My Day: Twelve years into ET, what's it like?

Warning, warning, warning: This post is more or less a reality check about what it's like to live with ET if you're me 12 years after the first onset of the disease. It's not necessarily a typical day for most ET patients, or even ET patients in their 60s. We are all different, and our diseases progress at different rates based on lots of different factors. So I'm not touting what I think is "normal," here, just what's been my experience.

I will also say that I feel better than I did before I started on hydroxyurea (HU) and when I was working and my time was not my own. On those days, I was exhausted by 3 p.m., and I would often go to bed as soon as I got home from work. The HU helped with fatigue, but so did learning to pace myself and find my own daily rhythm after I retired. 

Anyhow, here's my typical day: 

Night time: I try to get 7-8 hours of good sleep each night. This is easier said than done. I have always been an anxious and light sleeper, and this has become worse over the years. I also have night sweats sometimes and very dry mouth that wakes me up. On a good night, I wake up once and go back to sleep immediately. On a bad night, I wake up every two hours, as if an alarm had been set. Fatigue is always worse after one of the bad nights. 

Lazy morning: I don't have a lot of energy in the morning. I often wake up with a mild headache, a backache, stiffness--or all three. Besides ET, I have a bad back and bad sinuses None of these problems are severe in themselves, but put them all together and they make morning my worst time. 

So I spend mornings oxygenating, hydrating, and caffeinating. It helps to pump up my energy if I can get in at least 15-30 minutes outdoors--rain, snow, sun, heat, or cold. I try to get 32 ounces of water down before lunch. And I also try to keep caffeine levels in check by drinking half-caf. 

I have breakfast with my husband before he goes to work. Breakfast is usually an egg and toast, or homemade granola with oatmeal. 

In the morning, I avoid doing things that might take a lot of concentration. I read the newspaper online. I tidy up the bedroom, living room, and bathroom. In summer I work a little in my tiny garden. I make phone calls or text messages about appointments I might need. I make a lot of to-do lists in the morning. 

I do a 30-minute exercise routine of some sort every weekday morning religiously, and often on weekends. And here's a plug for the Toronto Rehab YouTube channel, which has exercises for those dealing with chronic pain. It's free and it's designed for those with limited energy and range of motion issues. Check them out.

About noon, I start wondering: Why is it that a shower takes so much energy? I've heard lots of people with chronic illnesses say that a shower wipes them out. So I don't shower until after I've got some energy going from my yoga routine.

Once I've showered, I eat lunch. I try to keep starches low and fresh fruits, veg, and protein high. One of my favorite lunches is a smoothie with avocado, pomegranate juice, and yogurt. I also like high fiber crackers and hummus with olives and orange slices. 

I try to do something relaxing while I eat so I don't eat too fast. I enjoy listening to podcasts. One episode of 30-60 minutes is about the right length for a lunch period.  

Peak period! My peak energy time is from 1 p.m. to 5:30 p.m. I usually feel good--I do shopping, errands, see a friend for coffee, take a walk, start a knitting project, read a book. I try to make appointments during my peak period because it's hard to drag myself out in the morning. Anything that requires concentration is good to do during this time, and I find I enjoy whatever I do during this time. 

About 90 percent of the time, I can count on feeling good, but once in a while I will get hit with sudden fatigue mid-afternoon. It's not a sleepy feeling, it's like a total shutdown of body and mind. Sometimes it comes with visual distortions like a migraine aura. Sometimes I feel slightly dizzy or nauseated. I can function through these spells. They're not severe, but they are buzz kills. I have never been able to predict them, and nothing seems to get rid of them. I either have to ride them out or go lie down for an hour.

I drink another 32 ounces of water in during this peak time and not overdo the coffee. 

Suppertime: I start winding down about 4:30 p.m. I do dishes and start supper while I listen to the radio news. (My husband makes breakfast and I make supper.) A slow cooker that I can start with soup or a roast in the morning can be a time and energy saver. I use mine a few times a week, especially in summer when I don't want to heat up the oven. 

We watch an hour of TV news, and then I try to make myself take a walk. I wear a pedometer on my shoe and shoot for 5,000 steps every day, which is two miles. I often don't get there. But my cardiologist always says, "It's the exercise you do that matters," so I try not to beat myself up for what I don't do.

Wind down: I am not good for much after 7 p.m. It's really my worst time of the day. I can chat with my husband, watch a movie or TV series. I avoid talking about money matters, family crises, or topics that make me anxious and will make it hard to sleep. I don't plan evening activities with friends. I try to read before I go to sleep.

Often, despite feeling tired and mentally ready to check out, sleep is elusive. I try sleep talk-downs, books, on tape, white noise machine, prayer, setting my alarm clock earlier, cutting out coffee after 4 p.m., etc. All of these things help sometimes.

Bottom line: Younger ET patients who take care of children or work outside the home have my admiration. They don't have the luxury of being the complete boss of their time, and so every hour, sometimes every minute, is a constant round of prioritizing what must be done that moment, and what can slide to the next hour, the next day, the next week. Maybe some of them will offer some thoughts on how they manage. 

Be well!

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