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Monthly Archives: January 2016

Autism: Structured Days

Several times in my restlessness, I have asked my son how he does it. How does he stay home all of the time, and not become depressed? It isn’t that I want to go out, exactly, but I need some sort of structure to my day.

Perhaps it is easier for him because he has been home just about his whole life – although when I was running my daycare, and when we were trying to adopt, I did run my days with structure… even his, as he was homeschooling.

However, despite the fact that he has never wanted to leave home, he seems to be content in his world. He spends most of his time on his computer, some playing games on his PS3, or listening to podcasts, some on Skype with his friends (often two or more of these at once) and some time learning German on his tablet. Maybe that is the structure to his day.

He tells me that I need to find a hobby. There are several things that interest me, but I can’t seem to make a routine of them. Perhaps it is because I get discouraged in my inability to advance my skills – but this is more likely due to my inability to keep a routine, than in a struggle to learn. Likely it has to do with how quickly my routine falls apart – when my husband is home on an unusual day, or I feel too sick to move…

Most likely my lack of hobbies has more to do with how often I feel sick, and how little energy I often have, than any of the reasons listed above – though I know it is a combination of all of these that destroy my routines, and keep me from following through on the best of intentions.

But then, my son has low energy as well, and he is able to keep up with the things he enjoys. Perhaps then, the reasoning is in the difference of what we consider structure. My son seems content to spend most, if not all of his time, sitting down. For me, however, I only have days where I don’t move when I feel very sick (pretty much the entire month of January this year.)

In order for me to feel healthy, I need to have time outside – not a 20 minute walk each day, but more like 2 or 3 hours, if not the whole day. I need to have a good balance between time spent sitting, and time moving around. And that has been difficult for me to maintain in my exhaustion.

For my last job, for instance, although I was considered a front desk clerk, most of my time was spent cleaning rooms, doing laundry, and sweeping the parking lot. I wasn’t always moving, but it helped a lot that I often was. Except on those days… those ones where I couldn’t force myself to move at all, and was grateful not to have any rooms to clean, had to drag myself to the laundry room to switch the laundry over, and ignored the cigarette butts on the parking lot, because I hadn’t the energy to sweep them. But then I felt really guilty, and that wasn’t good, either.

But when it comes to hobbies? I want to learn to knit, and sew, learn Spanish, and learn to play my keyboard – but all of these cause back pain when I spend the time on them. I like colouring, and would love to do paint by number (I would actually paint if I were an artist, but that is not a gift of mine) or even spend time making puzzles – but again, my back.

So I could take breaks. I could walk along the trail (if it weren’t so muddy), clean my house, learn to garden… and I would love to do all of these. But I am so sick, and so tired, so much of the time, that I cannot keep these in my routine.

Instead, during this month of extreme exhaustion and discomfort especially, I sit at home, restless, and wondering how anyone can do this without feeling depressed. Perhaps next month will be better.

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Autism: Drug Free Treatment, Please!

The pain and dizziness continue to the extreme, but I did go in to the doctor this week at the advice of my therapist. I spent several hours Monday at the doctor’s, and getting blood work, x-rays, etc. to find out the cause of all of these issues, and then returned to the doctor on Tuesday.

The good news is that all of my tests came back “very good.” I don’t have any infections or health concerns, but he believes all of this is caused by the antidepressants. I have tried to express in the past how I always get bad side effects from medication, and here I am again.

I knew this when I was started on the pills, but when I shared this concern with psychiatrists in the past, they have never called me back. So I agreed this time… but I regret it now. Though I am very glad to know that I am not really sick, it sure feels that way. It isn’t like any of these symptoms are fake, and the coming off is even worse than the side effects going on (which were bad enough that I couldn’t continue even if I wanted to.)

Now I am sure, however, that if they are going to help me, it has to be drug free. This is too much for me to go through again, and even now that I am off of them, I am afraid of how long it is going to take for me to heal from this. I have already been lying on the couch for a month, and I can’t even think clearly enough to want to do something else.

If that is the treatment for my severe anxiety and depression, I would rather learn to live with those disabilities than to continue on this path.  My husband and I both agree that the best treatment for me seems to be in the way of sensory therapy, and lifestyle accommodations.

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Anyway, I apologize that my writing hasn’t been great lately. When I can’t think, it becomes really hard to write. Hopefully soon my head will clear, and I will be able to share my thoughts once more.

 

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Autism: Silent Tears

I don’t think anyone but me and God knows how often this happens… has happened… I have a thought. One thought. I think of one detail, that sets off a slew of memories. Memories so vivid, and so real, that for the moment, that is where I am.

And once more I experience the moment my cat died. The second I read that my Grandma is dying. The look on my cousin’s face as she passed away. The very second I realized the adoption had failed. The fears. The pains. The smells. The sounds. Who I was. What I was struggling with. Where I was failing. Who was missing. What I wanted. How I felt.

All of it is there. And in half a second, I can go from laughter to heartbreak and tears. In the seconds it takes for that memory to overcome me, hundreds more fight for attention… set off by a tiny connection – what I was wearing, how I was feeling, who was with me… anything.

Next thing I know, I am reliving all of the pain of my past, and all of my fears for the future. And in those hours of tears – quiet tears. Silent tears. Hidden, lost, alone, all encompassing pain – I am fully in all of those moments, flashing by second by second, and repeating until I think I will go insane.

And sometimes they are noticed – by my husband, who coughs a bit, and says nothing. That is okay. Before we were married, I told him this would happen, and I told him he couldn’t help. Just be there. I’ll get through it… I always have before. Sometimes by my cat, who will lie on my arm, purring and kneading my shoulder. I like it when he does that. It helps. Sometimes by my dog, who will lick my hand, and go lay down at the end of the bed.

Mostly I experience it alone. Mostly, I have always experienced it alone. While my emotions are never well hidden (I can’t fake that even if I wanted to) these tears are the ones that come to me in the dark. In the silence. In the moments when no one else will see.

It isn’t because I am hiding it – though I don’t want others to see the depths of my pain – but because in the dark, and in the quiet, those sights, smells, memories are given full reign.

Yet on the occasion that someone finds out how I spent the night, they respond in shock, and concern. Their response catches me by surprise.

They do not know how very common this has been for me.

 
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Posted by on January 28, 2016 in Experiences of an Autistic

 

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Autism: Why These Side Effects?

The days are all blending together, and I am afraid that if these issues don’t resolve themselves soon, I will fall into a depression that will be impossible for me to climb out of on my own. I am being weaned off of all of my medications. That explains the symptoms, but doesn’t help me to overcome them.

The shocks are really bad today. When I am lying down on the couch, there is a tingling in my forehead, and a struggle to maintain thoughts. When I stand up, it is as if I am being electrocuted, and the nausea is overwhelming.

Since I was still being shocked when I first went to the psychiatrist last June, from the anti-depressants I was on for two weeks in 2008, the fear that this will not go away in the near future is very real. I don’t do well with medications. I want to say that I never have, but I really don’t know the truth of that, since I was so sick as a child, I really have no memory of whether the experiences were from illness or medication.

The winter I was sixteen, I was called into the school office. I was in eleventh grade, and it still seems unreal to me. They told me that they had no record of my having been vaccinated. My doctor didn’t have the records, either. It is strange because on top of knowing I had all of my vaccinations, I had also lived in the same city all of my life, and had been at that school for three years. Never before had they had this concern.

So I went to my doctor, but as they couldn’t prove I had my vaccinations, I had to have them all redone (from newborn up.) I guess I could say I am double vaccinated for everything.

I am certainly not saying that caused my Autism. I had most of my struggles for as long as I can remember. What I do remember is that many of my mental health issues came strongly upon me within a few months of that event. I am not even saying they caused that, as a completely separate even in my life, which happened one to two months after these series of vaccinations, brought out a severe case of PTSD, which was completely reflective of my traumatic childhood.

From there, things snowballed. A week after that second event (which I will not share at this time, as the issue was due to my own naivety, and not exactly the other person’s fault) I started smoking – something I was completely against (and repulsed by) up until the night before I tried my first cigarette. Two weeks later, which coincided with mid-terms of my second semester at school, I couldn’t bring myself to go inside the school.

At that point, I had really good grades in all of the courses I was taking. They all interested me very much, and I had never had so many classes at once that I enjoyed. I would go to school, and the time would come to go inside, and I couldn’t bring myself to go through the doors. That lasted straight through to summer, so needless to say, I failed that semester.

Over the next few months, the flashbacks became so constant, I was almost afraid to blink. I was paranoid, afraid of the dark, afraid to be alone, incapable of functioning in the classroom, constantly anxious, and completely dependent on my boyfriend. I wouldn’t go anywhere without him, and was even tearing my hair out, and considering cutting, when I couldn’t see him.

I was brought to the doctor, and every medication that was tried on me that summer – whether birth control pills, or anti-depressants, or whatever else they prescribed to me, I had serious side effects from. Ever since then, I have had bad side effects from all medications. I don’t exactly know the cause, but it is my belief that something that year – Winter through Spring of 1993 – set off this inability to tolerate medications.

I quit smoking two summers later. Five or six years later, the PTSD calmed down a little, and wasn’t strong again until my children were first removed in the summer of 2008. As the birth control pills caused such side effects, I stopped taking them after a few months. So perhaps it was the vaccinations that created my intolerance to medications – or maybe I only noticed it then because things got to be so bad that year, and I had to take so much as a result of that.

I may never know. However, as I am living with the effects so bad at this time, I am both afraid of trying again, and wishing I had answers to why this is so hard on me to begin with.

 

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Autism: Walking the Dog

Struggling to breathe, I sit down at my computer to type. The world around me looks bleary, and I wonder if my head will ever clear. As exhausted as if I had just completed a marathon, but all I did was take my dog for a walk.

The exhaustion started before. Long before. There are days when it feels like it might be letting up, and I can sit at the computer rather than lying on the couch all day, but it comes back stronger the next day. It is hard even to think, I haven’t the energy to fight. And everything seems like it is ending. If I can’t think, how can I continue blogging? All of my posts will end up the same, as my brain recycles the same materials I have been focused on for three weeks. How will I overcome this? How will I live?

I haven’t even the energy to contemplate these thoughts long, though, which may be a blessing. I am tired. I am thirsty… always thirsty. I am being shocked. My side hurts. These are the thoughts that hold on. So I drown them out in episode upon episode of House. Nothing else, just House. Because when my obsession meets with the exhaustion, I haven’t the ability to consider anything else, and I am once again grateful that I have found a show with so many episodes.

It isn’t that I don’t want to do something else. My mind occasionally hits on the thought that perhaps I feel like this because I continue to live the same routine day after day, and it in itself causes the depression that I cannot overcome to leave the house. But the thoughts don’t last, for I haven’t the energy to move, and without the energy to move, how can I change?

But the weather turned mild this week (a few degrees above zero every day) and the sun came out, and thought I didn’t have the energy, I decided to take my dog for an afternoon walk. Perhaps the fresh air and sunshine will help, I though. They couldn’t hurt, anyway.

Well, it has become a routine for my dog, and he can be very insistent. That is a good thing, since I probably wouldn’t have made the second day on my own willpower. I struggle to stand. The dizziness threatens to overcome me. I spend much of the walk willing myself not to lie down on the middle of the road, and struggling for breath as if I’ve run a marathon. Not exactly encouraging symptoms.

But for a while after we have returned, when I have been able to rest, and breathe again, I can still feel the air on my face. I can still feel the sunshine on my skin. It may not feel great right now – nothing does – but it has to be helping, right?

 
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Posted by on January 26, 2016 in Experiences of an Autistic

 

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Autism: Gifts or Desires?

Between the exhaustion that has overtaken me, and the side effects from the medication that I am on (or perhaps something else, it is hard to tell at this point) I have had a pretty rough month. Add to that the strong anxiety that I always feel, and the hopelessness that clouds my mind during this time of weakness, and there seems to be little I can do. Little I will ever do again.

Unless I am truly sick, and won’t get better when I get off of these medications (which I am currently working towards) than something has to improve. The think is, I can’t see it at this time.

I design my houses (because the obsession will still not let go – and besides, what else will I do when standing makes me dizzy and nauseous?) and spend my hours on this, even though I am quite sure what I seek would make my family’s life harder, including my own, and that if we were to move, it would be better to live on a small property in town. I know this, and still spend nearly all of my time obsessing about the (impossible for me) lifestyle of a homesteader.

There is a struggle within me to find the place where I belong – and since I don’t feel it, I guess it can’t be here. But it is more likely that what I seek cannot be found in this life, and I must find a way to find calm in a world that I am not built for.

I have so much desire to be good at something, yet I have not found anything that I am especially gifted in, or have any real talent for. I am not one of those people, who though given some challenge, or disability in life, were also given a gift that might compensate for that.

Or perhaps all I desire has been taken from the gifts I admire in others, and has little to do with who I am. If everyone has some gift, how do I find mine?

Within my faith, it is said that when we give our lives over go God, the Holy Spirit comes and we are given spiritual gifts. So very frequently throughout my Christian life, I have taken a Spiritual Gifts Inventory. And always the answers are the same… My number one gift is Mercy. Okay, I can see that, as my level of empathy is incapacitating at times. But when I am afraid of people (as I always am), and am so awkward talking to them, and have no idea how to respond to their pain, how does that gift of Mercy help people?

My second gift on the list is Giving. That makes sense, also, for when people are hurting… and people always are, I want to give, and give, and give some more – and I can’t for the life of me understand how people who do have money can spend it on such unnecessary things (huge vacation properties, expensive vehicles, things…) when so many people in the world are starving. It makes no sense to me at all. Yet for all of that desire to give, I can’t bring myself past my anxiety and disability to make the money of my own to give away.

What good are gifts if I can’t use them, and have had little opportunity to test them to see if they are true?

So instead, I spend my time obsessing over abilities that I have never had – gardening, crafts, building, designing, creating… and do nothing to figure out who I was really supposed to be. And I wish someone would just tell me who I am, and who I am supposed to be. But I guess that is something I will have to figure out on my own.

 

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Autism: Will They Think I Am Lying?

Last winter, I hurt my back. We got nearly two feet of snow in two days (one and a half came on the first day) and I was helping shovel our driveway. Then my husband and I shoveled our neighbour’s driveway, as her husband had a heart attack. In the morning, I shoveled a path in our yard for my dog, as the snow was over his head.

My husband had been in a hurry that morning, and asked me to feed my rabbit. So I went downstairs (he was in for the winter) and leaned down to feed him. I wasn’t able to get up again. The shooting pains went straight down my back, down my legs, and into my feet, knocking me over. It was horrible.

For the first time since I had started that job, I had to call in sick. I had been working there for four years, with a one year break in between, when I went to college. I had perfect attendance there, also. It isn’t that I had never gotten sick, but that it caused so much anxiety to call in sick, that it was easier just to go in.

At that time, however, I had no choice. It was taking me 2 hours to walk the (maybe) 15 feet to use the bathroom and back. Every step was agony, and frequently I got knocked down by shooting pains along the way. Then it would take a lot of time, and a lot of pain to get back up.

I was off of work for six days, and the pain was severe even when I was not moving at all. That was just after New Years day, 2015.

When I did go back to work, though I could walk, the pain was still quite bad. Though my job was both working the front desk, and housekeeping, I was unable to do the housekeeping portion. For several months, I wasn’t able to do any at all, and then I might be able to clean three rooms on an eight hour front desk shift (the norm for me was six, and the winter before, I had been doing twelve.)

Though the pain lasted so long, it was April before I went to see my doctor about it. He ordered blood tests, and a CT scan, but they only found a little bit of arthritis. Not enough to explain the extreme pain that I was in.

It was, as it always is, so difficult for me to go in to see the doctor. I am both afraid that I won’t be able to express myself well enough for him to understand what I have come in for, and fearful that by coming in, he will think I am a hypochondriac. So even when my symptoms are severe, it takes me a long time to go in.

When he told me it was arthritis, though my back still hurt quite a lot, I was afraid he would believe that I was lying. A year later, my back still hurts in that spot. It isn’t nearly as bad as it was, but it is still consistent.

Then I went to be assessed for Aspergers. I had actually gone to this doctor for the referral in December 2014, after many years of thinking I was Autistic. He was great. He listened well, and was very supportive. He believed me. My fears are not from him, but they are my own. I was terrified that people would dismiss me, or again, that they would believe that I was lying. (I am always afraid that people will think I am lying, though it is rare that happens – it is just that I don’t feel I am good at defending myself, or expressing myself well.)

Only everyone I saw from December of 2014 until the present have said absolutely “yes” to my having Aspergers/Autism, and I have received the diagnosis. I am still afraid, and still hesitate, about going to the doctor.

At this time, I am having a lot of pain in my abdomen. Every night, and some days, I am having a lot of pain and cramping in my right side. I have small lumps in both of my thighs, that started growing in October, and multiplied. I have taken ibuprofen so often for the pain that I am worried about ulcers. I have been on so many other medications over the past seven months, that I worry that these could be a whole host of (possibly) serious side effects that at the very least, I should have checked out.

Though I haven’t gone to my doctor since he told me about the arthritis in my back. Despite how real I know these pains and symptoms are, I am afraid I won’t be able to explain in a way that he will understand, or believe me. I am so afraid that my doctor will think I am lying, that I would likely die of cancer before going in.

I am trying to convince myself to go in, but despite a very strong effort to bring myself to do just that, it will likely take a few more months, and much worse pain, before I can actually do it.

I wish their was just a scanner, like they have in the futuristic movies, that would just diagnose anything wrong with me without my having to say a word. Until they invent that, I guess I will continue to battle myself to get the help that I need.

 
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Posted by on January 23, 2016 in Autism: Out in Public

 

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