Time to open up.
It’s been a year of struggles, numerous blood tests, tears, and questions – but it official. I have Chronic Fatigue Syndrome.
What the heck is that? (you may ask – if you’re like me). Is that even a real thing? (if you’re like me).
It all started about this time last year. I was enjoying an amazing summer trip through Utah, then up to BC (if you remember). Near the end of my trip, I contracted H1N1 and took several weeks getting over it. That is when the severe fatigue set it. Along with an increase in headaches, and muscle and joint pain/soreness. I went to the doctor to get my thyroid tested, because this just wasn’t ME. I usually had plenty of energy, and had no trouble keeping on top of things. My thyroid test came back normal, but my WBC count was low. Really low. That set off a year’s worth of tests and more tests – everything from luekemia, to HIV/AIDS, to Hepatitis. All negative. Finally, it was a blood specialist who first suggested Chronic Fatigue Syndrome. I didn’t think much about it because it’s not even a real thing….right?
Chronic fatigue syndrome (also known as “myalgic encephalomyelitis“) is much more than just being tired a lot. People with ME/CFS are so run down that it interferes with their lives and can make it hard to function at all. Some people with ME/CFS say they have trouble staying on top of their responsibilities at home and on the job, while others are severely disabled and even bedridden. Furthermore, they’re not just dealing with extreme fatigue but with a wide range of other symptoms, including flu-like symptoms and chronic pain.
That described me perfectly.
After years of research, experts now suspect that something called central sensitization is at least partially to blame for ME/CFS. They also believe that’s what makes it so similar to fibromyalgia, which shares many of the same features. My mother suffers from Fibromyalgia, and I know how debilitating it can be.
Many researchers believe at least some cases of ME/CFS are caused by an abnormal reaction to common infectious agents. Interesting, seeing as how it was brought on after my body fought off a terrible viral infection.
Multiple studies suggest that the immune system may be chronically active in people with ME/CFS, which could at least partially explain the fatigue and lack of energy — basically, your body thinks it’s fighting an infection, whether it is or not, and that takes a lot of energy. That explains my low WBC count. My body, for some reason, thinks it’s always fighting off an infection, which runs me down and makes me feel like …. poo.
So what now? In some ways, it’s nice to put a name to it. Makes me feel less CRAZY and gives me a medical reason for how I’ve been feeling.
In other ways… it’s like, now what?
I’m going to feel like this forever?
So far, the condition is incurable.
As far as treatments go – the doctors can basically treat your symptoms. Sleeping pills to help you sleep at night, pain meds for the aches and pains, anti-depressants to manage the stress levels. But ultimately, no cure.
What do I plan to do? Well, I am going to try eliminating different foods from my diet, to see if that helps. I’m going to try different herbal supplements to see if that helps, and I am going to TAKE IT EASY on myself and accept that this is how it is right now.
It’s hard when I look in the mirror and see that I’ve gained close to 10 lbs since this time last year.
It’s hard to see the circles under my eyes and my sallow skin.
It’s hard to look around my house and see every way I’m failing to keep up.
It’s hard to miss out serving some Sundays because my symptoms are making it impossible to get out of bed.
It’s hard in a lot of ways…but it’s also a blessing. It is NOT terminal. It is NOT unmanageable. I can still walk. I can still talk. I can still laugh. I can still play. Life is good and I’m not going to let this get me down. It’s one of those inevitable trials that we all face, put there to make us stronger and more humble. I plan to get everything out of this trial that I can 🙂
Anyway, I’m sure you’re bored silly, but I had to write this down – even if just for me. I can look at this and remember that it’s okay to let somethings go. It’s okay to have a nap when I need one.