Skype | Rag and Bone Shop of the Heart

This morning, I’m without internet for perhaps the first time since being housebound and I’m embarrassingly out-of-sorts. I’m online doing something pretty much all day. Whether it’s reading articles, talking with people on WhatsApp, ordering things I need, paying bills, connecting with the outside world on Facebook, streaming shows to our TV, podcasts, music– it all requires an internet connection. My calendar is online, my to-do lists are online, my newspapers are online, I have commitments with a neighbourhood group and we communicate solely via FB Messenger, Skype is down and I don’t have international calling on my phone… It even took me a while to figure out how to type this because I don’t have a laptop with Word and I usually just open an email to write blog posts.

I realise this is a privileged problem–I’m not complaining about the internet being down, I’m complaining about how dependent on it I have become, how empty my daily routine is without the World Wide Web. But empty is an ugly word–how open and full of possibilities my day is without my crutch. And just how incredibly grateful I am for that crutch. If I were too sick to look at a screen or be near wi-fi, or if I had gotten sick years before I did, this would have been a far more harrowing and isolated experience. The internet has told me what doctors couldn’t, my symptoms are less scary and things are put in perspective, I’ve made wonderful new friends, stayed connected with some old friends and traveled the world with them through photos online. But today I might do exactly what I longed to do when I was a workaholic — laze at home and read a book. Pity I already feel antsy and am losing focus one page in. My brain needs some serious retraining.

Title Credit (when I was trying to decide what to call this short post, I realised it would be an excellent opportunity to share Ren’s new song, featuring his girlfriend. He is someone I know online who suffers with M.E. and Lyme disease. He is also an incredible musician. This song brought tears to my eyes (of course, it’s not about the silly interent, it is about the much more important crutches in our lives–our loved ones).)

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.