January 1st, 2013

2012 was the worst year of my life. I realise that is not a very festive and celebratory way to start a new year’s post, but it’s the truth. Having said that, however, I know that if this past year has been my worst, I have been extremely fortunate and had a very blessed life.

On January 1st 2012, I wrote an eight page-long goodbye letter to my husband which included all the details of our online accounts, passwords, paperwork etc., things with which I have always dealt. It also laid out my thoughts about my funeral and asked him to make sure to use my savings to pay for my family and E. to travel from Ireland, if needed. Really morbid stuff.

Thank you for your love, kindness, caretaking, honesty, patience… You gave me everything I’ve ever wanted in a friend, a partner, a husband. I am so lucky…

I had never experienced anything like what I was going through and I didn’t think I’d come through it. At the time, I had been diagnosed with malaria. Never did it occur to me, if I did survive, that I’d still be sick a year later. Never did it occur to me that I might be sick for years and years to come. I work every minute of every day to get better and that is what I will continue to do. Every day, in so many ways, I try to help myself heal:

I wake up slowly, gather my strength, set my intention for the day. I open my blinds so moisture doesn’t collect on the window panes, I turn on my air purifier so it can work its unseen magic during the day. I wash my mouth guard, cpap mask and machine parts ~ yes, every day. I brush my teeth sitting down. I wash my face, pick off the leftover adhesive (from the tape I put over my mouth at night) and apply a calendula cream that helps my skin heal. I put my dry eye drops in and use my antihistamine nasal spray. I make tea with stevia and soy creamer (no sugar, splenda or dairy allowed anymore) and take my first supplements of the day with filtered water (the top rated (cheap) filter by Consumer Reports). I check the temperature and the humidity in the house. My body has no concept of comfortable anymore. I could be feverish for no reason or freezing in the heat. Or sweating face, but icy toes.

I work on the computer for a bit, sitting in front of a light box. Breakfast is a smoothie with flax, berries, and walnuts or homemade granola with fruit and almond milk. I seem to have completely conquered my hypoglycemia by switching from rice milk to almond milk and adding fiber to my tea. Afternoon beverage is decaf green tea, per the Good Doc’s orders. I do any chores I can manage. I try to meditate three times a day. This is forced rest… or preemptive rest. Regardless of how I feel, at the very least, I lie down twice each day for an hour, usually at 1pm and 6pm. I have a room ~ not my bedroom ~ where I have peace, privacy, a small futon, a wedge pillow, blanket, eye mask, headphones and CDs. These meditations are the only reason I can get through the day. If I don’t recharge, flat on my back with my eyes closed, I will start to deteriorate: get shaky, slow down cognitively, become achy, stiff and develop a headache.

yoga room

In between 2pm and 4pm, if I’m up to it, I do laps around my house with the dogs. I’m currently not up for more than 4 times around ~ about 400 steps. I wear a pedometer all day, every day.  I am diligent about keeping my core temperature up. For those few minutes outside, I put on my heated vest, hat, scarf, gloves, Uggs. I never want to go back to the debilitating chills of this time last year. If I feel I have some strength, I do every little thing possible to “exercise” so my muscles don’t decondition any more. I squeeze the squeeky dog ball in both hands. I slowly and carefully scoop dog poop. I focus as many miles away as possible ~ to the skyline or horizon ~ since I spend so long indoors only looking six feet ahead. I breathe deeply ~ consciously ~ to get my dose of outside air. I notice everything: planes tracing lines in the sky… the sounds of our neighbours… plants, birds, trees that I never paid much attention to before. And I am grateful for every step, always silently thanking the universe for keeping me on my feet, for allowing me to have the health I still have.

last leaf

Even if I can barely move, I try to stretch my muscles as often as possible. I soak in an Epsom salt bath (2 cups) for no more than 30 minutes (I am told any more than that and the badness leeches back into your muscles) and then I do gentle floor stretches, as well as my neck traction. I dry my hair sitting down. My lunches and dinners are predictable, boring and really pretty disgusting after months and months on end. No grains of any kind besides oats, no eggs, dairy, legumes, potatoes, tomatoes or cod. No msg, obviously, and I’m desperately trying to cut down on sugar. I add turmeric to virtually everything I eat. If I had the energy to cook, I would be making the most creative and tasty dishes, but, as it is, I rely on my husband and quick snacks: apples, nuts etc. Basically, I eat enough to take my supplements. I drink two tablespoons of tart cherry juice with dinner every night and usually drink ginger tea last thing before bed. I don’t watch tv later than 9:30pm, I practice good sleep hygiene and I never get to sleep later than 11:30pm.

My year felt like one third survival, one third denial, and one third a carefully constructed balancing act. A tightrope walk with no end in sight and any time you fall off, you don’t go back to the beginning ~ you go back much further than where you started. So, you don’t know how far the rope goes in front of you or behind you. Now: Turn that tightrope so it’s vertical. You aren’t walking forward, you’re clinging on with your hands, trying to climb upwards into the clouds… an abyss below you. Just one hand over the other. Don’t look up, don’t look down. This moment, this breath.

Holding onto a rope

2012 Wrap Up:

January: Saw endocrinologist; Mom visited.
February: Saw infectious disease doctor; started seeing a therapist; started meditating.
March: Saw rheumatologist, saw allergist, saw gastroenterologist; started low fat diet; changed birth control pills; eliminated pain killers.
April: Saw naturopath; started gluten-free and dairy-free diet; my friends’ sweet baby A. was born ~ the highlight of this year.
May: Saw second infectious disease doctor; Mom visited; stopped working and left career.
June: Saw optometrist; got CT scan.
July: By best friend E. visited; my sister got a new puppy (my new nephew); dear friend of the family’s, M.B., died.
August: Started seeing the Good Doctor; saw chronic fatigue “specialist”; started automimmune elimination diet.
September: Started acupuncture; saw sports medicine doctor; had sleep study done; Dad visited; became housebound.
October: Got brain and cervical spine MRI, Mom visited; brother T. visited.
November: Saw obgyn; started using cpap.
December: Brother A. visited; sister and J. visited for Christmas; dear old friend, D.H., died far too young.

This was my year. I know there is a big world out there with a lot bigger things going on, but this was my year. Doctors, tests, symptoms, setbacks, births, deaths, revelations about myself, revelations about our bodies, grief, joy, fear and more grief. And I know: it could have been much, much worse. What I see when I look at this is: my brothers, sister, mother, father and best friends all came to visit me. They journeyed across the city, country or world to my house to support me. In doing so, they healed me. I am very lucky. I am very blessed. With this kind of support, I can be the rock again. I will feel like I can weather any storm again. Maybe that’s what the new year will bring. I will notice everything, consider anything, expect something, but fear nothing. Welcome, 2013. You’re going to look very different from last year.

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2 thoughts on “January 1st, 2013

  1. Anna says:

    Yes! This year will look very different. Keep in mind that not only CAN you weather any storm, but you ARE weathering a very nasty and moody one. And you’re doing it with honesty and strength.

    Like

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