Prepare to enter the wild and wooly world of an adult with Aspergers Syndrome, a form of autism characterized by intellignce, quirks, social difficulties and downright strange and oddish behaviours.

People with Aspergers generally are high functioning in everyday life but have great difficulty connecting with others due to the inability to read faces, body language and subtle verbal clues. They also tend to take words literally and have a hard time multi-tasking.

Oversensitivity to touch (clothing has to be soft and often the tags removed), light (do not leave home without the sunglasses), sound (loud noises and noisey places are avoided), taste (many Aspies have quite a limited diet and are frequently very picky eaters) and smells makes the everyday existence more of a challenge.

Fasten your seatbelts and come on in...
To find out more about what Aspergers is..please check out my earliest blog entries

Tuesday, April 15, 2014

Lyme Disease

Lots to Say

First off, I want to thank my kind readers for their caring words and comments! It really means a lot to me! Thank You!
 Second, I am off facebook. Just not in the mood. You can leave messages for me in the comments, if you like.
 Third, did I ever mention how helpful therapy is? I continue to be amazed at how much my thinking changes and improves just through talking to someone for fifty minutes a week. Yes! I met with my Therapist yesterday.
 Fourth, I am feeling well enough to be out off bed and cooking food for myself:)
 Fifth; I do think in pictures, Autism. Words are slippery, changeable things that can be quite challenging to find and comprehend. Thinking in visuals, or pictures allows me to understand my inner world of thoughts, feelings and emotions with relative ease.
 Case in point... Let's say that whenever someone is born, they are given a small house, representing their physical body. From a young age, when my body was being physically hurt, I kept "leaving home", or dissociating. My home/ body was a painful place and I'd escape and run away anytime the pain was unbearable. 
 Being autistic means being very sensitive, having at least twice the amount of normal neurons (in my humble, one-sided opinion). Basically, I would reach the point of "unbearable" before a non-autistic counterpart. And I did have some truly hideous things perpetrated on my body, no doubt.
Thus and so, I regularly "left home".
Methinks, looking back, that being caught in my body was like being a sucker. Any fool would have realized how extremely unsafe and painful it was to every be in the small home I was given at birth.
 And that's...interesting. I was given, gifted with a physical body of My very own. It never felt safe and secure. The walls always trembled with the wind and the door was constantly being broken in. I never even had time to paint the walls or hang pictures. The legs are busted off the bed, but if I ever bothered to fix them someone will just bust in and break them again.
 It's time to tell myself...that I do, truly have a home and that it is safe and secure. No one can break the door down...anymore. It's time to mend the furniture, shore up the walls, throw a warm quilt on the bed and start living in here.

My Journey to Loving Myself Following Sexual Abuse | Psych Central

My Journey to Loving Myself Following Sexual Abuse | Psych Central
This is an excellent article on something I've mentioned more than once, self-loathing. It strikes me that I have yet to make peace with my body. I blamed and hated my physical body for feeling pain and sickness and causing/ exhibiting odd sensations (undiagnosed autism, body memories).
 Boy, it takes a lot of effort to walk into This room of thought. It is full of erroneous, negative messages. Time to open the door and walk in.

Monday, April 14, 2014

Every man for himself

And every woman for herself and every child for themselves. What does this even mean? It means, if you can't take care of yourself, aint nobody going to do it for you. If you can't do the job, it ain't going to get done right. It's a fatalist, fucked mentality that completely revolves around the individual.
 It means always do what you need and to hell with anybody else or what they need. Hold that mirror up, so you can only see yourself and not Anybody else, cause they don't matter.
Looking back, I grew up in an every man for himself household. Picture a half dozen starving, neglected, rabid dogs. Did I love my siblings? Yes. Were we cruel to each other? Absolutely. The strongest and fittest, the one who could grab the meaty bone faster with intimidation, guilt, anger and threat of reprisal, got the bone, the most food and attention.
My parents encouraged and were amused with these childish antics. Name calling, putting others down, emotional and physical confrontations were rarely dealt with. "To the victor the spoils". We were expected and forced to fight it out amongst ourselves.
It was similar when punishment was to be handed out. If you could run fast enough or talk a good game, you could get dad to hit the wrong kid, the unoffender. Truly, it was a fucking, ongoing dogfight of who could make someone else feel worse.
Picture a ten foot pit with six half-starved dogs in it. Fighting and scrapping to put the others down so as to climb up over the weaker backs just to get out. It did feel like a barbaric cage.
That was no way to live. It isn't a good way to live now, neither.
I've always done what I could for myself and when the kids came along I could easily put their needs above or alongside mine. That's what a mother does thinks and cares for the children above all else. I don't need the paperwork to prove it, I know it. But the dysfunction of my youth haunts me in the repeating patterns of the present, where I live in an air of "I can do it myself or it doesn't get done."
I still haven't learned teamwork or how to ask for help. I grew up knowing that my pain and distress was my own. No one would listen or do anything to help me Even if I did manage to find the words to express my hurt and pain.
In my family, if I got sick...and let me tell you...I was sick an extraordinary amount of the time. Geez, you'd think being beaten, raped, sodomized and starved would weaken a child's immune system or something!
No one gave a rats ass if I was sick, there was no comfort no caregiving...nothing.
I remember my sister telling me I was faking illness to get attention. Excuse me? No attention was ever given to me when I was sick. The daily grind of chores, cooking, changing diapers, cleaning floors, none that was stopped when someone was sick. No one cared!
God, I felt like a miserable excuse fir a human.
I was continually mad at myself and frustrated with my body for being so broken and sick all the time. I didn't understand how the abuse had frazzled and over stressed my small body.
And I believed my sister when she said I was faking. There wasn't any other "good" & "sound" reason. I started believing that I was making it all up to try and get someone to take care of. Aspies like answers and I bought into this one.
My sister wasn't the only one who assumed I was faking, so did my parents, other siblings and sometimes the doctors. I continue to have difficulty articulating physical sensations. Lately, this four weeks of misery shit, seems like there should be a 1-10 pure misery scale. I wouldn't know what halfway decent even felt like.
Did you know Lyme an be an Incredibly Highly Painful experience? Yeah! There are physical pains, sometimes local, sometimes all over. Muscle pain, neurological pain, numbness, pins and needles, headaches, all kinds of awful shit. Who wants to hear about it? Who can even comprehend the enormity of it? I'm taking fuckingfull strength mondo pain killers in the middle of the day because I can't tolerate such all over, all encompassing, unremitting pain some days.
No one ever cared to even listen to how I felt before....why would now be any different. No one would try to help me if I was in distress before...why would they now? See, I'm stuck in a pattern.
I can look when I was around nine....and I remember having this much pain for days at a time. Physical pain, maybe with a little emotional thrown in....back then, at that age.....I was being raped, sodomized to be exact...a few times a week by my dad. Yeah, such pain was everywhere and overwhelming.

Found a site

See, I'm not crazy or lazy. Never have Been! All my strange symptoms that sent me to the ER and doctors has all been due to having Chronic Lyme!

LymeBuddies on Facebook
Symptoms of Lyme
Early symptoms soon after exposure by tick bite:

Skin rash around tick bite – often hot to the touch but not painful; may have bullseye shape. Not everyone gets a rash!
Erythema migrans (EM) – the official name for the tick bite skin rash
Mild illness
Flu-like symptoms
Swollen lymph nodes
Stiff neck
Muscle aches
Body aches
Neck aches
Joint pain
Knee arthritis
Neurological symptoms – often occurring some time after exposure, from weeks to years later.

Limb pain
Limb weakness
Radiculitis (numbness, tingling, burning)
Bell’s palsy
Visual disturbances
Poor motor coordination
Memory loss
Difficulty with concentration
Change in mood
Changed sleeping habits
Thinking difficulties
Nerve damage – in the arms and legs
Limb weakness
Motor coordination problems
Muscle weakness
Meningitis symptoms
Stiff neck
Severe headache
Heart abnormalities – heart problems
Irregular heartbeat
Shortness of breath
Not all patients with Lyme disease will have all symptoms, some can be specific to neurological, heart, psychiatric, or physical (muscle & joint pain, etc.) The symptoms can also present differently at various stages of the disease progression. Some patients do experience all the types of symptoms as this is a multi-systemic infection, infecting multiple parts of the body and causing extensive symptoms. To complicate matters, many of the symptoms are not specific to Lyme disease, and can occur in many other diseases as well. This is why it is known as “The great imitator” and can make it very hard to properly diagnose.

- Posted using BlogPress from my iPad

Battling Lyme Disease

I typed in "Lyme can barely move" in google. I found a blog about an Aspie woman with Lyme. Excerpts:Lyme is Such a Pain
For nearly the past decade I’ve had pain that the doctors could not explain. I’ve had MRIs, CT scans, X-rays and more blood work than I could have ever imagined having. I’ve had nuclear stress tests, regular stress tests, ultrasounds, physical exams, and no one could come up with a thing. I had been told that I have severe osteoarthritis in my neck (I don’t) and that I have RA. I don’t. I’ve been told that I have Fibromyalgia, CFS, and possible mixed connective tissues disorder, Lupus and possibly MS. Possibly MS? They do have tests for that, you know, and they are usually pretty conclusive as far as I’ve been told. First I have Sjogren’s Syndrome, then I don’t have Sjogren’s Syndrome. First I have Celiac Disease then I don’t have it, then I do again. What?! (For a bit of an intro into this please see my post: It Begins With a Bite: scroll down.)

I’ve had doctors even tell me: “Why bother testing for any of these things? We still won’t be able to do anything for you. Learn to live with the pain and exhaustion.” Great doctors.

A month ago the diagnosis finally came: Oh! You have Lyme Disease. You present just like someone would present with Lyme and since all your other tests have come back negative, then that’s what I believe you have.” Blood taken (again) test results back: LYME POSITIVE. Now an explanation.

I cried so hard when I got that diagnosis. It was a combination of knowing what the hell was going on finally and “Oh my God, I do not want this stuff.” Chronic Lyme is no picnic. I hoped for vitamin deficiencies (which I do have as well) and for nothing more. But something inside of me knew it was true. I’d told doctors about the tick bite and I had even been tested once near the beginning of the ordeal but the doctor NEVER gave me that section of the test results. I had no idea they’d tested for Lyme. The results were negative anyway. That is very common to have happen. If you don’t have enough antibodies in your body to the Lyme bacteria then you will test a false negative. Over a decade I’ve built up plenty.

The pain a person goes through in Lyme is multi layered. First, there is the horribly, unbelievable physical pain. It is unreal the severity of Lyme pain.

Last night my head felt as if someone were trying to squeeze my skull with a vise and poke holes through my ears with long, thick, sharp needles. The pain in my right shoulder was not like a bursitis pain during the night last night. It was very concentrated in one specific spot and was excruciating. Not searing, not burning, but sharp and stabbing on the surface as well as running deep down inside the joint.

Many times my hands hurt so badly that I can barely type and it takes me forever and a day to get something simple down on the keyboard. Sometimes it’s hard to hold utensils to eat my meals.

I have a super high pain threshold and so I tend to take on a lot of pain. I do not rush to the emergency room, though I most probably could have several times over the last several years. Instead, I save my ER visits for those times when my heart is doing things that frighten me the most. I hate going to the ER because they run all these tests, more radiation, more chemicals, and they always say: “You’re in great shape.” Well, hell, thanks for telling me. I shall now go home and do my happy dance. I’m in great shape!

Spirochete do not show up on these tests. They do not see the actual damage being done or the reason for the pain and extreme exhaustion. When you’ve been fighting an infection for any amount of time, your body gets very, very very tired. Just think of how you feel when you come down with a really nasty flu or a case of bronchitis. You feel horrible. Your body aches everywhere and you can barely move. That’s what it’s like with Lyme but worse. I have had some pretty nasty flues in my life and having Lyme for almost a decade means I’ve been fighting these kinds of symptoms and so much more this whole time with very little reprieve from it all. People with Lyme Disease are real fighters. They are also real sufferers. Hopefully, we’ll be survivors and eventually Victorious too.

Sunday, April 13, 2014

Wish I could run away

To a place that had answers to what ails me, to a place where someone says "here, let me help you. I know how much you hurt. I know what will help."
 To me, debilitating illness is when you can't take care of yourself and no one knows or can help you feel any better. It's when you have to muster all your strength, push thru enormous pain and fatigue and convince your body you can do this. The piece of bread out in the kitchen will be worth this much effort.
 Seriously, this is crazy ass, debilitating, ferocious illness.
 Having disease and distress in which no one can say, "here, take this, it will help."
I'm in a place with no answers, not even a hint. 
 I stopped all detoxing practices. Read last night that if the body is that fucking miserable it's either from under detox Or too much. Had to analyse...based on my body sensitivity, I established that I'm doing way way too much. So I stopped everything. I'm still thoroughly, through and through exhausted sleeping heavily most of the day, but I was able to get up and cook for myself and actually eat a warm meal. The aches and pains are lessened as well as all the intestional/ stomach high discomfort.
 Sleeping is a most natural way to heal but it doesn't work when you have a family to take care of. I've pretty much fallen short in teaching my kids to care for themselves and those who are sick. 
 Yeah, I'd run away to this mythical place called "Grandmas Place". She was the only one who could look at me and see that I was hurting and sick. She was the only one who would voluntarily help me. She would cook for me. Sit and eat with me. Get me a blankie if I looked cold. Bring me an aspirin. Ask me how I was and what she could do.
 I'm even having a hard time mentally finding and getting into an even purely visual, dreamlike place where I can feel warm, safe and comforted.
 It really is a bitch. I don't know.
Physically, I'm a wee bit better, which I'll gladly take and means a lot. Everything else, well, I'm getting through this day.
Don't know if I have any hope at all but I'm still here and I know my kids appreciate that. I know they'll help if I ask them. Don't know if or when this misery will ever end. But I'm making it through today.