Wednesday, October 25, 2017

A Day in the Life of me with M.E.

What’s a typical day with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)?

I wake up after sleeping six hours. Two cups of coffee. I keep the tv off all day because I like it quiet. I do my daily Bible study/reading which takes about two hours. If I have no medical appointment I try to stay home and rest. I can’t handle stress anymore.

I eat breakfast and take my morning pills. I go upstairs and dress or bathe (every other day) and rest, then dress. I can’t shower or sauna anymore because they are far too draining to me. I look around at my house that needs to be cleaned and organized and then go downstairs, knowing it’s another day that it won’t get touched.

Last night I dared to vacuum upstairs, something I push myself to do only every three weeks or so. I can’t even clean my own house. My husband does the downstairs floors every week. But because of that exertion, as well as my bath today, I could only do my Bible reading and load the dishwasher, have lunch and more pills, then I rested the rest of the afternoon till my husband came home. I had throbbing pain in my legs the whole time. Then I got up and made a simple dinner, had more pills, and went back to the couch. If it’s a day I have to shop for groceries, I can’t also make dinner, so I’ll buy a roast chicken. My husband doesn’t complain.

This really is a normal day for me. I always hope that the next day I’ll be able to be more productive, but I’m usually disappointed. I’ll watch some tv in the evening, take more pills around nine, drift off around ten, then wake up around eleven with a second wind. I stay up till midnight or one every night, because I can’t sleep longer than six hours because my back hurts. The few times I’ve tried to go to bed around eleven I wake up at four in the morning and it throws my whole day off.

Early on when I was still trying to figure out what was happening to my health, I had a doctor’s appointment four out of five days a week. It was so hard to drag myself to these and try to appear normal for a few hours. Then it would make me crash for 24 hours afterward, but of course, the doctors don’t see that. They see someone who looks healthy. That’s the thing with invisible disabilities and chronic illnesses. They’re invisible. Invisible, but not imaginary.

Jealous of this schedule? Don’t be. I’d rather be a productive member of society with energy to do life. This illness has taken so much from me. But in spite of it, although I do get discouraged, I’m not depressed. I know I have it better than most with this illness worldwide. So many places they are not believed, or worse, are put into psychiatric facilities. I can’t believe it. Also I have disability benefits through work and the government and a private plan, so at least I don’t have financial stress on top of health concerns. My husband reminds me that my job right now is looking after my health. He really is an amazing man. I’m so thankful for him.

Sunday, October 1, 2017

Nursery school

September Journaling

1.      A final day at sea as we head to Miami. As nice as vacations are, it’s nice to go home to my routines and more rest.

2.      A long day of travel. Customs is automated on the Canadian side now, but they’re still working out the bugs.

3.      Back home late last night. Got to go back to our own church today. Then we had guests over (the Hudsons) and I got a nice long nap today. That’s what it’s all about.

4.      Labour Day. The last day of my husband’s two week vacation. He gets six weeks a year total.

5.      Grocery shopping with my husband.

6.      A new treatment today. It was amazing! My cognitive impairment has been so bad. I haven’t been able to do even simple math like addition and subtraction for three years. But I could suddenly balance my chequebook again. The numbers made sense again. It’s the little things that are the big things.

7.      Dental appointment.

8.      A rare day at home in the next two weeks. So many medical appointments, it’s like the old days.

9.      Church picnic. It was too much for me so I slept in the car for two hours.

10.   Church today flanking a long nap.

11.   I will teach my grandson nursery school every Monday. My mom is coming with me because it would be too much for me on my own. It helps my daughter out and he loves to learn. It’s mostly play since he’s still a toddler (2-1/2).

12.   Women’s Bible study started up again. Then a treatment, dinner and then a Women’s ministry planning meeting. Too much for one day.

13.   Doctor’s appointment to fill out insurance forms. Stressful, plus a two hour wait.

14.   Chiropractor and massage. Sent insurance forms off.

15.   Pain clinic today.

16.   My husband and I went to visit the grandchildren today.

17.   Church today.

18.   The Women’s Ministry is showing the movie, The Case for Christ, at church tonight. My mother in law is coming. We switched Benny’s school day to Friday this week.

19.   Women’s Bible study, then my mom visited.

20.   Treatment.

21.   A rare day of rest.

22.   School day. My mom came with me. My grandson loves school.

23.   A quiet day with a long nap.

24.   Church today, with an international luncheon for Missions Week. My husband made jerked chicken for Jamaica and I made a buttermilk spice cake to represent Finland. I’ll also wear the t-shirt my mom brought me from Finland that has my hometown on it.

25.   School day. On my own. Too hard.

26.   Bible study, lunch, then injections to my face. Uggh.

27.   Treatment. My mom is staying over for a few nights. There was a snake in her apartment last week. It went out under the door and into someone else’s apartment. They haven’t found it yet which is a little creepy.

28.   Heard about some long overdue money coming from the government. So thankful.

29.   I feel bad that my elderly mother is here cleaning my fridge and bathrooms and cooking dinner. All those things I used to take for granted are hard for me now, but I do appreciate her help.

30.   A church historian spoke at our church to celebrate the 500th anniversary of the Reformation. Then I napped a few hours. Also I sat at the back with my feet up.