad days is they do
sweeten the good days when they arrive. They are like Karma points. But entire bad weeks on end? Well,
I hope that means there’s a lot of chocolate and money coming my way soon.
But I have learned that at some point I always turn
a corner. I may not be able to exercise now, my brain is wobbly, I’m
having trouble moving and breathing, but things can swing the other way. They usually
do eventually.
I think about the beautiful, talented Frida Kahlo, creating indelible works of art while trapped in a bed. She is the benchmark for how to transform disability and trauma into meaning. How to never surrender your talent or voice no matter the limitations of your body. She's often a source of comfort and inspiration for me. She shows me that I can do it.
Wow. Stefanie, I am just so sorry you continue to have such a difficult time. You don't deserve this. I understand about the depression, too. At times it can be an incredibly scary thing, no?
ReplyDeleteThis part of your post was particularly apropos to my life, as well, right now : "I’ve been pushing my body so hard every day to try to exercise and move, but only making myself worse. So now I’m trying to let my body win and just rest."
That's exactly what I've been going through, and I just can't do the exercise I was doing anymore. I'm now working on a Plan B for exercise - a reclining, super gentle yoga class I found. I want to do more, but right now, my body just can't.
I am blown away by the fact that disability denied your claim. I'm sorry, but that's just beyond outrageous. I often feel I wish that I could hire someone just to handle all things health related for me, as it truly can be a full time job. I need a health manager, and I wish I could hire one for you, as well.
Thank you for your strength and for continuing to write in spite of all the losses you've endured. You're doing an amazing job handling this illness. I'm so impressed. Stay strong. Keep writing. Keep up the great work you're doing. I know how hard it is and think of you often. Much love to you.
I love you so much friend. I hate that you are going through this, I understand all too well that snake eating its own tail cycle of depression and illness and it's so, so incredibly hard to keep going. I'm praying for better days ahead.
ReplyDeleteReading your posts I resonate with so much you have written,
ReplyDeleteHave you looked into the possibility of your POTS & Dysautonomia being caused by Lyme Disease? These are quite common symptoms of chronic lyme.
If you are able and want to contact me, please do by email or phone - pmoc87@live.com. But I know how even this can be a struggle.
Sending you loving thoughts X
I glad you can find inspiration in Frida Kahlo. She was certainly a strong woman, and the success of her art work was largely because of her many challenges. I'm sure it will be the same for you. Some day in the future you'll come back to this post and see it was the start of an important phase.
ReplyDeleteTyron Tanaka @ Low And Canata
It sounds like you need help with a disability appeal. The paperwork gets overwhelming, and when you're battling depression, it's even worse. Don't give up, depression is a real medical condition, and it is just as debilitating as any other physical problem; however, since it's an invisible condition, it is hard to get people to understand what you are going through.
ReplyDeleteCynthia Allen @ Disability Specialist Center