The ups and downs, happy and sad times, meetings and goodbyes can be so overwhelming . Life with CF isn't a picnic in the park but, it is worth it. Worth every breath I take because without the struggle I have faced for 27 years, I would not be the woman I am now! This is my style of taking all the negatives that come from a disease like Cystic Fibrosis and turning it into a positive.
1.
A new day is the best kind of days to reflect. Although, seeing the sun only brings on allergys, congestion, coughing fits if the weather is just so. That feeling that never goes away. The pressure. The wheezing. The tight chest it is so irritating. Hospitalized I hate seeing the sunlight. Why? Because it reminds me of the fact that I am not at my best and I can't go anywhere for a while. When I am sick the sun is the last thing I want to see. My blinds always stay closed when I am in hospital hell.
That sunshine is such a great thing to see when I am "healthy" and home. The warmth makes everything look so silly to complain about. Every morning the sun comes up if you want it to or not. The best part is if you see it and feel it you are lucky enough to still be here. Which is the best thing you can ask for right?
2.
Food, how I hate you and love you at the same time. I NEVER feel full, I know what a drag, right? I am also rarely ever hungry. Days can pass by if I am caught up in one of my projects that I will completely forget to eat. I just shut off the function that says, "Hey, dumbass eat something today!" Heaven help me on the days I don't eat correctly. It is like a grizzly bear trying to catch a fly in my stomach. Painful, bloated, tense, gassy, and an overall train wreak.
When I remember to eat, it makes a vast difference. Although that is what food does so I would hope it works the correct way. I am able to eat a lot and all high fat-high calorie foods, which is nice. When I remember to eat like the bottomless pit that I am, I am healthy. I have more energy and can function properly to a point, even if it is a pain to consume enough food to sustain weight.
3.
Other CFers, the downfall is getting close to those CFers just to see them get sick and worse is terrible. Watching them not make it to get the call for lungs is heart breaking. Seeing them struggle with rejection or infection post TX. Seeing the dreaded status updates "RIP (insert name here)". Or the message from their family member saying, "Just want to let you know they are on life support". It hits you like a ton of bricks thinking, I just talked to them they were "good" what happened? When in reality it can be anything! One bad pneumonia stent and that is all it takes.
The positive side, it is amazing getting to know them and it is awesome having that connection with somebody. Never meeting them yet sharing so much with them. Having somebody who understands the medical jargon and CF lingo couldn't be nicer. Thank you social networking for something.
4.
Relationships WOW all I can say in that respect is, rollercoaster! Period! All of the medical hoopla, gross bodily functions, hospitalizations, pills, and the overall crapptastic things make it so tough to find someone to stand by you, is tiresome. It isn't impossible just really difficult. Even once you find that one it doesn't makes it easy. Constant struggles with quality time, dating, having social times, being "normal", hospital stays, feeling like you are letting them down. Being too sick for sexual times can really hinder a relationship quickly. Never knowing what is going on in their head while you're hospitalized can drive you nuts. Thinking you might be holding them back from living a real life is depressing. It gets rough sometimes.
Even so, having someone to hold your hand while you're hooked up to a ventilator and look like hell, is amazing. Having the right person be patient with you in order to be intimate is reassuring. Recognizing that there is nothing that will bother them because they only care about your well being, is so nice. Having them there when you wake up from surgery couldn't be more comforting. Their help reminding you about meds or treatments makes things go so smoothly. The perks of having someone to be there for every coughing fit, every "accident", every pain, and every hospital stay is such a great feeling that I am so happy to have in my life.
So even though all of these things are terrible in that respect there is always a sunny side of things. You simply need to figure out what your positive spin on life can be and twist it into a smile!
Always Smile,
Sandi
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