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Autism: Getting Harder

For three days after we got home from camping I had energy. It was so nice.

I stripped and waxed my kitchen floor, removing at least thirteen years of paint and buildup. I had not done that before, but I did remember my mother doing it.

For years I thought I would either remove the linoleum (or is it vinyl?) floor in my kitchen, or just tile directly over top. No matter how much I washed and bleached it, the floor never looked clean. But the tiles were too expensive, the styles were not what I wanted (I really wanted blue and white tiles, but they mainly had blacks, whites, browns, and grey.)

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Then my mom was here, and we had to drive to another city for my appointment – one with larger building centres that might have the tile that I was looking for. They didn’t.

So I asked my mom about stripping and waxing, and she told me what I needed. We looked through that city, but could only find one industrial sized container of floor stripper. I quickly grew tired of looking. One day, however, we went in to the building centre near home, and there it was! Not huge. Not too expensive. Much better economically (as well as environmentally, I imagine) than removing and re-tiling the floor.

While she was here, she showed me what I was supposed to do on a small section of the floor under my stove. I later did under the fridge, but waited to do the rest of the floor after she left – after all, she had just spent seven years working almost like a slave cleaning (for free) for a relative. She needed a break, and I didn’t want her time here to be spent on projects for my house. Not at all. I just wanted to know what I was supposed to do, so one day when I was alone and had energy, I could do it.

Coming home from a week of camping seemed to be the right time. I woke up on that Monday morning with energy.

I did have a lot of cleaning and laundry to do during that time, and that kept me pretty busy – but I was also being given an old (near 30 years old) dishwasher from my SIL as they were moving to a new home that week, and the new house came with a good dishwasher.

I wasn’t sure that I wanted it. My upstairs is pretty full, and my kitchen didn’t have the space for a portable dishwasher (our other one was built in, but the seal broke, and I was just using it for a draining rack.)

So I spent a lot of the Monday doing the laundry, cleaning the house, and organizing the kitchen and dining rooms to make room for the dishwasher. Suddenly the floor of the kitchen was clear, and so I took that opportunity to strip it. That was a lot of work, and it was all I could accomplish in a day. So I left it like that, but felt really good about having put in a full, busy day of work.

The next day was similar. There was still so much to do – but again, I put in a full, busy day, and felt really good. I waxed the floor that afternoon.

The third day was also very busy – for I was still organizing as well as cleaning. I had to push myself then, but I got a lot done, and I felt really good about it.

And then I crashed.

Bad.

For the last six days I have been in an unending full blown panic attack. There seems to be no cause, as I have no appointments, have had nowhere to go, have had nothing to plan for, haven’t even had visitors – but I am panicking.

I am panicking, and exhausted, and feeling restless, and hopeless, and unable to motivate myself at all. In fact trying to motivate myself only causes my panic and restlessness to grow.

I suppose that I should be thankful for the three good days I had – for I don’t often even have that. I am thankful for those days, only… I feel stronger the guilt of the hard days, which don’t allow me to be productive, and don’t allow me to ‘hold up my end,’ and don’t allow me to give either what other people give themselves, or what they expect of me.

I feel guilty because the hard days far outweigh the good, and because of that I can’t even keep up with the basics of living let alone moving forward to give of myself to others (through work, or volunteering, or even visiting, or…?)

I feel guilty because after nearly 41 years, I would have hoped I could have won this battle against myself to be able to do and be more than I had in the past. Yet with each year that passes, it only seems to be getting harder.

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Autism: It Is Enough

With the weather nice, and all of this extra energy that I have had for the past 2.5 weeks, I have spent a lot of time in my garden. There is still a lot to do before it is ready for planting, and there is only about a week and a half before it is May.

I am so thankful to have this energy – and for those of you who have been following this blog for a while, you might know it is highly unusual for me. Having energy means that I can get things done, which at other times overwhelm me. It is perfect timing for gardening season. Of course, I have no idea how long it will last, and I might wake up in the morning completely drained – and then not have energy again for months.

All I can do is use what I have, and hope it is enough to carry me through.

Yet… one thing in, for me, means several things left out. True, I have energy – so I can move, and I can keep going, but… Now that I am out gardening all day, I am not practising my keyboard. I am not spending much time on Pinterest. I am not doing the research to plan out how to garden properly. I am not exercising… okay, well I am exercising in the garden, and I am going for walks with my son, but I am not using my elliptical machine while watching documentaries. I am not spending much time cooking or planning my meals – so I am eating quite a lot of lentils lately.

People have always responded to me when I am doing something well as if I should then try to add in something else. For example, when I went to my Psychiatrist and told her I was learning Spanish, and Latin, and practising keyboard. She pretty much dismissed the activities, decided I was okay, and suggested I then go look for work.

The very idea caused me to crash for months, but it isn’t just that. It is always this way. When I am doing well in something, I am doing well in that thing. It is definitely not a good idea to suggest I try doing more. Not only will I fail at the new thing, but whatever I was doing that was good? Yes, I will crash and fail in that as well.

Often busy lives are compared to juggling. Okay, so when I am struggling, I can rarely catch the one ball I am tossing in the air. If I am doing okay, I can juggle that ball, and maybe one other. But while people are watching me juggle the two balls, and see I am doing okay, they automatically want to throw in a third – but then all the balls fall. I can’t do it.

I am not actually good at juggling. I guess it is not a good comparison for me. When I ran my daycare, though, I had these juggling scarves. They would catch the air and float slowly back down. I could juggle two, and sometimes three of the scarves, and really enjoyed doing it.

So trying to continue with this comparison to explain my ability (or disability) to others – it is like typical people are skilled at juggling two or three balls at a time (work, family, friends), where I am maybe able to juggle two or three scarves (blog, Spanish, keyboard.) ‘They’ see me doing okay with my scarves, and try tossing their balls to me to (work, for instance) and everything comes crashing down.

Or I might be able to add in something (gardening) but only at the cost of another (struggling to get my blog written on time, not practising keyboard…)

I am not good with metaphors (is that even the right word?) but I guess what I am trying to say is that I would hope that when I am doing well, rather than trying to add more, people would instead respond to me as if it were a good thing that I was doing well – and leave it at that. Don’t promote. Don’t add to. To be doing well is a huge achievement in itself, and is more than enough for me to work to maintain.

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Autism: Drained of Energy

My head is pounding today, and once more I have no energy. I should have expected it, I guess – but as is usual for me, when I do have good days, I expect them to last. After 40 years, I probably should have learned this isn’t the case for me. Still, it is good to have hope.

For months my energy has been low, even for me. I hardly have the ability to do routine things, like cook and clean, let alone find motivation to add anything to my schedule.

In the last 6 days, I had decent energy for 4 of them. Sunday I was really tired, but I have come to the conclusion (after months of Sundays ending the same way) that church – even when I enjoy it, and feel good there – exhausts me. Every Sunday I am overwhelmed, and exhausted, and prone to meltdowns. I guess that is the cost of being around people.

For four days, though, I had energy. That might not seem like such a big deal for most people, but I keep a ‘mood chart’ which I send to my therapist once a month. This keeps track of how depressed, anxious, and irritated I am each day, along with how much sleep I got, which medications I took, and how much energy I had that day.

The energy section is on a scale of 1-4, with 4 being high. Some days I have taken to putting in 0, as I haven’t the energy to stand, let alone get anything done. Most months I will have several squares marked ‘1’, with more around ‘2’, and the occasional 3. I hardly ever reach 4 for energy; that might come if something exciting was planned, but isn’t even guaranteed for that. I am not a high energy person. Maybe one or two days a month would be marked ‘0’. I just couldn’t.

For the last three or four months however, the pattern looked more like a computer code or something (I don’t know that much about computers, but…) 1-0-0-1-0-1-0-0-0-1-0-1… for months. I was sick twice during that time. Really sick. Well… not hospital sick, but sick enough to think it could kill me. Both times the illness held bad for a couple of weeks, and left me drained after.

It is not unusual for me to have low energy, but this is ridiculous even for me.

And then in the last week, I have had 4 days where I marked ‘3’ on my chart. Four! And I can’t express how good those days felt. I cooked. I cleaned. I exercised. I practised my keyboard. I made a gardening scrapbook. I planted seeds in starter pots. I dreamed.

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How wonderful!

I wonder what it would be like to have energy like that most of the time. Some people do. I know some people do. But I never have. Perhaps if I had energy, I wouldn’t be so depressed all the time… I wonder: Am I depressed because I rarely have energy, or do I rarely have energy because I am depressed?

Even as a child, though, my energy was very low… but then I remember crying myself to sleep every night, too, from the age of about 7 or 8 – so it is possible I was depressed even then.

I don’t know. What I do know is that I had energy this week. I had it, and it felt so good, and I thought that this time I would be able to hold onto it.

Today, however, my head is pounding, and it took me most of the day just to gather the energy to pick up the keyboard sitting on the table right beside me to type this blog. That was all the effort I could manage for today. I wish… I wish I had energy.

 

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Autism: Lost Week

I think the week was good. I mean, I remember that I had gone out to the show a couple of times with my husband, and that we really enjoyed what we had watched. From that moment until now, however, everything has become fuzzy.

It came on all of a sudden and unexpected. I was cleaning my dishwasher – on a Thursday even though it is not my cleaning day – when I started to cough. It came from my lungs, and from the beginning I struggled to get through more than a few seconds without coughing. Due to the sudden onset, and how it just wouldn’t let up, I assumed that it was caused by the disinfectant I had used in the dishwasher. It made sense. It was pretty powerful, and those things often leave me coughing – only not so long.

When my husband came home, he was coughing, too. He said he first noticed it around 3pm (mine was sometime between 2-2:30pm.) It came from his lungs, and wouldn’t let up for more than a few seconds at a time right from the beginning.

Strange.

Even so we went out that night as planned. We went to see the dress rehearsal of “Stereotype High” at our local theatre. All evening long we were coughing every few minutes – but we couldn’t be sick. I mean, colds don’t start full on like that. They just don’t. So despite the coincidence that my husband and I began coughing at nearly the same time, and even though we were at separate parts of town when it began, we thought it was environmental rather than a virus. After all, aside from the cough, we didn’t feel sick.

I must say, I really enjoyed the play! Even though it was a comedy, and typically I don’t at all like comedies (the jokes, rather than making me laugh, often leave me feeling nauseous) I really liked this one. It was funny – like “Corner Gas” funny! I laughed a lot (and coughed a lot) and didn’t feel sick about it.

The next morning I felt sick, though. Very sick. So I emailed my friend who was supposed to come for a visit to warn her against coming, and then I fell asleep. Normally I don’t nap, but on that day I was so tired I couldn’t keep my eyes open.

My husband came home from work early, and went straight to bed. From Friday afternoon until early Monday morning, we barely woke up to acknowledge another day passing. I fed my girls, and took them outside, and went to bed. Over and over.

All over achy, feverish, chilled, burning eyes, bad cough, no appetite… sick! So very sick.

And then only thought I remember having that entire weekend – despite the fact that my dog was scheduled to be spayed out of town that Monday – was a reminder of Stephen King’s “The Stand.” In the beginning, a few people went into public places with a cough, and pretty soon the whole world was dying. That weekend I was pretty sure I was dying (and if that were true, we likely spread it to a theatre full of people, which would quickly spread to the entire world) and I was pretty sure I didn’t care.

Well, here I am 8 days later, and it is the first time in 8 days that I can form enough of a thought to write my blog post. It is the first time in over a week that I have been able to keep my eyes open. And as my dog sits healing from her surgery on my lap, I wonder how we even got through that day.

I guess I really was sick after all. Sorry theatre people!

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Autism: Searching For Talent

This morning I took a 485 question job quiz, hoping to get some idea of what it is I could do. Everyone has to be good at something, right? When I read the free report at the end, however, even their suggested careers were in the “low” category for compatible matches with who I am. Top of that list was motel clerk – which is the job I had last before being put on disability for the severe anxiety I experienced trying to do that job.

I answered all of the questions honestly. I don’t know what went wrong. Perhaps it is my extreme discomfort working with, meeting with, or talking to other people. Maybe it is the fact that I am very emotional, prone to tears, and can’t handle criticism in any degree. Could it be that my vivid imagination is not matched with any creative talent? Or perhaps that while I both see and feel other people’s pain deeply, I am neither able to respond well or help them in any meaningful way.

Whatever the failure of this test, and the multitude I have taken over the years, I am no closer to finding ‘my place’ in this world than when I began. I simply cannot see what I am good at.

Following this test, I went through a list of quizzes to find my ‘hidden talent.’ Though the questions seemed somewhat ridiculous, I was hoping for an “aha” moment that left me with the thought that “I could do that.” Instead the answers all revolved around creativity – painting and knitting (neither of which I am good at.)

Casting aside the knowledge that I have no talent in creative areas save for my imagination (which for the life of me I cannot extract from my mind in any practical way) a creative job, open to criticism, would leave me severely incapacitated for the shear panic such a job would bring. I would be paralyzed. This is possibly the reason I have never been able to get further in creative pursuits: to improve, you must accept criticism of your work, and I can’t. I do know when my work doesn’t meet expectations, but all I hear from the words that should help is, “failure.” I shut down. I just can’t.

On the opposite end are jobs that require precision, accuracy, detail. While I would find comfort in knowing exactly what was expected of me at all moments, my brain is often… scattered, imprecise, unfocused. I know I would make mistakes, and I would always fear them. I beat myself up over mistakes since I am such a perfectionist, and feel shame over them for years after. Such a job, again, would not be suitable due to my anxiety issues.

Taking their idea of motel clerk, at least I have some experience in that. The thing is, though, that I am very awkward. Not at all good at small talk, or dealing with comments or requests outside of the script I wrote for myself in order to do the job, there are limited options to the places where I would get hired in this area. Namely the places where a motel clerk was also required to be a breakfast attendant, housekeeper, pool attendant, and laundry worker all on the same shift. I didn’t have the energy to keep it up, and it quickly burnt me out. Besides, working with the public is not the best position for one easily scared or hurt.

I did enjoy doing the laundry on that job, and even the housekeeping for the rooms where people had checked out without leaving too much of a mess – but with my back pain, feet and legs prone to severe pain, and low energy, it was not something I could keep up long term (or even continue on the demanding pace required in such places.)

While I love spending time with my pets, and they all like me, most jobs involving animals are not real options for me. Pet sitting is out (though I have done and enjoyed it in the past) because I have too many animals in my home to bring others around, and am not at all comfortable in other people’s houses. Kennel attendants, much like motel clerks, require too much interaction with the public, and too much energy in cleaning the kennels. I am not good at training animals, and not at all able to take biology in order to be a vet or assistant (in fact, I failed grade 9 science not being able to go into the room after the biology students due to the strong smell of formaldehyde.

Then there is the fact that I like plants, and trees, and all growing things. But I have never been one of those people who could keep things growing (some things, okay – like my accidental sunflower garden, or the avocado trees that have been growing in my living room from grocery store seeds, but mostly no.) Add to that the energy and physical issues, and the fact that I have bad allergies throughout the growing season, and I really don’t know how I could use that interest for good.

So once again, though I started out with hope that this time some idea would shine forth as true, I am left once more thinking there is nothing I could do. Sad.

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Autism: Dirty Lazy Slob

It isn’t just him. In fact, there is only one person in the world that this doesn’t happen with, and that is my son. The thing is, though, that since we have been married for 13 years, I would have hoped this would have worn off by now… but it hasn’t. Obviously, it hasn’t.

I suppose the only way for me to be fully comfortable with a person is for me to have them constantly in my life from their infancy. There seems to be no other way around it. Had he gone to school, I am most certain I wouldn’t have been comfortable with my son, either.

I knew that from the time I was young, and that is the reason I wanted children so bad: because I couldn’t get close enough, or feel safe enough with people any other way. Only to reach that point in a relationship takes a lot of years, and likely too much attention on my part – and not enough socializing for them, I guess. Likely not a great situation for most children, though my son would not have accepted things any other way (I suppose because he is Autistic as well, and refused school and other places where he was away from home, with many other children, or otherwise uncomfortable.)

When I first left home, I lived with room mates – a friend, and my son’s father to be exact. Since none of us worked or went to school during that time, we were pretty much always together. Of course, that meant shared housework, and for my part, I couldn’t… I just couldn’t. They believed I was… “dirty” was the word they used, only we all knew I didn’t like the mess, and was very particular about cleanliness… “lazy,”is the other word and they likely believed it; and I believed them.

For years I believed this about myself; that I was a dirty, lazy, slob. The thing was that I hated the mess, the clutter, the things left undone. I HATED it! But rather than be able to clean due to that hatred, the environment drained me; so then I felt lazy, which reinforced what they were telling me.

And then I lived on my own, and suddenly for the most part, my home was clean; and I was the one cleaning it! Yes I was tired, and yes sometimes things were untidy (by that point I had a 1 year old to care for) but things were getting done… until depression hit, that was. I just couldn’t overcome the exhaustion of depression to keep up with more than caring for my son. The housework was just too much. Once again they labeled me: “Lazy,” “doesn’t care,” “dirty.”

Yet still I hated the mess, I just couldn’t overcome it. Once more, the environment drained me. Yet their labels stuck in my head, and though I fought them, I still believed them.

Until I overcome the depression (which returns in cycles that can last anywhere from a few weeks to a couple of years depending on the situation that set it off) and once more my house was clean, and I was cleaning it… all by myself.

For years I ran a daycare, and had my foster children, and my house was clean… but the thing was that when adults were around (or even older children and teens) I still couldn’t clean. I couldn’t cook, I couldn’t tidy, I could hardly move.

Though it has been 23 years since I first left home, I now know that if I were in that situation again – the one where people were around me all the time, and I was required to clean and do my part with them there, I still couldn’t do it. The labels would be repeated, and the people would believe them, and what is more, I would believe them… almost.

But the truth is I am not lazy (though my energy is extremely low, and I get overwhelmed easy) I am not dirty, and I do care very much! The more fitting description is that I become paralyzed, and unable to function with anyone over about 4 years old around me – and that is as true with my husband of 13 years as it is with a stranger that comes to help; and there really isn’t anything that can be done about that, for no amount of years, or practice, or immersion into those things has had any effect at all on my ability to function in that situation. So I can only hope that those who matter will understand, and give me the space to get things done.

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Autism: Not a Great Week

This past week has not been a great one for me. For one thing, I didn’t write much, and am now two blog posts behind schedule (keeping in mind that I have been scheduling my posts three weeks in advance, which is best for my stress levels, and am now only two weeks ahead.) It isn’t exactly that I had nothing to write about, but more that I didn’t have the energy to motivate myself to do much more than binge watch Netflix for much of the week. These things will happen with me, despite my best efforts to push past it.

Going along with that really low energy thing, I hardly even worked on my lessons this week. Maybe two days, and I didn’t even do all of them then. It isn’t that I didn’t want to, just… I couldn’t make myself do anything – even the lessons that calm me.

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I did clean, but I can’t express how difficult that was for me. Every moment was like torture as I pushed my exhausted body to move, knowing that leaving it messy would just make everything worse, including my energy level. Yet moving made me so tired that I had to take breaks between every (5 minute) activity: clean the bathroom, watch Netflix; wipe the counters, watch Netflix; vacuum one room, watch Netflix…

I did go for a walk one day with my son. That was especially hard, and I almost didn’t make it home, I was so very tired. You’d have thought I was trying to move after running a marathon, instead of just taking a short walk after a decent sleep. So tired. I don’t know what is going on there.

Then above that, I have been unusually prone to tears. I mean, I would just be going along, feeling okay, when suddenly the tears would come – and everything bad that every happened weighed on me, and the tears wouldn’t stop. And no, it wasn’t the right timing for that.

A whole week of nothing. I went to care group, but didn’t speak – my words weren’t working this week. My brother in law came for a visit, and stayed two nights, and I struggled to talk with him, too. I worried that he would think I was being rude, or angry, or… I don’t know – whatever it is that people assume I am when I can’t talk to explain myself.

Everything I ate made me sick, and so I ate a lot of wheat – not the best choice for me, but the easiest to get down when I feel like that. Of course, then I had heartburn, and itchy skin, and horribly itchy ears, and insomnia, and of course it only made the nausea worse – but not until after I had eaten it, which is why I could. Eating wheat also brings cravings, and reduces my self-control in eating other foods… all to say it was a horrible week for health and diet.

All of this brought my functioning down to a very low level. If I could have brought myself to do my lessons, I wouldn’t have understood them anyway. If I could have talked to people, what came out likely wouldn’t have made any sense. It was not a week for making decisions. It was more one of those weeks that in the past have caused me to fail at just about everything I have tried to do because people will push me, and will not accept that while I am quite capable a lot of the time, sometimes I am just not!

So I guess it is just as well that so little got done this week, because whatever I did would have just become another regret to add to the pile of things that torture me at times like these. And once more I am thankful that they decided I needed to be at home – because really, at times like this (which happen too frequently to count) I just can’t survive out there.

 

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