Tuesday, September 8, 2020

Hello Again!

 Well, hello! 


I bet most of you thought that maybe I'd given up blogging. I'd only made a few posts this year and haven't done so in something like four months, so I would see how people would think that.


Truth is, I have thought  about giving up blogging, due to a few different factors. One being that it doesn't seem to be very popular anymore, so when I do put in the effort to publish something it's often not read by very many people. The second reason is what I mostly wanted to talk about today. Chronic Illness. 


When I began blogging something like 15 years ago it was about autism, mainly about my two autistic kids. They have now almost grown up and like them I have grown, as well. Seems kinda weird to talk about their lives through a blog when they're 18 and 16. It's an invasion of their privacy as well as an unethical form of voyeurism, imo. I had thought about this awhile ago and began to scale back the amount of info I shared about them online in a public forum. Maybe I should never have been so open about their lives to begin with? I don't know. Probably not, but hindsight is 20/20. When we know better we can do better. The best any of us can do is adjust our behavior to the knowledge we continually seek, refusing to stay uninformed and ignorant about how we affect others and they affect us.


Besides, the last ten years or so I have moved to speaking out about my own autism, and how I view the world through the unique being that I am. This took up quite a  lot of the space in the blog, until I began to feel I had almost run out information to share on the topic. 


Then, I opened up the scope of focus to include introversion as well. As I aged and learned more about myself I felt that being an introvert has been a very large part of who I am,  almost as much as the autism. I felt the need to further explore what being an introvert means to me and how it has impacted my life. I wanted to connect with a wider community than just the neurodiverse,  so I changed the blog (and blog page on FB) to the current name,  replacing Inner Aspie. I'd outgrown that name, that persona in a variety of ways, so I wanted the title of my writings to reflect that. In doing so I have been very lucky to connect with many new friends that I cherish. 


Now, I am including chronic illness as a focus, or a sub-focal point (?) to the blog. This isn't entirely a new topic on here. If you've been a long time reader you probably remember some posts speaking of migraines and such. It seems that I have found out the cause of my ever growing and ever changing physical maladies that have prevented me from being able to be as active as I'd like, including things like blogging. 


I'd been to my regular physician and a neurologist these last couple of years trying to find out what is causing my symptoms and what can be done. Tests and more tests have been run. Then after a very detailed lab panel had been run and come back fine my doctor told me I have Chronic Fatigue Syndrome or Myalgic Encephalomyelitis 

I knew basically what that was, and wasn't happy to hear that diagnosis, at all. I felt my stomach sink as she told me there's not a lot that she can do  for me. I left with a printout about ME feeling a bit defeated. 

 

I'm still learning about what it is and how it applies to me. Looking back over my life now I realize that I probably have suffered from this illness on and off to varying degrees since I was 15. I'm now trying to tease apart what has been depression and what has been just flat out exhaustion and malaise, for one. There's been a lot of assumptions I've made about myself and who that I am that I have to reevaluate now. It's been a very freeing process to understand myself through this lens, letting go of shame of who I thought I was and who I admonished myself for never being. 

 

I'd love to be able to express this whole journey through writing about it here, and I plan to  as much as possible, but the amount possible is where the difficulty lies. Much of the time my head is so foggy and even thinking about putting together coherent sentences is beyond my reach. Still, it's my hope to be able to continue to blog here on the days the fog subsides and I have a tiny bit of energy to spare.  This place here is a digital representation of my soul., safe and authentic. Thanks for visiting, friend!



1 comment:

  1. I feel for you. I was diagnosed with chronic fatigue over 25 years ago. I still struggle. It's exhausting being exhausted! I am sorry to hear you are coping with it now. So little can be done and one must ration their energy constantly. I wish you the best of luck and hope to hear if you find anything that helps you.

    Warmest regards,
    Lori D

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