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Chronic Snarkopolist Sometimes Sick is Ugly
It is five in the morning and I cannot sleep. Tomorrow I prepare and pack my bags to go to Atlanta and meet with my team specialists for tests and follow-ups; and some news. Frankly news I just do not wish to get even if it good news. Even the good news I do not feel I can take right now BECAUSE I WANT TO BE NORMAL. And normal people do not wait for medical news every two months.
Normal people do NORMAL people things. Like wish they could have two lovers. Or obsess about why someone does not call them back. Or maybe signup for online dating and then try it out. Normal people do not struggle with when or how to bring up their illness during dates. Normal people is such foreign concept to me I do not even know why I am attempting to explain what it is right now. I have not seen normal in so many years I would not know it if I saw it. I have not seen normal in forever. Perhaps normal never really existed.
I am over it all. I am over being sick. I no longer wish to HAVE ANY MEDICAL NEWS AT ALL. I want to take trips to cities to VISIT FRIENDS. I want to take trips to sight see. Perhaps I will even go back to see the places I have already seen and re-see them with new eyes. I want to pack my bags with something other than “what if my flight gets delayed a day or two, I will need these extra drugs to stay alive.” I want to put something besides extra medical supplies IN MY CARRYON CASE.
Many of my friends are having illness right now and need to fly across the country to see their own specialists. Some are too broke for their medical care so they are using the ER for stop-gap until they have insurance. Some are fretting about losing their COBRA and I get that too. It is odd how these things work. Another friend is on a vent and is dying soon. I might not make it back in time but our spirits go when they are ready. Life is like that. Should I leave death out of talking about chronic illness?
My new therapist recommended a book to me – “Dying Well” and asked if I thought often about my own death. And I replied, “Sometimes – but it is hard to navigate thoughts of death with the struggle to FIGHT FOR HEALTH AND LIFE. You sort of have to do one or the other and keep your focus.” I am not sure if she understood, but I bought the book anyway because I am around so much death and End of Life issues are part of my professional and personal life. Meanwhile – death is in my face too often to ignore and it sucks right now.
Sick sucks and right now I AM ANGRY ABOUT IT. So angry that last week I could only give you a fucking book review because my words were not pretty enough for print. I HAVE NO PRETTY WORDS FOR YOU. Some times sickness is so ugly and angry and fearful – this is all I can produce.
Most of my sick friends DON’T TALK ABOUT IT. They just deal with it. Some are funny- some make light of it. Many roll with it. I usually do too. But right now going back to the city I love feels like going back to where I failed. It feels like going back to everywhere I fucked up… I never made it. My city still swarms – yet I am going only to see how sick I am or if I need MORE MORE MORE treatments – MORE MORE MORE DRUGS. Can I vent MORE MORE MORE ABOUT IT to you?
I do not feel like a warrior right now. I feel like I am going home on my shield. I am fighting invisible illnesses with unknown experimental treatments. And right now I am more angry than I am hopeful. I AM NOT HAPPY OR JOYFUL. I have no words of wisdom or encouragement.
Sometimes – this is how it goes. Sometimes when people are sick THIS is what it feels like – even for the most tenured chronically ill. Sometimes you cannot sleep even with the help of modern pharmaceuticals. And sometimes you cannot FEEL GOOD – so you just allow the feelings to pass through you because you know that at least emotionally – you are functioning just fine.
It is just past five in the morning and I shall attempt to sleep. Tomorrow I will go to Atlanta and I will begin a week long team of specialists. And then I will celebrate MY LIFE by going to Dragon*Con. And maybe then I will have some pretty stories to tell you? Maybe I will come back with an attitude adjustment. Or not. Maybe sometimes we have to get used to the notion that SICK IS SOMETIMES UGLY TOO.
How about you? Are you ever so abysmally overwhelmed that you just cannot make light of it? Do you ever just need to vent? Has the overwhelm of your illness or situation felt too ugly to show to the world? I do right now. I’d love to hear your most overwhelming thoughts. I’d love to hear how you deal with them because I certainly feel too ugly for print right now. Thank you for being here.
I’ll see you next seek same time same place! Kisses!
Tags: chonic illness column, chronic illness affecting mental wellbeing, Chronic Snarkopolist Sometimes Sick is Ugly written by Melissa Travis, managing multiple chronic conditions and cancer, overcoming being chronically sick, sacrifices made by chronically ill patients, wanting to feel normal, young adults and illness, young adults with chronic illness
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23 Responses to “Chronic Snarkopolist Sometimes Sick is Ugly”
Leave a Reply to Lolly
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Well said. I have Hashi’s and MCS (multiple chemical sensitivities) I often get to places and I have to leave cause they are so toxic and that gets really tiring but I don’t want to have to stay home when I feel good enough to go to things. ALSO had cancer and have osteoprosis. I am 51 and have decided dating is just a hassle to explain everything as I am usually allergic to there body products and their houses. LOL LOL I almost cried at the post office but cause of a mix up when something didn’t get where it was going on time. I just want to feel good more then I don’t. Thanks for sharing. Keep up the good work.
Thank you for your sweet comments. It was a rough rough day when I wrote this. Adoring you for your love and kindness!!! Sending you MORE LOVE than you can know!! Keep writing in!!
muah!
x
Melissa
OMG… I love your anger and frustation!! Let it rip. Wush I had it in me when my “war” was a friggin battle ground. I was the one who just delt and tried to be positive. My battle still goes.. but “if” I had been better about the rants and vents… think I’ll start now cause all this “SUCKS”
🙂 Thank you Elaine! Isn’t it funny that we NEED PERMISSION to have anger or frustration. That we are so used to being meek and mild. MUAH! Giant hugs to you. It was a long and tedious week in Atlanta. I’m back now. Adoring you so much for your love and support!
xoxo
Melissa
OMG, Melissa, is it something in the air? A few hours ago I sent Katie an email venting with similar feelings and thoughts. I very seldom curse or send stuff that is RAW and uncensored, but I did this time.
I love you, your words, and your realism. Your words keep me upright and sane.
Thank you, thank you, thank you (bowing after each)
☮ ♥
Muah!! We do need to vent sometimes – we need people who HEAR US- we need to BE HEARD. We need to share and heal and bleed and heal and love and BE LOVED.
Yes. yes we do!!
Thank you so much for being all of this for me!!!
xoxo
Melissa
Yes.
At this very moment actually.
I feel your pain Melissa <3
Lots of love,
Annie
I am so sorry that you feel anything sad or bad right now. I’m sending you SO MUCH LOVE that you can feel better soon too!! Let’s keep each other and build each other up! I love that about this site. It is full of healing and support!!
Thank you so much for having me. I needed this. We need each other.
MASSIVE HUGS!!
xoxo
Melissa
Oh yes. Going back to the town where you “failed”? I SO get that. I left grad school with my tail between my legs. How did I go from being The Smart One to flunking out of school? Illness, though I didn’t know it then. And this year, I had to leave my town too, my job, my apartment, the few friends I had left. I live out here in the sticks with my parents now, dependent on them for every DIME, because I FAILED. AGAIN. I couldn’t make it work, do that bootstrap thing, just “put my mind to it” and overcome. I call it a strategic retreat, not a definitive defeat, but really? That’s spin. I had no choice. And I HATE it.
We need to vent. Not wallow- there’s a fine line- but there’s only so much that ribbons and Empowerment and Having a Positive Outlook can do. At least for me. Because the fact is, we wouldn’t NEED all that stuff (which we do) if chronic illness didn’t UTTERLY and COMPLETELY, with the power of a Dyson, SUCK DONKEY BALLS.
Have fun at D-Con. Do everything I wouldn’t. <3
MASSIVE HUGS. I love that we get it. I am so grateful for your sharing and your love and your words and your support. Thank you for sharing this with me.
And sucking like a Dyson is a HILARIOUS PHRASE. Thank you for that image too.
MUAHS.
Holding you in my heart and healing and loving that you’ve been so vulnerable and honest and loving with me. THANK YOU SO MUCH for your beautiful gifts!!
xo
Melissa
Dear Melissa,
Something weird is going on in the world right now. No one I know is happy. NOT A FUCKING SOUL. That includes me. All I want to do is vent, and guess what? I took my problems out on a piece of cheesecake today – that fucker didn’t stand a chance. It was only a matter of time before I got my slice, and I made that known last week.
I’m sending you good thoughts and love, and I hope you feel better soon. Thank you for throwing your anger out. Many people feel anger isn’t a productive emotion, but fuck, they’re wrong. Anger is the catalyst to CHANGE, unless you decide to live in it. Use your anger to push you forward, and keep getting it all out on the page.
xoxo,
Nicole
Nicole- How I adore you– and your gorgeous cheesecake story!! Muah!! You are the light of my life right now for your beauty and your writing and your honesty and your amazing way you just KNOW how to tell it straight!!
Thank you for being here and for helping SO MANY PEOPLE HEAL!! And for being here for and with me!! ADORE YOU!
xoxo
Melissa
Maybe there is something in the air. Hmm. I’d blame it on the water but I think we all drink from various parts of the world. The last couple of days has put me in a spot where I feel like a hipocrate. I try to be supportive of others, tell them to smile because it can only get better, but I just want to punch something. I think I’ve been searching for something to say, something that says it all and I think you have given that to me…….
“Sometimes sick is ugly”
I’m tired.
Thank you Melissa.
I am so glad that we are allowed to rest sometimes – or be sad – or just get it. WE GET IT. We’re going to keep going – we know it. But WE GET EACH OTHER. I feel so completely gotten today. MUAH.
I’m so grateful that you are one of the people who read this and responded. THANK YOU– thank you for being part of the support. 🙂
massive hugs!!
xoxo
Melissa
I’m blaming Mercury. Everyone, not just my chronically ill friends, is going through some really heavy emotional shit right now. I’m doing the best I can to roll with what the doctors and my medical insurance company tells be but it doesn’t make it any easier.
Loving you, holding you, Mel! You’re beautiful even when you feel ugly. xoxo
~Vandy
Dearest Vandy,
You are so deeply in my heart– you are so special!! You are so beautiful and amazing. Thank you for being part of this too!! We’ll all catch each other and hold each other through it!! Keep reading, keep writing, and keep healing with us!!
LOVING YOU SO MUCH!!
XOXO
Melissa
Melissa,
I really actually understand you this time. While I am feeling better, the realization that “how well am I?” will always and forever be in my mind… well it sure does cloud the joy. How can we feel fully “NORMAL” in world where normal is perfect? Who is perfect? I never was, but now I wish for it… I dream about it. I do not like where Graves Disease has taken my mind. Yes, I feel physically better, more mentally clear… but there will never again be another day without my wellness being in the forefront.
I wish you strength and peace, it is all we can hope for somedays.
Amanda
Thank you so much Amanda, you are SUCH A BEAUTIFUL DOLL. I’m so grateful for your kindness and your love. You are such a wonderful soul to write in with your support and love!! Let’s all keep doing this — loving each other and supporting each other!! Sharing stories heals! Let’s keep healing and writing and taking care of each other!!
I’m SO GRATEFUL FOR YOU!!
xoxo
Melissa
Melly-Mel,
By now you have probably had your tests results hope it is more promising news.
As for “Normal” I often ask myself why was I born not “Normal” why was I always different, outspoken, never afraid of authority or speaking my mind.. Normal to me is me and not the same as everyone else for if we were the same then we wouldn’t be unique to me there is no such thing as “NORMAL”.
Chronic illness certainly changes the way you deal and feel about yourself, we learn to adapt to it, although there are going to be those fucked up days when everything gets on top of you and how do we deal with it. My coping mechanism kicks in I either go quiet which some people fucking love or I vent and rage about things get it out my system, I prefer the latter because to go inward and let things fester has a way of bringing you down into the depths of hell and beyond. It’s okay to feel that way, it’s okay to have shit fucked up days when life seems so unfair and cruel.
I feel and hear you Melissa and know exactly where you are coming from.
Big hugs from across the pond no distance between us when you can connect.
Now i just wonder when I am going to get my fucking diagnosis for turrets.
Lollyxoxox
My beautiful LollyLol!!!
Your Dx for turrets will come when they slap a gag on my mouth for the same!! hahaha!!! I adore you so much!!! Yes- I hear you on the normal thing. I too have never been normal. You are such a trouper too. I’ve been waiting to hear about your diagnoses too– what of your tests for lupus and all the rest? Where have you been? What’s going on with you? How are you feeling? I’ve been missing you.
You are the light of my life somedays with your special brand of sauce and love and snark and wit!!! I know you are loyal to a sharp T!! And I adore you for it! thank you so much for being in my life. I’m holding you in my heart even if it is across the pond and back again my LollyLOL!!
xoxo
Melissa
Dear Melissa,
Traveling for all the wrong reasons. Take a break and watch the movie out right now “eat pray love”. Get lost in it like I did the other evening…..I went to the late show it is long and I got back home around midnight. There was so many layers to this movie that I was lost in thoughts unlike my own. It was a trip for the right reasons and I mentally packed my bags and tagged alone.
Allow yourself a break, learn the Italian word for doing “nothing”. Have a sweet cry instead of the ones we usually have. The tears are different and it is healing.
We try so hard, we with this fight. We forget to reward ourselves for all we try to bare…usually alone…and even if we have a few that hang around us anyway, it is still so lonely here and they don’t understand. The words if we can find them are another strange language that few of us know.
Be kind to your self. If you get good news be as glad as you possibly can. We know living in the moment is necessary. Everyone should, but “we” have a reason. If we look too far down the road we may see an end in sight. By staring there we might bring it sooner. Be very patient and time your thoughts with the grown of a flower…slowly, ever so slowly.
We know everything dies. Someone very healthy could be mowed down right in their tracks. Never even seeing it coming….Is that really any less fair? Maybe without suffering but gone is gone.
I have learned that I have a new “Normal”. The pain whatever is now familar to be and I am able to handle it better. Each time I experience a new bad spell I realize I have learned to live with a lot.
Melissa you sound young. Men in your life should love you for who you are right now. This movie I talked about addressed these feelings. Men love women. I have a handsome son who is 30. He is single but I know the women he has dated and dates. He doesn’t go for the “plastic” looking ones bone thin on the cover of a new issue. He has remarked to me that they do not interest him. What I do see a thread in the women he is drawn to are. Are not thin, are not dyed blond, are not the fanciest dressed. But they are REAL. Caring and sweet and a dash of vinegar!
Don’t worry, I can tell you are the kind that real men want in their lives. Thoughtful and understanding and they NEED them.
Take care and do try to enjoy the trip….you never know who might be sitting by you on the plane…..What is their story…..Ask them before you tell yours….xxxxxxxxooooooooLinny
Thank you so much for your loving words Linny!! Muah! I have heard good things about this movie and will have to check it out!!
I never compare illnesses nor do I compare deaths or pain or sadness. You are SO RIGHT about fair or when time is cut short. You are so right. Living in the moment is key.
Yes- being kind to myself is powerful. Thank you for this reminder. THANK YOU. New normal is also important. it is also ever changing when we are sick and every day we wake up to something new and someone new – new diagnoses and new illnesses and new people, new doctors, and new ways of living. NEW is the only way to BE present.
I’m sending you so much love for your beautiful message to me. Thank you for writing in- for sharing, for helping me heal and feel adored. Keep reading- keep writing – keep sharing – keep healing!!! We are all part of this beauty. Together. WE DO THIS TOGETHER!!
Thank you.
sending you so much love!
xx
Melissa
Melly Mel.
Your words are beautiful to my ears who wants to be fucking Normal wahjtever that is.
where have I been quiet for once now needing to get it all out my system.
I get my results next week for Lupus and other shit and today I had other tests which will take another couple of weeks to come back. I wait patiently not looking fwd to either of them good news is what I want.
Never mind me how are you? how was your trip I missed you too.
Much love and feel good vibes lets rock it thysis.
Lollyxoxoxo