Hounds of Love

[Written September 30th]
When I got sick, I started having horrific nightmares about my dogs. At least once a week every week for the last 3 or 4 years, I have dreamt that they’re in danger and I’m too weak or too sick to help them. Last night I had no voice. For an eternity, with little energy and full of sickness and while wrangling my smaller dog, I filled my lungs and tried with all my might to scream for Bowie, who was gone and in definite peril. Nothing would come out but a croak. I begged the other people in my dream to help, to shout, run, drive–do all the things that I couldn’t do–but nobody would pay attention. That’s always a theme in these nightmares: imminent death, crippling disability and nobody is listening, nobody is helping.

I woke up breathless and moaning, as I often do. This love is so fierce, sometimes I think I would take a bullet for my dogs. I cannot fathom having an actual human child. My heart would explode. Parents out there: to me, you are incomprehensibly brave, strong and selfless. And SICK parents–chronically ill and disabled parents–those of you that may have nightmares about not being able to protect/save/find/help/comfort your children–you live (and dream) through something I can only get a small glimpse of with my dogs. Hats off to you all, courageous warriors. And I hope everyone stays safe.

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Sleep Study

Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.

So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.

Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.

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Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.

My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.

The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?

Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.

So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!

But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. 🙂

Your Possible Pasts

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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libIDo

You know when you look at the side effects of some drug and it says, “loss of libido”? Well, I’ve never paid any attention to that. I am too busy looking for what I really care about: the prevalence of headaches, angioedema and anaphylaxis in clinical trials. It’s like my antihistamine nasal spray: when I researched reviews, an incredible number of people complained and warned of the terrible taste that drips into the back of your throat. Seriously? If it doesn’t give me an embolism or make it difficult to breathe, who cares? I felt the same way about loss of libido. Oh, boohoo, you don’t feel like having sex as much as you used to? I’m taking this drug to help with extreme pain (that has put me in the ER before) and I’m looking for the likelihood of life-threatening allergic reactions (that have put me in the ER before)… Or, I’m taking this drug to try not to succumb to an illness that is ruining my life ~ I just want to be able to get out of bed, do you think I care if I have no libido? Libido ran away with my make-up and high heels long ago.

But, what they don’t tell you is, libido is much more than sex drive. And you don’t know you’ve lost it until it comes back. Or, at least, if you’re battling a chronic illness, libido leaving is masked by everything else leaving, too. I haven’t researched this and maybe I should, but what I’ve experienced the last few months is fascinating. I went off the birth control pill and it was as if someone flicked a switch in my brain. There was something new, which mostly showed up in my dreams, but left a little thread of energy throughout the day, too. It was definitely sexually charged, but, more importantly, it was… vibrantly charged. I’m struggling to put this into words. Something inside me changed so abruptly that there is no doubt in my mind it was from going off the pill. It was primal… but not necessarily lustful. It was vital. It was a desire to feel desire and feel desirable. Not necessarily sexual desire, but a sort of deep, inborn yearning to be needed and wanted, to be likeable. And vice versa: a hunger to need, to want, to like… It was the drive to socialise, to interact, to have intimacy. But, not necessarily sexual intimacy ~ human intimacy. I woke up the other day, still lying in the residue of a dream in which I had been talking, laughing and flirting in some bar with some group of people. I lay there with my eyes closed, relishing that feeling: the joy, confidence, energy… the urgency and excitement of conversations with smart, funny people that you don’t want to end. I felt totally enlivened ~ a memory of my younger, fearless, drinking days that were filled with long, late-night sessions, interesting people, eye contact… when I wasn’t watching the clock, wondering when I could go home. Or, worse, like now when, even if I could go somewhere social ~ even if my energy would surge for one night and allow me to leave my home and enjoy noise, lights and human interaction ~ I wouldn’t want to be seen. I wouldn’t want anyone to see my grey pallor and sunken eyes and lackluster hair that I cut lopsidedly a few months ago when it was getting in the way of my cpap mask.

If I were still healthy or young or a drinker or even still had a job that allowed me to socialise, this might not have blindsided me with its strength and shaken me with its importance. I woke up from those dreams thinking, THIS is what we live for. THIS is why I have to get better. I will have that feeling again, dammit! I am not meant to be housebound, silent, still and scared. It’s not in my DNA. I want to feel attractive and full of life. I am hardwired to be social. My idea of heaven is talking, singing, eating and laughing with those I love.. or interesting strangers. I need to get back there.

When you are sick, sex is the last thing on your mind… But a warning to those of you who are just going through the motions and are fighting each day to find some sort of quality of life: loss of libido may actually mean loss of drive… desire… loss of fire and electricity… You may just need that low vibration to remind you why you are fighting.

Addendum: Well, well, well, in addition to sexual desire, the dictionary says libido is: “The psychic and emotional energy associated with instinctual biological drives. All of the instinctual energies and desires that are derived from the id.” And id is defined as: “the part of the psyche, residing in the unconscious, that is the source of instinctive impulses that seek satisfaction in accordance with the pleasure principle.” Freud was one smart dude. I wonder if he took the birth control pill continuously for nine months, too.