Friday, November 28, 2014

Life Can Change in a Moment

Ah, yes, that's a lesson everyone with ME/CFS has learned isn't it? Blink and your life can change. We get used to cancelling plans at the last minute, bowing to the whims of this crazy disease, and just going with the flow.

So, that happened to us this past week. We were enjoying a quiet weekend, with plans to leave on Wednesday to spend the holiday weekend with my extended family up in Rochester, NY. Then, bam!, everything changed.

My husband and I heard a loud noise in the middle of the night Saturday, which alarmed us since our younger son was away for the weekend. It turned out to be our older son, home from college in the middle of the night because he was feeling so horrible (and couldn't sleep with a party going on in his apartment!). He woke up Sunday barely able to move, with a severe sore throat and swollen glands. Even more alarming (we tend to get used to sore throats with ME/CFS), he had a temperature of 102 degrees F! This from someone whose normal temperature runs about 97.5 and for whom a "fever" usually means a high of 99 F.

As soon as we finished breakfast, we took him to our local Urgent Care clinic. We thought maybe he had strep throat since people with ME/CFS tend to be more susceptible to bacterial infections. His strep test came back negative, but the mono spot (rapid mono test) came back positive. This is something we have dreaded for many years: one of our sons getting mononucleosis (aka glandular fever in the UK). It is a known infectious trigger for ME/CFS and something that both our boys had always tested negative for, showing no past exposure to the Epstein-Barr virus (EBV).

Of course, we immediately cancelled all our holiday travel plans. Besides the fact that he was in no shape to go anywhere, we were supposed to stay with my dad, who is undergoing chemo for stage 4 melanoma. We couldn't risk exposing him to such a virulent infection.

Before ME/CFS, something like this would have sent me into a panic and upset me greatly. Now, we're used to last-minute changes and cancellations. I was very disappointed we wouldn't be seeing any of our family for Thanksgiving, but there's nothing we could do about it. We accepted the change in plans and made the best of it.

As it turned out, my husband caught a bad respiratory virus starting Wednesday, so it turned out to be a good thing that we (ahem, he) weren't driving 8 hours in a snow storm that day. We had a nice quiet Thanksgiving at home, something that hasn't happened since before our youngest son was born! And we were able to spend the holiday with my father-in-law, whom we just moved to the area a couple of months ago.

Our son is doing a bit better. Of course, the effects of mono can last for months even in a healthy person, but his fever has at least dropped, so he's not quite so miserable as he was. We got him started on Valtrex, an antiviral that works against EBV, immediately, so we are hoping that will help him to kick this sooner. He contacted all of his professors - on the plus side, at least mono is something they will all understand! And he contacted the Disability Office at school to request Incompletes in his classes, since finals are just a week away. He'll probably need to cancel the Winter session class he just signed up for, so he can finish his Fall Semester work.

And that's life with ME/CFS, right? You roll with the punches and adapt. Even when the thing you dread most finally happens, you accept it and move forward. That's one thing I've learned from 12 years of living with ME/CFS. We have little control over our lives, so when something goes wrong, go to Plan B.

Hope all of you in the U.S. enjoyed a lovely Thanksgiving with your families!

Jamie felt well enough to join us at the table for Thanksgiving!


  1. Anonymous10:43 AM

    So glad you had a plan B. I'm considering a holiday with friends again soon. It'll be full of plan Bs so we can enjoy ourselves/rest as we see fit no matter how I am feeling.


  2. I remember one year our oldest had a huge asthma attack right before we were to fly out to visit family for the holidays. Needless to say we were grounded and had to stay home to make sure he was fine. Praise The Lord that He is always in control. Even when things do not go according to my plan, I can be sure it is going according to His!

  3. I booked flights to see my family and 5 days before got a horrible cold that leads to those horrible crashes. I had a lift to the airport and at the last minute I managed to get one of my brothers to meet me off the plane in London (waiting in the pub after work was his hardship). He then escorted his wobbly big sister to my dads by train. Small airports are great for travelling when you have CFS. I then spent the week recovering at my dads. I do find it scarey to plan anything when you don't know how you are going to be but the old caravan is great for holidays. If my partner wants to go downhill mountain biking (he should know better at his age) we take the caravan to the car park each day so I can sleep if I need to.

    1. Glad you were able to spend time with family! We also love traveling with our camper - we can go at our own pace and bring our mini house with us!


  4. 102 fever! Good gracious, that would scare me too. Anything over 100 and I feel horrible as well. I so hope he's feeling better. Thanks for sharing your story and how to make the best of Plan B with us at Small Victories Sunday.