What does your CF look like to you?

[EnergyGal]

when I was young, I would say that my CF looked like a witch who was following me in a dark cave not knowing if I were able to escape from the cave alive.

As I grew older, my CF was challenging where I would literally run away my fears and thought that I could lesson the damage from occuring. By jogging every other day, I felt I was in control and if something were to happen to me I would do my best to survive. I was like the man in the movie T'Zar where the protagonist of the film kept on crawling when he was shot in the chest.
I saw myself fighting to my last breath.

When I was in my thirties, I learned that CF was not that easy to fight and I felt as if I was walking on a tight rope in a circus where people would stare and watch me walk this fine line. I was not wearing any fancy outfits just breathing and walking for every breath.

After my transplant, I lived a care free life for eight years while at times thinking and feeling that nothing could happen to me. When I knew I needed another transplant many of my thoughts came back of walking a tight rope this time I felt I was climbing an uphill battle with half my armour off of my body.

Now that I feel well again, I enjoy each day like it was my last. I am referring to my thinking. Try to keep a balanced outlook on life. I see myself doing yoga in my mind and also with my body.

In the past an image of what I was going through helped me to put my life into perspective. Sometimes I see people living that way too.

 

[Emily65Roses]

Maybe I'm just a weirdo, but I've never "pictured" it as anything. It's always just been CF, this thing in me that does X, Y, and Z. I've never seen it as a physical entity all its own, having its own shape or anything. I've never really likened it to any metaphorical thing either (like a witch in a cave). I was a rather unimaginative child. <img src="i/expressions/face-icon-small-blush.gif" border="0">

 

[EnergyGal]

I forgot to mention that I would sometimes reflect on images once in a while but did not think about them often as I was so focussed on the care of my cf. When I would get down or felt like fighing CF that is when the vision of my cf came into play.

Thanks for responding Emily.

 

[amber682]

As you know, I don't have CF, my son does. I sometimes envision it
as a storm cloud hanging over our heads, and when he's dealing with
some sort of exacerbation is when it's pouring on us.

 

[thelizardqueen]

I envision CF as this black, dark thing inside of me. Like something that hovers in my lungs. I don't see it as something physical, but rather just something I know is there, but I can't see it. If that makes any sense.

 

[JazzysMom]

I cant really say I imagine or create or envision it in any way. I am just like Emily. Its CF & thats it...good/bad days!

 

[Allie]

I'm not the one with CF, but I always pictured it like a panther, stalking us, waiting for the opportune moment to strike.

 

[coltsfan715]

I never really pictured my CF to be like anything in particular. I know for a long time I always thought the doctors would come to me and say surprise - we were wrong you don't have CF. Even though I was going in the hospital and getting sick. I never wanted to believe it.

When my friends started passing on I realized this IS real. Then I just took a look around and realized how strong - mentally and spiritually - this disease had made me. I started realizing that not everyone could handle the crap we deal with having CF. I was about 11 or so at that point and I started looking at having CF as MY CHOICE - or like I was saving someone else - like God let me take this burden so others that can't handle it didn't have too.

Now I see it as a huge inconvenience and frustration when I do everything I am supposed to but continue to get sick and continue to get worse. Then I have those moments where I say - I am strong because of this and I am dealing with this so others don't have to. If someone has to have CF let it be me - I can handle it. I know that may seem silly to some and many will probably think YEAH RIGHT I will give this up in a heart beat, I would also many and most times. I just like to look at it as MY choice instead of a sick joke. It empowers me in the situation I guess you could say. It helps me to not get so down about it at times when I am sick or not feeling well.

I also have those moments where I want to give up cause I sometimes get so sick and exhausted - but then I think of CF as a pain in the @$$ person I can not stand and how if it were an actual person I would not let them win that easily - so I keep fighting out of spite. Yes for those reading I am stubborn and bullheaded.

I don't know if that was really what you were looking for in an answer, but yeah ... lol hope that wasn't too long.

Lindsey

 

[EnergyGal]

thank you all for contributing. For some reason looking at a problem in another perspective has helped me in life. wether it is consciously or subconsciously my mind is always creating something.

 

[zoe4life]

Risa,<br>
<br>
I think of CF as a monster...always attacking. Either quietly
waiting for the right moment or just slowly eating away. I also
think the analogy that Jaime had written was quite correct about
the boxing match. Not too optimistic, I know. Sorry.<br>
<br>
Jada<br>
Zoe's mom

 

[mcbrash]

After my son passed away last year at the age of 27, I found some drawings that he had done of what he thought Cepacia, looked like (Matt had cepacia for some years). This is kind of a gruesome picture and if anyone would like this taken off I will gladly edit it and remove it, but seeing as the topic came up, I really wanted to share this with you.

Sandy

 

[EnergyGal]

Hi Jada

I was thinking of Jamie a few hours ago too. Thank you for mentioning this. I have read your Blog. You are an amazing Mother.

 

[EnergyGal]

Hi Sandy

Thank you for sharing. Your Son was a great artist. I am glad that you posted some of his work on this site.

I believe reading about how others view their cf and how they actually picture it can be helpful. We all dream and our dreams are often reflections of some of our feelings whether it be day dreaming or when we sleep.

Sometimes my analogies of CF came at the most difficult times in my life.

When I was really sick I pictured this big monster that was helping me to breathe. He would pick out the mucus with his fingers and throw it away. Something weird like that but it was a waking vision that helped to relax me. Strange but it worked.

 

[JennifersHope]

I have always pictured CF as a lie in my life. Ha I know that sounds dumb, but since I was dx, I keep waiting for them to say.. OOPS just kidding... I don't know why it is so hard for me to accept. I am better about it but still don't totally accept it. I guess I think that if I accept "it" "It will get the best of me.

Sometimes I feel like I am walking on a land mine. Like one step in the wrong direction and KAPLOOOOOOOOOW Ivs and hospital for me. I always wonder when I am out all day one day if I am going to pay the price the next...

 

[blindhearted]

I dont know if I have invisioned my CF as anything, but I have often explained it this way.... (the following explaination may sound weird, stupid or just plain corney....but has often worked for people who ask about how can I live with it or how can I be so strong. I hope it makes since to someone).

This is what I say :

Imagine you are running a race. Just you and one competator. At the end is a million dollar prize, all u have to do is win. You can cheat, take short cuts, do anything you can to derail your competition....would you do it? (most of the time the answer is yes). Okay, well what if I told you, no matter what you do, how you cheat, short cuts you take or obsticles you put in the competitors way, you will not win. Would you still do it? (most people will answer no).

I explain : Well that's what its like with CF. I'm in a race for the million dollar prize...in this case, life. Each day I cheat, take short cuts and throw obsticles in the way by doing my treatments, taking medicine, doing CPT, going into the hospital for tune ups, and one day, maybe a transplant. I do what ever it is I feel I need to do to stay ahead of my competition...CF. However, I know in the back of my mind that I will not win this race. Everytime I get lazy in the race and dont "cheat" or take my "short cuts", then CF gets a little closer to winning. So I run this race anyhow...knowing the outcome...to stay ahead, until the day I just cant run anymore. (I have had people agree and say they understand it when I put it that way.)

 

[kayleesgrandma]

You guys make me so proud to "know" you! You all carry this "monster" at your doorstep--for that is the only way I visualize Kaylee's cf--and yet everyday you go ahead and open Door No. 1--knowing what's on the other side. I am amazed every day at this whole "new" (to me) community of you all, and I wonder what it must be like to have been here for the last 10 years. Your posts constantly amaze me at the insight you have--this was an interesting question Risa.

 

[EnergyGal]

Thank U Terri. I am glad that you learn so much from Others. What a great Grandma you are. I hope Kaylee grows up just like you.

Danyell, what a great picture of CF you have. When I had my second transplant I was incredibly frustrated in the hospital because I had set backs (when in comparison of my first transplant it was night and day) and If I did not know any better it would have been more tolerable to think straight.

One day this scenario popped into my mind. When I felt I was at my weakest point, I imagined I was a race horse in training. I could not get on all fours but could only stand up on two legs but could not go forward. Everytime they would give me a med, I would invision this race horse that was being trained to race. I felt this vision was extremely powerful in my healing. I would hear the theme from the movie "Rocky" flood my mind and each day I felt stronger and stronger and nothing was going to keep me down.

When I was able to walk I no longer saw a horse, I saw myself running in the race of life.

I envisioned similar to you a finish line (the finish line of life) and I was not going to have to finish the race but I would never stop and when anyone would bother me and say something to distract my thinking, the vision of me running would always come into the picture while others would throw dirt on me (dirt was obstabcles) nothing would stop me and it never did. Now I can actually run.

 

[EnergyGal]

Thank U Terri. I am glad that you learn so much from Others. What a great Grandma you are. I hope Kaylee grows up just like you.

Danyell, what a great picture of CF you have. When I had my second transplant I was incredibly frustrated in the hospital because I had set backs (when in comparison of my first transplant it was night and day) and If I did not know any better it would have been more tolerable to think straight.

One day this scenario popped into my mind. When I felt I was at my weakest point, I imagined I was a race horse in training. I could not get on all fours but could only stand up on two legs but could not go forward. Everytime they would give me a med, I would invision this race horse that was being trained to race. I felt this vision was extremely powerful in my healing. I would hear the theme from the movie "Rocky" flood my mind and each day I felt stronger and stronger and nothing was going to keep me down.

When I was able to walk I no longer saw a horse, I saw myself running in the race of life.

I envisioned similar to you a finish line (the finish line of life) and I was not going to have to finish the race but I would never stop and when anyone would bother me and say something to distract my thinking, the vision of me running would always come into the picture while others would throw dirt on me (dirt was obstabcles) nothing would stop me and it never did. Now I can actually run.

edited to add: I remember this accupuncturist who treated me one time during my waiting period and he told me to envision my body in a peaceful way. I remember seeing soldiers on a battle field dropping their amunition one by one falling down to the ground to relax. There were palm trees and an ocean in the background.

 

[kayleesgrandma]

Risa, your runner vision reminds me of an Oprah episode where a woman with cancer (reacurrence after years of remission), used the movie "KILL BILL" to battle her cancer. She named her cancer "BILL" and pretended she was Ulma Thurman kicking Bill's a**. She says she used the "Rocky" theme also. It worked, the cancer is back in remission. There's much to be said about the saying, "If it doesn't kill you, it wil make you stronger!"

 

[EnergyGal]

Thank you for sharing that Terri. I agree with your philosophy.