The Road Back

Since the end of 2000 I've experienced a major improvement in my health. After ten years of chronic illness this is pretty extraordinary, and every day I find I can do some activity I've been unable to do for all that long time. So I've decided to write this page to tell fellow PWCs what's happened and how it feels, and the world in general what it's like to go from chronic ill-health to the semblance of a life.

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For those PWCs feeling acutely sceptical at this point, I don't blame you—you've heard dozens of people say they're sure they're getting better this time, until they crash a month later; and you've had countless e–mails from snake–oil sales reps promising you perfect health providing you pay $499.95 for a tincture of talcum powder and Andean Llama hair. I do know that nothing is predictable about this illness, and that any period of better-than-usual health awakens hope in us all. The reason I feel this is different (and hopefully longer-lasting) is because of the scope of the improvements, the fact that they've hung around for eleven months now, and that they occurred straight after I began the current treatment (more on that in a sec). There's every possibility I'll be back here a year from now with egg on my face, but this experience is unique for me and I've decided I'd like to record it, whatever happens in the future.

Now, the treatment: 150mg a day doxycycline ('Vibra Tabs') and 5mg a day metenolone acetate ('Primobolan'). The doxycyline is an antibiotic used to treat chronic mycoplasma infection - Garth Nicholson's website has a stack of papers on the subject. I first tried Primobolan for low blood pressure (FlorineF not being effective for me) a few years ago and it worked well for that. My doctor suggested I try both treatments together this time to see what happens (medicine being a somewhat hit-and-miss affair with a medical mystery like myself) and lo and behold, things started improving almost immediately.

I can now fall asleep in less than half and hour , and when I wake up I feel refreshed and really awake. I have energy in the morning, I don't feel dizzy or faint, and my stamina is much improved. I can walk up a flight of stairs without lactic acid building up painfully in my legs, and if I rest during the day my energy level is actually restored; formerly it would be remain identical to when I first collapsed.

So those are the best bits. However I still catch viruses (and exhaustion and sleeplessness still accompany their other symptoms), still get some aches and pains, and find that if I don't get to bed by about 10:30pm I'm drowsy the next morning.

That's the story up 'til now. Below are vignettes about what it's like to be feeling better for once.

When I go to bed at night now I don't feel utterly exhausted. CFS exhaustion sucks the life right out of you—and that empty, drained sensation doesn't go away once you lie down. I'm so accustomed to feeling that way each evening that it's a novel sensation to still have some capacity for activity at the end of the day—I almost feel as though I should be out running laps in order to exhaust myself 'properly'. Almost.

Oh, the indescribable bliss that is being able to fall asleep in less than two hours! To go to bed, relax, feel all drowsy and warm and then just GO TO SLEEP, what a pleasure. I'm surprised I don't wake myself up again marvelling at the novelty of it. I used to stare at the ceiling, bored out of my mind, thinking of everything and nothing, for at least an hour. I was relaxed, I was extremely tired, and I badly wanted to fall asleep, but it just didn't happen. I assume the Primobolan has rebalanced my brain chemicals or something, but whatever it's done, I'm very grateful.

Waking up in the mornings. I can, now. It used to be that I would merely open my eyes and assume the vertical, but in fact still be in some ghastly intermediate state that combines all the tiredness and fogginess of sleep with the appearance of wakefulness. My blood pressure would be low, making me dizzy and faint, my muscles would be sluggish and apt to accumulate lactic acid to painful levels just moving around my bedroom, and I found it hard to eat much at breakfast without feeling nauseated. In short, I was not a morning person. Now, I can wake up and sit up in under a minute (you might have to be a PWC to appreciate how extraordinary that is), and I don't feel a sickening lurch of dizziness. I can get dressed and walk up stairs without feeling as though my limbs are made of lead, and I have something resembling an appetite at breakfast. Woah.

It's so nice being able to do uneventful little things easily. Like walking up the stairs (I know I keep mentioning that, but I live in a two-storey house with my bedroom downstairs and everything else upstairs, so stairs have always figured largely in my housebound existence) without my thigh muscles screaming at me, or hanging out the washing without my arms and shoulders aching like mad, or bending over my cross–stitch frame without my back and neck hurting. I was gardening last week, and the thing I most enjoyed was being able to move around without feeling the weight of my own limbs all the time.

Life–wise, my horizons have expanded considerably. I completed an eight–week editing course at the end of 2000, and having found I could cope with all the travelling and sitting up and paying attention, I've enrolled in an English Literature course this year. It runs all year and involves assignments and exams, and if I maintain at least a credit average I can use my result to apply for a position in an Arts degree next year. So suddenly I'm planning for my future again—suddenly I have a future again.

Okay, it's official — I still have limits. I can't expect to stand up for three hours straight whilst sawing up pieces of timber (picture frame mouldings) after walking across a new bridge three times the day before, without repurcussions. And I'm still vulnerable to viruses. But as long as I only do one 'major' activity a day I seem to be able to keep up without crashing, which is really nice. At the moment, as the above would suggest, my activity has been making picture frames, and although I'm a bit slow when it comes to tasks that require strength, I'm keeping up with the class. So, slow and steady wins the race, I hope.

There has been a slight hiccup these past few weeks (April 2001) after I accepted a generic substitute for Vibra Tabs (the chemist being out of those) and proceeded to have a major allergic reaction—pink, acne-like itchy rash all over my face. This was not fun. So I'm off the primobolan and antibiotics for the time being until I'm sure the reaction is over (I have my face back thanks to anti-histamine drugs), and then I'll start on them again gradually. However the surprising thing is that I haven't crashed big-time as a result of all this. In fact I'm keeping up just the way I was, and apart from a virus over the weekend my energy levels are much the same. So that's very reassuring; I don't want to be dependent on this treatment forever.

Since the above antibiotic incident, I find I'm apparently sensitised to all antibiotics. This could be awkward if I need them in the near future but as it is the reaction was provoked by pimple treatment cream and I can live without that. I'm back on the primobolan, and found I definitely needed it after a month's break; my low blood pressure had begun to reappear and my stamina was noticeable reduced. Both of those symptoms have returned to their pre-break levels and I still find that although I do catch viruses (such as the one I've got today—aches, dizziness, nausea, temperature changes, 'the shakes', more dizziness—such fun) I have more energy during them and recover rapidly. On non-viral days I have so much more energy than I did a year ago; I'm actually contemplating going along to some Sydney Dance Company open dance classes these July holidays. The English class is going well, I find the essays taxing but as long as I take my time about writing them and plan a lot (rather than trying to write the whole thing in one sitting) I'm able to turn out work at the standard I used to achieve in highschool. My level of cognitive dysfunction doesn't seem to have been altered by my current treatment regime.

It's now August 2001 and I'm excited to say I attended a funk dancing and stretch class (as mentioned above) these past two weekends. The funk dancing was extremely energetic, and I found I needed regular sips of an electrolyte drink and that my thigh muscles were the most affected by the aerobic exercise. I didn't collapse afterwards and enjoyed myself immensely! I have missed being able to dance during my illness and treasure this opportunity greatly. The stretch class was less successful; I've never been a very flexible person and found the yoga-style positions quite a, well, stretch. However just being able to try it is a major acheivement. Right now I remain off the antibiotics, and am taking one primobolan tablet a day.

Long time, no update. It's mid-November now and my English Literature course is complete. On Saturday I saw a three-hour exam in which I wrote four essays. Surprisingly, muscle stiffness and soreness were much more of an issue than brainfog, however not so bad I couldn't continue writing. My attendence at the wonderufl dance classes has been a bit patchy because I've been studying, but since I last wrote I keep up with the exercise much more successfully than before, and can even do more than five sit-ups (there's a short stretch session) without collapsing. Push-ups are way beyond me though! I'm considering going to the gym once a week, to do a short swim and some weight training. At home I'm able to lift a massive 2kg (that's a whole 4.4 pounds, for all the Imperials reading) so I'm hoping the weight machines have a very, very low setting.

I now have a job! I work on Thursdays and Fridays doing secretarial duties at my father's small business. It's very rewarding contributing to the economy and having a wage, and I feel a little closer to that thing called a life that people rave on about so much.

Treatment-wise, I'm taking primobolan twice a week, and have never returned to the antibiotic regimen. I still get viruses (once a fortnight or so) but they don't hit me as hard and I recover within a day or so. In the coming year I'll be studying Latin at an adult education class, and have applied for a place in an Arts degree which I intend to study part-time. Now my English class is complete I have more time for crafts that have been abandoned for most of the year, including sewing clothes and cross-stitching, and I'm looking forward to seeing family and friends over the Christmas holidays.

Lovely green sofa and orange chair supplied to me by Eric Henes.
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