Accepting who I am and where I am in life is a big factor in my mental health. I try to remind myself as much as possible that I have a good life. A privileged life, a blessed life. That I have much to be content with and happy with in my life.
It can be extraordinarily difficult when I struggle almost daily with fatigue. When I seem to always run out of time or the energy to do the things I need to do, want to do, should do, and used to be able to do.
The Spoon Theory does a good job of explaining my daily difficulty. But understanding the concept of the Spoon Theory and living it are two different things. I understand the idea of having limited time and energy. Figuring out how to live my life accordingly, accepting my limitations and being happy with them are the true challenge.
I want to feel better, and I’m currently making some significant changes to get there. I have a doctor’s appointment coming up that I hope will help me figure out exactly where further changes need to be made.
It’s likely the doctor won’t be able to tell me much, or do much to help. I’ve become rather disillusioned when it comes to doctors and their ability to help. After having so many symptoms ignored over the years and being treated in a rather haphazard and ineffective way, I have my reservations.
The last time I spent much time under a doctor’s care was when I was diagnosed with Lyme Disease.
I suffered from increasingly severe arthritis for months before being properly treated. I waited, did all I could to ease the pain myself before seeing a doctor. They didn’t give me medication until my blood work showed significant inflammation. I had pain in my hips, my shoulder, my fingers and toes.
I was put on a waiting list for a rheumatologist. By the time I got in to do the initial appointment and blood work, I’d already done my research. I requested a Lyme Panel. My cousin had had Lyme as a little girl. He didn’t even want to do it, but did so anyway.
Before the rheumatologist even contacted me, the CDC was at my door. My results were that significant. I went to see the Rheumatologist, and he told me, to my face that I couldn’t have Lyme, that we didn’t have it in California. I didn’t see him again.
I took my results to my GP and got treated with heavy antibiotics and follow up rounds of blood work. Within three months, I was able to function again.
I will never forget just how debilitating continuous pain was, and how good I felt after the pain was reduced. How amazing it was to finally be able to move again, to live again without pain.
But it also left me with a distrust of doctors. I suffered for months, and no one took me seriously. No one believed how bad the pain was. I had a CAT scan, ultrasounds, blood work galore, and everything came up negative. But I WAS in pain. I WAS suffering.
It was the same when I was younger and trying to get my anxiety and depression treated. The medications were never right, when I had side effects, I was told that it couldn’t be the medication. That I should just keep taking them though they made me worse rather than better.
I figured out that I was autistic on my own, after I figured out my son was autistic. I faced so many people telling us that my son couldn’t be autistic, and yet, now, he is doing amazingly with treatment. Therapists, doctors and teachers alike now understand him an work with him and he is doing so well.
My own diagnosis was easy, almost too easy once I worked with a doctor who knew what to look for in adults with autism. But I could have been diagnosed far earlier if I hadn’t internalized the number of times I was told to my face that “you can’t have autism, I know so an so’s son who has autism and you’re not like him.” Even just a few months ago, my doctor looking me in the face and asking, “Where did you get diagnosed? You make such good eye contact.”
Being invalidated as regularly as I have has given me a marked distrust of people, doctors included. I’m tired of trying to convince people that my experience is real and valid. So now, I do my best to manage my mental and physical on my own. I have a long list of doctors, therapists and meds I have tried. I’m not interested in adding to that list.
I have very little physical pain these days, but I do still suffer from anxiety, depression, and fatigue. Much of it, I’m certain is from coping with an array of autism related issues. Now that I’m aware of my sensory issues, my tendency to burnout, my need for time out, things are better.
And though I am still struggling with many things, today is the greatest.
I am still here.
I am still learning.
My health is so much better than it was at my lowest. It’s not as good as it could be or was in the past. I know what it’s like to be in pain daily, and to not be is in constant pain is a blessing..
I am lucky. I am blessed, I even am happy some of the time. Even if it’s just for a moment. Even if it’s just relative.
Today is the greatest
day I’ve ever known.