Jody’s Blog . . . a life after chronic fatigue syndrome

Friday, May 7, 2010

My son Jesse and I went to my mom’s for an early Mother’s Day visit this afternoon.

Though we only live a three-minute drive away from her, this is the first time since around Christmas that Jesse has been able to make this trip.

I have been over to see her a few times since the New Year, but only a couple of times.

It has been probably about two months since I’ve been to her house.

Jesse and I both have Chronic Fatigue Syndrome. We are both recovering at our own rates.

Each of us has different symptoms. But there is a core commonality to our lack of stamina, brain fog, and neurological disturbances.

In a way, it’s good that there are two of us. We understand each other in ways that most people can’t.

We spent an hour with my mother today. Not a very long visit, and not what we used to do in the days before we were ill. We used to spend the whole afternoon, pushing into dinner hour.

But about an hour is about what Jesse can handle before he starts to deteriorate, and that’s about the limit unless we want him to have to spend the rest of the day flattened in bed afterward.

Which of course, we don’t want. So, an hour it is.

It was a nice visit. We shot the breeze, had a few laughs. Exchanged Mother’s Day gifts. And then it was time to be on our way.

Not too long after we got home, it was time for both of us to head to our rooms to lay down and rest from the exertions of the day.

This is what special occasions look like, on a good day, in a household with CFS.

May 16, 2009 

I guess I overstepped myself again. This past week, I’ve had to do a LOT of resting.

I’ve even gone back to a nap in the late mornings or early afternoons. I’ll be reading a book on the couch or on my bed, and start nodding off. 

Because I am stubborn and mulish and don’t LIKE going to bed, I try to hang in there.

Grab the book I’ve almost dropped on the floor, clap my hand on the open pages before my book closes on me, lift my head and give it a shake one more time, then another and another until — okay I can take a hint. (Sort of.)

My body is telling me very clearly it is time to lay it down and catch some z’s whether I like it or not. 

Went back to bed at 11:30 a.m. today, slept after awhile. Got up at 1 p.m. Did I feel better when I woke up?

The answer to that question for someone with CFS is … complicated. Yes and no. That is to say, yes I was less tired . But no I didn’t feel better. Sorry, that’s the clearest I can get. 

Still, last week was a good week. Ncubator was a week old and looking good to my eyes. I learned how to add on to the site by myself and that gives me greater creativity and flexibility so that’s very cool. 

I posted an article about my mom, on Ncubator and on EmpowHer.com for Mother’s Day, and had the pleasure of showing it to her on the net. I was at her house on Mothers Day, and that was my gift for her, with a little basket of raspberries to sweeten the deal. 

Later that day, our son came over to celebrate Mothers day with us.

Last week my brother from Toronto came to visit us. He stayed for a few hours, and had a chance to visit with everyone. It was a great visit, though I was pie-eyed at the end of it.

My face was getting numb and I was venturing to speak less and less often as I couldn’t trust my words to come out properly and my thoughts would suddenly drop down a trap-door never to be heard from again. 

Went right to bed after that deal for an hour or so. Rested up enough then to make dinner. I was starving! 

Which reminds me — for years, I didn’t get hungry. I knew to go get something to eat because of what time it was, or because I was getting numb in the head and vibrating. But I didn’t get hungry.

Well, I have started getting hungry again and I find — it’s a real pain in the neck. But it’s an encouraging sign of improvement too.