Sunday, August 8, 2021

Aspy Burnout

 I'm watching tons of vids trying to learn about Autism.  One of the things mentioned over and over again is 'Autistic Burnout' which is apparently different than muggle burnout.  Something to do with the world just getting to be too much to deal with and you literally shut down and have to sleep.  I'm still trying to understand it.

Looking back I'm pretty sure this happened to me in high school.  I think life just got to be too much and I had to shut down for several weeks.  I had always wondered if I had mono since I mostly just slept, ate and caught up with homework but now that I look at it I'm pretty sure it was autistic burnout. So much stuff happened to me during my senior year.

The biggest thing was that my dad had gotten violent with us so we literally moved out during the day when he was away at work and went to a rental house in another town.  I had to be driven to school since the bus didn't go to this town and I should have been in a different school but we never reported the move to the school so that we couldn't be found in case he retaliated.  I remember my theatre teacher dropping me off at the house after rehearsals because my mom had to go to work.

I was trying to get into college so that I could get the fuck out of my horrid living situation.  It was my grand plan to run away from home in a socially acceptable manner.  This meant I was taking upper level classes and classes at the local college in addition to my regular course load, being the stage manager for two different theatre companies and working part time.  I was also trying to graduate from high school early while applying for all the scholarships I could find since I didn't have any money for college.  

Oh and my guinea pig had a stroke and had to be put to sleep.  He was paralyzed and could no longer move around.  I'd had him for well over a decade.

And my dad was stalking my mom.

Pfft no wonder I burned out.  I remember being in precalc class and just not being able to stay awake.  The kids had figured out they didn't need to do their homework at home all they had to do was tell the teacher they couldn't figure a problem out and he would do it on the board for them.  Each kid would pick a different homework question that they had a 'problem' with until the entire set was done for them.  All they had to do was furiously copy the answers off the board.  Meanwhile, I had done them myself the night before at home so I went to sleep on my desk instead.  Every.  Single. Day.  I finally just stayed home for a couple of weeks and slept and ate and slept and ate.  It was back before I needed a doctor's note to go back to school after a prolonged absence.  My mom's note was fine.  One teacher yelled at me over it.  I just handed him the pile of homework I had done during my hiatus.  He was then floored when a few weeks later I had him sign off on my early graduation.  He thought I was being lazy etc etc and had no clue I had been working as hard as I possibly could.

I was never sick during this episode.  No fever.  No sore throat.  Nothing like that.  Just crazy tired.  I'm amazed my mom let me stay home like that but she knew something was up.  I'm really glad she did.  That was an act of kindness on her part and I'm really grateful for it now that I look back on things.

Friday, July 23, 2021

Rewriting My Life Stories

 I have a new diagnosis.  It happened very suddenly.  I was chatting with some women in the CFS/ME support group I run on Facebook regarding autism.  Now I had started to suspect that I might have autism after watching Hanna Gadsby's Douglas.  Now the women in my group were saying that it was impossible to mask their autistic traits since contracting CFS/ME.  Someone posted a list of traits of Asperger's in women and I matched 99% of the criteria.  Two days later I asked my therapist if he thought it was accurate and he confirmed that he also strongly suspected that I had Asperger's.  We chatted about getting a formal diagnosis but between the length of time the testing takes, my limited energy due to CFS/ME, and the lack of actual benefits from a formal diagnosis we decided to not pursue it at this time.

Right.  I have Asperger's.  I am Autistic.  I am an Autist.  Shit.

It is so mind boggling because while everything is exactly the same as it was a month ago it is also wildly different.  As I learn about Autism, I keep seeing things in my present life and in my past that I start to question.  Did I do that because I'm Autistic?  Did that happen to me because I'm Autistic?  Would I have done better if I had known earlier and put appropriate accommodations in place when I was at college or at work? 

Everything in my life has been a struggle.  While I didn't completely fail at college, I failed enough that I couldn't go to grad school like I wanted to.  I was always, always, always passed over for promotions and underemployed.  Although I did have a few good years at MIT, that eroded under a 1950's style boss after my hiring boss left.  I almost got fired and had to plead my case with HR pointing out my excellent track record under my old boss and how ALL the women in my department had left after he got put in charge [true story: only the secretary was left behind and me].  

So now I am rewriting my life's stories through an Autistic lens.  It is like removing rose colored glasses that you've been wearing your entire life and marveling at all the weird colors and exclaiming "so that is what everyone has been talking about all these years!"  

I'm introverted but I also shut down.

Skin picking/scratching is my life long stim.  I remember scratching my scalp when I used to study in high school.  I tried to do it on the sly.  I bought fidget toys and spinner rings to help combat it.    My face and scalp are much happier with me.

I can make eye contact without too much of a problem but am now noticing that I prefer it if I don't.  

I like soft clothes and if I find something I really like I buy multiples of them.  I have a half dozen of the same tee shirt with different prints on them and three pairs of the exact same jeans and I just bought three of the exact same nightshirt.  

While I've figured out how to communicate well in writing, I still stink at in person conversations.  I can't read a room.  I can't tell what a person's mood is by looking at them.  In fact I don't notice much at all about a person I've just talked with.  I would get off the phone with someone and hubs would ask how they are doing and I would realize that I never asked them.  

So I just came out the closet to my siblings yesterday.  I sent a very well worded email that both my husband and my therapist read through and approved of.  I told everyone that I was just setting the grounds for when I have to deal with them as mom ages and her mental decline worsens.  I told them I didn't expect anything from them but secretly wish they would say something and secret secret wish that they would commiserate with me.  But of course after eight years of deteriorating relations with them I got crickets.  Yup.  Nothing. At. All.  I don't know if they are gossiping about me or simply deleted the emails without reading or what.  No clue.  I had to ask my mom if she got her copy because even she didn't mention it during our daily chats via Messenger.  So now I wait.  I'll prob snoop around my mom's Facebook page since I have her login info to see if either of them talked to her at all.  But I just don't know how I feel about any of it.  I can't put a name to the disquiet that is rolling around inside me.  Yeah, what happened was totally expected.  Was it comfortable?  Absolutely not.  Typical?  Absolutely yes.

So now I got back to rewriting my life through an Aspy lens.  I'm happy at the diagnosis because so much stuff suddenly makes sense, but I also have mixed feelings about it.  I'm angry that things could have been done decades ago if I had know about it.  I've been in counseling since I was in my 20s.   You can't tell me that no one noticed.  UGH

Enough rambling for today...  

Tuesday, September 29, 2020

Illness in the Time of the Apocalypse

 I've been gone from this blog for a long time.  Not because I've been too sick to write but because I started a Facebook patient support group for the housebound and bedbound folk.  I was very involved and curated the group for the first year until it got enough members and the right tone for it to become self sustaining with a great set of admins.  The group is great.  It has over a thousand members now.  

Thing is we have a couple of members that are very depressed because of illness, a couple who are suicidal, one who is suffering from medical abuse/neglect and several others in abusive relationships.  They post constantly and it just drains me.  I hate going in to the group now.  It isn't because of lack of compassion.  I feel horrible for them.  I just don't have enough energy to deal emotionally right now.

For me it has been the ever deepening pool of crap I've had to deal with over the last four years.  I've moved, which was a major energy drain in and of itself.  I can't find a new doctor that will actually help me.  My liver decided to quit working.  I've been fighting to stay on a keto diet to fix my liver and stop gaining weight.  A microburst ripped through my neighborhood and downed hundreds of trees and took out power for a week.  My son was injured in a car accident.  He'll recover but not without lots of PT.  My mom is slowly descending into dementia.  My favorite sister in law passed away from dementia (she fell and severely injured herself and was allowed to pass peacefully).   I had to block my sister again after she posted some anti-semitic stuff that she thought was just anti-vaxx.  And then there is the planet at large.  Trump became president and ushered in the destruction of our democracy, the removal of all federal oversight of everything, and the packing of all the courts with conservative judges.  Covid happened, which prompted my mom and son to move back in with us.  The west is on fire making this entire year seem like a post-apocalyptic nightmare.  Not to mention the killing of POC by the police with no repercussions.  Now people think it is okay to drive their cars into other humans if they are holding a BLM sign and go into stores without masks on even though over 2 million people have died and thousands are left with CFS/ME like illness. WTF is wrong with people!?!  They literally don't care about the lives of other people.  I'm shocked.  Appalled.  Flabbergasted.  I don't have the words.  It is like they are brainwashed.  

Between all the shitposting on Facebook by my fellow townsfolk and family members, the depressing stories in the support group and my own personal hellscape I am defeated unlike any other time in my entire life. My husband really can't grasp what is going on with me.  Why I'm so upset all the time and am constantly in a bad mood.  I feel crazy isolated.  I can't go out because I'm at high risk of dying if I catch covid but people are literally putting me at risk so they have the 'freedom' to go without a mask.  I decided to take a chance Sunday and go to the farmer's market.  There was a lady blocking the entrance putting on a Trump facemask because the market folk wouldn't let her in without one on.  Once I was inside and at a vendor table she came right up next to me and I had to tell her to back away from me.  There was no one else around and she didn't have to crowd me but she did and she didn't care.  OMFG!  In the meantime my husband is out with his friends and family visiting and having meals and now off in CT working and staying in a hotel.  He just might kill me yet.  

I haven't cried so much in my entire life, ever.  I burst into tears at the slightest provocation.  I can't tend to other people's needs at all.  I have a short temper.  I'm just so done with everything.  The callousness.  The heartlessness.  People's individual selfishness and the greed driving the country as a whole.  

But it is really my inability to do anything at all to effect change that is shaking me to my core.  It is all out of my hands.  The elections.  The DOJ & GOP.  The police.  The neighbors.  Covid.  My family. My isolation.  My own illness.  So I cry.  I try to distract myself.  I stopped following the news so closely.  I've been watching post apocalyptic science fiction which is somehow comforting since good wins and the heros figure out how to survive.  I too will survive.  I'll get through this like I get through everything.  It is just a really rough road in between.  

Saturday, February 8, 2020

Food Glorious Food

I have a long and sordid history with food... mostly caused by the diet industry.  I'm fat.  I've been fat since I hit puberty.  For the most part I've resisted dieting but succumbed once in high school and once in the late 80s.  Both times I lost weight which I gained back during the couple of years afterwards which keeps me in line with the science studies on the matter.

Then there is the health side of things.  I knew my body reacted badly to some types of food.  I was raised in the era of Wonderbread and Twinkies.  My mother did her best to put meat and veg on the table for our meals but we were also poor and the good stuff ran out pretty fast.  If we were still hungry jam sandwiches were often the solution. 

When I went off to college, I did the whole vegetarian thing and ate lots of grains, beans and tofu.  Then the new food pyramid came out encouraging us to eat 9-12 helpings of grain/bread per day.  I was like "woohoo!!! I LOVE sandwiches!".  I also learned about hypoglycemia around that time and it sounded really familiar.  Back then it was considered quack science so I didn't get very far with it.

After graduation, I dropped the vegetarian thing out of practicality.  Working full time I didn't have time to prepare food from scratch everyday and restaurants didn't serve anything like the yummy meals available today.  A vegetarian meal often consisted of cheese pizza.

Then the 80s hit and fat became the boogeyman.  This is when I went on my first legitimate low fat diet.  While I initially lost a ton of weight, after eating low fat for 20 years I gained a ton of weight.  I became prediabetic and had heartburn.  I became intolerant to gluten and went gluten free.  Luckily it was before pre-made baked goods so if I wanted something GF I had to make it from scratch which meant no more bread, cereal or pastas.

This is about the time I revisited hypoglycemia and found the glycemic index.  I rejiggered my diet so that I ate low glycemic foods and changed the time of day when I ate certain things.  My energy levels improved but my weight stayed the same.

Once I contracted CFS/ME I learned about the Paleo Diet, GAPS diet and Weston Price Diet.  I decided to combine all three and went on whole foods paleo diet that included the healing foods from GAPS.  While I felt better, my weight didn't budge then I started gaining again.  Over 8 years my weight crept up by ~100lbs and I was now at 322.  At 5'2", I was around 60 BMI. UGH

Then two years ago all hell broke loose with my gut.  I've been having problems with it on and off since the first day I contracted CFS/ME.  I'd go through bouts where I couldn't eat solid food and fat bothered me the most.  Lots of nausea, IBS, diarrhea, etc.  But, this time it was accompanied by brutal stabbing pain in my left side.  I went through a huge battery of tests.  The results were fatty liver and fatty pancreas.  Nothing that explained the ab pain or the 'not being able to eat' problem.  The did find evidence of stomach lining inflammation but nothing active.  I got put on meds. 

Then I discovered that keto is the only fix for fatty liver.  I started paleo again.  I weaned off the stomach meds.  Then weaned off carbs to keto levels.  My meals consisted of protein for breakfast, lots of veg and a side of meat for my main meal and a small protein and fat snack for the third meal.  Weight started dropping off even though that wasn't my goal.

My liver numbers came down.  My blood sugar numbers were good.  I was no longer prediabetic.  I lost 18 pounds.  Then my stomach acted up again and I couldn't eat any fat.  It was back to turkey sandwiches and chicken soup.  I had to go back on the stomach meds.  This cycle happened twice more: keto diet, gut acting up, paleo diet, gut acting up, etc. 

Now I just can't seem to get back in the groove.  I last a couple of days and then cheat.  I use the keto rules to cheat on paleo and the paleo rules to cheat on keto.  I can't quite figure out what has me stuck.  The cycle of diet/gut fail or the fact that I used to be so poor that I often didn't get enough food to eat or my outright hatred of diets/weight control. 

Thing is I felt GREAT on keto.  I had tons of energy; my PEM was drastically reduced; and my brain fog lifted so I could read again.  And my liver was healing!  My doctor did a liver biopsy this year and it came back with no fibrosis which really shocked him.  Even my liver scan number came down by a lot.

I feel defeated.  I feel out of control.  I just can't seem to do this again even though I did really well before.  I managed 2 years the first time I did paleo and 4-5 months with the last year's paleo/keto round.  There is SO much junk food on the market now.  It makes finding 'keto' snacks easy and on bad days it is so hard for me to prep fresh meals.  I feel like a failure.  Like I don't want to get better. 

I want to come up with a food plan but I'm scared I won't stick to it again.  I'll cheat too much.  Right now I'm eating cough drops due to having a nasty upper respiratory infection and I refuse to use the sugar free drops because of the nasty stuff in them.  That means keto is definitely out for now.  I guess I'll start on paleo once I get off the cough drops. 

Maybe I need to get my mind off weight loss and switch to liver health again.  I still have a ways to go to fix it.  My numbers improved but I still have a fatty liver.  I can't make up my mind if I want to do this cold turkey this time instead of my normal easing into things.  Then again my body doesn't do well with sudden changes.  I need to come up with a better plan.  One that is both food and mental. 

Saturday, September 22, 2018

New Research

Nothing available commercially yet.

Scientists discover promising ‘off-switch’ for inflammatory diseases

“The macrophage takes the nutrient glucose, whose day job it is to provide energy, and surprisingly turns it into itaconate. This then blocks production of inflammatory factors,"

Scientists Discover The Root Of Autoimmune Diseases – And How We Can Treat Them

"the researchers dulled symptoms [of autoimmune disease] by suppressing the growth of Enterococcus gallinarum"

Brain's Lymphatic Vessels as New Avenue to Treat Multiple Sclerosis

"the brain and the immune system are closely interacting. When these interactions go out of control, pathologies emerge"

Sunday, November 19, 2017

The Key??

New study indicates that there is a genetic defect that reduces the number of T cell receptors in the immune system which leads to the immune system turning on and not being able to turn off.  This in turn leads to a feedback loop of inflammation, Krebs cycle malfunction, mito dysfunction and immune system activation.  When the mitochondria crap out, everything craps out and it turns into a systemic illness.

If this study is verified, then this is most likely THE cause of CFS/ME.  It is the root of all the other problems.  I'm just wondering if CRISPER could be used to repair the genetic damage and fix this illness once and for all.  A girl can dream.....

Wednesday, September 20, 2017

Leucine and KREBS

This is going to be short and sweet because I don't have time to hunt down the original paper links right now.  Prudential is demanding that I prove that I still can't work again.  Blergh

Davis et al have just shown that the immune system is haywire and the KREBs cycle is broken in PWME.  Their mito are fine but don't behave fine when exposed to the plasma of PWME so something is broken in our blood not our mito.  Our metabolites are also out of whack.

Along comes this article..
Targeting "Broken" Metabolism in Immune Cells Reduces Inflammatory Disease
that discusses how our immune system essentially hijacks the KREBs cycle so it can make molecules to fight bugs (whether they exist for real or not).  This leads to some weird ass biochem going on and of course inflammation.  They developed a new protein that works well in mice and it is similar to Leucine.  (LOL now I remember WHY I bought that huge tub of leucine!!)  Hence, my leucine experiment is about to start.