"the bubble effect"

i like to think of myself as a very carefree spirit, i know what i like and what i dont and thinking my decisions through was never really a strong suit of mine. spontaneous out of the blue was always more my stlye. trips for the weekend or a last minute concert ticket made my life exciting, and i loved the feeling of impulsiveness. i still do, with my cystic fibrosis worsening ive had to make many changes including the roll with the waves type of life i fell so in love with. i need to plan more carefully to make sure my medications and machines will be with me, i need to plan my days around medicine schedules and iv antibiotics, tickets and events come and go while i sit in hospital rooms wishing to be out in the world where i belong. now on top of that, lets bring the bubble into the picture.

The bubble has always been my biggest enemy while going through this transplant process. It never really used to be there, but seemed to grow around me more and more until one day i felt like it had completely encircled me, the air inside was stuffy and suffocating and the film between me and the rest of the world was constant. the more i poked and prodded to get out the more exhausted i became, the film streatched around me never breaking, but keeping me isolated and trapping the frustrations and anger i had inside with me.

the idea of being in a bubble has been an image many chronically ill can relate to, as our lives are often pulled in different directions due to said illness and the feeling of entrapment is almost eminent. the people who love us want the best for us and we cannot fault them for it, its a part of our lives that we should be so grateful for yet at times the frustration of it all boils over and we begin to resent the protectiveness. my main bubble blower is my sister. shes my rock, shes my one true solid support who would do anything and everything to keep me safe and healthy not just for transplant but in life in general. she is by far my favorite person on this planet which is why it makes it so difficult when i feel the anxiety rise up and i want to snap her perfect neck for trying so hard to keep me safe.


it may be a small thing, like my childish amount of giant fluffy stuffed animals that no near-26 year old should have in her bedroom but i am so in love with and refuse to give up, (a 4 foot giraffe?? lets be honest nobody is going to give that sucker up!) its one of my best friends goldfish that she left with me before going to zambia to work for the peace corps that i will not ever give up on or get rid of. morning glory is now my family until she returns. these things that collect dust or culture bacterias that can be harmful to me no doubt, but in the end are still things of mine that i love and i dont want to part with  these things. its another part of my life, be it material, and  minor, they are still a part of my life that i feel cf is taking away from me. these things are the wand dipping into the tub of soap, preparing to expand around me, they are small but they are restrictions on my life and decisions that i dont feel others should make for me. i want to be in control of what i have in my surroundings.

 then there are bigger things, more understandable things. take driving, we share a car right now and i had an incident in which i drove up on a curb a few days ago. i had a strange memory lapse and it was an isolated incident. i feel fine and its never happened before yet because its technically her car and since she doesnt want me driving i cant do much about it. this is when i feel the bubble begin to encase me and with it my freedom are vacuumed out and i am stuck. i am in my mid 20s and feeling like a child, told what to do when to do it and i have rules.

its difficult for me to take orders in a way from someone my own age, im an adult and i feel i should be making my own decisions and its very frustrating to not be able to do that. at the same time i recognize the love my sister has for me and her though process is not to treat me like a child, she doesnt want to control my life and tell me what to do but she wants me to be safe. and i love her for that. our problem is communication over these issues. were both stubborn and heard headed and can find it difficult to see eye to eye on many topics.

i can see the frustration in her face when i fight her on subjects like this, because in the end i know they are trivial. The grand scheme is that i am going though a very difficult process, one that i was well aware would take many freedoms from me for a time, but slowly i would gain them all back plus more. it will be a diffucult road to come to an understanding, post transplant with the steroids on high will be more than interesting and im sure days will come when we absolutely hate each other. but if she can take a minute to try to put herself in my position and think about how her life would be changed and i can take a minute to put myself where shes at and understand that whats best for me isnt always what i want or whats ideal for me i think we can work through this.

i never imagines the stress levels would be this high, but im happy knowing we can snap at a moments notice but come back together just as quick.

my bubble isnt going anywhere, it will get worse, as i get sicker her worry will heighten. shell have all the best intentions in the world and they will drive me nuts, ill hate her at times and shell hate me right back. fights will break out and oh what fun a roid rage fight with me can be!! however ill always be thankful that when my head is screwed on a little backwards shes there to stand her ground and keep me in check.

ill still fight tooth and nail for as much freedom as i can possibly get, it just wouldnt be me if i didnt. i will not lose myself to these setbacks.

Moments.

Heres a question for you, when is the line crossed between bad days and depression? At what point do you realize that maybe you arent moody? Maybe its clinical. Most importantly how can you fix it?

My week this week hasnt been spent sitting bed looking longingly out the window, and i havent once had my dog whine at me with his leash in his mouth waiting to go for a walk like the drug commercials depict. I dont take a pill and suddenly im playing with the kids and playing fetch at the park it doesnt work that way. I smile i laugh im me in every way from a bystanders point of view. Internally i feel nothing, i feel the world spinning away from me, i feel my friends creating a gap that slowly enlarges with each fake laugh i try to force out when were together. 

CF kills my lungs, it destroys my pancreas, my kidneys are shot and my liver is hanging on for dear life (although my days of parties and bar hopping probably had a bigger impact on that than CF ever could). I cant blame CF for this recent mental unbalance and constant need for reassurance directly but i suspect it played a part. 

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loving a Mississippi river view on a beautiful morning!

I have brief moments like driving through to Iowa for a wedding and passing fields of wild flowers that seemed to stretch for miles. Old farm houses that took me into daydreams of coffee on the expansive front porch bright and early. I passed river trails and nature preserves and was immediately engulfed in the pure contentedness i feel when walking through endless trees feeling like the only one in the world at the time. Listening to only the sounds of birds and the occasional crackling of sticks from something i must have startled. 

I have moments when i see my little sisters (which is too far and few between for my liking) and the laughter becomes genuine. Spending weekends being totally comfortable with who i am because while we dont see each other often i feel a comfort in being in their presence. I feel like they accept me and all of my quirks. "I like you because your so weird." said Jenny a few weeks ago, and i felt that i am weird, im different from most, i dont have the views and opinions of most and my hobbies and interests are not considered normal, yet this was the greatest compliment ive ever Enjoying a received

I have moments where one person can make me feel like a celebrity in my own little way. I have a best friends Grandma who was so genuinely excited to meet me it melted my heart right out of my chest. Enjoying a glass of wine and a conversation with her lifted me up in a way i havent felt in some time and i truly hope that i see her again. 

These moments are the ones that keep me on he ground. When my mind races so fast it could propel me straight into the atmosphere. Its going to be work. I need to be proactive and put myself out there, i need to surround myself with these seemingly small yet grand plans that lift me up. Pills help, im not saying theyre worthless but its up to me in the end. I know im strong, i know i have potential, and i know that when motivation strikes im unstoppable in every way. My last few weeks have been a roller coaster, but im never one to turn down a ride. I will beat this, i will persevere, and i will win. 

I guarantee this.

Were tired. Were exhausted. Were sick. We are NOT lazy.

Im tired. Im so tired i feel like my limbs weigh 30 lbs each. I feel as though the lids of my eyes are made of lead, and all i can do is fight to keep them open for a little longer. I inhale coffee and energy drinks despite the bad effects to be able to get a little bit done throughout my day. Im labeled as lazy. Sometimes the jokes are thrown around without thought and its hard to fault a person for making a genuine mistake, but it hurts. Real, physical, and emotional exhaustion takes over my body on a daily basis and heres what you need to know about it.

1) im not a lazy person. my bedroom and living room tend to reflect that of a poorly organized college student with clothing flung about, jewelry on random tables and nail polish bottles on every surface. The blankets are a permanent fixture of my couch for quick naps and times when i need to lay down and they almost never get put away. This sounds lazy, i could clean. i absolutely could im not saying i dont have it in me but depending on my day i may not have the energy for it. "the spoon theory" is a great example of how my body works on a daily basis and i urge you to check it out. It basically states that on any given day im allotted a certain amount of spoons, each equal to a task or chore or anything i might need to do that day and when they run out, so do i. i can no longer get the things done that i need to. Hense the clothing piles and the dissaray. sometimes its just not in the spoons.

2) when i make plans i make small plans not because i dont like you, not because i dont wanna spend all night living it up and going out but because my body literally cannot handle it. By 8pm i am usually spent (yes, despite the nap i took a few hours ago) and i need to go home and lay down. My heart and my lungs pump at such a high rate to keep my body moving it takes all of my energy to do even small tasks and outings. I need to wear my oxygen and recharge and let my body catch up to where im at. Breathing treatments need to be done to open my airways so i can get the proper amount of oxygen flowing through my system. My social life is barely there and believe me in not happy about it either. Im quite depressed to be honest thinking back on my days and nights downtown living like a 20-something should be.

3) i need to cancel plans. all the time. i make them hoping that ill have some energy to go out but i dont. i make plans to go to your house or go to dinner but i can barely muster taking a shower at times.This type of pure and utter exhaustion is overwhelming and hard to control, a cup of coffee will not solve it but i promise you that the second i feel well again i will raincheck those plans and be there for you!!!

4) most importantly, understand. try your best to understand where im coming from. My illness takes a toll on me that i never thought would be possible. i never imagined by body would need to work this hard to simply stay just enough afloat that i dont drown. I never imagined that one doctors appointment at 9am would mean spending the next few hours sleeping and hoping that when i wake up i can just get this one load of laundry done. I myself never saw a future on oxygen as common as it is. i never saw my friends leave simply because i can never go out, or when i do its mainly chair dancing and just talking because anything else is simply too tiring. Please be patient with us, its hard to have friends and family who struggle and to watch them go though that but its harder to be the one whos struggling knowing how frustrated the people around you are getting.

Lately ive had a lot of trouble with this topic. ive been so tired to the point ive lost entire days, my family tries their best to understand but sometimes the eye rolls and jokes come out and its painful to know what they think of me. It hurts to know they think i lay here for no reason while my clothes pile up and its hard to hear my niece jokes on how messy i am or how she constantly brings up the times i sleep till late in the day. i want so desperately to have a working body that doesnt need the rest that this one does. It crushes me at times, I can try harder, but i also know my limits. I know when i need a break.