Sometimes people don't know what to say, I'm here to tell you that's okay. At times I still don't know how, or what, to think or feel about getting sick. I say getting sick because it hit so quick, like a rug pulled straight out from beneath my feet. With no warning I landed straight on my ass. I didn't see it coming. I don't think anybody did. Maybe I'm overly honest about my life story at times. The truth is, We live in a world where people are going through a lot of the same things. Some, if not most compartmentalize, put on a happy face to the world and pretend everything's happy go lucky. When in fact they are struggling or know others that are. Or perhaps they are dealing with extreme grief from loved ones being sick, or they themselves are sick or perhaps some huge devastating accident has impacted their lives.
I think it's interesting when people tell me I will get better or I will over come this and finish my masters. I usually respond with no probably not and that's okay and they typically say it again with hope in their voice. Then I repeat a little more firm and a little more directly, no I probably won't get better and I probably won't go back to school. I add the probably for your sake. Not mine. I can see in their eyes that now they are uncomfortable. I am not here to make you comfortable.
This isn't going away. If you think it is please go bury your head in the sand somewhere else. Instead of telling yourself I will get better let's focus on how we can improve my quality of life in the present. I'm hopeful my symptoms will improve and I won't always be in the midst of a super horrible flare but I have accepted this is never going away.
If you're reading this, don't be sad for me. Don't fill yourself with false hope that I will get better. Instead love me. Don't worry about my condition constantly. Just accept it as part of me. Let me rephrase and repeat that. Stop worrying and just love me! Understand that I may not always feel up to going and doing things, or I may have to cancel. Canceling has nothing to do with you, it doesn't mean I don't like you, or want to hang out. I get symptomatic standing in lines.
- crazy hot flash, dizzy, elevated heart rate, low blood pressure, vision comes and goes and then the wonderful joy of fight or flight sometimes kicks in which makes all the above even worse.
I think the hardest part about getting sick is losing friends. I can count on very few fingers the ones that have stuck around. But the ones that have are the ones that would come to my house and just crawl in my bed and chat it up. Now distance just separates us. With new friends it's interesting. They only know sick Kate. Sometimes I wonder if they believe me when I talk about life before getting sick. Only because things are so different now. I know that's silly but I'm being serious. I once was very driven, focused, a go getter and knew what I wanted in and out of life. Nothing could stop me. Now Im just more limited, I don't let illness stop me but I try to find more joy in my day than I once did before, I enjoy the small moments. I stay home and enjoy being alone. While some are all like "Heyyy I got a promotion!" Im over here like " Heyyy I took a shower! Sat on my shower chair and felt like I was dying but I showered! "
Please don't misunderstand this posting. When I say I accept I will have this condition forever. I feel I should clarify and say, I won't stop searching for a magical cure, better treatment and improving my quality of life.
Something I hear far to often is:
"You're so lucky you don't work!"...... Let's touch base on this for a quick second.
Lucky I can't use my degree?
Lucky having a port is to much of an infection risk to work?
Lucky having a weird illness makes my days completely unpredictable?
Lucky my entire family has been affected and devastated by my illness?
Lucky my marriage fell apart?
Lucky I am on disability and don't make enough money to live even a livable life ?
Lucky I'm sick every single day and depend on a caregiver to come in and do my meal prep?
Lucky I don't have to work? Hmmm
I wish it was by luck that I didn't have to work. Luck is winning the lottery. Not being diagnosed with an illness that majority of doctors don't know anything about! Luck isn't being told you're to "medically complex I don't feel comfortable being your physician". Or how about the latest... "I don't feel comfortable following the recommendation of the specialist, can someone else write the order?" or "I'm sorry we can't do that testing here because you don't have a local primary... oh you had to go off your blood pressure medications 5 weeks ago for this test? Yea sorry its policy! We don't take orders from doctors outside our county in case there is a problem with the blood draw" ..... Lucky?
I wish I was lucky. Lucky enough to win the lotto so I could help everyone with POTS have quality of life.
Haha Lucky. It makes me laugh. It's the most ridiculous thing I have ever heard.
Well there's my rant.
Moral of the story, it's okay if you don't know what to say. You don't have to say anything. But if you want to say something comforting, please don't try to tell me I will overcome this, or it will go away and definitely don't tell me I'm lucky.
I'm a warrior and I'm destined to do great things. I just have to find a new path .
But in the mean time just love me.