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.







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

Title Credit


Girl, Interrupted

Last Sunday, my husband woke up, gave both dogs baths, hoovered the downstairs of the house, tidied the kitchen, emptied the dishwasher, took the dogs to the park, went to the grocery store, came home and hoovered the upstairs of the house, emptied all the garbage bins, put the cover on the duvet and made the bed look nice and inviting, washed and replaced the unwieldy dog bed covers, scooped the dog poop in the yard, cooked dinner and also cooked soup for me to eat for lunch the next day, took out the rubbish and recycling, loaded the dishwasher and I’m sure there are many things I didn’t notice him do… I washed my cpap parts, soaked in an epsom salt bath for 15 minutes and did a few minutes of gentle stretches. That was the extent of my activity. Other than that, I sat or lay in different rooms of the house.

I spend an inordinate amount of time lying down in dark rooms. Meditating, resting, sleeping, trying to sleep, reading, thinking, crying. Somewhere along the line, I lost the ability to walk laps around my house, so I haven’t been outside in weeks ~ except to walk to the car for doctors’ appointments. I long to be outside. I want to breathe in great gasps of cool outdoor air. I want to feel my heart pumping and my muscles contracting. I want to see my dogs run and be able to dance along with them and not be crippled physically or crippled by the fear of movement. I imagine my brain functions like any other negative reinforcement situation. If you are bit badly by a dog, you may avoid dogs and be seized by fear when you see one. When I move a lot, talk a lot, cry a lot, react to a pill I take or don’t sleep well, I am overcome with foreboding about the backwards tumble that lies ahead. It extends to smaller things, too. I forgot my sunglasses yesterday for the drive to the doctor and I wondered if the light would take its toll on me, not only in the moment, but today. I had to move quickly to catch the phone when my Mother called the other day and I became annoyed that I hadn’t stopped myself… and then became afraid that the 3 seconds of faster movement and the 3 minutes of annoyance would worsen my symptoms. I’m trying to do less so I don’t continue to slip backwards, but not do less so I don’t decondition anymore in my body and mind. It’s a hard line to walk.

Last month, we were watching The Walking Dead (spoiler alert: if you are watching but aren’t caught up). There is a scene where the father runs across a large field carrying his dying son who is a not-so-small 9 or 10 year-old. I can’t stop thinking about that scene. Not because the kid got shot – (spoiler alert) I knew he’d survive – but because sometimes we will have to exert energy. There WILL be trauma in our lives and, somehow, we will have to weather it. I watched that scene, thinking, I would give anything in the world to know that I could run flat-out across a field, carrying a child and that I would be okay. That I wouldn’t then be confined to my bed for the next decade. I would give anything to know that I could handle an emergency and emotional upheaval without regressing into worse shape for who knows how long. At the bare minimum, I would give anything to simply be able to run across a field, minus the bleeding child and the chasing zombies.

Yesterday I was watching The Bachelor (spoiler alert: in case you thought I was remotely cool) and the contestants were canoeing and riding horses. This was rough to watch. In my youth, I used to do both of these activities a lot. I loved them and felt confident in my skills (at least with canoeing. I made a number of trips through the Boundary Waters in Northern Minnesota, isolated, carrying food bags, portaging from lake to lake. E and I took a trip together when we were, what? 16? That was ballsy. I don’t know if I would let my child disappear into the wilderness and hope that she and her friend would appear on a different lake a week later. But it was amazing and, now more than ever, I am so grateful for those memories). I watched those Bachelor contestants sit passively on top of the dozy, plodding ponies and then paddle over and over again into the shrubbery on either side of the river and I wanted to scream, AAaahhh! Give me that fucking paddle! Let me sit in the back of the canoe and steer for the next 5 hours, loving the ache in my shoulder, the strength of my biceps, the pull in my triceps… the sound of the canoe cutting through water and peace of surrounding nature. Let me sit on that horse! I can smell his coat and the saddle leather. I can feel the power beneath me and I just want to tap him with my heels and hold myself up with strong thighs and reliable calves, lean forward with no back pain and gallop. Or, at least, canter. The best feeling.

horse riding

Television and books ~ even watching my husband doing chores ~ are constant reminders of the things I can’t do and cause an endless roller coaster of emotions. Desire, jealousy, despair… and then gratitude for what I still have. I got up today after another bad night with no sleep and texted my friends that I felt like a walking corpse. The Walking Dead. But I don’t really walk much. And, I’m not dead, dammit. So, maybe my life right now is a bit Requiem For A Dream or Vertigo or Groundhog Day… But, maybe one day it’ll be Run Lola Run or Dances With Wolves… Or, simply, wonderfully Staying Alive.

oregon coast