My Life in the Slow Lane

Last night, as I was drifting off to sleep, I felt the urge to yawn. I stretched my arms like a small child does when they are totally overtaken by the yawn, letting it ripple through my body. The spasm hit while my right arm was stretched in front of me, slightly twisted to the left. The muscle connecting my chest to my underarm contracted so tightly it felt like stone. I sat up, took of my shirt, and brought my left hand up to try to work the knot out when the second spasm hit, this time in the same place on the other side of my body. I fell to the bed, quivering, totally at a loss as what to do. I couldn’t call out, I couldn’t use my hands to work the phone to call anyone because they were so contorted with the barrage of spasms the swept over my body like ripples in an eddy pool. The pain was worse than anything I’ve ever experienced as every muscle in my body—from my toes, to my knees, to my butt, to my stomach, to my elbows, to my hands, to my neck—contracted and loosened like an invisible power source rippled through me with thousands of volts.

Then, suddenly, everything stopped.

My muscles loosened. I lay in bed, naked, sweaty and panting, and prayed a prayer of thanks for the sweet relief of feeling numb all over. I called Ben. He came up, calmed me down, reassured me that it would all be ok, and left me to sleep.

Then it happened again. This time, not as strong, but it lasted for at least ten minutes, in slow, steady waves, leaving me shivering. There was nothing I could do because I couldn’t manipulate my hands to massage myself, and even if I could, I wouldn’t have known where to start. Slowly, as Ben talked me out the mounting panic that was beginning to surface, I relaxed enough for the spasms to subside, and eventually I fell asleep.

This morning, I woke to feeling so comprehensively achey. I haven’t felt this kind of sensation—the weak muscles, the aches from muscles pulverised by the spasms, the occasional aftershocks—for many years. The first five hours of my day were spent lying in bed, trying to get comfortable, while everything hurt.

As I lay half asleep, it occurred to me that the whole episode could be seen as a cleansing of sorts. For the last few weeks I’ve been sick with a sinus infection and a cough, I’ve been stressed out working two jobs and barely making ends meet, one of the jobs’ final report is due this week, and I have a new semester starting next week. Today, as I try to remain as sedentary as possible in the wake of the weird events last night, I saw that perhaps this is the new leaf that everyone talks about?

Could it be, perhaps, that the purgatory last night was the culmination of four months’ worth of stress, depression and overwork catching up with me? It hurt like hell, but I got it out of my system. Tomorrow, when I wake and go to work in the morning, I will fresh and new, ready to fight the world and keep going. I’ll be so well rested tomorrow, simply by virtue of being so comprehensively exhausted today.

After the purge I feel very tired and achey, but I know that in a few days, by the time next week comes around, I’ll feel refreshed and ready to tackle the new semester and the new job with a smile.

I wrote this poem this morning, watching the sun rise… I don’t pretend that I’m a great poet, but I felt a profound sense of hope, a very unusal feeling given recent events. My health has suffered greatly over the last five weeks, partly because of the emotional turmoil of the betrayal and heartache, partly because I haven’t been looking after mysef, partly because I have to walk everywhere now that there is no one to drive me around. But, despite all that, I am hopeful for a better future.

Esperanza,
     como la luz de amanecer,
          sube de día en día.

Algún día, dentro de poco,
     viviré sin dolor,
          ni ninguna enfermedad.

Esto yo sé—¡SOY FUERTE!

Podría sobrevivir cualquier cosa.

(Eso espero,
     mirando la salida del sol).

The translation reads:

Hope,
     like the light of dawn,
          rises day by day.

Some day, soon,
     I’ll live without pain,
          or any illness.

This much I know—I AM STRONG!

I will be able to survive anything.

(That’s what I hope,
     watching the sunrise).

After an interesting New Years Eve, Janek and I returned to reality.

Janek moved out of The Family Home, to a new place a mere two doors down the road from me. It’s like living together only without the actual living together part. Which is great because I’ve found that if I don’t get some space to myself I get really antsy and things get a little unpleasant.

I’ve been insanely busy at work lately too. I’m working on a casual basis with one day as “core duties” and one day for a special project. Between the special project and another big project that’s part of my “core duties”, I’m swamped. I could comfortably work five days a week at this point and still have stuff left over.

I’m waiting for March to come so that things can settle down a little when uni starts. It’s going to be a hectic week: one and a half days at work, three half days and one full day at uni. It’s a little daunting but the amazing thing is that just twelve months ago I never would have thought such a schedule was possible for me! My health is picking up, I can work a full day, study, all that kinda stuff, my only problem is the pain that hasn’t gone away.

So that’s life up to now…

Since my appointment with Dr NT, I have embarked on what I affectionately term “Dan’s irritating diet” (or, since I love acronyms so, “DID”). It is yeast free, sugar free, and largely taste free, at least in the snack department. I have to admit that while I’m not happy about it in the least, it hasn’t been as bad as I expected it to be when I was first instructed to undertake it. I do, however, reserve my birthright as a gay man to be a drama queen and complain about it. It can be summarised into three lists… each with conflicting advice.

LIST 1: Yeast free (and, it seems, mould-free)
No white bread, white flour, vinegar, mushrooms, yoghurt, mature cheeses, vegemite, alcohol, “herbal” coffees. Instead of white bread, I can have yeast-free bread (which is the size of a house-brick and about $5 a loaf) and instead of vegemite, some weird pretend-vegemite that no doubt tastes awful and is also expensive. You would also be very surprised how many biscuits, cakes and baked goods contain yeast. Very. Surprised.

LIST 2: Sugar-free (and, it seems, taste-free)
No sugar, glucose, dextrose (often used in small goods), or excess fructose (either from actual fruit, fruit juice or as an additive). So no sugar in tea or cooking, instead I have to use some kind of artificial sweetener, all of which taste like something out of a first year chem test-tube; no lollies, cakes, biscuits or regular soft drinks, instead I have to get sugar-free sweets and (gasp) diet drinks. To appease my caffeine addiction, I have been forced into the unenviable position of drinking coke zero; I don’t care what they say, you can still taste the sweetener. There is one small snag: caffeine is on list three. While shopping with Janek, he pointed out the caffeine-free, sugar-free coke. Against my better judgement, I bought a bottle. It’s probably a bit redundant to say that it tastes nothing like real coke. I’m so upset.

LIST 3: No “rheumatic” or “headache” foods
No tomato, eggplant, chili, pepper (capsicum), potato, beef/veal, citrus, kiwifruit, passionfruit. No cocoa, caffeine or peanuts. I was a little sceptical about this one to be honest, but on Friday night, in a fit of the munchies, I consumed half a jar of sun-dried tomatoes… and woke up with insane killer leg pains the next morning. I take issue with the caffeine… I may have to put my foot down with Dr NT on this one.

It’s not all bad news, I guess, I mean I’ve come up with some pretty good recipes that work within these parameters, but it’s still quite an adjustment. The sugar-and-yeast-free fruit cookies that we found are delicious (if a bit on the pricy side), and Janek has even managed to surprise me with sugar-free chocolate…

If it works, then I’ll do it with a smile and no complaining… Promise.

Wednesday was unpleasant. Which isn’t to say that it was totally abysmal; though it was unpleasant, it was unpleasant while in good company—perhaps, in that case, it was one or two shades lighter than abysmal. I could have done without it, nonetheless.

I was woken, rudely, by the radio at 730am. I moved at around eight, and was up and gone by nine, and at the pathologist by 930. After the preliminary greetings and medicare card checks, I was shown to a room with a bed, a chair, a cupboard (housing all manner of unspeakable torture instruments), and a little trolley (housing needles, syringes, vials and other items designed only to inflict pain on poor sick people). Simply being in the room made me uneasy; I lay down on the bed.

The main reason for my visit to this hellish corner of Broadway was to undergo the terror of a glucose tolerance test. If anyone out there is considering one for shits and giggles, I advise against it. If only for the crap you have to drink before you begin. I was given a small bottle that held perhaps 300ml of green liquid. Upon tasting it I found the liquid to taste exactly like cheap lime fizzy, only flat and warm and much sweeter than usual. I found out later that it contained 75g of glucose. This, The Optimist and I worked out several days later, is the same amount as one and a half regular sized blocks of chocolate (or one family sized block, no doubt). The whole point is to make a diagnosis of hypoglycaemia; hence the sugar-free diet, and the sudden presence of coke zero in my fridge (which I detest, despite, loathe, hate and revile with every fibre of my being).

After drinking the strange lime liquid, six vials of blood were drawn. I will spare you the gruelling details—partly in case any of you are as queasy about these things as I am, partly because I shut my eyes, clicked my heals and said “there’s no place like home” three times in an effort not to think about the blood as it left my body. Though I wasn’t expecting to be transported through space to my bed or, even better, to the double bed at my parents place, I was a little disappointed when I opened my eyes and found myself to be in the pathology clinic that I had been in when I closed my eyes.

Then, at intervals of thirty minutes, I had more blood drawn. For four hours. When I left, at about two in the afternoon, I had nine needle marks in my arms. The first half hour was fine, the sugar high wasn’t too bad, I sat in the waiting room and read my novel, and I even thought to myself “see, this isn’t too bad, you can do this no problems”. Perhaps that was my fatal move. After the next needle I had to lie down, like now, so I lay there for the next hour, listening to music and lolling around like a drunkard. At some point the sugar high bottomed out and I had no energy to do anything. I was asked, at about this point, if I could sit up in the waiting room as the bed was needed for an ECG test. Rather than telling them to fuck themselves with a splintery rake, I got up and shuffled out the waiting room… and shuffled back as soon as the coast was clear.

I felt so devoid of energy. It was quite scary, in fact, because it was a glimpse back to a past in which I lay in bed all day, every day, because I couldn’t do much else.

Two o’clock came and Janek came to pick me up. I floated through the shopping centre, leaning heavily on my stick (and silently praising its many, many virtues) until we reached the car. He drove me home, put me to bed, and lay with me until I felt a little more human. I don’t remember specifics of Wednesday afternoon, only fever-dream like snippets, but from what I remember he sat with me and watched TV while I recuperated. The wiped feeling has persisted, but I’m starting to feel a little better.

This fucken test better have some breakthrough results or I am going to beat Dr NT with my bottle of coke zero.

I hear the elephants charging upstairs, wildebeest and gazelles at their sides. I mistake the sound for rocks in heaven, or perhaps “God moving furniture”, like we tell little kids when explaining thunder. I feel the ground shake as they thunder past, and cower as the house moves around me.

I’ve been in a lot of pain and been fairly down the last few days. But I also went to a new doctor on Monday, whom I’ll call Dr NT (for Natural Therapies), and left with my wallet $120 lighter and with a swag of papers ordering food allergy and intolerance tests, a hair mineral test, various blood tests and, worst of all, a glucose tolerance test. For the uninitiated, a GTT involves drinking about a litre of glucose syrup then sitting in a chair for four hours while people in uniforms take blood sugar level readings every thirty minutes. It’s unpleasant.

I hear a saxophone in the distance, singing alongside a sexy Latin man of about fifty. I see the silver flecks in his dark hair shine in tandem with the red suit he wears… he is like a Latin Sean Connery. I hear his honey voice sing jazz to adoring fans.

I was also carrying a piece of paper with a list of allowed foods and disallowed foods. Suspecting hypoglycaemia, Dr NT has commanded I do not eat any sugar or yeast. Furthermore, he’s given me a list of so-called “rheumatic foods” to avoid, featuring tomatoes, capsicums, peppers, all citrus fruits (including passionfruit), beef and veal, peanuts or cocoa. This has immediately rendered half of my pantry inedible in one fell swoop but luckily The Optimist said he’d give me a few bucks for the stuff I can’t eat. I guess I should start looking into recipes.

I hear music so clearly, as if the gramophone that bears them is made of the finest crystal ane gold. I hear subtle notes that I have never heard before, and notice in parts the music is going slower than usual… but not slow in a “the fucking tape is stuck again!” kinda way, in a beautiful, perfect, harmonious way. I see a television in the distance, hear the news anchor speaking quickly as she recites a night’s worth of the city’s maladies. Though I am inside, I hear her floral voice. I feel white noise press on my skin as it trembles past my ears.

In other news, I won $500 from the university last week as part of a bursary programme. My winning was based on my results last year, so that was a very welcome surprise in an otherwise pedestrian week.

It’s been a strange week. Sometimes, when people ask you “How was your week?” you can answer quickly, confidently, “My week has been great thanks, and yours?” or “Fucked. Shithouse. Don’t ask.” This week has not been one of those weeks. This week has been the kind of week where, when asked “How was your week?”, you have to consider your answer before speaking, weighing up the good and bad of the week before giving an answer. This week I have felt overwhelmingly that I am juggling all these glass balls are up in the air, watching them hovering, threatening to come crashing down at any moment as I cling on and try to cope.

Ball #1: pain
This week I have managed the dubious achievement of having every part of my body in pain at some stage. Last Thursday, where this missive begins, I fell down the fucking stairs. I had ducked upstairs to go to the toilet and in my haste, as I was quite literally going to wet myself if I didn’t go to the toilet that instant, I left my stick in my bedroom and took the stairs on my own. On the sixth step from the bottom I misjudged the distance and placed my foot right on the edge of the step, my centre of gravity on the wrong side of that edge. Down I tumbled. My arms instinctively reached out to break my fall: one gripped the banister tighter as I slithered down the stairs, the other went to my side, attempting to act like a brake against the carpet. Both had little effect. As I slid down the stairs I started laughing, maniacally, thinking about the spectacle I must look.

On Monday I had a killer migraine, on the fucking train no less, that saw me lying down across the long seat all the way to the city. I got a taxi home, took a caffergot (100mg of caffeine… just like a punch in the heart) and a sedative and collapsed into bed. Then I puked. I slept for four hours, waking at 8pm, in time for a very nutritious dinner of just-add-water-style noodles, before going to bed shortly after.

And then there’s the perpetual, and totally inexplicable, pain in my back and legs. While it is true that my legs have bothered me considerably less of late, they are still painful on the odd occasion. This fact would be greeted joyously if it weren’t for my back’s total overcompensation in the pain department. What’s worse is that it’s so fucking inconsistent. On Tuesday night it hurt so much that I had tears in my eyes, on the verge of a full-on cry, and no amount of any drug would do anything to dull the pain. Wednesday, on the other hand, was pretty much pain free. Today was pretty good too, still sore but bearable. WHAT THE FUCK IS UP WITH THAT!?

Ball #2: depression
That segues nicely into the second ball, depression and its associated fun extras. As the back situation trundles forth into the land of the unknown, depression is creeping back into my life, ever so slowly. It is not the big bad blanket of despair that once it was; it’s a little more subtle than that. I have very little motivation to get work done, something I cannot afford to do since my workable time is so limited with my fucking back dictating when I can and cannot work. I often feel an overwhelming feeling of helplessness, which is then replaced by an overwhelming irritability in which I can’t fucking stand anyone’s shit and really only want to talk to or otherwise communicate with a handful of close friends.

The worst part of this ball is that in the last fortnight or so I have had the temptation to cut myself again. It hasn’t been particularly strong, but it is there nonetheless, and that scares the shit out of me. I haven’t picked up a knife or a razor, and very soon after the temptation crosses my mind I dismiss it as ridiculous, but it scares me.

Ball #3: existential angst
As I lay in bed, meditating, with the electric blanket on full and a hot water bottle over my chest, my mind wanders to such questions as “Why me?”, “What have I done to deserve this?”, “When will it end?”, “How will it end?”, “Where is God in all of this?”, “Does He care?”. I can’t feel God anymore. Maybe it’s because I’m a perpetually drug-fucked state, maybe it’s something else, but this is getting very lonely.

Ball #4: school work
Since I have missed so many classes and lectures, I am now a little behind in my subjects. Not only that, I have a 2000 word English essay due in a little over a fortnight. That I haven’t started. With my haphazard ability to walk or sit up comfortably, coupled with my occasional blue-tinted worldview, the likelihood of my writing a winning essay is pretty fucking slim.

Ball #5: I have no time for a breakdown
With all this shit happening, I just don’t have time for this. I have things to do, people to see, places to go, essays to write. I think I need a good hug and a cry. But as I am not one to cry at the drop of a walking stick, this is much easier said than done.

So many people have said that they admire my strength, but I don’t feel particularly strong. I guess I must have some strength or I would have given up long ago, but the truth is that at the moment I don’t have much choice in the matter… I either hang on any way I can or I end it all. And I don’t want to die, I want to live, which actually makes this harder because I really do have no other option. But this isn’t much of a life. If it hasn’t cleared up by the end of the exam period I am considering Drastic Measures. Like demanding an MRI. Or heroin. Somehow I will get through this… I just have no idea how.

I have not been a happy camper this weekend. My back has wavered between annoying and blinding with pain. During the annoying periods I think “ok this isn’t too bad”; during the blinding pain I lay on my bed, shirtless, with the electric blanket below me and my teddy bear and pillow on my chest, eyes closed, music playing, concentrating on my breathing. The physio seems to think things are going well; I’m not so sure.

May will be upon us in one week. With May comes the nine year anniversary of my various illnesses and trials. Last year I wrote a rather difficult post, Sick cycle carousel, documenting the progression of my various conditions, depression, and to a small extent my coming out journey. Below is the next part in the Sick cycle series. You might want to read parts one and two.

It seems that the ending of part two was a little bit too optimistic. Don’t get me wrong, I am happy (and I certainly was at the time I wrote that) but I can’t really say I’m all that content anymore. My back has been a lot of trouble lately, I’m downing drugs at an alarming rate, and I’m still kinda upset about Sister’s attitude in The Talk.

January 2007
After the loss of Pop, life was less sunny. I shepherded in the new year with Liz in a quiet ceremony with sparklers, champagne and Roger Rabbit. I spent most of January with The Beach Crew at Cal’s parents’ holiday house up north and on the Central Coast. My health waxed and waned, I was still popping pain killers left, right and centre, but for the most part I was excited at the prospect of starting at Sydney Uni in March.

February-April 2007
I turned 23 on the first and on the nineteenth we celebrated Pop’s birthday for the first time without him. Then I started uni and met a lot of really intelligent people who intimidated me very quickly. I had classes on three days a week, and as a general rule I was able to make the journey to Sydney at least twice a week. I did well in both subjects, gaining high distinctions in both. I enjoyed my time but the extra stress, walking, and sitting up took a toll on my already fragile health. Many nights I felt trapped, a youthful spirit caged up in an aching, ailing prison of a body.

I met Kate in March and we quickly formed a close bond. Within no time I began to refer to her as my sister, and her son, Lance, refered to me as Uncle Dan. Along with Liz, whom I consider my sister also, Kate is one of my best friends.

The day after St Patrick’s day I came out to Mum and Dad, which was, as you can imagine, a huge burden off my mind. After some initial teething problems, Mum came around; Dad didn’t give a shit from the start…finally I felt more myself in my own home.

May-August 2007
As the realisation that coming out to Sister was inevitable dawned on me, I suddenly suffered a bout of migraines at a rate of nearly two per week. Dr KHS, whom I started to believe was loosing his touch, advised cutting pain meds to see if they were the cause. Within a week or so I knew this wasn’t the case and went back to the normal dosage, however the migraines persisted.
As well as being migraine-prone, I found myself becoming depressed. The reason wasn’t clear at the time but with the benefit of hindsight I can see that it was all related to the intense sense of foreboding welling up inside me about Sister’s reaction. I sought shelter from the migraines and the depression in sleep. I was also struck at about this time that I forget how it feels to be totally healthy. Having been sick for eight years at this point, my last healthy memory was at the age of 14.

I came out to Sister on the 27th of May. We never spoke of it in any meaningful way for ten months. The migraines stopped soon after. The depression, on the other hand, continued. I felt trapped by illness and circumstance, hopeless, locked in a constant battle between my heart and my head.

September-October 2007
As the pain in my legs got worse and worse, Dr KHS switched the anti-convulsant (which I take as it blocks neural pain signals in the brain). I had every side-effect that the package warned against. I was nauseous, my knees were constantly inflamed, I was dizzy, spaced-out and all-in-all did a fabulous Anna Nicole Smith impression. I felt like a lab rat. The pain did go away after some time but the side-effects were way too much to bear. I couldn’t function at all and ultimately after a fortnight I switched back. The pain came back, followed by the vicious cycle of pain-drugs-nausea-sleep-pain. The high dose of pain killers left me in a perpetual haze. To add insult to injury I picked up gastro at some point.

I outed myself to the Family-at-Large by a rather cunning plan involving step cousins, the FAL’s natural propensity to gossip, and Facebook. Finally everyone knew and I didn’t have to lift more than a finger.

We sold Pop’s house. That was difficult.

November 2007-February 2008
I went to a neurologist; it was a waste of a morning. He was an odd little man and he told me nothing I didn’t already know. I did, however, get some stronger pain killers which made like a lot easier to deal with. I also changed anti-depressants from an SSRI (which I had been taking since the age of 17) to a tricyclic, which blocks pain signals as well as stabilising mood. I changed pain killers again and finally had a winner. CTs and X-rays revealed nothing. I started smoking weed to help with the stabbing pain in my back and shoulders. It helped too, it was a lot of fun in fact, but all in all no cause was found, nothing really helped in any permanent way… and so it continued. I struggled to get my head above water for a time but after I found my footing with the tricyclic antidepressant, my mood did eventually even out.

February 2008 onwards
I moved to Glebe into a house full of strangers. The Space Cadet makes life interesting. The Optimist and I are becoming good friends. The Guyanan and The Accountant I don’t have much to do with. Though my depression seemed to be under control, I was suddenly gripped with anxiety at having to fend for myself.

The pain in my back and shoulders continued to get worse; I continued popping pills (and have made a few faux-pas while under the influence…). As I write this, I am doped up and as soon as the effects wear off I will be writing again. Last night I got no sleep. I’m going to a chiropractor or physio on Monday. Someone has to be able to do something.

Life has to be better from this.

You say you just want to feel
the way you used to feel
the way you should feel.

Man, I feel like shit today. My back is in a full blown analgesic-resistant revolt, my stomach is drowning in pain killers, and I can’t sleep or get comfortable.

Last night was spent tossing and turning, pill popping, and clock watching. I woke every two hours or so. I hugged my teddy bear tightly and prayed all night. And in the morning I woke, unrefreshed, still pained, exhausted and alone.

There is more to life than this. I just want to feel the way I used to feel, the way I should feel.

Is that too much to ask?