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Autism: Insomnia

Though I am not able to take most prescription medications, especially anti-depressants for the side effects they cause me (and the fact they backfire and make me worse) I do happen to be pretty addicted to some OTC medications.

The number one reason for this is that I suffer with insomnia – and I cannot function without sleep. Not even one day. Now I know, after trying it last summer, that my struggles with sleep significantly improve when I eliminate gluten from my diet – but I don’t handle change well, and for me that has proven quite impossible long-term (especially when my husband tends to bring home so much breaded foods; since I can’t often get out shopping, I am left with what he buys.)

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So while during the day I can sometimes make it through, I almost always take something to help me sleep at night.

When I first went to my psychiatrist, she prescribed a sleeping pill that actually did help to begin with. I would take it, and be asleep in 5 minutes. But that 5 minutes turned into 10, then 15, then… she increased the dosage, and it worked for a while – until it didn’t. When she started me on this, it was 1/4 of a tablet. By the time I got to the full (lowest) dose, I was having bad side effects, and it had stopped working.

She tried other things, but none worked – and then there was the $10 pharmacist dispensing fee I would have had to pay before the cost of the medication. Having no drug coverage, I gave up trying, and went back to what I was used to.

For much of the year, I have pretty bad allergies. The scratch test done about 10 years ago confirmed my known allergies to eggs and feathers, with a reaction also to dust and moulds. The most surprising was my grass allergy, which left a large welt along the length of my arm, as I had a severe reaction to every grass they tested. (For reference, my egg allergy, which leaves me wheezing and gasping for breath left a 2mm hive, and the grass allergy was 11mm-14mm for each one.)

Since I can’t avoid grass (the neighbours will grow and mow it) I pretty much live of antihistamines from April through September (or in the case of this year I am still having to take them in January – I must have developed a new, unknown allergy.) So I take a 24 hour non-drowsy pill, which doesn’t quite ‘fix’ everything, and then I take another at night to give it a boost. Benedryl is great for putting me to sleep, and works really well on my allergies as well.

Then there are my stomach issues, which I have had since I was a kid. No matter how I try to change my diet to avoid those things that I know cause me issues, I tend to feel nauseous most of the time. It is very rare that I actually throw up – but I do come very close most days. It is a horrible feeling, and one that will keep me up at night (for it gets worse when I lie down, as many of my issues do) and Gravol has me asleep in 45 minutes (pretty good when my best days without medication take upwards of 2 hours.)

My psychiatrist was very much against me using Gravol at all – she had her reasons which she was going to share with me one day, but I have yet to hear. Apparently she thinks it will make my anxiety worse. That is possible, but I have not noticed that, and I keep a journal every day – I should have seen the pattern by now. Besides, my brother’s doctor told him he should take Gravol to help him sleep. Who do I believe? Well, I try to avoid it, but when my stomach is really upset, I have found nothing better (and probably 90% of the time when I use it, I have a great sleep!)

And then there is the body aches and pains. Since my doctor, with the x-rays, CT scans, blood tests, and more that he has had done, has not been able to figure out why I am always in such pain (aside from a mild amount of arthritis in my back) I am guessing that, as my therapists says, it is because I have an extremely sensitive/raw central nervous system. Regardless of the cause, I am in pain a lot of the time.

My feet ache often, and always if I have been standing/walking/cleaning for any amount of time. That thanks to the club foot I was born with (both feet.) Above that, I am plagued with back aches, and side pain that get really bad at night. I struggle often with headaches, and (TMI, sorry) I have cramps that get really bad for nearly 2 weeks every month.

I have fears about taking too many medications, or mixing medications, so I try to think of what is the most pressing issue of the evening, and choose my ‘sleeping pill’ based on that.

And then there are the nights where I try to be ‘good’ and not take any medications at all – which causes nights like the last in which I got less than 6 hours of sleep. That might work for some people, but I have been a zombie all day. I can’t think. I can’t function. I barely know what I am doing. I have been sitting for so long that I feel numb. I have been staring at the computer screen for so long that my eyes are stinging. I have spent all day researching. “What?” you might ask – cat litter boxes. 8 hours of my life reading and looking at pictures on line of cat litter boxes. A wonderful use of my time!

So there you have another thing that a lack of sleep causes – fixations which I cannot break.

I think tonight I will choose the medication (likely Gravol, for I feel so sick after not getting enough sleep.) Being ‘good’ isn’t always worth it.

 

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Autism: A Week of Wheat

For about two months I was completely off of gluten, though I continued to eat oats as they didn’t seem to have the same effect on me. The plan was to try wheat again before my summer camping trips so that I would know for sure if this was an issue for me.

But then my dog died, and I knew that time wouldn’t make for an accurate test, for the pain was deep, and my functioning was low. Then we got a new dog, and that time, too, wouldn’t reveal the true effects of wheat on my system. I was very anxious, still in a lot of pain, and still not functioning well.

Knowing it was likely a strong issue for me, I tried for weeks to plan gluten free foods I could eat while on my camping trip – but as I said, my functioning was low. I am not even sure I could have done it when I was well. Food has always been a struggle for me to begin with. There are always multiple things standing in my way:

  1. I cannot prepare meals, and struggle to eat at the best of times, when with other people.
  2. Where we go, there is no running water (we bring water) no electricity for cooking (only solar panels for charging devices), just a couple of propane fridges to store everyone’s food (a few years ago, we didn’t even have that. I am thankful), and a barbecue where meals are prepared (often communal, and since I usually can’t eat what others are eating, I have to make my own, which I can’t do with people around, or on propane stoves.)
  3. I am not only gluten free, but am also very allergic to eggs (a staple camping food, which always scares me), intolerant to dairy, allergic to Kraft dinner (another staple, and even the smell leaves me very nauseous) and don’t eat meat, pasta, or mushrooms. Plus, processed foods very often leave me sick immediately after eating them.
  4. When I am hungry, I am strongly prone to meltdown, and can no longer think. The hungrier I am, the less I can tolerate food, and the lower my functioning is. So to leave me to get through that on my own is a bad, bad, idea – yet that seems to be the natural solution for people. “She’ll eat when she is hungry,” they say. No! I need productive help to get through it, and if I am already hungry, I can say that will be hard. Best not to go there in the first place. And no, I cannot help it or avoid it despite my very best attempts at planning.
  5. I make much of my gluten free/vegan foods from scratch at home, when I am alone. But they don’t store well, defrosting (or even expecting to find freezer space) would be very challenging, and it is likely (being communal meals) that I wouldn’t have the space to cook even if I could cook with other people around (which I can’t.)

Eventually I came to the conclusion that I would have to eat both meat and wheat during my nine days away. Even then I have had issues. Here are the results:

  • day 1 – really bad heartburn, with some extra trouble getting to sleep
  • day 2 – increased fears and controlling tendencies towards what other people were doing with food
  • day 3 – complete meltdown, unable to think/function/eat when others chose beans and wieners for lunch; cried for over an hour, massive headaches all day, bad heartburn, trouble sleeping
  • day 4 – continued controlling tendencies, inability to think clearly, anxiety around food, struggles with emotional stability, fuzzy thinking, full meltdown in bed when everything (hair, clothes, skin, blankets…) severely irritated me – my husband left to sleep in a camper, and I had to drug myself to sleep.

All of these things continued and grew worse as I ate more and more gluten (since it was present at nearly every meal, and often the other foods were even worse for me.)

This is not likely something ‘they’ could test for. I don’t believe I have Celiac disease, and if I didn’t have the language to express this, other people would likely not make the connections. Yet it is a very, very real issue for me.

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Autism: Effects of Gluten

I had hoped it wasn’t so, but I should have seen it long ago. I saw the connection in my children – with very much the same effects as I now accept are true for me. That was about 9 years ago.

Two years prior to that even, I considered that I possibly had a sensitivity to either wheat or dairy, as I felt sick all the time. I eliminated the dairy, found especially with future attempts to eat/drink it that I was indeed intolerant, and left it at that.

Even when I took my children off of wheat and dairy, seeing a strong correlation between those foods and struggles with their sleep and behaviour, I never considered going off of wheat myself. I was already allergic to eggs and Kraft dinner, and intolerant to dairy, plus very picky according to other people’s standards. I didn’t even entertain the thought at that point that wheat could be an issue for me as well.

Until a couple of years ago, that is. I then noticed that the more wheat I ate, the more prone to digestive issues, bloating, and heartburn I was. At the same time, I was reading a lot of information about the gluten free/casein free diet for people with Autism (which I strongly suspected by then, and was later diagnosed with.)

So I knew that I would need to test this at some point, but I also struggled with that against the thought that I have such trouble with food to begin with. Did I really want to make things harder? It is difficult to find a balance between removing things from my life that cause me struggles, and having further struggles caused by that very removal.

I really didn’t want to do this (more, I didn’t want it to be true), but as the noted side effects became stronger, I knew that I had to try. So I went gluten free for a short time – eating mostly corn, oats (which didn’t seem to bother me, or my children) and rice. Suddenly, for the first time in many, many years, I was able to get to sleep without drugs. When I allowed myself even a little wheat, the effects were undeniable:

  • insomnia
  • irritated skin and scalp
  • heartburn
  • bloating
  • heightened anxiety
  • quicker to meltdown
  • struggle regulating emotions
  • stronger sensory issues (and I am already extreme)
  • increased irritation

The thing is, these are the exact effects I saw in my kids (minus the heartburn and bloating, which they wouldn’t have been able to share with me even if they had experienced these) and which, like my dairy intolerance, the doctors were not able to test for or confirm – but were no less true for all of that.

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I am now certain that these foods are not ones I can safely include in my diet. But then we were going camping, and I tried to plan around this, but failed. Trying not to be difficult, I agreed to eat wheat during those 9 days away and Wow!… but that will have to be a post for another day.

 

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Autism: Proper Planning

For three weeks I tried planning so this wouldn’t happen. For months I was thinking about it. I even made a conscious decision that I would not be able to maintain my rather unusual diet during the week I was away – and that I would be okay with that.

To further avoid the chance of this issue, I brought along vegan meal replacement shakes and vegetable juice. That way at least if the meals were not complete, I could manage to avoid… well…

We arrived on Sunday evening, having eaten fast food along the way. Sure, I felt the effects of the wheat I had eaten, but it sure tasted good! I had brought tums and other medications to counteract the pain.

The very next morning, however, the trouble began. The almond milk I needed to mix with the powder for my shake was in the fridge in the camper where someone else was sleeping. Unexpected fail # 1. As I was setting up the bed in the tent, others were putting away the food. Even if everyone was awake, I cannot go into a camper where someone else is staying.

However, that is the only camper with a working fridge, and the other propane fridge in the shed was full. It made sense to them, but has made a difficult issue even harder for me.

So instead of my shake, I thought I would make instant oatmeal. “The kettle on the camp-stove has hot water,” I was told. I struggled to find a bowl and spoon, but they were brought to me. When I poured the water and tried to mix the oatmeal, I found the ‘hot’ water was almost cold. Fail # 2. Despite the current fad of overnight oats, I do not like cold oatmeal. I struggled to eat it, but did not feel well.

Around noon I was feeling so sick I drank nearly a litre of vegetable juice to try to counteract the feeling. That helped, and for lunch I ate sausage and for supper, had black bean burgers (which I had premade and froze) on bread. Then of course I was sick from the wheat. I took 3 Tums, and 2 Gravol before bed. That helped with the stomach issues and heartburn, but not the irritated skin, insomnia, and fuzzied/dull thinking that the wheat caused.

Well, that night it POURED for hours. It was hard to sleep, and in the morning, everything was soaked – and it was still cold and rainy. My almond milk (which my husband took out for me) was slushy from being in the cold fridge, and besides, my shaker cup was on the drying rack out in the rain.

Since the benches were wet, I stood and ate a cold piece of bread toasted on the BBQ (but didn’t stay warm) with cold margarine, cold peanut butter, and sticky honey. (Wheat again!)

Not feeling great, I read in an empty camper for the morning, and came out to find beans and wieners made for lunch. Yuck! “You’ll have to find your own food,” my husband said. Impossible! So despite all of my careful planning, I lost it. I hid at the end of a table, behind a cooler, and couldn’t stop crying for over an hour.

Forget, “if she’s hungry, she’ll eat,” or “she’s an adult, she can deal with it.” When it comes to food? Impossible! I am a young child with an extremely sensitive stomach, and very particular tastes. Without help, and proper food at proper times, I cannot function. I cannot succeed.

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