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Autism: Horrible Stinky Food

My husband made hamburgers for himself in the toaster for supper. I did notice he was going to do that, but he doesn’t like me to comment on these things, and… what was I supposed to do?

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On the nights that he cooks, I frequently have to wait until supper is finished for him and my son before I can start to make my own – and that in itself is very hard on my system. That isn’t his fault – I just can’t function well with anyone around, including my husband. I do okay with my son there, but my son has been there since he was a baby, and that is not true of anyone else in my life – which is maybe why my son is the only one who doesn’t have such an effect on me.

Oh – I guess I should mention that I am the only one in my house who doesn’t eat meat. I also have a lot… a LOT!!! of sensory issues around food, so what people typically eat (in Canada – but I imagine many foreign foods would be bad for me, too) is not only something I can’t eat, but something that causes me a lot of struggle when other people eat these foods around me.

Hamburgers are one of those foods.

If they are cooked on the barbeque, and the doors are closed, it isn’t so bad. The smell goes away pretty fast, and I can cover my nose while I wait.

Inside, however, is very different.

It stunk up the house so bad I couldn’t block it out with three layers of blankets. My husband, seeing my distress, sprayed room freshener (which made it worse) burned candles, and opened the windows. It still took more than 1.5 hours before I could take the blankets away from my nose.

Molly, (one of my Chihuahuas) stressed out by my struggle, barked at my husband (which she doesn’t do) until I brought her to me and calmed her down.

My functioning, reduced to nothing since I was unable to eat my supper due to my husband’s choice of his (and I begin crashing when my meals or snacks even are even a few minutes late – and this was getting close to 2 hours) left me unable to find food even when the smell had cleared, and my husband had cleaned the kitchen.

Knowing it was nearly time to get my girls ready for bed, and I had to do something, I walked into the kitchen – but I ended up rocking on the floor unable to think. Clara (one of my dogs) and Ditch (one of my cats) came to help comfort me.

I couldn’t deal with my needs, but they needed me, so I got up and got them through their bedtime routine.

I ended up eating a granola bar (which hurt my tongue) two pieces of dried mango, and the tea that my husband brought to me. It wasn’t nearly enough. Not nearly. But it was close to 10pm, and was too late for me to eat – besides, I still couldn’t think of food.

For me, it isn’t true that I “will eat when (I’m) hungry enough.” The truth is, the hungrier I am, the harder it is for me to eat. Even foods that usually work for me are rejected (in my thoughts as well as my mouth, throat, and stomach) when I am too hungry. Foods that are often okay for me frequently cause a very bad reaction if I eat them in those moments.

So I went to bed feeling hungry and weak. I woke up the next morning (having only made it through the night by medicating myself) feeling hungry, nauseous, and weak. In fact, though I did eat that day, it still took me until after I had eaten supper and dessert – a full 24 hours after the issue began – before my body was regulated and felt okay again.

It is really hard on both me and those who live with me when normal things that they do has such a bad effect on me – and what am I supposed to do with that?

 

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Autism: Learning to Can Part 2

I have heard (and this is the reason I decided to go with the pressure canner to begin with) that once you start canning, it becomes addictive. I now know how true that was.

I canned the plums, and it took a long time. My back was sore, and I was very tired. There was the added bonus of, having this huge pot of boiling water that needed to be dumped, being able to take a bath (we have an extra wide bathtub and not enough water in our hot water tank to ever use it.) I needed that bath then with my back hurting so much. I really enjoyed that.

After that, my husband brought home a huge zucchini and some cucumbers. Of course, they needed to be pickled (especially since I am the only one in my house that eats them and the zucchini alone was over 4lbs.) Then, too, I also had a fresh head of cauliflower, some carrots, lots of onions, some garlic from the garden… They could be pickled, too! I made 12 pints of Italian flavoured zucchini pickles, and 12 pints of mixed pickles.

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And that is when my pressure canner came in. Of course, I had to try that out, too.

I must admit that I have been afraid of pressure canning. I mean, it seems everywhere you turn on the subject people are saying how dangerous it could be – but then… mostly it seemed the danger in the canning itself was involved in the older style of equipment (the new ones have safety features built in) and the rest is about not following directions.

I can follow directions… if they are written down, that is.

So I made white bean soup. White bean soup (very much like the chicken stew with rosemary I used to make in my pre-vegan days) is one of my favourite meals – but it makes way too much considering I am again the only one here who eats it; same with most of the food I eat. I made 10 pints. One didn’t fit in the canner – I guess my pint jars are the same width as wide-mouth would be or something; I could only fit 9. One jar didn’t seal – there was a new lid which was slightly bent. I meant to save that for something I would just refrigerate, but I unbent it, washed it, and couldn’t tell it apart from the others. The others all looked great!

So much fun!

Then a couple of days ago, having bought some dried black beans, I decided to can some more. I made black bean soup and vegetarian chili – 8 pints each (I forgot I could fit 9 in, but 8 was a good number and the jars were all just filled with the amount I had made in the slow cooker.)

I learned that day that pressure canning two batches in one day was too much for me. My head hurt from the amount of concentration I had to keep. My back hurt, and my girls were stressed out since I wasn’t able to sit with them until after 7pm that night. Yet looking at those 16 jars, and hearing the pings (I have learned to love that sound!) of jars sealing was incredibly satisfying.

Course, here I am two days later, aching to do more canning. I suppose it isn’t really worth the time. 16 jars worth maybe about $11 after factoring the cost of the food for a whole days work – when an eight hour shift would have paid quite a bit over $100 if I could have kept working, yet… this calms me and brings value to my life, where working caused me panic, stress, burn out, and an overwhelming feeling that whatever I did didn’t matter.

There is more to life than money, and I think… I think I really like canning.

Oh – and in response to my mother’s question when I spoke to her the other day, “how does it taste?” Better than I could have imagined! Really, there is no comparison to store bought canned vegetarian soups.

 

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Autism: Learning to Can Part 1

It started out with plums. Lots of plums. Our tree was full this year and… I had to start somewhere, so – plums!

The pressure canner I ordered back in August never came in. I waited and waited, and then went camping – but my son was still home and he watched for it. It was in Edmonton, and was supposed to arrive here the next day, but never came.

Did someone steal it? Ugh people!

It isn’t like we live in a poor neighbourhood. We likely live in one of (if not the) oldest and least expensive homes in our area. We are surrounded by doctors, teachers, nurses, business owners… We may not have much, but the people around us do – so if it got here and they stole it??? I don’t understand that.

Perhaps it never made it this far – but then… it was fed ex that had it (I think; might have been Purolator.) Did one of their workers take it?

So I got back from vacation and was stressed out to find it had not come in. I emailed Amazon about it, and they said they would send another. Then I learned of ‘my baby,’ and everything else dimmed in comparison. I struggled for many days and then one day woke up deciding this was the day I would harvest plums and try canning for the first time.

I guess when most other people learn such things they turn to people who know what they are doing and learn from them. That isn’t me. Working with other people presses on my heart and mind that I am not good enough. I don’t belong. They may not be thinking the same thing; I will allow for that. When I am with other people, however, I get attacked – in my head, in my heart, all around me – and I just can’t.

Though I am sure most other people don’t understand this level of anxiety or isolation, I am sure that if they experienced anything similar – like perhaps they received an electric shock every time they got something right, they would be afraid to keep going, too. Not that I get shocked – but it is like that. I get attacked through thoughts and feelings. It makes it so hard to function that when other people are around, I really can’t function. Not won’t. Can’t. I drop things, I spill things, I make mistakes. I can’t think for the shouting in my head (that I am working so hard to silence) telling me how stupid I am to think I belong there, or could do… anything.

So I don’t. Other people work, and serve, and do things with other people – and when I am there, I sit, or I try to hide in a corner and become invisible.

It has to be this way, it seems, for I am not strong enough to silence the attacks – and the attacks always come.

This means that if I want to learn anything, really, I have to learn alone. I seek out ideas, research, study, spend an inordinate amount of time fixated on the subject, and then one day I will just try.

Well, knowing I was interested in canning, my husband brought a huge water bath canner home from the thrift store where he works. I mean, it was huge! It took up two burners on the stove. I had all these plums, so that is where I started. Over a couple of days I made 24 jars of canned plums (and got at least that amount again in fresh plums, some of which we brought to my husband’s work and gave away.

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Autism: Successful Trip

In spite of a real scare at the beginning of our trip, I am glad that I decided to go camping with my husband – even if I had little notice, and my plans were changed last minute when a large dog crate came into the thrift store where my husband works, and a neighbour offered to lend us their portable dog pen.

This year, I even did pretty well with food. In fact, I don’t think I have ever had a better prepared trip (and often I spend weeks trying to figure out what to eat.) Unlike other years, where ‘in order to not be difficult’ I would agree to eat what I could with other people, there was no way I was going back to eating meat this trip. That meant separation right at the foundation of the meal.

Instead I opened up three cans – black beans, chickpeas, and refried beans. I mashed up the black beans and added oatmeal, onion flakes, hot peppers, capers, garlic, ground flax seed, broth, salt and pepper. That made 6 ‘bean burgers.’ I mashed up the chickpeas and added onion flakes, garlic, Kala Namak (black salt with an ‘egg’ like flavour,) hot peppers, ginger, and parsley. That made 6 ‘chickpea salad’ meals. The refried beans, mixed with taco seasoning, made five ‘taco salad’ meals. I froze the beans and chickpeas in aluminum foil (I might just freeze them next time in my silicon baking cups to take out and heat.) Then I brought up a couple of cans of lentil soup.

It worked!

I must admit, I did get tired of bean burgers on bread after a few days – especially as the buns started to get stale. But then I wasn’t really hungry, or needing vegetables (I brought up home made kale chips and had a vegan breakfast shake mix with ’27 different fruits and vegetables’ which helped a lot with that – plus, they did have salad, and I ate that.)

When I didn’t want the beans, I could easily make myself granola mixed with yogourt, or coleslaw salad mixed with assorted nuts and corn chips.

So aside from one moment asking someone not to add his eggs to the grill until my pancakes were done cooking – and another moment where I had an allergic reaction when the frying pan used for my food hadn’t been cleaned well enough after other people had eggs on it (not as bad as it could have been, since I am loaded up on allergy medications this time of year – my throat, mouth, and tongue started to swell, itch, and go numb; I took more allergy pills, and had Pepsi (which somewhat neutralizes it,) and the reaction went down) I did okay with food.

As I have said, that has never happened before, and was a huge breakthrough.

So I was able to get my time in nature, swimming every day, watching sunsets with ‘my girls’ from my tent as I wrote my journal. And I really enjoyed it.

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Transitioning to go home was another story – and one best saved for a different post.

 

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Autism: Live and Learn and Grow

I must say, this has been a particularly good year for gardening for me. It isn’t that a lot is growing – I have realized some mistakes along the way (that I will hopefully not make again in the future.) I am growing organic without any especial help, meaning that some of my food is being eaten by bugs. I haven’t added a lot in terms of food or fertilizer; though I have done some.

Having planted wildflowers in the past, several of my garden beds are being overrun with flowers where I had intended to have vegetables. Things kind of look overrun and unkempt I guess; especially when compared to other gardens in the area.

I think the best part is that when I have needed the energy – to turn the soil, or pull the weeds, or especially to harvest the food – it has been there. That certainly hasn’t been true in other years, and even between harvests this year my energy has been so low that I have often wondered how I would get it done. But then the food was ready to harvest – and suddenly I had the energy to gather the food.

It has been wonderful!

Having food growing in my yard also means having access to foods I wouldn’t normally purchase, and being able to experiment with recipes that I hadn’t tried before.

One day I went out, and my ‘onions’ looked ready. Well, I thought all along they were onions, as that is where I planted some green onions last summer – only I had so many volunteer tomatoes come up in that garden last year that the onions got buried. Luckily they came back again this year, and there were a lot of them.

So I went to harvest my ‘onions’ only to find that what was growing there was garlic! Bonus! I certainly wasn’t disappointed in this find – only surprised. I have tried growing garlic before with no luck (apparently close to where I had planted the green onions!) and was surprised to find that up on the stem of the garlic, there were smaller, milder garlic cloves (at least I think that is what they were) growing in a bunch.

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I pulled out all of those baby cloves (since they didn’t look like they would store well) and harvested some chard to go with them, and sauteed them up for lunch. I can’t express how good they tasted! That was a meal I hadn’t tried before – but then, I do like most vegetables (so long as they don’t have too many seasonings or such added to them.) These I just sauteed up in olive oil with a bit of salt, pepper, and nutritional yeast (makes it taste cheesy!)

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Well, I harvested much more kale and cherries; made kale chips; dehydrated the cherries; felt like I was making good use of the life I was given. Kale chips just might be my favourite food in the world. Of course, I make them myself. I am not sure I would like them so much from a bag in the store – especially with the huge price on them (though I even understand that as four big batches made in the oven only fills a couple of medium sized bowls when finished.)

I brought those kale chips camping with me, and they saved me many days of food meltdowns filling multiple dietary and sensory needs, and allowing me to move on to other foods without struggle. (Though I did have to use a LOT of self control not to eat them all in one sitting.)

I have been home for a few days. A neighbour dropped off some garlic by my gate – again with the baby cloves. Remembering how good the chard was, and adding that to the memory of my sister in law telling me beet greens tasted like chard, I sauteed them up with beets from my garden, and beet greens. Again, so good!

Just this morning I spent several hours harvesting raspberries from my backyard. I got a large bucket full (or 9.5 US dry pints to be exact – I measured) and I have another large batch of kale ready to go. I think I will save that for tomorrow.

All in all, I will say that this hobby has met with success. I am so happy, and so content – even though not everything grew as I wished it would. Well, live and learn, and… grow!

 

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Autism: Wet Gloves

The idea was that I would go and and wash dishes while my tea was cooling, and then take my tea, and my girls outside, where we would enjoy the evening as we did most nights while my mom was here. I have to be able to make plans like this, and when those plans are disturbed, it affects me strongly.

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Affects me? Effects me? Whatever. The problem was wet gloves.

It may not seem like such a big deal to those who don’t understand, but for me to be able to wash my dishes, I have to use gloves. Dry gloves. For without gloves, or with gloves that water has gotten into, my hands literally feel like they are burning the entire time I am doing dishes, and for long after – like sticking my hands into acid, burning.

It is one of my major sensory issues – and one I work around by using gloves.

Well, it wasn’t my turn to cook yesterday, so I had to leave the kitchen for someone else to use (a very difficult thing in itself for me – and the only reason I go along with it is that when other people are here, I get paralyzed, and really struggle to make the meals at all.)

The meal that was made, was not something I would have made – and not one I like much as it is (though to be fair, most meals made here are not for me, since I am plant based, and the others aren’t.) In fact, this meal was one that only the person making it likes, and likes a lot. But it was messy, and used a lot of dishes, and… ended with water all over the counter, which got into my gloves, and brought me to tears as I set my tea down, and picked my gloves up to start on the dishes.

And suddenly everything was overwhelming, which brought me to a very teary meltdown.

Flipping rubber gloves inside out to dry the inside is not an easy thing to do, and not a fast thing to do, and I was very upset about my plans being altered (my necessary plans to get through the dishes which were overwhelming me to begin with.) As I was trying to flip them inside out, and they weren’t flipping well, I got frustrated, and cried out in that frustration as I shook the glove in the air to try and force the fingers out.

“What is going on?” he asked me.

“Someone put something wet on my gloves, and now they are wet inside,” I answered.

“Do you want a new pair,” he asked.

“This is my new pair,” I responded.

“Well, I am very sorry,” he told me.

Great. But do you understand? Do you know why this is so horrible for me? Can you even imagine? My tea is getting cold, and my girls are waiting for me, and I have all these horribly dirty dishes from a meal I didn’t even want that I have to wash by myself, and my hands are going to burn, and my mom is gone, and my children were taken, and…

Your response is telling me that you feel good about forgiving me for being so upset at something you did – and still you leave me to continue this activity that is now going to feel like I had my hands soaking in acid, or bleach because you didn’t think about my gloves being there on the counter (not even that close to the sink, and folded over to avoid getting water in them).

And I will be the one left with the shame of another thing that tells me I don’t deserve to be loved, and everything that goes wrong is my fault – even when it is something you did that hurt me.

And I just want to shout – “Don’t you think that maybe, this time, you are the one needing forgiveness?” And forgive you, I will – but please stop making me feel like I am horrible, and you are merciful, when you do something that causes me pain, and I feel the pain from it – how is that yours to forgive?

I realize it wasn’t done to hurt me. I realize that when you put the dishes there, or cut the vegetables there, or did whatever you did that got the inside of my gloves wet – it was more that the thought of the gloves getting wet never crossed your mind, than that you did it to hurt me, but…

I can also say that, though I have hurt many people in my life, and though sometimes that was a direct consequence of something I did – I never did it to hurt them, either.

I may fail more often than others, and I may hurt people more often than others (it seems my very presence often causes people more pain than they would have had without me) but I don’t think that should bring us to the point where I should apologize when you hurt me.

And I just want you to understand that things that might not seem like much to you, can cause huge amounts of pain and distress for me – and I am not wrong, or unreasonable to feel it.

 

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Autism: Employment Barriers

For six months I have been struggling with the words spoken to me by my psychiatrist during my last appointment, “So you can work, but you don’t want to,” she summarized after I was explaining that I had tried working and going to school so many times in the past twenty years, and failed all along. Her summary was completely off, but that is what happens with me: I feel like I am being completely clear – and when people summarize them for me, the meaning is all twisted and wrong. I don’t know what I am doing or saying to have my words interpreted so poorly – or what I can do to communicate better.

So I wrote, and wrote, and wrote again trying to express my struggles to her so that she would not misunderstand me the next time. However, as is true for me, even my most condensed versions were pages and pages long. So I tried again. And again. And again. Until finally I was able to cut it down to little more than a blog page in length. What was left was this:

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Can’t work, or won’t work? These are the most pressing barriers standing between me and being able to succeed at employment.

  • Severe anxiety – I am told this has to be healed before I try to work again.
  • Easily overwhelmed – prone to ‘crashing’ that can last several weeks or months after just a few days of work, or meltdowns/shutdowns that I cannot avoid.
  • Multiple sensory issues – really, I need to be home, as I can’t avoid these in public.
  • Very low energy – can’t do active jobs (stocking shelves, housekeeping, construction, landscaping, etc.) as I struggle for weeks or months with very low energy, which gets worse the busier I am supposed to be.
  • Emotionally draining – being near people (even not talking to them) leaves me drained after a couple of hours, and lasts days to recuperate.
  • Arthritis – back pain, joint pain in fingers, hands, and toes that gets worse with use – cannot do physical or repetitive jobs, stand long periods of time, sit long periods of time, etc.
  • Physical issues – digestive issues, allergies, stomach upsets, etc that are all made unbearable when away from home. I can’t use public bathrooms (have nightmares) and this makes me sick when away, too. Any work I find would have to be at home.
  • ‘Exposure therapy’ doesn’t work for me. The more I have these experiences, the harder they are for me to bear.
  • Social anxiety – I am paralyzed trying to work with other people around, and must work alone (also no phones, no problem solving, no customer service, no criticism, no handling complaints… I can’t.)
  • Further education is out of the question. I went to college twice, and (through extreme stress, and only being able to get through due to a definite short term end date) did well, but the resulting jobs were overwhelming for me. I can’t seem to apply my knowledge out of the classroom. We can’t pay for more schooling for me – and again, leaving home to go to school includes all of the above issues.
  • Multiple sensitivities – from smells of people’s food in the lunch room, to the smell of smoke on a person, or chemicals that leave my nose bleeding, my hands sore, unable to function… There is much I cannot work around – and such are in each workplace.
  • Sleep issues – I get sick if I try to do things in the evening/overnight. It takes a long routine (8pm to 8am) for me to get the sleep I need. If this is interrupted, I cannot function. Also, there are many nights I struggle to sleep anyway, and then can’t function the next day. I am immediately affected by lack of sleep.
  • Daily Routine. I can’t do changing shifts. I can’t work outside of my routine without getting sick/not being able to function. I can’t just change rules, make exceptions, be flexible…
  • Physical routine. Not so much routine, but I have to eat meals on my schedule, and snacks as I need them, or I ‘crash’ and can’t function. Need to use the bathroom at a moment’s notice, too, so can’t be tied to anything I can’t move away from – and causes panic, sickness, frequent meltdowns when away from home.
  • Multiple triggers – especially when I am in public. These are caused by dates, attitudes, certain personalities, smells, sounds… any reminders of traumatic events and failures – and I have a lot!

It isn’t that I won’t work. If all of these could be addressed, and a suitable job could be found for me (which would pretty much have to be something I could do at home on my own schedule) I would do it – but I am told I am asking too much, and won’t be able to find work like that. Anything less is a setup to failure. I can’t go through that again.

Being told I should go to work when these things aren’t addressed (and some are such a part of me, they won’t be healed, but must be worked around) is like telling me I have to return to a severely abusive relationship – and it terrifies me. After my last appointment, it took me months to be able to get past the depression, and back to the activities that were adding value to my life (but seemed to be dismissed in favour of finding a job.)

 

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Autism: I See You

Layered with jackets, coats, toques, and gloves, he heads out the door. The weather report says it is -16 outside, and I believe it – I took my girls out for under a minute, and my little one was crying because her feet hurt. He has to spend the entire day outside. 8 hours in the snow and cold.

Day after day he heads to this job. Five days a week, and it is rare for him to complain. The weather is cold, it is hot, it is wet… All day he is busy outside, one person after another asking him to help them, hardly a moment to think. All day moving furniture. All day ‘peopling.’ Often he has to stay late. He comes home tired. Wet. Sweaty. Hungry. Day after day.

As he heads out the door, I sit in my chair at my computer, dogs on my lap. I pick up my tea to finish the last of it. Warm under my blanket, I acknowledge him leaving… usually. I feel guilty that he is going and I am staying. I know I can’t, but that doesn’t make me feel better. He likes his job, but I couldn’t do it. I couldn’t come even close. In fact, at this time the very idea of going out to work, to volunteer, to… pretty much anything, overwhelms me. Still I feel guilty.

Defensive, too. Not because I feel I do enough in comparison to him, but because… well, when he is home, I am nearly always sitting. I am paralyzed. It isn’t his fault, this is all me, but I can’t move when he is home – and I want to tell him this isn’t what I do all the time. When he is gone I might get up and clean. I play with our animals. I do the dishes and the laundry. I organize and rearrange our furniture (which I understand he doesn’t quite appreciate since he doesn’t like change…. still)

I exercise. I write my blog. I cook. Only no matter what I do, it rarely compares to what he does, and I feel guilty still. And there are lots of days when I am so overwhelmed with life that I actually do shut down and spend just about the entire day on the computer – while he is out moving the equivalent of two households of furniture in a day.

Defensive because it isn’t that I don’t see what he does, but I can’t. I would love to be able to go out to work, and be as busy as he is, and still live well – but that isn’t possible. I’ve tried. I’ve tried a lot, and I don’t do well at all. But then I still struggle a lot when I am at home with few places to go, and little I have to do. Not fair, but not because I don’t want to be.

Defensive because I do have an income of my own, and though I don’t go out to earn it, I do try to live to earn it – by writing this blog, and taking care of our home, and trying to get well so I can do more (only since I am so often overwhelmed and struggling, it is hard even when I am trying my very best to believe that I will actually ever get there.)

And then on his days off, he runs errands, and volunteers to sing and speak in the senior’s homes, and still deals with people – and he cooks those days, because I am paralyzed, and he tries. I know he does.

But I get overwhelmed by how he ‘isn’t as clean as me’; by wet counters, and open drawers, and extra dirty dishes, and so much meat! I get overwhelmed, and shut down, and he takes over. He does the cooking, and he does the dishes, and then he rests for the little time he has home. He does all of this, and still stays calm most of the time.

I am not easy to live with. I didn’t say I was. With my sensory issues, and extreme sensitivity to anything ‘wrong’ with the world (such as factory farms and the suffering of animals – and the greed of corporations that leave me unable to buy a new dishwasher because “they could make them to last, but don’t”) and my struggles with communication, and with changes to my routine, or being pulled out of my fixations, and my struggles with food, and… it isn’t possible for me to be easy to live with – it is not easy for me to live with other people.

But I do see him. I do see what he does. I do see who he is. And though I am often overwhelmed with how his life affects my issues, I am grateful for him – and really don’t know how I could live without him.

Easter 2016

 

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