The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:
- Concerts: The loudness of the music causes an adrenaline rush, which then triggers brachycardia, shortness of breath and dizziness.
- Shopping: Unless I can find someone to go with me to push my wheelchair, I can't walk for long periods of time.
- Outdoor activities: If the temperature is over 75 degrees, I'll pass out.
- Night activities: I'm usually too pooped after 8:00
The list could go on, but I'm sure you get the gist of it. I'm beginning to come up with reasons not to do things I haven't tried yet, because I'm sure it will trigger some POTS symptom. To be honest part of me doesn't want to find out that I can't do this new thing either. Just one more thing to put on my can't do list. I'm very aware that I have allowed this disease to imprison me.
I became very aware of my lethargic behavior yesterday. I was playing computer games, recovering from my trip to the grocery store. My family was coming and going to different activities. Being Memorial day weekend many of my friends have special plans. I began feeling sorry for myself, oh poor me, I can't go anywhere or do anything. This disease is stealing my life from me, boo-hoo-hoo. I want to go to the beach, listen to the ocean calm my soul, see God's handiwork and feel the sand between my toes. I had a list for not going; the walk from the parking lot to the shore will poop me out, it might be too warm, I probably should go with someone, what if I become symptomatic and I'm by myself, my POTS symptoms will probably get in the way of my enjoyment, blah, blah, blah! Excuse after excuse. At that moment I lost it a bit, I decided to go to the beach by myself. Who cares if something happens, at least I'll be doing something I love. What I discovered was that I needed that beach trip to knock some sense in me, to at least try to do the things I love, and if I become symptomatic, so be it. Better to try something and MAYBE fail, than to not try at all. I'm not saying my trip to the beach was symptom free, brachycardia, nausea and dizziness were definitely there, but I would have experienced those symptoms at home. I went to the beach, I had a good time, and I survived! I was so afraid of becoming symptomatic, that I stopped living my life at all. I'm going to feel nauseous, dizzy, fatigued, tired and short of breath at home anyway, why not do the things I love feeling yucky. As Nike says, "Just do it!"
Still inspired,
Michele
Brilliant! I agree completely! Actually, I think suffering from depression before I got diagnosed with POTS and limiting my life because of all the things I was afraid to do has actually really helped me- because it was so awful and so isolating to have pretty much nothing I dared do, that now, despite POTS, I am determined to do things even if I do feel a little worse for a while- because the happiness these things bring me actually make the feeling worse physically worth it! I have this stubborn-ness and refusal to give in to the physical symptoms because I never want to feel that depressed again, and it really does help because I've done things at times when physically, I didn't think I'd make it through.
ReplyDeleteSometimes, the frustration of the limitations can be motivating and even empowering! xx