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mmm... a cuppa...

mmm… a cuppa…

It’s 7am on a Sunday and, in a fit of irked defiance, I made myself a cup of fully caffeinated Barry’s tea with milk — real, whole, pasteurized cow milk — and sugar. I’m shaking like a leaf now and don’t know if the sudden addition of dairy to my diet will have any effect, but, oh, make no mistake, there is nothing in the world like a proper cup of tea and I needed that comfort.

I went to sleep last night at 12:30am and awoke at 4:30am with my heart pounding from a stressful dream and I never went back to sleep. This isn’t uncommon — one of the sleep issues I’ve had since being ill is waking up at the end of every REM cycle. My sleep doctor couldn’t find any reason for it (apnea events, restless leg etc.) and it means that I remember multiple dreams every night. Unfortunately, they are all too often nightmares — tortured events that almost always revolve around my illness: I am being chased by murderers, but I am too sick to get away. My dogs are in peril and I’m too weak to save them. I’m homeless and being accosted by faceless strangers on the street and I have no energy to fight and no voice to argue. No voice is a recurring theme — the inability to yell for help, the inability to defend myself.

This morning, the breathless, heart-pounding awakening was caused by a dream about a friend who accused me of something I didn’t do 17 years ago. I won’t get into details because it is buried just enough to not engulf me in a tsunami of emotion and, when I finally deal with it, it will have to be parsed out in careful digestible bits, probably with my therapist. But, I think it is time to confront it. She was a friend I loved very much and with whom I had years of history. She is actually one of my facebook contacts because I don’t like letting anyone go, but my stomach turns every time I see her interacting with my old circle of friends, a combination of bitterness, jealously, embarrassment and mourning for the loss of that closeness and confidence in childhood loyalty. The situation actually changed the course of my life because, in the wake of it, I postponed a move back to Ireland and wound up meeting my husband soon thereafter.

Although I never believed it before, it occurred to me recently that maybe all this dealing with the past bullshit has some merit. In 2012, my counselor at the time tried to broach the subject of anger or hurt that I might be harbouring from my past and I shut it down. Emotionally, I felt fine until this horrific illness and all I’ve needed and wanted was help dealing with the abrupt loss of life as I knew it. Who cares about my parents’ divorce when I’m trying not to die every day and I want to die every night? But I’ve come through the acute stage of ME and have accepted where I am. My fear is justifiably about the future and the present feels pretty… matte. But the damn past has started gurgling up in my dreams. Last week I drempt that my old boss instructed me to open a bunch of restaurants in quick succession and I was too sick and ineffectual to do it. I woke up in a cold sweat of anxious panic and blunt anger at a job that always asked too much. There are demons in there.

So, today I’m starting with an email — or at least the contemplation of an email — to my old friend. Maybe I don’t need to go into the extended rant that always surfaces during those half-awake moments when I start to compose the letter. Maybe I just need to find my voice and say, for the record, I didn’t do it.

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I forgot to mention the nightmares!

I forgot to mention in my last post that, the night I took the larger dose of Tizanidine, I woke up sitting naked on the kitchen floor, panting and wild-eyed in terror with no idea what was going on. My husband and dogs were standing around me wondering if I was okay. I had pulled off my Zeo headband and my cpap mask and still had the tape on my mouth (that I use to stop the cpap air from escaping). I have been sleeping in our basement room and I had managed to get out of bed, open the bedroom door, go up the stairs, open the basement door and make it to the kitchen before I woke up. I know I had a horrific nightmare ~ demons whispering in my ears etc. ~ but it has been a long time since I walked that far while still asleep (I used to do it quite a bit as a kid). The experience kind of turned me off Tizanidine. Melatonin also exacerbates my nightmares, but I still take it. I’ve taken 1/2 of a Unisom (12.5mg) the last 2 nights and slept much better, but today I am very, very groggy, so I’m going try Trazodone again. Keep your fingers crossed for me!

Sunshine on my shoulders makes me happy

It’s like I flew to the Caribbean over night. I just sat in the sun for an hour, wearing only a tank top and shorts. I had to come inside in case I was in jeopardy of getting a sunburn. Sunburn?! A few days ago, it was snowing! And it is only meant to get hotter through the weekend. It definitely lifts my spirits. Although, you know how odd it is when you have a cold during the summer? That’s how I feel. I took my bad turn for the worse at the end of last summer, so it feels all wrong to be sick in the heat. Intense spring sun is meant to energize and bring a low hum of excitement and vibrancy. Instead, my head is full of cotton balls, my body is swollen, throat is scratchy and my muscles are extremely stiff. But, it’s warm out… focus on the positive!

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And, speaking of positive moments, I thought I should let you all know that I felt good yesterday. Yesiree, I said GOOD. I drove myself to an appointment that was only about ten minutes from my house. I stopped at a store and got lunch from the deli (this is the first time I have walked into any building but a clinic or hospital in months). I walked around the garden with my dogs. I stayed awake until 11pm and actually felt okay after 6pm ~ able to watch a movie, able to laugh.

There always has to be an unfortunately and, unfortunately, my night was quite tortured. I stopped wearing the cpap about a week ago as an experiment. My allergies flared up and I was too stuffy and inflamed in my sinuses to use the nasal masks (the alternative is a full-face mask, but mine is extremely bulky and wakes me up as I thrash around). My brain during sleep fascinates me. I would love to see an fMRI of the whole night. I would love to do a sleep study in my own bed and really see what happens from minute to minute. My brain is on fire. It is infected by unease. In the brief moments of waking ~ like surfacing periodically from quicksand ~ before the incubus’s long fingers push me down into unconsciousness again, I feel somehow crazed, like the mental version of wild-eyed. I am tensed against the cold or curled on the edge of the mattress, trying to avoid the heat. I am clawing my way out of nightmares that are always about running from whatever is trying to kill me or desperately needing a rescue, with no hope of help.

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If I had to objectively interpret what is going on beyond the obvious fear/loss of control dreaming, I would say perhaps I do need a prescription remedy to calm whatever chemicals are misfiring or maybe I am low on some neurotransmitters and, just like I take thyroid hormones everyday, I should be taking something to regulate brain chemicals… But that’s just it: they’re BRAIN chemicals. That’s scary. And it’s such a crap shoot. What Rx to choose?

So, I am at peace with my current stubborn obstinacy to sleep meds and maybe, if I ever take that step, I will wish that I had done it sooner, but I refuse to regret my choices.

As if to reinforce my thoughts, when I called the closest hearing aid store to inquire about custom-fitted earplugs, the lady that answered the phone told me she had taken half an Ambien and wound up in an ambulance to the ER, with doctors thinking she had had a stroke.

Anyway, I don’t know what the no-cpap experiment shows. I feel like I’m sleeping a little better and I think my Zeo graphs show slightly better sleep cycles, but I feel worse when I wake up and during the day. More tired and stiff and groggy and beaten up. Maybe it’s just allergies. My husband is watching tv with tissues shoved up his nose, so I know it’s definitely in the air.