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
Rag and Bone Shop of the Heart 
Yayy!! You’ve given me some additional inspiration to follow my new rules. I loved how you explained that fun things can be stressors too. Of course we want to talk to our family… but that takes spoons and planning. I also love your husband suggested renting the scooter. He sounds like a keeper!
We have to learn a whole new way of living life and change our mindset… It’s no easy task for anyone, let alone us sickies. Last summer, after 4.5 years of slowly becoming more and more ill, and a week long hospitalization, I hit my POTS rock bottom and my idea of an outing was getting out of my bed for more than half an hour at a time. I adopted all sorts of lifestyle changes and now can get out every other day or so. It is so wonderful when we work hard to make a change and it pays off! I’m hoping this whole “fun” change is one of them. 🙂
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P.S. Cute dress!
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Thanks! I said the same thing when I saw the pictures of your long, stripey dress on your blog! It is the most comfortable thing I own ~ Forever 21 $10. 🙂
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Thank you so much, Jackie. One of the hardest casualties of this illness is the loss of fun things. Or how fun things change. I’ve stopped longing to go see live music or a movie and now wish to have the energy for a quiet phone call with a friend or a cuddle with my pups!
I am so happy that your changes are paying off. That’s all I want for all of us. I’m guessing you weren’t blogging during your “rock bottom” days. I know it was harrowing ~ did you ever write about it? I didn’t realise you had been hospitalised. I am truly so sorry you went through that and very grateful that you are writing now.
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It agree it is interesting by how what I consider fun has changed. Just becoming a stepmama has really changed that. I didn’t write about my rock bottom days, but maybe I should. 🙂 I started blogging about a month after my weekly trips to the hospital finally stopped.There were times where I slept 20 hours a day and only weighed 115 (I am 5 foot 6). It was crazy.
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God, that sounds horrific. I am so sorry you went through that, although I cannot believe how far you’ve come. I would be interested to hear about those times in your life, but I know how much energy it takes to revisit the past instead of focusing on future progress.
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i love the photos, especially the 2nd one. xoxoxoxo
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Thanks, Anna! I was trying to steer and snap pics at the same time ~ it wasn’t until I got home that I saw the beautiful tree and the sun rays and the three birds in the other one. Accidental photographer. 🙂
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Lovely photos! I love the last one, what a beautiful dog! So pleased you were able to have a walk with him
Hayley-Eszti
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Thanks, H-E! It’s kind of a fun challenge trying to keep this blog somewhat anonymous, but also post photos of my life. Bowie really is the pony I always wanted, what a treat to watch him gallop again. 🙂
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Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyy. Thats all I have to say!
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Haha! That made me laugh out loud, thank you. 🙂
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I’m so glad you did this! We have to learn ways of being able to live differently than we used to. It’s a huge learning process, and Lord knows I am still in the beginning stages, even after 5 years of this illness.One thing I had to do was stop all the doctors appointments, The more I tried to get well, the worse I felt. Nobody has answers. We have to take care of ourselves. I didn’t stop completely, I just slowed down, and only keep up with follow-up appts and a few tests they recommend. Time off from appointments, was helpful, I used to think, my goodness with all these appointments to go to it’s as exhausting as a full-time job, and what I need is the time OFF to rest and take care of myself, so my doc appts are no more than 2 per month. This illness is relentless, the more you try the more it fights you. I’m not saying give up, I’m just saying, take that time, like you did just now, for yourself. One day of happiness can help make the mierable days a little mo re bearable. I recently gave in and went for pedicures with my friend. It was so hard to go, to sit that long etc.. but the next day while I lay miserable I thought about the fun talks I had with my friend and looked at my pretty painted toes…and tried to fight off the thoughts of …see? look what happens when I go out? I feel like crap and it’s not worth it. But it IS worth it sometimes, you just have to figure out which things are worth it What makes you happy to balance things out? Of course last night I was running a 102.8 fever and hard headache and I’ve slept for 12-15hours a day since then, but, now I appreciate being able to be home and snuggle on my couch with my pets and watch or listen to TV shows or just sleep.
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Oh, lady, thank you for the comment. I wish I’d learned a little sooner to stop the doctor appointments. I would still like to be able to go to therapy and acupuncture and Good Doctor follow-ups, but it is TOO MUCH. I have 3 appts next week and 4 the week after, so it’s going to be busy after such a quiet spell… I’m not looking forward to it. 2 appts a month ~ well done! And it is SUCH a good idea to go for a pedicure (money, notwithstanding). You can sit still and chat calmly and feel pretty ~ at least on your toes
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Sorry, I hit reply too soon. You are absolutely right that the key is figuring out WHICH things are worth it. I don’t envy your feverish recovery day, but I DO envy your 12-15 hrs sleep (sorry, I can’t help it, even though I’m sure it was unrefreshing)…
Is that picture on the bed in the stripey top you? Beautiful (sad) photo.. x
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[…] 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 […]
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[…] stopped phone calls for the most part. August: Stopped eating soy, citrus; J. and Z. gave me a scooter: my ticket to some freedom. September: My mother and brother, T. visited; abdominal pain started; […]
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