On days like today I wake up, looked in the mirror and see a sick, pale, sunken eyed girl starring back at me. This isn't the me I know and it isn't the me I imagine I am without a mirror. I want to simply see the model, the Hooters girl, the Playboy hostess, the pageant queen, and the fun loving woman that I used to be. However, the woman I see in the mirror is not what everyone else sees in my photos. I see a weak and frail aging disease. It is hard for me lately to see through the sickness to see, "Sandi"
To most people I do not look sick nor do I act sick. I always have a smile on my face, always a positive tone of voice, and hardly ever let anyone see me as anything less than "amazing". I hide my oxygen to take photos, for the most part. I do have some photos with it on and I cringe when they are posted. I feel so ugly, I feel sick, and defeated by something that is impossible to fix, beat, or over come. I have mastered the brief second without my O2 that it takes to snap a photo! Out of sight and out my mind at least for a moment.
There is a HUGE issue that comes along with being able to do this and wanting to "look" like the old me. People see me as being healthy. I am talking about everyone who can see me on social media, family members, friends and those closest to me. Don't get me wrong I am not upset over this as it is confusing to see one thing and hear me say another. Seeing is believing and well if I look and act fine then there is nothing to say otherwise. Unless I complain or moan and grown about it and that is something I try very hard not to do.
☆What is the point in complaining about medical things that will never reverse themselves or get 100% better? Life is worth living and not being to lost in the sadness of your disease.
I do not speak for any CFer other than myself, but I am sure some can relate when I say it is hard for our loved ones to really see and understand how this disease is taking control when we put on such a strong front.
Laughing, smiling and having a "good" day for me is one of the most difficult things that I do each day. When I get home all I have energy for is, well nothing. Especially after a hospital stay, a long period of having to be in the ICU, on a vent, or having surgery.
I always snap back to a happy person, I smile while going under sadation and I smile while waking up from it. I always make sure I look "cute", and still try my best to push myself as far as I can. So, it is understandable when the ones closer to me and especially those who only see me via social media, to see me how I am on the outside and how I act in front of them to think that I may be making up what I am truly going through. Why? Because, I refuse to show how painful I feel inside.
Sometimes we are so head strong that people actually start to think that nothing is wrong and think that as a Cystic we use it to be "lazy". The funny thing is I really wish I was just being lazy. Life would be so much easier if it was just a fib to get out of doing things. Mentally it bothers me to not attend parties and events for my friends and families. I am always wondering if they believe me or if they just think, "Sandi is playing the sick card again".
Just because I look fine to everyone else, I am not fine on the inside. I am not breathing as easily as a "healthy" person, I just act like it. I do not sleep restfully, because my body is working in over drive to keep me alive! Making my oxygen drop while I am sleeping which is just scary really because no one monitors how low it gets while I am home. Just doing simple activities like showering, dressing, or even making my bed can put me down for the rest of the day. Hell, I haven't been able to throw a load of clothes into the dryer in over three years.
So even though I (we) look fine, smile, and have a great outlook on life, please do not assume that I or any other Cystic's are just saying something to get out of everyday activities.
☆I promise the majority of us wish with all of our hearts that we could do the things we used to be able to do without being completely worn down for the rest of the day.
I am also very stubborn as I refuse to ask for help when I normally need it. I don't want anyone to look at me as a disabled person, so I push and push myself to the point of actually making myself sick. I do know that once I put my pride aside and allowed my husband and family to help me with even the smallest tasks things have been a lot easier.
It is hard to ask for help when you are used to being strong and independent. Support from our loved ones is the number 1 thing that we all need. Even if for some reason you think that I may be "trying to get out of doing something" don't jump to conclusions. It only makes things more difficult and emotional for me or your CFer. I am sure others have felt the same way at least once before.
If you take anything from this blog and you are a caregiver of a sick person, someone with CF, or otherwise show them all the support you have. Make sure they know you are there when times get hard and if they need help don't question them or belittle the situation, simply help them, be there for them, and put a smile on their face!
Never down play a disease that you yourself are not fighting. Luckily with CF if you don't personally have it, you will never know the struggles we go through or the pain we are in just to get out of bed some days.
I Am Only Human,
Sandi
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