how do you measure success?

heyooo!! first off im going to be starting a series of video blogs, if theres any topics youd like me to cover or things youd like me to talk about leave them in the "leave me love" section or private message them to me!! also if you enjoy my blogs i highly encourage you to follow my instagram at yolksonyou24 and/or my twitter also theyolksonyou24 or even keep up with my day to day on my facebook page living breathless in the windy city <3 aaaaaand back to our regularly scheduled babbling!!


what do you picture when you think of success?

to me success isnt measured by the money in your pocket or how many cards you have in your wallet. your not better than another person because of the possessions you own. one life is not greater or more important than another.

growing up with CF this was fact. this was truth. my successes as a child were sometimes as simple as running in a game of kickball, that was hige! my successes as a teenager were staying out of the hospital. my successes now are far and beyond anything i ever dreamed id accomplish and even though i cannot work, i cant go to school, and i cant contribute to my household in many ways my life is just as important as every other life on this earth. i am extremely successful in life because i take it for what it is and i dont give up on it.

i mean look at me! talk about success im alive. im 26 and im alive when at birth the average age of survival for a person with cf was around 18 years old. ive been through the ringer yeah but im here, no amount of money can top life. dead men dont need cash or credit cards. a successful life is filled with experiences, which ive had plenty of. im not successful because i have a high paying job and live in a nice apartment but because ive never taken a day for granted. when i wake up i inhale as deep as my lungs will allow. i fill my chest with air and with each expansion of my rib cage i smile because i have one more day. i can fill it however i want to and lately ive decided to fill my days with a new kind of success : making an impact.

The thing with my disease is that its terminal. yes transplant will extend my life but it wont take away my cf. ive heard a lot of people say that they dont fear death they fear being forgotten. they want to make a difference. they want to make an impact on the world and leave their mark before they go and i do too. Aside from my work with Aleppo ive been working very hard for the CFF. every year i renew my team for the cystic fibrosis foundations annual great strides 5k and ive put my all into it this year. (not that ive slacked in the past weve always done well) but im really going for it.

Sitting at my computer making phone calls setting up events while also putting together a humanitarian project is exhausting and tiring but ive never been happier. i feel like im making a difference in the world again. so heres the word of the day. i feel successful.

no matter what you do please dont underestimate yourselves. dont underestimate the power you can have in the world. with illness its easy to feel like a leech but just by living your life to the fullest, doing what you can to help others who need it, and realizing your own personal accomplishments matter you are a success.

sitting ducks

they say positivity is key, we need to look forward we need to look for the light in the dark of the situation. i always try to find the silver linings. i close my eyes and i list off the things i have. i list off the people in my life who have stood by me through thick and thin. i take myself back to moments in time when i didnt think that id ever be that happy or that content but there is still a darkness in my life that creeps in like smoke under the door of a  burning building. my room isnt on fire but the smoke chokes me and the windows, stuck shut, make me feel like theres no escape. we are not stronger than the rest of the world we just have no choice but to continue on and do what we need to do to live.

this morning waking up i felt an annoyance that rolled over from the night before. my medicines cause havoc on my mood. i can cry and i can laugh in the same 5 minutes. i can be so angry i feel the pressure build up until i want to explode and i can hit lows that i didnt think were even possible. i am content at times, although lately those times have been a bit further apart. my self love is fading as my body image changes. weight gain and moon face makes me hate the mirror, getting dressed can cause stress as my closet full of clothes stretches tightly and jeans dont zip up like they used to just weeks ago. this is the ugly side. this is the side i dont normally post.

my sister once reminded me that facebook is a snapshot of life. its a glance into others worlds and its not accurate. people will post what they feel proud of or happy about you dont see the tears and you dont see the crushing depression where they sit in bed for a day. you see the smile in a hospital bed when friends visit during the day but not the tears that come at night when the loneliness creeps in.

today is a hard day and i dont feel like sugar coating it. i feel like screaming at the top of my crumbling lungs but at this point i dont think they could even handle such a feat. i need new ones, but the hoops i need to jump through are getting smaller and harder to fit through. im currently still inactive due to said hoops and it scares the hell out of me that im not even just waiting but sitting. im a lone duck in a clear pond with a rifle aimed right at my head and i cant do anything about it.

transplant is my last option. im end stage. my life expectancy is under 2 years if i dont get lungs. its scary and im scared. being on hold makes it worse. my anxiety is through the roof. nobody tells you how emotionally hard this is, you get folders and books and info packets and attend classes but nobody tells you how draining waiting for an organ is on you.

like i said, im not stronger than you. im not inspirational. im living my life and trying to extend it as long as i possibly can but there are days where i wish i could push a button and end it all. hospice has crossed my mind. im tired. im depressed. im barely hanging in because i want a life back where i wake up with energy and take on a day. i want to have a job i want to have a family i want to live like the lot of you. my stubbornness is my lifesaver, but its not extraordinary. its not that im some sort of hero for going through it all.

rant over.

there are very few people who are good at waiting. patience isnt a quality thats commonly found, especially in todays world things are so fast. traffic, slow Internet, people strolling down a sidewalk can put a city walker into a rage! waiting for your food at a restaurant or for a package to come in the mail is almost anxiety inducing to some......can you imagine waiting for a new organ??

ive never been a patient person, i drive too fast when i have nowhere to go. im not in a rush to get groceries but i speed down higgins like my life will end if im stuck behind that prius for one more second. i dont know why im in such a rush. when my facebook doesnt load fast enough or my food takes too long to cook its awful to me, and ive spent the last year of my life waiting for my phone to ring telling me that there is a pair of lungs waiting for me. waiting for someone to tell me my life will never be the same because i will live longer and have a more fulfilling life.

however ive just received news im too sick at the moment to receive this call. i was put on hold until my meds are lowered and my multiple infections are under control. this is a crushing blow for an inpatient patient.

when you cant work or go to school theres not a lot to do with your day. i spend a lot of time sitting in different spots around the house, reading, watching bad tv, watching good tv when luck has it, waiting for friends who have real lives to get off of work and hope they have a free night to hang out. ive began going ot church more for the community and social interactions and structure than the religion, looking for classes that dont cost and arm and a leg that i can take to get me out of the house.

im waiting and thats all i can do. i cant make my lungs or my other organs cooperate like id like them too all i can do is hope for the best and its beyond a doubt the most difficult thing ive ever had to do. knowing now that i dont even have hope for that call to come in (at least not right now, ill get back on that list im very determined to do so and these are just infections, they can be treated!) its even harder. it drags the wait on and it prolongs the anxiety.

i admire the people currtently waiting and the ones who have gone through the wait. this is no easy task and those who have to experience it have strength in them like nothing else. ill be here hoping for the best, but a little crushed at the moment.

im back baby and ive got some views on the pain killer game

So my absence is hopefully ending now, its been a rough few months total but im on the mend and feeling better than i have in a long time!! Whatd you miss?? now a whole lot to be honest, lots of doctors appointments and the usual CF life. Some bigger ones are that im being evaluated to get gerd surgery to fix my acid reflux and also getting my wisdom teeth pulled, so those are some fun procedures to look forward too that hopefully will go smoothly as ill be knocked totally out for the whole lot! smooth sailing. i also seem to have a lot of swelling in my sinuses and were gonna start on some steroids (a higher dose..joy) and see if that helps, if not were considering another surgery to clear out those top sinuses again. but till then more debrievements and just trying to keep things clear!!

on the fun front ive gotten out a few times and had some nights in just having dinner and sleepovers with friends, watching movies and what not. i have to say the fact that i was able to attend the bridesmaid brunch for my best friend and daisy that you all know as katie was probably the highlight though! she got engaged recently to her boyfriend jim and the wedding is set for next september!! weve all been waiting for this one i think!! it was phenomenal and delicious and i had too many mimosas so it was a perfect afternoon! it was nice to get out with some girls and chat and eat, it was at alittle french place called nellcote and i had lobster hash which is now my new favorite benedict in the city! she made us beautiful bridesmaid packages with a personalized bottle of champagne and 2 bracelets which are gorgeous and well all wear them at the wedding )which im now under pressure to not loose!!!)

also i got out to the pumpkin farm with jake which i was so upset i had to miss last year it was great to make up for it, also the weather could NOT have been better for us!! i went a little crazy feeding the animals and petting the giraffes but i held it together pretty well haha. he has a few of my favorite pics on his phone so i cant post them right now but i fed a little kangeroo and a girafee and it made my life pretty much complete!! i got a few small pumpkins and love the little fall look it brought to my living room!

ive been feeling like myself more and more i cut my hair a bit and redyed the mermaid magic into it!! i feel way more like myself!! i odnt know why growing it out was ever even an option, not having colored hair just felt weird to me!! im having more and more days where i feel up to getting dressed and ready and doing my hair and makeup and making cute outfits (with the clothes i fit into....thanks water weight) and all in all id say im doing well. last i heard im still second on the transplant list so were still waiting on those lungs. im still using 2 liters, 3 with activity, and also i started cpap overnight and have been sleeping better than ever. all in all things are good and i appreciate all the love i got during my break as i didnt have the energy to keep up on posts.

on to my post : painkillers. this is a touchy topic for some, as the chronic illness community experiences such vast differences in levels of pain and needs for medicines to control it its a wide topic. I originally got going with this a few weeks back when i started needing more pain management myself and then tonight i watched the latest episode of John Oliver and it was on, you got it, opioid addiction. Some of the things i totally agreed with and were spot on but he did have a few misconceptions and annoyances to say the least.

starting with my own deal, i began having severe chest pains from the amount of coughing i was doing a few weeks back (these meds can cause some serious brain fog so please excuse my timeslines) and i was put on a 72 hour fentanyl patch, hydrocodone for breakthrough pain, and then a cough syrup with codeine to control the cough long enough to let the muscles and organs relax and hopefully help stop some of the pain at the source. its been very successful im still using the patches and the hydros but im done with the cough syrup as i know how important it is to be able to cough the junk up out of my lungs and i cannot cough effectively when i take that one.

ive been weary of pain meds for as far as i can remember because of addiction in my family (to other things) and i didnt want my life to become like theirs where they are dependant on a substance, but i was also sat down with and talked to about how controlling the pain is important to live a life not only in comfort but to be able to exercise or cough hard like i need to i need to be pain free for the most effectiveness. if that makes sense...i really hope it does haha. when my lung collapsed i was on high doses of morphine, fentanyl, and dilauded, and oxy, and everything else in the book for 3 months and i did develop a slight physical addiction and needed to withdrawl from that which was very difficult and now makes me even more weary of taking these kinds of meds.

using pain killers is a personal choice, some people have a high tolerance and really like to hold out, some have chronic pain and its a big deal for them to go without pain meds and its important to them that they use them as little as possible. others have a small tolerance and what may be a 4 on the pain scale to me could be more like a 6 or above to them. its all different per person.

John Olivers segment was more warning on addiction than anything else and how opioid use leads to addiction of other drugs (he was specifically using heroin as his example) and it is true that these medicines are highly addictive and can be considered gateway drugs and even when used as needed and in situations where its totally called for it can lead to a problem. this brings me to trouble getting prescription pain medicines.

drug seekers are out there no doubt but the general population are legitimate patients seeking real comfort. its hard in an er setting to get such comfort because thats where the drug seekers go as a last attempt. it can be hard to look at the doctor and tell thim about a pain that he cannot see but is all too real and get what you need from him or her. ive had my share of doctors send me home on tylenol when the next day my transplant doctor had me rushed back in and put on a pain management regimen because she understands whats happening with my body and that i have a real need for relief.

the pain scale can be a big problem in diagnosing real pain because people dont understand how to properly read and use it correctly, im including a link at the end of my post about the pain scale and proper usage for anyone whos interested but again keep in mind that your idea of a 7 or 8 may not be the same as someone elses. ive always had trouble with pain and ill continue to have trouble with it, not just with the feeling of pain but the availability to get medicines or relief due to addiction concerns and people who abuse the system. im just happy that for right now its controlled and im getting the care i really need and its helping me get my life back on track!!!

it all boils down to the individual patient and the need for the med vs the risk of the addiction and also the doctors ability to deal with the addiction should it form. i was weened off properly and all was well.....it takes a team and a lot of understanding.


pain scale ratings

the invaluble friend.

today im thinking about friendships, specifically friends of or in the chronic illness community. friends are different when your chronically ill, they need to be a certain kimd of person. not that there's one type of person who's better than another, just in certain situations one needs understanding, care, and patience and these are traits that can be hard to find. 

i unfortunately see many posts on my news feed or in different groups im a part of where people feel left out of life because they cant always keep up. this can be heart breaking, not just the feeling of being left out of an activity but because its due to something so far out of your control. i myself have had many experiences with this feeling and its not one i wish on anybody. I think the idea of being sick for most people is a few days on the couch with nyquil and soup, but they can push themselves when needed. things get complicated when your every day is hard and when your sick its almost intolerable. for example, in my own life i like to go to dinner and movies and things like that, but i have a hard time doing these things later at night because im so tired, the work that my body needs to do to just get through the daytime is exhausting and so i either have to miss out on plans, or i go but i cant really be the energetic person my friends knew me as before. (ive now fallen asleep at multiple outings and cubs games.....). Theres also the times when i know i should stay home but my FOMO gets the best of me, i go anyways, and end up worse off. 

people within these communities are (almost) always there for you and supportive of this because they understand wholeheartedly what being in that position feels like. its a blessing and a curse to have so many people understand you and your situation but not be able to see them or hang out with them and be around people who really get your situation. the outpouring of support at times from these communities can be overwhelming. the love from complete strangers is mind blowing and very humbling. Before i joined any of these groups i felt very alone in my diesease and my situation and finding out that there were so many people walking in my shoes was something ill never take for granted. the people ive met online have become life long friends. 

there are exceptions to this situations where one might feel left out. there are people out there who see you for you and not your illness. i have a best friend Katie who would take a sleepover at the hospital with me over a night out. painting our nails and watching our favorite shows and having lattes in the morning can make a night in the hospital feel like a normal night at home. the fact that shes totally fine with hanging out here and missing something else going on elsewhere that might be way more fun is not something that is lost on me. i have Jake, a man who i used to date and while things didnt work out due to our lives moving in different directions he has continued to be my absolute rock, doing everything and anything to keep my healthy and happy. hes always down for a movie night on the couch in lou of a few drinks at the bar and a home cooked dinner when going out just isnt in me. hes one who will always invite me out and make me feel included in events even though he knows theres a pretty good possibility that well both end up spending the night sitting down and not really in the action. i have a frind Nick. a man who ive known for years adn years who never hesitates to bring by food when im sick, cheer me up with his goofy animals he always brings me, and never once complained about pushing me in a wheelchair all over comic-con for an entire day just so i could meet the weasely twins hahaha. he has accepted every part of me and my illness the good and the bad since day one and to this day i can say hes definitely someone i have total trust in to always be there for me. hes never wavered. i have my little sisters, my best friends in the entire world, and not just because theyre family but because i can feel how much they love me every time i see them (which is much to far and in between). i have my older sister who never ceases to mother hen my ass when i need it, cook a meal when im sick, help keep things clean, and help me manage my appointments and meds when my brain fog kicks in. shes always inviting me to dinner out with friends and did i mention shes an absolute blast to hang out with?? i can always count on laughing till i cry just about anytime i hang out with her!!! my point is that there are good people out there. the invalubles. the ones who make this life worth it. 

on the flip side yes, theres the partiers. the ones who stay out too late and take shots like they contain the key to immortality and if you cant keep up the invites out become far and few between. it happens but dont dwell on it. see it as an oppertunity. the stress that it caused you and your health yo try to keep up with these people was not worth it. nobody is worth your life you are far too important for that. in life people come and go, its inevitable. find peace with the support and love that you do have and hold on to it dearly. focus on the good parts of life. focus on the people who love you and the people who are always reaching out to you. those are the ones that matter in the end. (but by all means if the party pants fit for the night put those suckers on and wear this shit out of them, we all deserve a night out! even if its to remind us why we never go for nights out hahaha)

try not to get down on the days in the hospital with no visitors, even though thats a hard one to swallow, dont dwell on that friends who always seems to be too busy for you, shes not too busy for you shes just busy with life i almost guarentee it. please try to not jump to conclusions and stress yourself out over your social life, it will pick up and it will die down you need to find the medium. this is somethingi struggle with as well im not just preaching about it for no reason i promise!!! 

your going to miss events, birthdays, holidays, anniversaries and weddings. your going to miss a lot. its your life, thats how it goes, its not fair in anyway, but thats life, its never fair you just need to find those loopholes that make it all worth it in the end. remember its not whats on our table its whos around it. mine is filled with love, once i stopped to notice.

you got me....im sick and im lazy

The word lazy has always been a big deal in communities of chronic and terminal illness. to these communities its a word thrown around by people who have no understanding of the illnesses that we deal with on a daily basis. Im not just speaking about those effected by cystic fibrosis here, but people suffering from any chronic or terminal illness. theres a generalization that were young, or we look healthy, so we must be just fine. That we dont work or go to school because were simply using our diagnosis to get out of being a contributing member of society and we just want to lounge around day to day watching television and using the governments money to buy our way through life.

we fight the term lazy and make grand statuses and announcements about all the hard work we do to just make it from one day to the next, we feel the need to defend ourselves from the misunderstandings and the negative comments aimed our way, from people who two minutes prior to shooting us down posted some meme about how naps and pizza are life. 

well here it goes. im sick, i dont work and i get aid from the government and sometimes, i am extremely lazy. 

let the backlash begin. 

im saying this because its true, sick or not sick we all think the napping netflixing and loving tacos memes are all about us. people can work a 40 hour week and on saturday and sunday do you think theyre the epitomy of community service and all things good?? no. they hang out with friends, catch up on that show they love, toss a few back and relax. yet we feel the need to constantly be reminding everyone how hard we work every single day and we are never ever lazy!!! 

stop. just stop. 

you dont need to prove anything to anyone. your allowed to wake up one day feeling perfectly fine, your illness isnt making you feel ill at all and all you want to do is binge the whole season of "stranger things"(no seriously you should its a great show) and eat your way through any and all things delicious in your house and you should, you should do it and you should not have to explain one goddamn word of it to anybody for any reason. 

the need to explain what we do and why we do it has in a way taken over some of our lives. We feel guilty or we feel like were worthless for not being able to contribute, the struggle is too real sometimes. i hope you know you matter, to the people who love you you matter. to people who know you you matter. to people online in these communities you matter. and all of them know your doing the very best that you can. let go of the need for the approval of some idiot who thinks you can do better (keep in mind they cant be too happy themselves if they need to tear you down to make themselves feel better....) and just know your doing the best you can. and while you dont go to a traditional job you work your butt off everyday. so sometimes, yeah, you deserve to eat a tube of pringles with a stuffed crust pizza on the side and not move for a stupid amount of time. you earned it.

 

to the doctors who know it all and the patients who live it

After being admitted on Monday morning ive had the same issues i always have when im here. orders for things i dont need or use, medication mix ups, and the worst of the worst-bad allergy management. I was laying awake last night (half clawing my dressing off and half being super careful not to cause its the only one i have that i can semi tolerate) i started to think about why a certain person on my tx team isnt really doing much to help get me the relief that i need and i came up with this.

I like to use a comparison of students studying say, spanish, in high school or even college. the doctors and nurses are like those students. studying formal language and dos and donts of a culture they've never seen. they watch films of life in Spain that were made in 1992 with horrible patterned t-shirts and over excited kids giving thumbs up all the time. worksheets and text books tell them everything they need to know and that information is gold to them. then there's us, the patients. we're the students who take a summer abroad in Spain. we personally feel the weather, the energy of the country, the feel of local life. we pick up the day to day language and lingo and learn expressions. we live and breathe it and we place ourselves in the middle of it all and that type pf personal experience is more valuable than anything a classroom could ever teach.

tie this in to life with a chronic illness. my doctors have spent years and years studying the medical field and cystic fibrosis, they know a lot, I give them credit for that, but they've never been immersed in the day to day c.f. life. I'm the student abroad, I've lived this life since day 1 on this earth. I know the books and I know the definitions of my disease but most of my knowledge comes from experience. I know my body inside and out. I know what to expect from every medicine I take, which ones will give me what side effects and which ones I can't tolerate. I know when my body needs iv's and I know my allergies and I know what to do to fix them. I'm not a textbook I'm an individual with individual needs. all I need is an open mind to hear me out.

it's rare to find a doctor who also "studied abroad" and understands that people living with illness on a daily basis, not just c.f. but any chronic illness, probably knows just as much if not more than them about the disease in question. we know what we need. what our bodies need to get better. we know our highs and lows. 

i believe a big part of the issue is that doctors tend to get big heads. they have a professional degree so when someone comes walking in and telling them what needs to be done its almost a bit of an insult in way. theres a power struggle between the patients and the doctors over who is right and who is more qualified to make decisions and unfortunately the doctors win every time, because of said degrees. (which all spoonies should totally have cause were pretty damn qualified to know what is and isnt good for us haha)

my specific reason for this is due to over a year of pure frustration and pain from allergies to both adhesives and cleaning agents. by the end of any 2 week course of antibiotics my chest is red. covered in blisters and bleeding, looking almost like the skin of a new burn victim. the allergic reactions i get are slowly getting more intense the more i need ivs. over the course of 1 year we've established that a dose of benedryl doesn't cut it. my skin falls off to the point that I'm left with scars. my arms and chest covered in little dots from where my skin has burned away under the dressing meant to protect me. hydroxyzine helps but still my chest is still torn up. iv benedryl is the only time I've felt relief from the constant itching and burning and it's frustrating that my nurse practitioner refuses it to me every time, because she is the student in class. her textbook tells her that it's a don't. however the one experiencing this annoyance first hand is in a constant state of discomfort. i can understand that her books tell her it has addictive properties, and it makes sense to be cautious. i have a fear of addiction since ive seen how it ruins lives and the lives of loved ones around you through first hand experience. i am slightly confused why with any pain they feed me morphine and norco like its water yet this one is so far out of reach. (id take pain over itch any day, pain i can handle. a persistant throb is more tolerable than intense buringin that keeps me awake till all hours.)

I know many of my spoonie family has gone through similar situations. they feel ignored or uncared for, they are labeled drug seekers when they go into the ER. their symptoms are not taken seriously. it's an issue that people in the medical field need to be aware of. 

there are also always 2 sides to a story and on one hand i understand the uncertanty (especially in an er setting) where drug seekers do tend to be an issue, however if your patient tells you specific issues, or tells you they have a condition you should either get someone who knows more about it or do a little info searching on your own. we need to start being treated like people who matter, whos symptoms are very real and despite the risks sometimes we just need to take that chance for relief.

I cannot tolerate these allergies. something needs to be done if I'm to finish my courses of treatment. i need a team that is proactive. I need doctors who understand that each case is different. I need a team to look at me and my personal needs and treat them personally. c.f. never had 2 cases that are the same, and so we shouldn't be cared for the same. Theres no reason i should have to put up a fight everytime i need something. 

classes teach you a lot. books are filled with info. but talking to a person and understanding what they tell you is just as valuble. gold, some may say. sick of the tape and the wires and the tubing, hopefully breaking out soon and my next post can be about something amazing haha, ill hang in there!!

I worry. i hope.

I wake up, my lungs hurt.
i worry.
sleep till 130, wake up again. gathering my meds i cough too much.
I worry.
my insurance isn't covering my home o2. I'm trying to fix it fast but I can't afford to breathe.
I worry.
my homework is really hard amd I have class and must stay on schedule to start I'm the fall.
I worry.
my mother has given up on being our mom years ago, yet it's somehow me and my sisters reaponsibility to fix her problems and life now.
I worry.
i dont get anything in class and I'm scared to hold the class up.
I worry.
I can't walk to my car, my lungs are burning like they're on fire and I can't inhale.
I worry.
I need gas but the $2 I'm my pocket won't do much good.
I worry.

I'm home and the stresses from the day, the day before, the day before that....it all adds up. all the worry. all the stress. it's piled on to me and I feel the small panicky feeling sneaking up. the one id get as a child stuck in my snowsuit slowly getting hotter amd hotter while I franticly put on my boots and gloves so I could lay in the snow, so i could get some relief from feeling like a small rodent trapped in the walls pf a burning house. I'm restless, im uncomfortable despite the mountains of pillows and warm blankets I'm under, with the cool air from the a.c. balancing the temp in my room perfectly.

anxiety sets in full force, I know it's late but I text a a friend, more than that, my rock really. the only person who knows how to handle these situations (which started last year during my 3 month club med stay). he doesn't judge. he says everything I need to hear and makes sure I'm okay before going to sleep.

my life, at this moment, is feeling out of grasp. the more I feel better the more responsibility I take on and I'm turn the more stress builds up in my life. clogging my head and running my thoughts a mile a minute. this doesn't help my health. stress is a serious medical problem. my anxiety and my depression are overwhelming. my Xanax use barely takes the edge off.

because I worry. and i dont know how to stop. this ia another obstacle I need to climb over to continue my journey to a better life. tonight however it's going to consume me and my thoughts. I will worry.

but then I will sleep, I'll wake up to a puppy, I'll make a big breakfast, I'll study hard and do my best to get the ball rolling on my insurance issues. I'll do what I can to eliminate the worry. I'll hope it works.

I'll hope.

ill hope.

ill hope.

ill hope.

ill hope.

ill hope.

and soon, the stress and the worry will calm. the anxiety will lessen. my mood wont flip on me out of the blue. ill be back to watching the sky catch fire over the lake that lines my beloved city. Ill be walking my dog down a forest path blissfully unaware of the world around me focusing only on the breath my lungs are allowing me to breathe. 

i wont worry.

just hope.

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.