A Nasty Journey

I got a cold just before Christmas 2000. It was a bad one, the kind that really knocks you on your butt – dead tired, energyless.

It lasted and lasted until mid January when my right eyelid swelled up. It was worst in the morning, but soon the left eyelid joined in and I was puffy-eyed most of the day.

I went to a new doctor who said it was an infection and gave me antibiotic drops. They did nothing.

I went back and complained that my eyes were sore and hurting. He gave me stronger antibiotic drops.

They did nothing.

Soon the swelling was so bad I could hardly see in the morning. The pain was really bad now and so deep in my eye socket that I was worried there was something really wrong.

I went back to the doctor who gave me a prescription for strong oral antibiotics, so strong he said, they might make me ill.

My eyes were still hurting, the right one felt like a sharp toothache that kept me grabbing my head in pain.

My sister said “That doctor is a quack, go to a walk in clinic and see what they say”.

This was February, my exhaustion and achiness from the “cold” was still with me and I was nauseated from the antibiotics.

The doc at the clinic listened to me, looked at my eyes and had me in to an opthalmologist that afternoon. I had, I found out eventually, an autoimmune condition called “posterior scleritis”. I was put on steriod drops until the inflammation that was behind my eyeballs and pressing the pain into me was more or less gone.

But the “cold” and nausea stayed.

At first doctors thought, because autoimmune diseases like to travel in packs, so to speak, and posterior scleritis is most common in people who have conditions that affect the connective tissues in your body, for example, rheumatoid arthritis, and that my illness was due to something interesting, but after months and months of waiting for specialists and waiting for results it turned out that, other than thyroiditis, I was FINE.

Was I? “FINE”? I felt horrible. I wasn’t just tired, I was achy and brain-dead and weak and had a litany of oddball things that my body was doing to me (none of them felt good) that I could hardly walk around the block.

Doctors were not really helpful. “You are stressed, stop being stressed”. Of course I’m stressed. I have been a text book healthy-as-a-horse kind of person my whole life and suddenly I’m not for no apparent reason, so THAT’s why I’m stressing…

I quit my job and moved. I hoped that would ease my stress, just resting for a while. I had lots of money. I’d always be great with money and had a nice cushion to rest and get better.

But I didn’t get better. I got a little better, but every morning is like waking up after a drinking party with not enough hours of sleep.

But here’s the weird part: nothing I do makes it significantly worse or better.

I can push myself (which I do because I hate this) and 50% of the time I have to pay for it. 25% of the time I have to pay for it BIG TIME. But 25% of the time, I don’t feel worse or better. There is no way of telling what the outcome is going to be. So I have to be prepared for anything.

Lots of times, I’m in the middle of something, a weekend workshop, a show, and I get hit hard. I just keep going. It’s not like stopping is going to make anything better. If I know I can rest in the next day or two, I just keep going. The show must go on.

Eventually a rheumatologist diagnosed me with “fibromyalgia”.

Fibromyalgia is described by the Mayo Clinic is “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” “Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”

I don’t have huge pain, although the rheumatologist’s diagnosis was sealed with the “tender point” test.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

Back of the head

Between shoulder blades

Top of shoulders

Front sides of neck

Upper chest

Outer elbows

Upper hips

Sides of hips

Inner knees

I did have pretty much all of the tender point areas. They feel like bruises that don’t go away. I always feel like I have bruises under my arm pits, for example. I don’t focus on them. They are part of my life.

The only thing that doctors can do for you is prescribe you anti-depressants. Everything else you just have to deal with on your own.

I don’t have a lot of widespread pain, it’s mostly pelvic pain and low back pain which happens about half the time and if you count my calf cramps as being caused by fibromyalgia, I suppose those too.

So if I don’t have pain, what is wrong with me? I have a long list, but here are some of the feelings that my body is undergoing at any given time:

Lungs feeling like I’m breathing in smoke or caustic chemicals

Aching and tingling in my fingers and toes

Face that feels like it’s windburned and raw

Earaches/ deep ear pain

Mild headaches, especially sinus headaches/eyeaches

Stiffness, especially in my achilles tendons and lower back

Weird one: my whole body feels like it filled with poison – I call it “ my meat is carbonated ” to myself. This one is really uncomfortable

Fatigue difficult and unpleasant, but when I’m “boneless” it’s a HUGE effort to do anything, like wearing weights

Cognitive dysfuction “brain fog” (sometimes completly absent to “I shouldn’t be driving a car”to “WTF am I doing?”)

Depression (ranges from “lid kept on it pretty tight” to death thoughts and complete lethargy)

Anxiety (ranges from nil to sirens and fighter jets battling in my head with a lot of mean words)

Those last three are bad for rolling back into the fatigue and increasing the whole shebang by orders of magnitude.



None of these items I listed above is, on it’s own, debilitating. In packs they get harder to handle, but they won’t kill me. I can just go ahead and get on with things. I can’t do anything to make it stop. And it doesn’t stop. I just have to manage it as best I can.

But this is the hard part:

It doesn’t go away EVER! (unless I’m dancing, then I don’t notice it (yay adrenaline!) but it comes back when I stop ) – since 2000

This will sound like a twisted admission, but I wish I could have chemo and radiation and surgery and get it on the hope that it might get better. At least something would be happening to a positive end.

But so far, anti-depressants are all the medical community has to offer. Oh, and a lot of condescending “Do you WANT to be really sick”, or “We’re ALL tired and sore”.





When people say things to me like “We’re all getting older”, “I’m tired all the time too”, “You just need more exercise”, what I hear is “I don’t believe there is anything wrong with you, stop whining”. So I don’t like to say much about my physical state.

And doctors don’t like listening either. They give you an anti-depressant and hope you shut up about it, because, frankly there is really nothing they can do for you. Oh, they recommend massages and yoga, retreats and counselling. But massages and yoga are hardly covered by our health plan, and mental health resources are pinched so thin I’m on a long waiting list for a group therapy class I’m not even sure it’s what I’m needing. There are no more one on one counsellors, unless it’s outside the system and you pay through the nose for them so in the end it’s more “If you are rich enough here are some pricey suggestions”.

Oh yes, I am just about out of any money I had saved. I’m like next to welfare poor.

I don’t say anything about this unless it’s super killing me because it’s just a part of my life now and if I complained about it I would never shut up. But it’s always there to some degree more or less.

As I may have said at sometime in the past, I thought fibromyalgia was a made up thing whiners and malingerers and hypochondriacs lazily snivelled up to legitimize their lack of will and responsibility.

So now am a “fibromyalgia” person and I fear everything I have just written is superceded by the paragraph above.

But I’m going to speak up now and try to let the humiliation and shame of being thought another one of those “lazy, weak-willed, overweight middle-aged women complaining about nothing” fall away from my being. This is what I am. I don’t have the strength to pretend otherwise anymore.

Here’s happy little poem about depression and anxiety that I wrote:

Soul Poison

Black cold sticky foul

Creeps into the aching bones

Worms into the blood, the cells

Ice-spreading parasite

Freezer burning life, desire

Hate and shame devouring hope

Failure sneers in triumph, HA!

Death winks

No escape

Chill sun

Ice wind

Bleak edge

Life gone

Lonely

Die

Now I am out of money. terrified to get a full time job, as I’m afraid I’ll just let everybody down when I crash bad one day and scared as all hell.