Category Archives: My story

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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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Celebrate Average Eight

I don’t get to stay up late even though it’s new year’s eve. One bad night is like poking holes in a dam: For each disruption in the night, for each minute of sleep lost, the dam that holds the symptoms at bay springs a leak. If I can’t plug the holes quicker than they form, the whole barrier might crumble and fall… And the tsunami will come crashing down. So, I’m in bed, pretending I’m in New York and it’s already past midnight.

I’m ending this year on a relative high. These are the hours of sleep I’ve had in the last week:

7.75
8
8
7.25
8.5
8.5
9.25
9

For those of you that know me, you probably realise that this has never happened in my life. 8 hours of sleep is unheard of. 9 hours is unthinkable. Perhaps as a child I slept well, but I don’t think so. Since I can remember, I’ve been trying to replenish my appalling sleep deficit… Years upon years upon years… Everything wakes me: my husband snoring, the dog scratching, the heater moaning, footsteps, a crack of light, a car door slamming, the bathroom fan. And, once awake, I’m screwed. My brain is on high-speed from the first second: replaying conversations, making to-do lists, thinking about who I’ve neglected and what chores need doing, rewriting tv shows, writing blog posts, remembering everything I’ll just forget again once I get up.

I’ve worn my Zeo head band for years. When I was working 50 to 60 hours a week, I averaged 6 hours- or just under- of sleep over the course of about a year. When I was working in the corporate office, I managed to get my average up to almost 7 hours a night. Today, after this last month, it is 8. Eight! Lucky 8! I want to celebrate my eight! But I won’t. I’ll go to sleep and the rest of you can let off a bunch of fireworks and get drunk and kiss each other – all in honour of my sleep accomplishment this week. Oh, and 2013, too. Bring it on. Good riddance, 2012. May we all stay healthy or become healthier in the new year. That’s my only resolution: I resolve to kick M.E.’s ass. I am not gonna be that little Dutch boy with my finger in the dam no more!

Happy New Year, World!

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Each man’s life touches so many other lives.

I have survived Christmas and I don’t feel terrible ~ as terrible as I could. My sister, her boyfriend and their puppy came over for 3 nights. 4 people, 3 dogs, 3 nights. And it was lovely. I’d tried so hard to rest and save my energy before they came, but I was still hurting every evening. Unfortunately, Christmas Eve was the worst for me. It is our main celebration day and I had gone to bed with a crushing headache on Christmas Eve Eve, which lasted into the morning and all through the night. Typically, I am “okay” until about 5pm. That’s when everything starts to hurt and the headache kicks into high gear. I always go to bed around 9pm. I tried so hard to prolong our Eve, but only made it until 10pm. I have no idea how I looked to everyone on the outside, but, on the inside, I was struggling. The pain in my neck and head was about a 7 out of 10. That’s high. 9 out of 10 and I might be heading to the ER. I couldn’t see: I literally could not focus. Everything and everyone in the room were soft blobs. I couldn’t look at lights: that’s nothing new, but it was heightened. All of our lamps are on dimmers except one which was situated kind of behind my sister’s boyfriend. As we talked, I had to hold up my hands to frame his face with my fingers, blocking out any light around him in order to make out his features. And I kept thinking, Ask him to turn off that lamp, but my brain wouldn’t make that leap. It was easier to block out the light than to try to find the word lamp. This seems to be my version of brain fog. I’m not sure how this symptom affects others, but, at a certain stage, I can’t talk. Well, I can talk, but it is SO difficult. It takes so long to string a sentence together, it simply isn’t worth it. Especially in company because other people aren’t used to waiting while I try to find the words and, if I am talking quietly and get talked over, it’s too much effort to say it again. This isn’t one of the worst symptoms at all, but it might be one of the most frustrating for someone who enjoys quick-witted banter and a good debate and interjecting and laughter… My husband knows by now to not walk away as I’m saying something because it’s difficult for me to turn up the volume. He tries not to talk over me because he knows it’s an effort to say it once, let alone twice. This is much, much worse in the evening. If you want to have a normal conversation with me, have it between 10am and 5pm.

The headaches and accompanying noise sensitivity are by far my most debilitating symptom the last few months. The muscle pain, IBS, stiffness, exhaustion, brain fog, tight chest, flu symptoms and awful sleep ~ I’m used to all of it and it’s all bearable to a certain extent. But, the headaches… there are no words to describe how crippling they are. Every movement makes my brain slam against the inside of my cranium. Touching the base of my skull or the back of my neck feels like it should be bruised black and blue. It is so tender, stretched taut and soft at the same time. Every noise feels like a gun being shot next to my ear and threatens to reduce me to tears or send me to bed: the dogs barking, the opening of cans, my husband putting the foot rest of his recliner down, the bathroom fans, the squeaky dog toys, my phone alerts (which is why it is usually muted and I don’t answer), the kitchen timer going off… But the worst is the TV. We have a TV that supposedly keeps the dialog loud while subduing the action noise. It doesn’t work. If it’s loud enough to hear Harry Bailey say “A toast to my big brother, George, the richest man in town”, it is inevitably too loud as soon as they cheer and start singing Auld Lang Syne. And forget about modern movies. I have been looking forward to watching The Dark Knight Rises since our last failed attempt at going to a cinema (will I EVER be able to again?), but I am so scared of the action, the noise, the bright lights and the length (almost 3 hours). We have to start very early and shoot for a day when my headache isn’t as bad… I miss going to the pictures (as we used to say in the homeland) almost as much as I miss working or going to the dog park. Remember the THX sound at the beginning of movies? I used to turn that up as loud as it could go… surround sound in your own home! It was heaven. Now, I wince just thinking about it.

What I know for sure is sleep dictates how I will feel. Not enough hours or too many times woken up or, god forbid, night sweats and I am not going to be a functioning human being the next day. That’s why I’m scared of starting the Cymbalta. If it makes me sleepless for a few weeks, I could be set back for months. Low-dose naltrexone disrupted my sleep for almost a month and, the day I stopped LDN, was basically the same day I stopped driving, running errands, going for walks etc. That was over 3 months ago. But I will try Cymbalta~ I have to do something for the pain.

St. Stephen’s Day moment of gratitude: I got to celebrate Christmas! I got to have lovely meals and open presents and chat with family and watch movies (with my ears plugged) and enjoy Christmas music and laugh at the dogs playing… It was wonderful. Spending quality time with my sister was priceless and today I’m not in bed, crying in pain: I’m awake, happy, warm, fuzzy and grateful. I love Christmas and it actually happened. I made it! We celebrated!

No man [or woman] is a failure who has friends.

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libIDo

You know when you look at the side effects of some drug and it says, “loss of libido”? Well, I’ve never paid any attention to that. I am too busy looking for what I really care about: the prevalence of headaches, angioedema and anaphylaxis in clinical trials. It’s like my antihistamine nasal spray: when I researched reviews, an incredible number of people complained and warned of the terrible taste that drips into the back of your throat. Seriously? If it doesn’t give me an embolism or make it difficult to breathe, who cares? I felt the same way about loss of libido. Oh, boohoo, you don’t feel like having sex as much as you used to? I’m taking this drug to help with extreme pain (that has put me in the ER before) and I’m looking for the likelihood of life-threatening allergic reactions (that have put me in the ER before)… Or, I’m taking this drug to try not to succumb to an illness that is ruining my life ~ I just want to be able to get out of bed, do you think I care if I have no libido? Libido ran away with my make-up and high heels long ago.

But, what they don’t tell you is, libido is much more than sex drive. And you don’t know you’ve lost it until it comes back. Or, at least, if you’re battling a chronic illness, libido leaving is masked by everything else leaving, too. I haven’t researched this and maybe I should, but what I’ve experienced the last few months is fascinating. I went off the birth control pill and it was as if someone flicked a switch in my brain. There was something new, which mostly showed up in my dreams, but left a little thread of energy throughout the day, too. It was definitely sexually charged, but, more importantly, it was… vibrantly charged. I’m struggling to put this into words. Something inside me changed so abruptly that there is no doubt in my mind it was from going off the pill. It was primal… but not necessarily lustful. It was vital. It was a desire to feel desire and feel desirable. Not necessarily sexual desire, but a sort of deep, inborn yearning to be needed and wanted, to be likeable. And vice versa: a hunger to need, to want, to like… It was the drive to socialise, to interact, to have intimacy. But, not necessarily sexual intimacy ~ human intimacy. I woke up the other day, still lying in the residue of a dream in which I had been talking, laughing and flirting in some bar with some group of people. I lay there with my eyes closed, relishing that feeling: the joy, confidence, energy… the urgency and excitement of conversations with smart, funny people that you don’t want to end. I felt totally enlivened ~ a memory of my younger, fearless, drinking days that were filled with long, late-night sessions, interesting people, eye contact… when I wasn’t watching the clock, wondering when I could go home. Or, worse, like now when, even if I could go somewhere social ~ even if my energy would surge for one night and allow me to leave my home and enjoy noise, lights and human interaction ~ I wouldn’t want to be seen. I wouldn’t want anyone to see my grey pallor and sunken eyes and lackluster hair that I cut lopsidedly a few months ago when it was getting in the way of my cpap mask.

If I were still healthy or young or a drinker or even still had a job that allowed me to socialise, this might not have blindsided me with its strength and shaken me with its importance. I woke up from those dreams thinking, THIS is what we live for. THIS is why I have to get better. I will have that feeling again, dammit! I am not meant to be housebound, silent, still and scared. It’s not in my DNA. I want to feel attractive and full of life. I am hardwired to be social. My idea of heaven is talking, singing, eating and laughing with those I love.. or interesting strangers. I need to get back there.

When you are sick, sex is the last thing on your mind… But a warning to those of you who are just going through the motions and are fighting each day to find some sort of quality of life: loss of libido may actually mean loss of drive… desire… loss of fire and electricity… You may just need that low vibration to remind you why you are fighting.

Addendum: Well, well, well, in addition to sexual desire, the dictionary says libido is: “The psychic and emotional energy associated with instinctual biological drives. All of the instinctual energies and desires that are derived from the id.” And id is defined as: “the part of the psyche, residing in the unconscious, that is the source of instinctive impulses that seek satisfaction in accordance with the pleasure principle.” Freud was one smart dude. I wonder if he took the birth control pill continuously for nine months, too.