2011-2014. The original blog that got it all started. It represents reflections I had and sharing I did, during a time period in my life, freshly post autism diagnosis, worsening illness, though I wasn't yet clear on things. I was trying to process and going through a lot of hard learning. There's some good stuff in here, which helped others, and there's also some stuff that no longer reflects my situation and/or evolved insights. Please read with this in mind.
So, I haven’t had much to say yet, about the
"crusade" to remiss FM on my "getting a hold of fibromyalgia"
blog, in which I started a good couple months back. Oh grief. Well. Just a
I am better than I was at least, in the way of
immune strength. I haven't quite won my disability case, as my first
application got rejected. I need to be more secure in order to have more to
work with and therefore help myself to the full extent. I live with these
health issues in which drag me down every day, as well as being a person with
It was a stressful summer, unfortunately. I love
summer and it sucks when things put a damper on it. This included moving into a
new place and having to push myself to get it done, with minimal help (and on
the day before move day, I got the disability rejection letter in the mail.)
I've not written much, about the topic of feeling
unwell, and my struggles within that, specifically. It’s hard to talk about when
it comes to how I personally live it day by day/ I often go mute on really bad
days of feeling unwell. I often have no words for it, though sometimes when I
can scrounge them up, it’s worth journaling about it, so I can get it out.
I do intend to share what I’m learning when the time
is right, and I have recently learned something new about the causes of
fibromyalgia. I did get back on supplements and stabilize from the immune crash
I was in. I’ve finally cleared myself of the infection issues and the ensuing
affects of those too. Still struggling with general FM symptoms on a daily
basis, though. The pain can be wrenching, and there’s joint pain too. It’s deep
in my bones and joints. I don’t even think that part is fibro. Who knows.
Sometimes, it's hard to not just want to dope up on
an opiate painkiller and run away from the reality of my wounded and
sick-feeling body. Sorry to sound intense, but that’s how it often feels…quite
icky. Doping up and feeling “floatie” instead seems appealing, but I know that
won't solve anything and will only make me sicker.
If anyone knows what the word "Malaise"
means...it's the best description I can think of, in terms of how I feel to
either more severe or lesser degrees, on a chronic basis. Lately too, I’ve been
getting symptoms like irregular heartbeats, chest pains, and shortness of
breath (especially before bed) which is very unnerving and makes me wonder “is
it more than just fibromyalgia.” I keep going back to the question of lupus,
but I didn’t say I know for sure if that’s it. Maybe fibromyalgia syndrome is
just nasty, and autoimmune in itself.
The tests do suck, though, and once again,
autoimmune disorders (whichever one) take forever to show up and fully develop/
in some people. Of course, the doctors don't understand how one can feel
disease in the earlier stages, but many sensitive people do... only to be
unfairly classified as hypochondriacs; merely neurotic worry warts. It’s continual
injustice to many of course...very sad for humankind that we've come to this.
We need to resurrect the shamanic medicine
men/women of the past! It's not us who are sick, I say, it's this non-preventative
system. But rather than letting it get me down, or get upset over what
financial limitations prevent me from doing about it, I gotta remember that my
spirit is strong, and to feel my spirit, To let it run me on my feet, with
the help of the universes' energies. Well, Here is what I've written on my FB
wall today, a little rant-styled, please pardon it. I've had a hell of a time
in the past while here. Trying to keep it together...and I know I can.
Pushing myself to get through. I know it'll get
better in the future, somehow. My body is in the state it's in at this time,
and my mind is the way it is. It’s autistic in the positive of fluid and visual
thinking, but with the negative challenges of that as well; sensory
integration difficulties, overload, having to try extra hard compared to other
adults my age, to follow through with day to day life, but I try hard. My
spirit is strong and unbroken. It guides me when I’m fogged out.
I’ve been reading about this genetic defect of
Mitochondria linked to degenerative fibromyalgia symptoms.... sounds very
interesting. I'll believe it, because my gut says, "wow, that’s likely an
aspect" as I read.
I'm often operating in a part of my brain where
creativity/intuition meets science.Some
people call that pseudoscience, but I don’t think it’s always fair. That's why
things like metaphysics and homeopathic medicine make sense to me, even if my
logic tries to argue.
Now, I’m looking into some supplements and foods that
might enhance/recover the strength of cells, as well as a plant based stem cell
supplement. It looks interesting. When I get extra money on the latter, though.
I’ve got to wait until I win the appeal on my DB case.
Ugh! No comment, other to say that I now have
autism advocacy backing me, which finally protects me after all this time.
At least when I got rejected from helps, allies were there to write
letters and make phone calls.
Now the disability people are saying, "oh
we're sorry. We didn’t have the right information." Huh? My application
was as clear as day, and very thorough. They just don't want to get bad press
for discriminating against a person with autism. That's why I fought so hard
for that truthful "label.” I was drowning and getting sh**kicked without
Being precociously bright in certain ways, and
seeing through things, but paradoxically challenged with blind spots and lack
of formal education, and what they think are just character defects, isn’t an
“attractive” thing to them. Not any of it.
It doesn’t bring much sympathy I guess, though
perhaps pity and being looked down upon. That’s’ not what I care for though, it
can feel pretty insulting. I don’t think they truly get it, overall.
Well again, I don’t know if it's a lack of
understanding or if they're simply in denial whilst accepting precedents
written for the benefit of protecting old systems in which retain profit for themselves.
There’s always this dense change resistance.
So, have to wait now. I want to shift my
supplements and take things a step up. I want to do more with the kids. Cost
for everything is killer when there’s so little to work with.