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Chronic Snarkopolist: The Tidal Wave

Post Published: 29 September 2010
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 8 responses. Leave a comment

Hello my loves!

Thank you so much for your generous spirits and kind words! I’m completely smitten by you. This week I took time to reflect and sit around in my pj’s a great deal. OK FINE – I also played online a bit and sulked around.  I’ve felt the great storm coming so I’ve taken some preventive measures. I got hooked up with physical therapists and started massage. I’m going to a new acupuncturist this week too! I’m on top of things BECAUSE I can feel the oppressive battle of overwhelm begin.

The only answer I have to this is to live my best life.  If I can – volunteer.  If I cannot – accept the grace of other people being kind to me.  Compassion in all areas is the only answer I know.  But I know that when you feel the tidal wave coming – HOLD ON- BRACE FOR IT – strap in – and don’t grab on to anyone else around you – because you will drag them under.  The cushions under you can be used as a floatation device.

I also went to my new doctor and she yelled at me because I now live in small town Ohio where the old physical therapist told her I dropped the f-bomb and she got huffy and told me my language was not appropriate.  So there’s that. How did she even know I went to a different PT and not to them?  She wasn’t the prescribing doctor!  Is this town THAT SMALL?  Ugh. I made NO APOLOGY FOR MY LANGUAGE. I made none. BECAUSE I SHOULDN’T HAVE TO. FUCK THEM. Really.  I told her so and she backed down because she realized that it was NONE of her business.

Meanwhile- I was beginning to hate life. HATE IT. Revile it. Poke the face of life with sharp sticks and taunt it – begging it to snap my up in its gaping maw.  Fie- fie on you life.

I sat in my doctor’s office and looked at her – determined not to break.  I said to her, “Chronic illness is like a tidal wave.” It was then that she looked at me.  “You haven’t had time to come up for air yet?” She asks– just a few moments after paternalistically scolding me as if I am an unruly five year-old child.

“I am trying not to pull everyone down with me and remind myself that it will pass- it always does.  And if it does not – it will take me and there is nothing I can do – like a tidal wave.”

I clench my jaw around the words. I’m doing my best. This is it.  The tears want to come – I hold them back with my iron will. She hardly knows me. I MISS MY OLD DOCTORS. I miss my old city. I miss my cat. I miss everything about my old life, my health, my sanity, my abilities, my friends. I MISS MELISSA LIVING HER BEST LIFE WITHOUT MAKING FUSSES UNLESS SHE WANTS TO MAKE A FUSS. I miss being liked – because sick people are not well liked.

When was the last time anyone with a simple flu was easy to love? Amplify that by every waking moment of every single day and walk around feeling prickly and SMILE ANYWAY – choking on the knowledge that chronically ill people have to go the extra mile in EVERY RELATIONSHIP because WE are the harder people to love.  We are the feared and worse, the invisible. HUG PEOPLE ANYWAY.

Chronic illness plays no favorites.  It overwhelms us.  And when it does – too often it comes with the sickness of our friends and family- who get sicker still. With financial hardship, creditors, mean spirited people, emotional pain, worry, clingy friends, self-sabotage, psychic vampires.  ALL AT ONCE.  It will hit and hit and hit – wave after wave.

People want love. We all do.  Yet – for me when the tidal wave is breaking over my head – people don’t realize it. And I try so hard not to grab on to them and pull them under with me.  Many times they react by running far away from me.  This is painful – but it sends a powerful message to me that I am in RED ALERT- CRISIS MODE. I am master at my own illness – and I have no way of dealing with THE TIDAL WAVE EITHER. It takes us all by surprise every time.

No matter how good we are at dealing with our chronic illnesses – the TIDAL WAVE is always a surprise. It is a sneaky bastard. It comes with intensity and blindsides us.

When we reach out to hold on to someone – it feels as though we either bring them down with us – or worse, nothing is there because it is already gone in the storm.  This is what sucks most about being chronically ill.

It is why I tell people to surround ourselves with strong support systems, and be kind to each other, get and give love where we can.  Because it happens. IT HAPPENS TO THE BEST OF US.  More than we want.  And when it does we will do this on our own.  Even when we are supported on all sides – The WORK of coming through it is OUR OWN.

It feels horrific. It is a darkness. I cannot tell you anything joyous or positive about it other than IT RECEDES. There is a wave and a crash and then it recedes.  And we will breathe again. And life will stabilize.  We will look around – angry perhaps, sad, frightened, feeling as though we have been mortally wounded. Life will have a clearly defined picture of where we are and where we must continue. It may not be the life we WANTED- but it will be OUR LIFE.

Again and again, I remind myself not to waste energy mourning what life I do not have but spend it investing it what I do have. I continually invest myself in what I can do NOW.  It is hard not to dream too much or look too much in the past.  Being chronically ill is a constant reminder that LOSS will happen.

All life is loss.  It is a reminder that we are precious  – life is precious. What we do and say is IMPORTANT.  Every little thing matters. On my most horrific nights last week I got two important  beautiful phone calls from people WHO MATTER to me. They have no idea how much.  I tried to tell them – but they have NO IDEA.  They were simply being FRIENDS.

People matter. We matter. We can hold on through the tidal waves when the times are difficult.  Sometimes there are no explanations for the tragedies or losses we endure.  There are no reasons why we go through this shit.  We just do.  It is NOT to makes us better people or give us strength.  IT JUST IS.  It is like nature – rain or sun or snow, a storm. No one looks up and questions the clouds unless they are not there for more than a season.  Same thing with our health.

I have stopped trying to find meaning in all of this and decided to MAKE MY OWN MEANING.  And when that fails – and it often does – I have decided to let other people’s kindness be enough.  There is compassion and kindness. And sometimes there is just holding on until it passes – asking for help when we need it. Asking for a hug – giving a hug. Picking up a phone and being the person on the other end of the line when someone most needs it.

The tidal wave comes during chronic illness.  Hospitalizations, financial devastation, breakups, life changes, moves, crisis, death, the stuff of life, family illness, friendships end, our own health deteriorates.  Waves crash- ruining everything, leaving us to clean up – cry over it, mourn more losses.  And later move on when we are able.

What about you? Have you experienced the tidal wave? How do you handle it? Can you prepare? Are you ever ready for it? What does it look like when it is over? What is life like before and after?  Tell me how you handle it.  I want to know!  How do you deal with resulting changes.  What are your tidal wave strategies and support techniques?

I’ll see you same place next week! Kiss kiss!

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8 Responses to “Chronic Snarkopolist: The Tidal Wave”

  1. Donna says:

    Melissa,

    First, I’m sorry you are having a difficult time right now and I hope things improve soon, especially with the doctor because that relationship is pivotal for us.

    I can feel the tidal wave coming on for sure. I’ve been sick with some sinus allergy cold thingy for the last few weeks and it took me down, physically and emotionally. My swagger no longer wanted to swag so to speak and my light at the end of the tunnel approach seemed to be diminishing. All I could think about was spending another winter beng sick and it pissed me off, paralyzed me in a way.

    I’m in the process of trying to get my levels right so I am not hyper and was so positive. This little sickness took me to a place I did not want to go but this morning after getting a decent sleep I woke up in a new place, the fighter is back. I hope it lasts. For me, it seems getting angry and disgusted motivates me to get back up and fight my fight. Maybe when I get too comfortable I stop taking care of myself and become complacent.

    As far as those who are not grabbing a ticket for the tidal wave with us and have chose to take say a train well what can we do? That’s their choice. Let’s appreciate those that came along for the ride a little more than we did before. Some people are never going to get it anyways, like NEVER.

    Your situation makes me sad for you, it is too much for one person, it is not right. That being said, it is what it is and you will get it under control as best you can because that is who you are.

    Donna xo

  2. Linny says:

    Dear Melissa,
    Ah yes we know this tidal wave….Isn’t in interesting how we “know” it’s coming? Do you get panic attacks too?
    I have a little trick I have done for myself. I have a special place where I keep a survival kit.
    In this kit I put all the things I can think of to make this ride less painful. Well it’s all legal stuff so I can write it here. LOL
    Heating pad, hot water bottle, magnets, slippers, eye pack, eye drops, extra cozy pj’s, socks, scarf, winter hat, baseball bat, angel cards, music, books, Lavendar salts for my bath. Whatever I think will make me feel the most comfort I can think of. Humidifier, Hot wax for sore hands and feet. Softest blanket and scented candles.
    I start talking to myself. I tell my husband I need him to bring me things and ask about me so I don’t have to YELL!##W#%.
    Boxes of tissues, good movies and food I like.

    I know its hard dear, I just feel that if I do these things I’m in control not the illness. I am sure you fight hard thru these nightmare times. But I think we can allow ourselves any emotion we need to feel. Tear paper up and break potatoe chips. Sometimes I just let myself hang over the side of the bed upside down. It seems to bring more blood to my head and that helps too. I lay on the hard wood floor and try to feel every muscle /bone relax and fall into place. Sometimes when my legs are veryy sore, I stay in the tub and let the water drain out. This is helpful because it slowly helps my legs relax. Try this too.
    Keep reminding yourself that it will pass and the wave will calm. My heart feels sad you know this pain too.

  3. Melissa. I love this column more than you know. THANK YOU for your words of wisdom.

    I hate the tidal wave, but you’re right–whenever it comes, and it will come, it will take us by surprise. Last month at my offline cancer support group, a buddy of mine was sharing. He’s had cancer for twenty years. When he was talking about upcoming scans and tumors and anxiety, it hit me–it does not matter how seasoned we are; no matter if we’ve lived with a disease for one year or fifty years, it can always launch a surprise attack on us.

    I’ve lived with cancer for only two years, so I can’t say if this new life will get any easier (I’m thinking not), but I do know that I can CHOOSE what I do with this life. I can choose how I interact with those around me. I can choose how I love.

    xoxo,
    Joanna

  4. Amanda says:

    Melissa,
    I sure wish I “didn’t” know what you were talking about, but I do. Tidal wave is a great symbol for what it feels like, I have envisioned it as suffocating. Have even told my kids “I feel like I can’t breathe”, which in turn causes more drama and panic. Tidal wave will be a better phrase to blurt out when I am overwhelmed.

    This weekend, with the help of my daughter..her rugged football friends and my reluctant son… we are creating a space for me to be able to go and wind down/calm down after I am feeling the wave begin. We have a tiny house, but they feel this is important… so I am honored that they recognize the need.

    Survival tools… I love Linny’s suggestions. I think that would also be good… I have them but not in a list like she provided. I think keeping at least the list handy would be great.

    I hope you ride this wave like a dude on a surfboard and come out the other side refreshed and anew.

    Amanda

  5. Linny says:

    Melissa~
    I hope you don’t mind if I post a little note here.
    I have somehow been unable to set up a site where I can get to know some who share my thoughts etc….Please know I would love to do this.
    I will try to get this done, I have asked Katie to help me figure out my mess. Excuse my small computer understanding, I am self taught and have much to learn. LOL…..I have spent all my time reading and studying these thyroid puzzles……It is a maze for me….Thank you for understanding I need computers 101.
    xxxxxxLinny

  6. Lisa says:

    Dear Melissa,
    Holy cripes! What a heavy, great column, love it!
    I have fought with the tidal waves crashing and ebbing for the past 23 years; and it certainly is never easier or suspecting. From my husband’s 7 surgeries just 2 months after we were married, to being the care taker of my Mom with Leukemia for 7 years and then dealing with my stroke & cancer since 2002. Before being forced to retire disabled, I had to write and publish a book due to so many colleagues & friends not believing all this could happen to one person! Yet I couldn’t believe how many people there were around me that had never dealt with a tidal wave ever! Not even the loss of a family member.
    You would think after all this time I should be a pro at dealing with tidal waves but yet, like you said, it is amazingly always a surprise. Most of my tidal waves come in the form of flare ups and I can see it coming like the 30′ wall of water. I know that is my time to crawl into my dark hole to meditate, recuperate and rejuvenate. I do know that “laughing” at ridiculous things helps to pull me back into life. I have to find something to laugh at each and every day to make it feel as if I have some type of normalcy as the wheel of chronic illness keeps turning and evolving. I have found that I deal with each new tidal wave different than the previous one so oddly enough I guess I don’t have a set way. Some times I know that I’m not able to communicate with anyone and other times it takes loving words from others to help pull me out. So perhaps, just maybe there’s no one set way to deal with tidal waves of life.
    Smitten with you as well,
    Lisa Budzinski

  7. Nicole Wells says:

    Dear Melissa,

    My surf board gets knocked over in this continuous tidal wave more than ever. Makes me feel like I’m not equipped to surf LIFE when I see people around me still on their boards. Because I’m tethered to my board, I just keep getting dragged under the wave and hoping to know which way is the surface when I feel like I’m drowning.

    Thank you for always writing from your heart – I admire you.

    xoxo,

    Nicole

  8. Lolly says:

    Dearest Melly Mel,

    I love your column so much, you write so deep with a warmth and truth that is second to none, it makes me think how would I cope, how do I cope with that Tidal Wave?

    I’ve had to cope with a lot of things in my life from a very early age, not all good but I got through it, did it make me a better person a stronger person I don’t know about better. I know it made me stronger inside, ready to fight that tidal wave swim to the bottom and resurface taking in the air I need to get me through in case another one follows shortly.

    Life is like a roller coaster having it’s ups and downs but having chronic illness is measured with how much pain how well you feel. It isn’t something you can do on your own you need that strong swimmer, those true friends, family, who can keep you afloat. You won’t be dragging them down, you’re just leaning on them for a short time, until you have enough energy to go alone.

    And if you want to fucking swear do, It sure as hell makes me feel better and I won’t apologise to anyone unless the Pope heard me the other day then I’ll have to go fucking public.

    How do I cope I like to take myself away from people if I can and spend time on my own chill out with some Music old and new and lose myself in the words. I have been doing alot of it this week and have earphones on now while I reply here.

    Melly Mel know this if ever you want a life line you got me and everyone here on DT, I admire your strength I love your wit and most of all I love your warmth.

    Feel my warmth spreading across and pulling you too the surface, take that deep breath with me and you and I can swim into the sunset with dolphins for company. I’m a strong swimmer and won’t give up till I tire or I can’t breath.

    Love and much respect

    Lollyxoxoxo

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