As I read comments from the various cancer and stem-cell transplant groups I'm a part of, I am reminded how much I'm not alone. There is a comradery sharing the numerous side effects we have. Many are so similar and so different with all varying degrees of severity.
We share both the good days and the bad days. We all share the test of figuring out our limits and knowing that if you push too much, your body begins to shut down. And what were once non-exisistent or usually mild symptoms become something so much more that it limits you in one form or another.
I think of how grateful it is to be alive but it's hard to enjoy all the aspects when your limited in some way because of having a flare up of one or more of the begrudged gvhd symptom or symptoms.
One of the most reoccuring symptoms for me are my dry eyes. It can become so severe that I can hardly keep my eyes open and whatever I am doing at that time, whether for work or pleasure, it's a disruption. And it's not so simple as dropping a few eyes drops in the eyes and all is better. Sometimes it has taken an hour or more of resting my eyes before there is any relief.
Or there are those moments where you are having a good day and all of a sudden begin to smell a dirty ash tray or, as most present, an ongoing ammonia smell. It comes to a point where it's so powerful it becomes nauseating.
But most of all, the fatigue can be the biggest battle. My fatigue has gotten better but when I ignore the small signs and my stubborn nature wants to keep pushing, that's when the mighty crash and burn occurs. It manifests itself with extreme fatigue and nausea. I have left work because of it and would come home to sleep for an hour or two and feel much better after that nap.
And while I can go on and on with all my symptoms, I'm reminded with many of the support groups that I'm a part of, that I'm not alone. There are so many of us that are faced with these challenges daily. And we just need to keep moving on. It's scary at times to think that at some point one or all of these symptoms could mean something much more debilitating in life. And it's scary not knowing what damage has been caused by all of the toxic chemo we have endured. Some people say you can't focus on that or think about it but that's a lot easier said than done. When faced with living and dying and knowing you're alive because of the poison you allowed in your body. You can't help but be reminded of it when your body begins to weaken and shut down. And because I have had a relapse, the fear is even more real.
I try my best living and enjoying each day, but it's when the side effects resurface and gives a reality check not to get too comfortable.
Image source:
http://kdurham.com/site/2015/03/03/remember-you-are-not-alone-backchanneledu/
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