I got on Facebook the other day and had a message from my cousin. She is in her early twenties and also has polycystic kidney disease (PKD). She said, "How do you find the energy to do anything? I am constantly so drained. I have read a lot of people with our our disease are always having problems with energy levels. You are always doing all these things! I use all my energy just cleaning my house and taking care of my son! I feel horrible about it." When I read her words, I realized something. I realized that in my efforts to show the world that I would not let PKD beat me, that I had given an unrealistic view of what my life is really like. I purposefully show my great moments and the joy in my life. I do it to stay positive and to encourage others who have chronic illnesses to make the most of life, no matter what.
Don't get me wrong, I have not misrepresented the joy that my life holds or the love that I have in that life. However, by not showing my struggle, I inadvertently made it seem like it is always great for me and possibly given the impression that I am braver and stronger than I really am. My purpose in this post is to shed a little light on what "normal" is for me. I hope by doing so, that anyone who reads this will hear, what I tried to communicate to my cousin. You can't control how many bad days (or even moments) you have or what they entail. But, what you can control is making the very best of the good days (and moments) that you have.
Now that I no longer have a job, it is a bit easier for me to deal with the limitations of my disease. When I worked full-time it was very difficult. When I worked part-time it was slightly easier. Not easier to get though, just easier to hide, I think.
Here are a few of the things that I deal with because of end stage renal failure:
- poor appetite
- vomiting
- bone pain
- headache
- insomnia
- itching
- dry skin
- malaise (generalized feeling of discomfort, illness, or lack of well-being)
- fatigue with light activity
- muscle cramps
- recurrant urinary tract infections
- pale skin
- detectable abdominal mass
- tissue swelling
- irritability
- poor muscle tone
- change in mental alertness
- metallic taste in mouth
So what does a "normal" day look like? Well, I always sleep until the last minute possible. I wake up (if I have to go somewhere) with just enough time to get a shower and get out the door. Being tired ALL THE TIME has been the hardest thing for me to get used to. I drink a half to a cup of coffee every morning & have a very small breakfast, like a piece of toast or a breakfast bar. Then I take my medicine and vitamins. They usually make me nauseous, so I quite frequently spend the later part of the morning trying not to throw up. Speaking of throwing up, I actually DO throw up three to five times a week- at various times of day. By lunch time I am pretty hungry and try to eat something that won't hurt my stomach. My insides are so displaced that my stomach over produces acid, making it painful & sometimes impossible to eat. I usually do ok with whole, non processed, natural food. The more chemicals in food, the more likely I am to "reject" it. It is usually about lunch time that I start hurting enough to really notice, so I get though lunch, and head toward bed to lay down to give myself some relief. After my nap, I usually am pretty good to get some other things done in our outside of the house. I don't have much time though, because by about six or seven o'clock, my pain level is back up to the point of agony and I have to start winding down for the evening. I get a lot of things done by taking breaks. When I cook or wash dishes, I will work for a while, then sit down and rest. I keep repeating that until I get a project complete. It usually takes me way longer than I want it to to get anything done, but I would rather take more time and do it myself, than let anyone do it for me!
Many days I have made plans that I have to cancel because I am in too much pain to drive or enjoy those plans. Countless times I have been late to events because I would be getting ready and have adverse effects from my medication. When that happens, I have to go to bed & just wait until I can continue.
Just this week I spent three entire days in bed. I had the worst pain I have had in a very long time, I threw up all over the place, so violently that my little boy got scared and started crying. Both of my husbands days off were spent taking care of me. That third day we got the call that my surgery (to have both kidneys removed) was rescheduled for MY BIRTHDAY! I was in the bath when Jason came to the door to tell me. I burst into tears. I sat there and cried for about five minutes before I got myself together enough to realize that I would still be okay. But, in that moment, I was tired and upset & just wanted to have my birthday party on my birthday! I felt sorry for myself and for that five minutes I wanted to give up.
I don't tell all of this for sympathy. I am telling it (finally) because if my story is going to help someone I have to be honest about the bad times as well as the good times. I have to "show" that I am not Wonder Woman. I hurt, I cry, I get tired and scared. It is my plan, from this point forward to be honest about ALL of it. Because one day, someone might, as I did, get some really bad news & come across this blog. When they do, I want them to get real, honest emotion, as well as hope and encouragement-- "If she can do it, so can I!"
No comments:
Post a Comment