Tags
acceptance, Atrovent, chronic disease, family, fear, Health, Life, living with MG, love, Mestinon, Myasthenia Gravis, Myasthenia relapses, Online Communities, steroids, therapies
People who suffer from chronic diseases often have to deal with the mishaps of relapses.
I always remember when my neurologist told me eight years ago, “you have a chronic disease”. Wow!!! I thought that it meant that something terrible was going on with me. For a moment I saw the ripper coming to close for my commodity. When I got home and read the booklets he gave me I learned that what it meant was that I would have to deal with my illness for the rest of my life. whoosh, what a relief! So, I kissed the ripper goodbye and tended to putting my life in order.
It wasn’t easy, but I did it. The only thing I couldn’t and still can’t control are when, where and why I always face relapses. Relapses are when my disease enters an acute phase. You can say that it peeps around the corner reminding you that you still have it even though most of the time you feel pretty good.
In occasions they can come around without notice and other times they can appear with certain things like a severe cold or a stressful situation. It all depends.
None the less, when they do arrive they are like unwanted solicitors or an annoying visitor.
The thing with relapses is that they remind you that you’re not okay. You live with a disease even though sometimes it seems you’re fine. I always think of my relapses as reminders of not taking anything for granted.
For example, most people take their legs for granted. They enjoy walking, running, going up and down stairs, and so many other things. When everything is under control I also enjoy the freedom of my legs. However, Myasthenia can debilitate legs, arms, lungs, voice, etc. Which means that my dear legs go on strike when relapses come to haunt me.
Its as if you are going to fall in any minute. Scaaaaaary!
Now however, dealing with mom is another thing. She thinks my relapses are my responsibility. “You don’t take care of yourself!”. Wow, does that piss me off. What she doesn’t understand (or wants to, in fact) is that relapses can occur without notice. It doesn’t matter how much or less you do take care of yourself. Anything can trigger it and basically you can’t do anything about it.
I’m not such a huge fan of sharing my experiences with my community (MG online communities) because reading about people’s experiences give me the creeps. I’ve always had a hard time writing or reading about Myasthenia because acceptance has always been an issue for me.
I tend to push my condition to the back of my mind and never let it play a major role in my life. However, when relapses come around the corner I just can’t avoid letting it take over who I am, if only for a couple of days (hopefully) till things get back to normal. What I hate the most is the fuss of staying in bed. I have to be on Atrovent, for my lungs, every three to four hours and my meds go up and steroids are to be taken.
If I’ve learned something (and believe me I have) out of having a chronic disease, is that each day is God’s gift and as such, I embrace it full of joy. Looking at it from this point of view, maybe relapses are reminders of how blessed I am to have a loving family that cares and nurtures me back to health.
So, my dear friends we need to deal with every aspect of our lives because nothing we can do will change that. The good and the not so good! Things are what they are and all we can do is wait until everything settles back eventually to normal. Being normal whatever it is that normal means to each one of you.
