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!

Experiencing a Shift in Perception #SelfAwareness #MentalHealth

Yesterday was a rough day. It began with a migraine as soon as I woke up that by afternoon morphed into the worst one I have ever had in my entire life. That is saying something since I have chronic migraines.

I found myself laying on the couch with a pillow resting over most of my head to provide a blocker for light, and some pressure for my forehead. With nausea and pain building it's way into a vortex of spinning hell, despite trying all meds I had at my disposal I was reduced to laying still as a stone. This is the kind of sickness that renders a person unable to breathe without increasing one's pain. There's nothing to do but lay there and deal. I couldn't even watch TV, and so much of my energy was going toward not vomiting that it was a serious challenge.

There's something kind of dismally sweet about not being able to do any activity besides think for hours on end. When you're laying in a puddle of pain and illness for hours there is nothing else to separate you from your thoughts. Not that I am one to run away from my inner thoughts, but it's entirely different for me when there is nothing to distract my mind from wandering in every which direction it wants. At least for me, these are the times that my inner world becomes exceptionally vivid with thoughts of the past dancing across my mind's eye, and thoughts of the present as well. I suppose due to the heaviness of my emotional state those thoughts aren't always the most pleasant, or the most happy. Small issues that nudge me during usual mind frames that would get pushed away come at me full color with no escape. As I laid there in misery I realized a lot of hard truths that I had been avoiding.

In this place I met some of my fears

Resting with Chronic Illness

Today I ran a thousand miles through the heavy autumn air with leaves crunching underfoot as my breath grew deep, and my legs weary.

Well, maybe not a thousand.

Maybe I didn't run, either. But, it felt like it. Let me explain....

As I mentioned before, I have chronic migraines (among a few other illnesses) and yesterday I was struck down with a pretty severe one. Today it seemed to let up some, but the after affect lingered. My body was beyond exhausted. My head was foggy, and not communicating well with my brain. In general my body ached, and moaned reminiscent of the flu, or maybe a horrid hangover.

I felt the fog lifting, and the heaviness begin to ease about 2 hours ago. I'm sure that this isn't what feeling all the way well feels like, but in comparison I feel as if I could climb a mountain at 9:30 PM. I wish I could say this is unusual, but it isn't. My brain seems to come alive in the afternoon, and by evening energy levels soar. My pain is usually by far less in the later part of the day. I want to live by the moonlight, but unfortunately the world is on another schedule.

I wonder what people think when they think about the daily lives of people with chronic illnesses. Do they imagine a frail person taking pills, and laying on the couch all day? Do they think about all the rest we all must be getting? Do they imagine us with energy reserves that we can tap into as the need arises? Much like a bank account, or a camel. Do people suppose that when we stay home for a day that we can feel refreshed later?

Catching Up

Hello everyone! This is going to be one of those catch up, update, rambling type of posts. I think some people like to read these, and some some don't. I just feel that it's been awhile, not only since I posted, but since I posted any kind of personal entry that wasn't a recipe, or how to informational type of content,so I was overdue for a real chat with you all.

So, why have I gone MIA on this blog? A lot of reasons, really. It's not a complicated story, just tedious, and boring. You know, life stuff. My husband has been really ill with a gastronomy issue that has yet to be identified by doctors. It's been ongoing for about 8 months now. That has been difficult to contend with as I adjust to doing more where he can't. I also still have chronic migraines and more. My oldest was married in late September, so that also took a lot of time, and energy. We decided to get a kitten, then two days later found a litter in our carport. Hahahaha. Some were in poor health, and required extra care. I am glad to say they are all doing great now, and ornery as ever. Almost completely potty trained, too! They are too adorable, and I blow up every social media site I am on with their pictures!

Chronic Pain and Autism

I know that I have mentioned it a time or two (or more lol) that I have a few different chronic illnesses that cause me pain of varying degrees almost daily. It's something that I have been dealing with for awhile now. How long, I can't tell you. I can't tell you because I don't really know. See the thing is with the way my brain sorts out pain signals, and how my body responds to them I am finding out isn't quite "normal". Yeah, I know that no one is "normal". What I mean by that is that my sensory perception is different that a typical person's due to being autistic.Throw into this mix the fact that I didn't always have a very responsive family that took me very seriously, or made my well being a priority on any kind of consistent basis, and we have a person that is all over the place in terms of how I experience, report, and explain physical pain to anyone.

My Questions for a Self-Aware 2017

It's Christmas evening here as I write this. I've done all the exhausting holiday runaround. Presents were wrapped, and unwrapped. Food was made, and eaten. Joy was anticipated, and gratitude was shared with family, and friends. I feel like I have a lot to be thankful for, and a lot of happiness was shared today. It was a day full of effort, though, and I'm one tired woman! I am sitting here on the downside of the excitement of Christmas, and pausing with anxious breath for the new year.

This year has brought with it a lot of challenges in the health department for me. I wonder how it might be for the new year? It is something of a game changer in that I have had to learn to become flexible with myself.  I've had to learn to allow myself room to adapt to new strategies, because I can't always do the same things to the same levels of perfection, or completion anymore. These are things that I am still learning how to do. When I have a painful bladder flare, or a migraine attack I might not be able to function at the same level as I always have, and learning how to navigate this new terrain of chronic illness has been difficult for my whole family.

For example, due to a particularly bad month of migraines, I was not able to do my usual Christmas cards, and treats that I normally do. This was hard for me to let go of, because it's such a big part of how I celebrate the holiday season. It was just more than I had to give this year, but hopefully next year I will be able to pick this tradition back up, or maybe I will be able to make some late treats for the New Year.

With all that being said.....

I did want to do a Christmas post, even if it was not a very long one. Something to let you all know that I am still here, and am still blogging, and will continue into 2017. As a matter of fact, I wanted this to be a pre-2017 post. A contemplative post of sorts. I'm going to ask a few questions here on this post. Then I am going to think about them, and post my answer in a new entry on or before the 1st of January. I think this kind of self-discovery is important, and required for meaningful growth. Plus, it's just fun. :) I hope you will join me! If you do let me know either by commenting below, or emailing me, or via Twitter, or some other way! I'd love to read what you have to say!