The last thing I remember, I had a head full of hair, long and dark. I had so much energy, day in and day out. I worked full-time, went to school, had plans every night of the weekend (some weeknights too), and went on multiple vacations. I never got tired and always looked forward to the next adventure.

Nowadays, making plans is difficult. Will I be feeling good that day? Will I be good company? Am I going to be able to walk, use my hands, or even just think straight?

Living with this disease isn't easy. If you're reading this, you probably already know that or know someone whose either coping or struggling with it now. I read a picture on PostiveMed's Facebook page that read "You never know how STRONG you are until being strong is the only choice you have". It was geared toward breast cancer survivors but wow did that ever hit home with me. There have been countless times when I heard from family members and friends how strong they think I was/am for taking each physical and emotional challenge with a smile on my face. (I have to admit that this is where I got my name 'AndI'mStillSmiling' from.) Granted, I wasn't always smiling when I was scared or was having to go through yet another procedure but for the most part, I came out of there smiling. Maybe it was because I didn't want to show anyone that I was scared and I wanted to put on a brave face? Okay, so I admit that was a little part of it. But maybe it was because I knew I would get through it...eventually...and I was right, I always did and still do. It also helped knowing that I was/am surrounded by people that love me and would be there for me.

But it isn't always easy either. It took me many years to finally figure out that it's okay to say 'No' sometimes and to know your limitations. In a perfect world, we'd like to say that we have no limitations but in actuality we do, especially when battling the craziness of this disease. Saying 'No' was probably the hardest thing I have ever had to learn. I felt so guilty saying no especially when I was one who would like to do for others. To my surprise, everyone understood. I know sometimes this isn't always the case but in the end, you're doing this for the benefit of your health and that's really, really important. I admit, I still can't say 'no' sometimes (even to myself) but boy do I realize the consequences the next couple of days after.

Take this past weekend for example. I was driving home on Friday night from work. Traffic was really bad for some reason. It took me an hour and half to finally reach home. But before I could reach home, I had felt so nauseous and wanted to get sick...while I was still driving. I had to pull over at the nearest store for a few minutes to get my bearings. Then after a few minutes, I continued my journey home. By the time I got home, I could do nothing but lay down for the rest of the night. Glad I did because the next day I felt great. A little tired but not bad at all. I volunteered to watch my niece and nephews for the day so my sister and brother-in-law could get some things done around their house. It was a fun filled day to say the least but I think I paid for it the next day. I woke up with a headache that turned into a HORRIBLE headache. I started seeing "flashing lights" then came the pain. I really think this was all migraine related but I knew it also had to do with my previous stressful week and not resting the day before. I took the rest of my "headache day" and rested.

I don't know why I never learn but I am getting better. Next time I think I will compromise with myself and give myself some limits...like giving myself a limited time frame for doing things...especially if I can't follow my own advice about saying 'no' completely...even if I'm saying no to myself (remember, I volunteered myself for a fun-filled day with the kids). Regardless, I enjoyed every minute of my fun-filled day. I was so beat after those few hours that I didn't fight sleep for the first time in weeks and I even slept the hardest I ever slept!

Lupus can mean a change in lifestyle but it doesn't mean some things in life can't be enjoyed. I often wonder how I got so broken but when I can balance my life, somehow it doesn't always seem so broken.

edit post
Reactions: 
0 Responses

Post a Comment

Related Posts Plugin for WordPress, Blogger...