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!

The Good, The Bad and The Ugly.

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There were definitely repercussions from my trip around the cemetery with my pup. We managed to get back there two more times during the week we had the scooter, but the effects ~ good and bad ~ started as soon as we got home that first day.

The Good:

He is a different dog. Just like that. Even my husband commented on the change. He is not completely back to his normal, carefree, waggy self, but he was immediately happier and calmer. He really just needed to see me happy and out and about to know that things are okay. Over the next few days, he spent hours in the back garden with me, lounging in the sun. He would come close to me, say hello, and then find a shady spot. Every time he got up, I expected him to have reached his limit, had the anxiety kick in, and be headed inside, but he didn’t! He would just move from sun spot to shade like the good old days. For those regular readers, you know this is a big deal. He hasn’t really come outside with me since I accidentally hit him in the eye with a tennis ball. He was already stressed by my illness but that incident put him on a different level of depression. Now, he isn’t lying on the couch, staring at the wall as much. He is more interested in what I am doing. He’s playing little games with me again, like trying to catch my hand when I do “here comes the mousey”. 🙂 He even followed me when I drove the scooter around our garden!

Just like I underestimated the effect my phone screen was having on my sleep and my constipation was having on my overall well being, I had underestimated how blue Bowie’s blueness made me. Since our outing, I have had a woeful week symptom-wise (stay tuned) and my mood hasn’t dipped at all. I haven’t felt happiness, relief and hope like this in as long as I can remember. I have to work as hard as possible to not only get better, but remain positive because we can all bounce back from this. Bowie has shown me that.

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The Bad:

He’s a different dog. I’m not the only one who has deconditioned. He does not gallop anymore. He runs in short bursts, looking stiff and out of breath. It seems as if he has aged 5 years this year.

And then there is my body. I woke up the next day feeling like I had been on a rollercoaster. It was very obviously from the jostling of the scooter. My spine hurt from my tailbone up to my skull, my neck was killing me and my head hurt badly ~ a headache that felt like a direct result of neck strain and my brain hitting the inside of my cranium. The pavement around the cemetery was pretty smooth… I thought. It never occurred to me that my body would be so rattled. I wound up taking Tinazidine to help and you know how bad it has to be for me to take a drug.

The Ugly:

Who knows the exact reason, but, after the walk with my dog and taking Tizanidine, my sleep disappeared. I mean, GONE. I went from 7-9 broken, unrefreshing hours to 2-3 broken hours. Here’s a look at a few of my Zeo sleep graphs:

2:45am to 10:45am

2:45am to 10:45am

3:45am to 10:45am

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11pm to 6:15am

Melatonin, valerian, magnesium, Tylenol did nothing. More Tizanidine did nothing. My usual dose of Unisom (1/4 pill) did nothing. I finally tried Trazodone! Nothing. Panic. I laid low, didn’t expend any energy, waited for the horrific crash… After the first night, I was in very bad shape ~ stiffness, muscle and bone pain, breathing difficulty, dizziness, higher heart rate, flu-ish ~ but, oddly, as the insomnia streak continued, my symptoms didn’t get worse. I was laughing at tv yesterday, thinking, Why don’t I feel worse?? I stopped all supplements and, last night, I took 1/2 a Unisom pill (double dose!) and didn’t wear the cpap. And slept 8 hours. Oh, thank god. I worry about not wearing the cpap and I certainly needed more than 8 hours, but I am very, very grateful this morning.

Last night. An hour straight of deep sleep! Zzzzz…

Title Credit

Oh, Happiness is Happening

After the exhausting week that I visited the Good Doctor and had my traumatic trip to the massage, I emailed my family and close friends and said that I wasn’t going to talk on the phone or skype for a few weeks in order to rest up for and recover from my father’s visit. I cancelled all appointments, also. It wound up being 18 days with no human interaction other than my husband and the 4 days with my father and sister here. After such a long quiet spell, I didn’t feel any better physically, unfortunately, but it was freeing to not have to go to counseling or a doctor or physical therapy… the incessant quest for healing is quite exhausting.

During that time, I put away the heavy ME/CFS books and inhaled David Sedaris’s “When You Are Engulfed in Flames” like it was fresh, mountain air (note to people with ME: he writes in short, easy to digest, hilarious vignettes ~ highly recommended for our brains). I injected some music into my daily rotation of meditations, visualizations, brain wave CDs etc. One day, I listened to every Radiohead album in chronological order (bar the very first and the most recent, neither of which I own).

Those schedule-less days helped me prioritize pleasurable activities (reading) over obligations (appointments), which is a very hard thing to do. After the necessities (getting dressed, brushing teeth, putting on sun creme, preparing food, walking up and down stairs to the toilet, a few emails or bills), there is very limited extra energy and it is hard to put it towards a happy activity when the kitchen is a mess and you’ve no clean clothes. I even see my rest times and meditations as obligations. They can be pleasurable, but who wouldn’t rather be chatting with friends, watching a good film or even blogging? For a long time, I had one phone conversation planned a day, but it was too much. Although talking on the phone is pleasurable, it usually precludes all other activities, so I had to reassess. I want so desperately to be a good friend ~ to have some sort of interaction with people that goes beyond their reading about my illness on the internet ~ and I wonder, if I go dark, will I still be welcome back one day?

During this period of reassessment-of-activities, I read Jackie’s post on LethargicSmiles. She articulated this problem perfectly. Her doctor told her to do something pleasurable every day to aid recovery and healing. Jackie writes, “It feels wrong to ask someone to come do my laundry when I was able to go to a park for awhile that day…” I’m a bit more limited than she is, I think, but it’s even difficult to watch tv while your husband fetches you water, so we all have to work at feeling less guilty and asking for help more.

With this in mind, I took a leap of faith on Monday. All year I’ve pined for the days that I used to take my first-born pup, Bowie, for walks in the cemetery. It was our private, quiet time together. As you all know, he is very sensitive and has been severely affected by my ME. He is depressed and nervous and doesn’t understand why the happy pack that went to the beach and the park all the time is now indoors, stressed, sad, scared and sedentary.

Monday, I was going to skype with my Mother and then my sister was to come over in the evening. When my husband wound up taking the day off and offered to rent a mobility scooter and take us to the cemetery, I hemmed and hawed. No, I have plans tonight… I’m about to talk to my Mum… My heart rate is high today… What if the effort of it makes me worse?… We can’t afford it… And then I thought about doing things that make you happy. This would make me happier than pretty much anything else.

Our smaller dog can’t walk off-leash. If he sees a squirrel, the rest of the world doesn’t exist. He would run across highways and through rivers and over mountains and across deserts to catch a critter. And god forbid I leave him at home feeling abandoned or my husband holds him on a leash while Bowie gets to run free. Luckily, the doggy daycare is adjacent to the cemetery and charges by the quarter hour, with no reservation -and the Little Guy loves it. So, we dropped him off and my husband assembled the scooter and … Bowie and I got to go for a walk for the first time in 11 months.

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Weekly scooter rental: $160
Doggy daycare: $5
“Walking” with my baby: Priceless

Title Credit

Ups and Downs

Today, I am happy. I am feeling hopeful and calm. It was only three weeks ago, when I had my monthly appointment with the Good Doctor, that I was in a very bad place. Physically, on top of the same old baseline hell, I was still in the death-grip of the perma-headache, which, at its worst, is my worst symptom. Also, I hadn’t had any relief for weeks from IBS-C symptoms (and I really underestimated the toll it was taking on my body). My husband and I were having a difficult time ~ he was (is) overworked and I was (am) needing his company since he’s the only one I see day in and out. I told the Good Doctor that I was feeling very low and kept thinking I didn’t want to go on. Not suicidal, exactly ~ I very much want to live; in fact, just last night I said I’d be a vampire in a heartbeat (no pun intended) to achieve immortality ~ but feeling like I couldn’t accept this illness and I wasn’t strong enough to face it every day for the rest of my life. I said I was ready to consider antidepressants.

That night, I slept terribly (more terribly than the usual) and, in the morning, I feared the worse. However, once out of bed, I was smiling for no reason. Just smiling at the new day. I physically felt lighter. I emotionally felt happier. It was an incredibly dramatic change from the day before. My husband and I had a good talk, my insides relaxed (constipation eased up, bloating disappeared), my headache was gone long enough for me to listen to music and laze in the sun. On every level, I felt different. I saw a future, I could imagine happiness within this illness. I stopped taking Chinese herbs to see if they were causing the headache (the results are not conclusive, but it’s definitely improved). I decided to stop going to therapy and, so far, that has been a good decision. The Good Doctor had, in all seriousness, told me that there were some crazy things going on astrologically but they’d be ending soon. She said something about Mercury in retrograde and some other odd star arrangement and told me there had been so many tumultuous occurrences with her friends and patients, that she had looked it up. I’ve given up all my skepticism. What do I know? My menstrual cycle follows the moon, just like the ocean tides. Who’s to say Mercury wasn’t casting a black cloud over my head? Especially after all my concentrated connectedness to celestial energy during meditation. 😉

So, antidepressants are once again on the back burner.

Of course, the ups and downs continue. My period this month was so painful and made me so sick, that I was curled in a ball for days, wondering if I should go back on the birth control pill, wishing I had the nerve to get a hysterectomy, cursing the doctors who won’t test for hormonal abnormalities, tempted to try some hardcore opioids even though I know I have scary reactions to them…

My father came to visit and it was lovely. I was feeling okay, able to chat and play Trivial Pursuit (lying on my side in the recliner). But, on his last night, I had a meltdown. He had been asking whether I could eat Chinese food or Thai ~ just trying to decide what we were doing for dinner. I analyzed the meltdown for a long time. What made me retreat to my room to cry? Here’s what I came up with:

  • I was overdue for a rest and was feeling exhausted and shaky.
  • I had been sitting in the sun and was overheated.
  • Meals are always stressful because my diet is so restricted.
  • I didn’t want anyone to plan dinner around me when I might be too weak/nauseous/worn out to eat.
  • I am guilty that I am such a high-maintenance person now. I want to be able to say, “Yeah, I like everything, I can eat anything. Get whatever sounds good.”
  • The one thing I know for a fact that I react to is MSG and I have been told many times by restaurants that they don’t use MSG only to wake up the next morning blown up like a swollen Stay Puft Marshmallow Woman, unable to bend my fingers or open my eyes. I knew I could probably come up with something I could eat from a Thai or Chinese restaurant, but I’m scared of them. I stick to what I know (one of the blessings of working in restaurants was that I could read every label of every ingredient of every dish on the menu. One of the blessings of being the boss was I knew how clean the kitchens were; I could coach them to be as fastidious as I am about safe temperatures, cross-contamination and allergy info – plus, I could go in the kitchen and make myself food (don’t worry, all you chefs out there, I was very respectful of the line ;))).
  • Finally, and worst of all, in those moments before I burst into tears, while I was trying to come up with something easy to order from a Thai restaurant, I realised I was at that point where THINKING feels like running through quicksand. True brain fog is very difficult to describe. I thought I was experiencing brain fog when I was having lapses in memory and difficulty concentrating, but, just like the total exhaustion I was feeling this time last year was nothing compared to the cellular energetic collapse I experience now, I had no idea how bad “brain fog” could be. You simply can’t think through an issue or problem or question. It is terrifying! What can I order from a restaurant? And then, blank, dense cloudiness. Start again: Food. Thai. Go! I think, Chicken, no sauce…. And then blank again. It’s just too difficult. What’s the question again? It’s like my brain is panting, out of breath. And, I guess, that’s what it is: the brain is not getting enough oxygen.

In the end, my family went out to dinner and left me to rest. They brought me home a delicious steak with a side of coconut rice and, now that I am on the new elimination diet, it will be the last red meat I have until who-knows-when. And that will be the last time I see my Dad until who-knows-when. Maybe, ultimately, that was the real reason for the tears… Knowing I had to say goodbye in a few short hours.