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Autism: Smoke and Panic

The last couple of logs that I put into the fire in the morning didn’t burn well. While I was making supper, I kept smelling smoke. Finally I figured out that it was from the logs (our fireplace doesn’t tend to smoke, so this was highly unusual.) So I moved the logs around, but the upstairs was still all smoky.

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My husband looked into the fireplace when he got home, but didn’t see anything wrong.

I guess the bigger challenge was that I had only just realized that our wired in smoke alarms weren’t working (I wonder how long ago that started!) We didn’t even have backup battery operated ones that worked, so my anxiety was very high.

After all, I have known a few people whose houses have burnt down. My grandmother was one of them, and though the people were all out of the house at the time, she lost all 5 of her cats in the fire, and burned her hand when she tried to open the door to get them out (she was just arriving home when she saw the fire.)

If my animals died in a fire, it would be a trauma I would not overcome. It would hurt me for the rest of my life. This I know.

Well, the smoke filled the upstairs enough that it aggravated my throat through the night. That, mixed with my panic about the smoke alarms, set me into a panic that made it very difficult to get to sleep.

It was about 1am before I slept, and has been happening for about 2 months now, I woke up at 3:45 am unable to get back to sleep.

Though I am sleeping little, doing little, and functioning very slow, the days are flying by.

I feel detached from the world, and disoriented from the speed – like the roundabouts they used to have in the playgrounds when I was a kid (before they regulated the speed they were able to spin.) I feel like I am watching the world spin and waiting for my opportunity to jump on – but it is too fast, and I get dizzy just watching it.

 

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Autism: Early Wake Up Call

It was 6am when I heard the door to his room open. He walked down the hallway and started doing things in the kitchen: Opening and closing cupboard doors. Using the microwave. Opening the back door for the cat. Walking around. Doing things.

I tried to get back to sleep, but he was so loud.

Okay – I admit now that he wasn’t any louder than he usually is, and he is usually a pretty quiet person, but… when I am supposed to be sleeping? Everything is loud. It was loud to me, though he might not have thought so.

Anyway, once I am woken up, it is rare for me to get back to sleep. Only if there was silence – but he had things to do. Only if there was time – but it was only an hour until my girls got up, and the time went fast while I was waiting for him to stop moving.

Molly even protested when I said I was going to get up. “Too early, Mom,” she seemed to say as her eyes – heavy with sleep – closed once more.

Too early. I agree.

But I couldn’t get back to sleep, and that meant a hard day ahead.

I tried to see it from his perspective – he had somewhere he had to go before work, and so had to leave early, and so had to get ready early – but I needed that sleep.

He had to work all day – just like he did the night we picked my mom up at the airport and didn’t get home until nearly 1am (I was really tired that day, too.)

I didn’t have to work. But it still made me sick all day.

It was only one hour less of sleep, and sometimes that happens just because my medications don’t work some nights, and without them I have insomnia. It isn’t unusual for me to struggle with sleep.

Yet every time I struggle with sleep, I have a bad day the next day. It leaves me nauseous, and uncomfortable, and head-achy, and even all my muscles ache from the lack of sleep. I can’t think well. I can’t function well. I can’t even visit well (“Sorry mom!”)

I know he didn’t mean to wake me up. He probably didn’t even know he did (he rarely seems to notice that he woke me up – mostly, I assume, because once I do wake up it takes me another 30 minutes to an hour to actually get out of bed.

I also know that I often struggle with this on my own.

But it affects me so much – why doesn’t it seem to affect other people the same? I mean, sure it “catches up with them,” but with 6 hours of sleep in a night (it takes me two hours to settle in bed, reading and such, and another two to get to sleep – so it is unreasonable for me to try to get to sleep before midnight to avoid this problem) I can’t even function the next day. I am pretty sure most people don’t have that.

Since it causes such struggle, and I have enough bad days on my own, I really need to not be woken up. I have no idea how to solve that issue except to pray he sleeps longer than I do (which is unlikely, since it takes him 5 minutes to get to sleep, I can’t even start to go to sleep before him, and he doesn’t seem to need as much sleep as me.)

What to do.

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Autism: Separate Bedrooms

Yesterday I moved back into my own room. It may have seemed like an unexpected decision to my husband, but it has been a long time coming. You see, I don’t sleep well in the room with him there. It isn’t him, and it doesn’t reflect how our marriage is going (as it might seem from an outside view.) It is just that I have so many sensory issues that it is hard enough to sleep alone, let alone with another person.

The breaking point, however, was about him – and wasn’t his fault.

In the night, the older of my two dogs made a noise that made me think someone was struggling to breathe. It is ‘lucky’ she did for my husband had turned over in his sleep and pinned the younger of my dogs under the blanket between himself and the body pillow they have claimed as their own. I felt under and she didn’t move. I pulled her out, and her body was floppy.

I thought I had lost her; that my husband had ‘killed’ her (which really would have caused issues in our marriage.) It took nearly a minute, rubbing her head and calling her name, before she finally lifted her head and started moving. I put her back on the pillow to sleep, and tried to sleep myself. Needless to say, I was very tired in the morning.

There seems to have been no real harm done, and I know that my husband didn’t mean to do it – he just isn’t aware of what is happening when he is sleeping, and that makes sleeping with small dogs quite dangerous.

For the morning after, though it was ‘cleaning day,’ I spent most of my time unable to think or function, and fixated on the computer. At a comment for my son (that he was spending his time trying to write down everything he could remember about his cat, who died a couple of days ago) I spent a long time going through old emails, and copying any comment that had been made about his cat over the years since that account was opened.

After lunch, as I was changing sheets on ‘our’ bed, I decided that I needed to move back into the ‘pink room’. Clara survived last night, but next time she might not be so lucky. It wasn’t a sudden decision, as it might seem. I have been considering it for a long while due to my sleep issues, and the bad back pain I get as a result of sleeping in a narrow space (with my husband, and my dogs, there wasn’t much space for me. If I can’t stretch out when I am sleeping, I get really bad pain in my lower back on both sides, which I struggle with through the day.)

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I didn’t do it before because I am up so often during the night for the bathroom, and wanted to keep the en-suite I was actually hoping that my husband would choose to go, since most nights he would get up at some point and move to another bed (so as not to have to put on his CPAP mask for sleep apnea again – without which, he snores really bad, which wakes me up.)

Since he kept moving to other beds, or onto the couch in the night, if I was having troubles sleeping, I had nowhere to go. (I can’t crawl in to a bed with ‘dirty’ sheets – even if it is my husband who has used them – even though I can go onto my side of our shared bed without changing the sheets each night.)

There wasn’t even consistency to it. Some nights he was gone by 1am (in which case I could stretch out, and not have so many back issues) where other nights, like last, he would stay until 6:30am – and I would wish through the night, as my pain got worse, that he would leave.

The fact is, sleeping in the same bed is not good for our marriage. I only moved back in with him the summer after I was diagnosed with Autism because I thought it would be good – besides, I was on heavy (okay, only 1/4 of the lowest dose – but they worked great!… until they didn’t) tranquilizers. They only worked for a couple of months however before they stopped putting me to sleep even at higher doses, and started giving me bad side effects. Nothing else the doctor prescribed worked as well, and I have been struggling there ever since.

I actually like the ‘pink room’ more than the Master bedroom, which hasn’t been repainted since we moved in thirteen years ago – but I kind of need the en-suite as I get up so often through the night (and especially since I hate sharing a bathroom, and liked the privacy of that one. When we have guests it is even more of an issue.)

In the end, however, as I woke from a narrow escape and to a very sore back, there was no real choice. My need for a bathroom was not worth the danger to my dogs, and I had to go. (Having the dogs move was not an option, for I sleep better with them, and without people – besides, it wouldn’t have solved the issue with my back, or my sensory issues from sleeping with another person.)

Yet, though it may seem that having separate bedrooms is a bad sign (or something) for a marriage, my moving to another room was not about our marriage at all.

 

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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: Driven By Compulsion

This morning I have such a strong desire to research floor plans for houses (for no reason other than it is an obsession of mine) that even coming to write my blog is extremely difficult. Yet I am two posts behind – for my posts that are scheduled three weeks in advance in order to reduce my anxiety – and I must write. For every word, however, I ache to pull out a pad of paper to draw, or to open up my internet browser and search.

My sleep has been broken lately, and that really doesn’t help with my functioning level. It is my own fault, really, for I will continue to eat the gluten that causes it. It is just too hard to change the foods I eat long-term, for the change always leaves me feeling sick.

It also doesn’t help that everything keeps me awake: my husband snoring, my cat purring, wrinkles in the sheets, not enough room to stretch out (which causes me pretty bad back pain every night), static… my house is so dry right now that every time I move at night I see flashes of light like fireflies flying off of me in all directions. I worry sometimes that the sparks will start a fire!

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It isn’t only at night, either. During the day, my dogs come to give me kisses, and get shocks instead. The zapping loudly breaks the silence. I am not sure what to do about it. I do use fabric softener in my laundry – but then I like wearing fleece, and fleece on fleece seems to increase the static.

I am tired. I am not thinking well. I am not functioning well. My nose is irritated, and often bleeding from the dryness in my house… I suppose I could get a humidifier, but they scare me. Once, when my son was about 6 weeks old, we got a bad cold. I put on a humidifier (as the baby books suggested) and my cold dropped to my lungs so I could hardly breathe. I thought I was going to die – I really did. Ever since, the very idea of using humidifiers has caused me strong fear.

When things are going like this for me, it is my fixations that drive me. When my functioning is low, all I can do is give in to my obsessions and compulsions. For this week that means playing Sims 2 Pets on the PC, watching ‘Angel’ on Netflix, and drawing and searching for house plans. Not at all productive, but I haven’t the strength or energy to fight it.

Besides, I have spent several hours cleaning this week. I did visit with a friend, and talked on the phone to my mom. I have taken care of my dogs, visited with my cats and son, and made supper when it was my night to do it. I might be spending nearly all of my time right now on my fixations – and that isn’t great – but I also need to remember all of those times when I did overcome the compulsion, and took care of all of those things that really needed to be done.

So rather than focus on where I was stuck this week, I think I should really be thankful for where I succeeded… I wonder if that might be a better way to respond to all people – after all, every one of us struggles with something.

 
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Posted by on January 25, 2017 in Poetry: My Creative Outlet

 

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Autism: Things That Keep Me Awake At Night

Last night, it took me many hours to get to sleep. For one thing, I was stuck on the verse: “God makes all things come together for good…” and was arguing it out in my head. Several people at life group brought up stories of tragedy last night, and this verse was mentioned by a couple of people. Not that I don’t believe it, but more that I feel it is dangerous to leave it there. There is more to it, and so many people take it to believe things will come together for better after some serious tragedy. Yet for a lot of people, things don’t get better after that. They live in pain, and question God, and…

When my children were taken, I was brought this verse over and over again – and I kept thinking, “It doesn’t mean it will be better for me.” What about the Jewish and Christian people killed in the Holocaust? What about the Jewish people who were in slavery for something like 400 years in Egypt before God showed up? What about… and I thought of a whole lot of situations where all for good didn’t seem so great individually.

There are a lot of people suffering in the world, and for many of them, things aren’t likely to get much better.

So I thought that the way people use this verse is dangerous, because for those whose lives don’t improve after such bad things, it could lead them to become bitter with God. “God makes all things come together for good for those who love God and are called according to his purpose.” Okay, so does that mean if things don’t improve, it means our love for God isn’t genuine?

I don’t believe it.

“God makes all things come together for good for those who love God and are called according to his purposes.” I thought of this over and over, and asked: “What is it that those who love God and are called according to his purposes want?” In other words, what is it that we, as Christians, are supposed to want our lives, and our actions to do?

The answer: Bring glory to God.

So if the verse read: “God makes all things work together for his glory,” well then even the tragedy would be worth it for those who love God and are called according to his purpose.

This post wasn’t meant to be about this thought at all. Sometimes things write themselves, and that is okay. The things that keep me awake at night!

The other thing that kept me awake last night was my cat.

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Ditch is an extremely affectionate, funny, into everything type of cat. He is my buddy, and when my dog died, he never left my side for two weeks. Even before that, he spent a lot of time lying against me, purring, and kneading. My Gryff was an independent dog, who didn’t mind sharing me with the others. Clara, on the other hand, has pretty much attached herself to my side, and doesn’t like anyone else getting “mommy time,” so Ditch takes his where he can get it, often when she is buried under the blankets, sleeping.

Last night that meant making his way onto my pillow where he spent hours purring, kneading, and licking my forehead. Not exactly conductive to sleep, and he is not one to be deterred. I’d push him away, and he would slap my hand away, or bite it (lightly, but enough to let me know he was annoyed.) Feeling bad that he hadn’t had so much attention from me in a while, I turned over (which stopped the licking) and allowed him to keep kneading.

Every once in a while, I would try to move him away so I could get to sleep, and he would bite, or slap, and keep going. Finally about 2am, I picked him up, and put him out of the bed. I felt bad, but after that I was able to slow my thoughts down and get to sleep.

Four hours of thoughts and purrs, bites, and kneading, with my husband sleeping soundly beside me – and he wonders why I have so much trouble getting up in the morning.

 

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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: Insomnia

It used to be that I had trouble getting to sleep, but once I was asleep, I was good until morning. It isn’t that I slept right through, but would fall asleep in seconds for any time I did wake up. For that reason, I had a real hard time with getting up at 5:30am for my morning shifts, or being woken up in the mornings by my husband (or children.)

If I don’t get 8-9 hours of sleep every night, I suffer for it. I was never the type who could stay up to all hours, and then function well during the next day. Even one night with less than perfect sleep causes me a lot of trouble, and that builds each night.

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My son says, “that isn’t how things work,” when I tell him I am behind so many hours of sleep. Like the one week I spent in Vancouver for assessments with my youngest ‘daughter.’ She had been sick that year, and I was traveling to Vancouver a lot. I felt bad for them, especially the middle two with their severe attachment issues, and so I brought them all along.

However, staying in one room at the Easter Seal House was probably not the best thought out plan. I am a light sleeper, and two of my kids didn’t sleep. For the entire week. I could hardly function, and by the end of the week was about 20 hours behind on sleep.

My son would say just one good sleep would make up for that – but not for me! No, I needed the full 20 hours, on top of my regular sleep, which was very hard to do. I think I ended up napping with the children, and going to bed at the same time as them. Thankfully, the three youngest still napped, and had early bedtimes. Still I ended up missing a scheduled appointment the week we came back, and I never miss appointments. I was just too tired.

Even now, when I haven’t children to wake me up, and my husband has learned not to, I still struggle with insomnia that causes me a lot of issues with my functioning ability. I do not do well tired. I never have.

Although medications do cause me side effects, I got about as sick from not sleeping as I did from the medications, and would rather be able to think. So I took the pills. Because I struggle with headaches, stomach issues, and allergies, my go to pills for self-medicating were ibuprofen, Gravol, and Benedryl. Most of the time they helped with both issues (I wouldn’t take them all at once, or combine more than two, but would take whatever I felt I needed most.) Sometimes they backfired.

Then, when I mentioned my insomnia issues to my Psychiatrist, she put me on sedatives in combination with the anti-depressants. She absolutely did not want me on the Gravol (for whatever reason, and discouraged the others as well.) For the first time in my life I think, I fell asleep most nights within 5 minutes, and almost nothing could wake me up. It was great! Until they stopped working that is. When the medication was increased, the side effects became too bad, and still they didn’t work.

Now, as I have just about weaned myself off of my medications, I am once more having a lot of trouble sleeping. Only now, instead of just having trouble getting to sleep, I also frequently have trouble not being able to get back to sleep, which was never an issue before. Most nights I am getting 5-7 hours of broken sleep, and there are far too many nights like last in which I am lucky if I managed 3 hours all together.

I am tired. So tired. And the ibuprofen, Gravol, and Benedryl? Hardly work anymore. I suppose insomnia is a common problem for those of us with Autism, but I also happen to be one of the unfortunate ones who really needs that sleep. I hope a solution can be found soon.

 

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Autism: Anchors to Help Me Sleep

It used to happen a lot – a lot meaning 3 to 4 nights on a regular week. Thankfully the medication my psychiatrist has prescribed for my severe anxiety also has strong sedative qualities. That is why she chose these ones for me.

When I get into bed, I am tired. There is no question that I need the sleep, or even that I want it – but I lie there, awake, and the sleep will not come.

Sometimes it is because of the thoughts… those never ending thoughts, that I should have been able to work through during my waking hours. Of ten the thoughts are there. Often I can’t get them to stop. But that is not the whole reason for my lack of sleep.

I lie in my bed, and my body feels like it is floating. Not quite present in the space I should be occupying. I suppose this might be an issue for astronauts flying in their spaceship. Maybe for them this sensation would be explainable. But I am not in space. I am tied to this world, to this body, just like everyone else – only it doesn’t feel that way.

In the last few months, I have been using my weighted blanket for this reason, and it helps… a lot. It anchors me to my bed, and allows me to feel secure enough to sleep. But even this blanket – which I love – has its drawbacks.

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The main one being that I sleep on my stomach. I have only been able to sleep this way since I had my first bad episode with my back in the summer of 2004. This makes it very hard to pull my 15 lbs blanket into the correct position for it to work well.

If it is too low on my back, it really aggravates my skin, and that keeps me awake. If it is too high up on my neck, it makes my neck sore, and gives me a headache. If it is too low on my shoulders, I still feel like I am floating, and can’t sleep. If I struggle for too long to get my blanket into the perfect position, my muscles ache for the rest of the night.

Some nights it seems I can’t win, and last night was one of those. Much of the night was spent feeling like I would float away, and the rest with my skin irritated, and achy from my fight to try to anchor myself.

Restless nights lead to unproductive days, and today has been no exception. For the weekend, while my husband was home, I had all of these goals and desires for things I would accomplish this week. Most days I can’t work while he is here – while anyone is around me, really – and so I was really looking forward to today when I could start working. But it didn’t happen.

There must be a good solution to this issue of mine. Maybe someday I will find it.

 
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Posted by on October 1, 2015 in Autism: Reality

 

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