As most of you already know, I am a big advocator of trying to have a good quality of life, no matter how ill you might be.
This sometimes becomes especially hard.
The past two years have been challenging, but this past year was, by far, one of my worst. My body wouldn't cooperate enough for me to even be able to go and have lunch with a friend. Going to a movie was absolutely out of the question. Anytime that I forced myself to go out and be social, I paid for it, severely. Not only could I not shower, or see friends, but I couldn't even enjoy being in my own house. I had to plan out my day so that once I went into the kitchen/living room area, I would not have to come back into my bedroom until I was going to bed... I couldn't go back and forth between rooms all day because that would be too much movement and I would get motion sickness and start vomiting.
Thankfully, I have come through to the other side of a dreadful year. I am *almost* back to where I was about 6 months after having to quit work. I can finally enjoy an odd meal out, maybe go to a movie, possibly even go out to listen to a live band. I even had the opportunity to perform myself recently!!
Now, bear in mind that I have to triple my pain medication on a night like that.
I got to go sing... But I had to prepare. An entire stash of extra medication, a chair to sit on since there's no way I could stand the whole time, and making sure that I do nothing but sleep during the day a few days before and a few days after. Sleep in until 5pm, then sing. The day after, I got up briefly a couple of times, but essentially I slept until 6:30pm, got up for three hours, then back to bed. If I didn't have appointments today and tomorrow, I guarantee that I would be sleeping for the remainder of the week.
Sleeping for days on end is something that I, and all the people around me, have become accustomed to.
The most frustrating thing for me is the swelling that ensues when I am stressed - even in good ways. I was so nervous this week that my thighs, my stomach, and my arms virtually doubled in size. My thighs haven't been this big in years. Plus - I could feel my chest and my innards starting to swell too, so I had to take even MORE medication to try and keep my body, my nerves, and my stress levels calm. It may not sound like a big deal... But it's a much bigger deal than it seems. I have to pay such close attention to the nature of my swells. One wrong move, one extra stress, could have me immediately in the hospital. I am always on the verge of having a severe, life-threatening episode.
So why do I participate?
Quality of life.
Plain and simple.
If I can manage to get on stage and sing once every few months, if I can manage to sit for a photo shoot once every few months, if I can GO see a movie or eat OUT somewhere every few weeks or so - these are all MAJOR victories. And yes, I will get nervous and excited and I will have episodes of swelling from having fun.... But I would rather have mild swells and BE having fun rather than sitting at home, day in and day out, for the rest of my life just to TRY to avoid any episode. And really, even THEN, any psychological stress, any major temperature change, any exciting or upsetting conversation, any hormonal changes could trigger a swell.
My goal is to try and organize my life in such a way that the majority of my swelling comes from GOOD stress. If I am going to have mild episodes every few days, I want it to be from something that made a POSITIVE contribution to my life. It's a little easier to take.
So here's to good stress and being determined to have as amazing of a quality of life as I can!!
Check out some of the POSITIVE things I have been able to accomplish - with the help of medication, supportive friends and family, and a wonderful boyfriend who helps keep me calm.