So as we have seen COVID consume the news, social media and everyday circumstances we forget about those that had/have battles to fight long before COVID added a new hurdle. I am one of those persons. I try not to whine and complain about my setbacks, my daily challenges or my latest kidney stone coming down the pipe. I find people don’t want the truth. Social media is the highlight reel of our lives. Although I love a good spat between lovers on Twitter or FB lol, reading their comments on a a nice long thread, is very entertaining. I digress. My point is that if I told you all the truth about my life you would feel sorry for me, pity me, maybe be annoyed by me, maybe think I’m lying. I don’t know for sure but today I am going to go through my day, the good, the bad, and the really ugly.
I hate mornings, I hate waking up. My body has been lying prone all night which means my lungs that are full of mucous, are looking for a fight. And so my morning begins with a fight. I burn 1500 calories just waking up as my body goes into warrior mode to tackle a new day.
I sit at the edge of my bed for several minutes and just wait. I wait for a raging coughing fit to start my day with. Did I mention my lungs are full of mucous and while I was sleeping it all pooled in one place?? Yeah once I move, that pool spreads out and all hell breaks loose. I cough to total exhaustion and I am not even out of bed yet. See why I hate my mornings? From there I move into fight mode and start all of my morning meds. I sit down with a big glass of milk to take 8 different oral medications treating lung infection, depression, kidney issues, immune boosters… I swallow all those down and move into the living room for doing all my inhaled medications and insulin injections. I add to this a good hour of physio, either on the rower or with a thumping machine. All the while stopping to rage cough to help get what little air I have left into my lungs. The mucous that clogs up my lungs is responsible for trapping the bacteria in them that is slowly damaging them. At 25% lung function I am definitely running out time. All this takes a good three hours. After that I am exhausted and will try to eat some food and have a cup of tea, to feel normal for but a minute. I have an eating disorder created by the constant bombardment from birth, of having to eat as much as possible all day, everyday or I will die. My disorder is a form of taking control of an area that I can actually control. It’s not healthy. I will never eat the entire amount of anything. There will always be food on my plate no matter how good a meal is. It’s a mind f&^* and part of the reason I needed to get a feeding tube when I plummeted to 74lbs. back in 1998. Also the fact that I havent had an appetite since 1989. When you are chronically ill you are never hungry and with no sense of smell nothing can even tempt me into eating from the amazing smells of a pie or turkey. Eating is another area of grief for me. It is a chore and it gives me absolutely no pleasure.
I never feel good. I never think, wow what a great day ahead of me. I can’t wait to do something fun and productive. Never does that cross my mind because everything I do in a day takes effort. Going upstairs for a shower-work. Going downstairs for Christmas ornaments-work. Going to the back yard to pick up poop-work. Getting something out of my car-work. Some days I actually need to take my oxygen into the shower because it’s too hard to wash my hair without it. Nothing is easy for me. Even as I type this my back is absolutely killing me from hunching over all the time to cough. I am literally a live fossil from Pompeii. Hard stone. I am tensed up from the lung pain, the coughing and all the side effects of my meds. I have to tell myself to let my shoulders fall or stop clenching my jaw. Quite honestly I am a mess. I am a train wreck. I am beyond broken. I am on borrowed time. How my body can handle the punishment it gets day in and day out is incomprehensible to me.
Now in order to find some joy in the day I have to work hard in the areas that I can control. I workout, I walk, I row, I eat somewhat healthily, I am compliant with all my treatments and medications, I monitor my diabetes and I feed overnight to get 2000 calories while I sleep. I need 4000 to maintain my weight and more when it drops. Lung function and Weight are not mutually exclusive. If one goes down so does the other. Keep in mind all these things that I have to do are work. There is no joy in injecting insulin or force feeding myself 2000 calories.
Now you must be wondering, why the hell do I even bother? The outcome for someone like me with end stage CF is get a transplant or die. Dire and grim, yes it is. Both bring you to the brink of hell. I was born a warrior and a warrior never quits.
What you absolutely will not see on my social media is what I look like first thing in the morning, a trash can full of Kleenex full of mucous, stained pajamas from my feeding tube leaking, my house an absolute disaster because I am too tired to care. My bruises on my stomach and legs from all my insulin injections, the cuts on my fingers from trying to get open a vile of antibiotic, the hoards of nebulizers, compressors, oxygen tubing, medications, and packaging from all that crap. I need an entire closet to house all of my medications and machines. I am organized thankfully but there is so much stuff. You will never see me spit out a huge gob of mucous in public or online ever. It grosses me out let alone a normal person. When other CFer’s do it I literally vomit in my mouth. You wont see the ooze from my feeding tube in my abdomen when it gets clogged or pulled in too tight. I hate showing my feet because they are clubbed from lack of oxygen. The freak show continues all day with me. When I take a shower my hands and feet wrinkle to raisins in a matter of minutes, another CF thing. Oh and I can’t smell anything- bad or good. It doesn’t exist for me. It is a mind f*&% big time. I lost it after my 7th nose job(removing polyps not cosmetically fixing) I like my nose actually. You won’t see the blood I cough into the sink after one of those rage coughs. It’s dark black red and full of clots. You will never see me trying to blow my nose. Because of such low lung function I don’t have enough breath to blow out a big booger. I have to use tweezers to get that sucker. Yeah true story. There are no rainbows and butterflies in my day to day. I also have chronic sinusitis so if my lungs aren’t killing me my sinuses are on fire. There is never a point in the day where I am able to recognize feeling well. Fighting for a good 48 years have left me without wellness. The pain is the worst. The constant coughing is exasperating but I do have amazing abs. The fight is long and 24/7 and since I divorced it’s even harder. I have no one to help. No one to cry to. No one to hold my hair back when I’m coughing up blood. I have a furry girl who loves me to bits and knows that just lying at my feet while I get over the coughing fits is all I need. I like my solitude, don’t get me wrong but I did like having a partner. For 18 years I had that, I got used to it. Now 7 years post divorce I have found my solace and made my peace but it doesn’t mean I don’t want a new partner. Someday, maybe but as I stated above I am a wreck. I am not wallowing in self pity and I do not think that I am not worthy of love, on the contrary, I know I am a catch. I am beyond generous, trustworthy, loving, thoughtful, kindred spirit, soul mate level of qualities. I am just waiting for that extraordinary person to come into my life. I don’t have time for the Mr. right now’s. I’ll wait. So yes, I am alone but I am not lonely.
So my evening is very tiring, trying to stay alive all day is exhausting. Before bed I have to assemble my night feed in my IV bag and connectors, do all my oral and inhaled meds along with more injections, I have to do some sort of physio, which currently is rowing 1 km every night, and then I do all the other normal stuff like brush my teeth, wash my face, apply my Rogaine for women, and brush my hair. Oh yeah my hair is falling out due to all the harsh meds I have to take. It’s so very awesome for my self esteem. Then I finally get to bed, hooked up for my night feed, ready for the first raging coughing fit and then the several little ragers before I can actually go to sleep, on my side. I can’t sleep on my back because I will drown from the mucous in my airways and I can’t sleep on my stomach because I will regurgitate my feed. Then I will say a few thank yous to God and try to get some sleep.
My nights are just as hard as the mornings and I end my night with a raging coughing fit just as I lay my head on my pillow, absolutely wrecking me for the night ahead. My sleep is restless, filled with coughs, and trying to find that one position that will settle my lungs. The oxygen makes it worse. I wake up tangled up between my oxygen tubing and my feeding tube. If CF doesn’t kill me it will be that I strangled myself in my sleep. I breathe so often that I annoy myself with the crackling in each breath that signifies the hunk of mucous in the airway. 60,000 breaths a day for me versus the normal 15,000. The calories I burn just breathing is part of the reason I need 4000 calories. I cant wear headphones or ear plugs because my breathing is louder than the whatever I am trying to not listen to.
Now you’re asking well how about yoga, calming app, meditation? Something to find some peace? I would love to be able to commit to those things but after I do everything I have to for my health and whatever little time I have left for normal day to day tasks, I am spent. All I want to do is nothing but I can’t even do that. I have to move the mucous in my lungs so I have to walk, row, workout, do autogenic drainage, use my flutter all the time. Doing nothing is damaging to my health. I workout because I have to not because I want to. I walk because I have to. I row because I have to. I do night time feeds because I have to. 90% of the things I need to do in my day are mandatory.
During my day I try to clean the house, respond to emails, do gym stuff, do foundation stuff, do laundry, play with Cali, read, paint, colour…I have had my ears ripped off about 5 times a day as Cali steps on my oxygen or the tubing gets caught under a door. That actually hurts and I am actually stretching my ears off my head, for real. Right now I am spending a lot of time researching the virus, following the data, texting my docs, learning as much as I can. I can’t go out and I really haven’t since March save for the 60 days of glorious camping days this summer. I am usually somewhere hot at this moment. My one and only reprieve from my life. Well not really, CF goes with me of course, but being in a small bit of paradise gives my mind the opportunity to just be and enjoy the beauty and to be catered to for 7-14 days. I get a small boost of breath being at sea level.
So right now I am in lockdown. I am finding it hard to understand why so many people are dissenting and purposefully flaunting not following protocols. I find it so disappointing to see people write off the elderly and those with comorbidities, like they deserved to die. Not getting the virus under control is not about running out of room at the hospital it is about not having enough people well enough to run our economy. It is dangerous to let it run rampant, for everyone, not just us sickies and the old people. So very sick of being considered collateral damage to a virus that could have been kept under control if everyone just followed 3 simple rules:
1. Wear a mask
2.Wash your hands.
3. Social distance
Had everyone done these three things we would be living a relatively normal life right now. It’s the exact same thing as wearing a seatbelt. It really is not hard at all and it could save your life or that of your family members. IT.IS.NOT.HARD. My everyday life, now that is effin hard. I wouldn’t wish my life on my worst enemy. I just wish people who I thought loved me, loved me enough to wear the mask, wash the hands and socially distance but unfortunately I have found that some of those people do not in fact love me that much. And those people I would have taken a bullet for and now I have to remove them from my life. It’s devastating to me.
This virus may not affect you personally, yet, but it exists and if we all don’t collectively do our part as outlined by our scientists and facts, then we all collectively pay the price. I wish I had a choice to not believe the facts, to ignore the rules, to blatantly disregard these very simple guidelines but I don’t. If everyone thought that way we would be in the hunger games. I am thankful we live in a country where saving peoples lives trumps the freedom of not wearing a mask. We would never have gotten to the point of not being able to see our loved ones if people just wore the mask, that is the truth. Judge me for it, hate me for it, I don’t care. I don’t live in fantasyland I live in reality and right now reality really sucks. Ask yourself, is it really that hard to wear this mask? I’ll tell you what is hard, needing oxygen to walk a block. A little piece of cloth covering your nose and mouth is easier than brushing your teeth. It’s not about politics, loss of freedoms or being controlled its about protecting yourself and others, that’s it. I digress but I needed to get that off my chest.
On that note, I will continue to fake being well when in fact I spend my day in pain, catching my breath, laying in the fetal position from a lung spasm, throwing up from coughing too hard, and then starting it all over tomorrow. But I’ll be sure to post some funny photos of my dog so you have the illusion that my life is awesome! So that is the good, the bad and the really ugly on March 325th, 2020.
I have faked being well for far too long. I am not well.