Today, February 22, 2006, is the fifth anniversary of my D-Day - Diagnosis Day.

Unexpectedly, it feels a little different this year. Something about it being five years ? half a decade ? seems to be putting me in a reflective mood. I keep thinking about how it means that come May, I will have been infected with HIV for nine years. Nine years! It hardly seems possible that so much time has passed since I was super-fit and fishing for scallops for a living.

I?ll never in my life forget the illness I had in May of 1997. I?ve never, ever been so sick and alone and hope never to be again. I don?t normally talk about my seroconversion illness, mainly because I fear that worried people in the Fears forum at Aidsmeds will try to apply what happened to me to their own situation and come to the wrong conclusions. However, this is part of my story and for once, I want to talk about it. It?s a long story, so make yourself a cuppa and get comfortable.

It all started in January 1997, when I was half-in and half-out of a long-term relationship that had its share of ups and downs. I?d come down with a sinus infection just after New Year and was told by my doctor that the antibiotics he gave me would interfere with my birth control pills. He advised me to use condoms to prevent pregnancy for the duration of my current cycle. ?Yeah, right, no worries there!? I thought to myself. My boyfriend and I had fallen out at Christmas and I kept telling myself it was the last straw. Why would I need to worry about condoms when my bed was empty?

Ah, but then I ran into him in the pub and we were right back together again. I?d been off the antibiotics for several days by this time and forgot all about my doctor?s warning. The result was inevitable - pregnancy. I knew pretty much straightaway, just as I had done with one that ended in miscarriage and the one that resulted in my beautiful daughter. I went to my doctor to confirm the pregnancy with a blood test, followed by an internal exam a few days later. The internal exam was painful; the doctor suspected an ectopic and I found myself in a hospital bed by the evening.

That night, I learned that somewhere in the days between my pregnancy-positive blood test and the internal exam, the embryo had died. This was a blessing because I?d already decided reluctantly on adoption as I was in no position to become a mother again. An ultrasound revealed the source of my pain to be another ovarian cyst ? my third ? and I was duly scheduled for a laparoscopy in the morning. Before the op, I signed papers for a tubal ligation - I never again wanted to contemplate giving a child away.

It was discovered that I had extensive endometriosis, which was burned away using laser technology. The cyst was also taken care of and the plastic clips snapped in place around my tubes. I was sewn up and sent back to the ward. The surgeon came to see me later that day to explain the follow-up treatment I would need, which consisted of monthly shots in the belly, starting that day. He said the drug would cause artificial menopause and give my body a chance to cease creating extra endometrial lining, which is what endometriosis is. He said my periods would stop and I might get the odd hot flush but it was nothing to worry about. No problem. Yeah, right.

The months went by and with each shot, I became increasingly emotional but I never connected it with the treatment. This was back in the days when I trusted my doctor to explain fully any possible side effects. Whoa! Big mistake! By May, I was a basket case and didn?t know what was going on. I?d cry at the drop of a hat or a puppy on the telly and as I?m not one to cry much, it was very disturbing. It was as though there were two people inside my head, the one who was saying, ?What the hell is your problem?? and the one who was saying, ?I don?t knooooooooowwwwwwaaaaaahhhhh!?

A good friend who knew I had recently broken up with my boyfriend ? again ? stopped by one night when I was in the middle of an inexplicable, unstoppable crying jag. He thought I was crying because of the break-up, but no, I was happy about that. I didn?t know why I was crying and furthermore, I could NOT stop. He became increasingly concerned and got on the phone to the on-call doctor from our local clinic. The doctor quickly arrived, tried to get some sense out of me, failed - and rang for an ambulance. No, he didn?t instruct the paramedics to take me to the ER ? I was to be taken to the mental health ward. Yippee! Those nice young men in their clean white coats had come to take me away!

It wasn?t until the following morning when I had my consultation with the psychiatrist that I was asked if I was on any medication. I told him about the endometriosis treatment, which he proceeded to looked up in one of his books. He turned to me and said, ?Good news, you?re not going crazy, you?re simply experiencing a fairly rare, intense reaction to your treatment but it?s not permanent.? He prescribed an antidepressant, advised me to discontinue the shots and said they?d keep me in for a day or two so I could get some rest and regain my equilibrium.

Things went well and even though I still felt emotional, I no longer felt as though I was going crazy. I understood that it wasn?t me, it was the chemicals and knowing that made a huge difference, enabling me to cope. I was back in control; it was a relief! The day I was scheduled to go home, I got up early for an invigorating shower before the rest of the patients were up and fighting over the facilities. I was feeling great and looking forward to going home. After dressing, I went back to my room and sat on the bed reading while I waited for breakfast to be announced.

The next thing I remember was a panicking nurse trying to wake me up ? and that?s about all I remember of the next 36 hours. I was told that when I didn?t appear for breakfast, an aide was sent to my room to get me, as patients on the psych ward are not allowed to miss meals or stay in bed during the day. The aide found me sprawled across my bed, sleeping. She shouted at me to get up and threatened that I would not be allowed home if I didn?t get myself to the dining room. When over an hour later I still hadn?t appeared, a nurse was sent to see why. He later told me that he took me by the hand to wake me and discovered that I was burning up with fever. When he couldn?t rouse me, all hell broke loose. A medical doctor was called and blood tests taken, but there was no obvious cause of my fever as everything seemed normal aside from the fever itself. I?m told I was put into a cool bath and given paracetamol (acetaminophen) to bring my temperature down from over 104. Although there was no evidence of bacterial infection, I was put on antibiotics ?just in case? and simply allowed to sleep. I didn?t wake up (except to be fed drugs and taken to the toilet) until late the following afternoon. I was still feeling unwell but able to eat some dinner. I had a good night?s rest and was allowed home the following day with instructions to finish the antibiotics and stay on the antidepressants for a few weeks. I thought my ordeal was over.

I went to bed early my first night home because I felt sick and utterly exhausted. I lived alone, had no phone and was beginning to wonder if I?d made a mistake in coming home so soon. I had. Sometime during the night, my fever spiked again and although I had no way of measuring it, I?m sure it was back up over 104 F. I entered into a nightmare world of pain and terrors for what turned out to be more than two days. I was absolutely insensible. Every joint in my body felt as though it was being alternately squeezed and torn; the pain was unbelievable. Any position I attempted hurt worse than the last. I was drenched in sweat. I couldn?t stand, I couldn?t crawl, I couldn?t move. I couldn?t get to the bathroom for the toilet or the kitchen for a drink of water. I had no paracetamol in the house and no way of getting to it even if I did. I had no way of summoning help and no one realised I?d gone missing. Some friends thought I was still in hospital, a few thought I was at my ex-husband?s and others thought I was at sea, fishing. I was on my own and sicker than I?d ever been in my life.

When the fever finally broke, I discovered that I?d been in bed for close to sixty hours. I was weak as a kitten, dehydrated and vaguely hungry. I?d lost a lot of weight, but I?ve no idea how much. My mattress had to be thrown out and my cats weren?t speaking to me because I?d been neglecting them. (I told them they should have gone for help!) I got an appointment with my doctor for a couple days later ? the first available ? but aside from continuing joint pain, I was pretty much back to normal by the time I saw him. He told me I ?probably had some virus which would run its course and go away.? I knew that what I?d experienced was no ordinary virus and started doing a little bit of research. HIV never entered my mind as a possibility and I?ve sometimes wondered if I?d had internet access back then and Googled my symptoms, if the penny might have dropped that I needed to be tested.

The only thing I could come up with to explain what I?d been through was rheumatic fever. The doctor said no, I was too old for rheumatic fever and I shouldn?t worry about it. But worry I did because I continued to have joint pain and was increasingly fatigued. Two years later, I ended up back in a hospital bed with suspected appendicitis. It turned out to be my fourth and (hopefully) final ovarian cyst, but this one was tiny and on the opposite side to the pain. After the laparoscopy, the surgeon came to see me and told me to stop drinking so much as my liver enzymes were slightly elevated. This confused me because although I did drink, it certainly wasn?t enough to alter my enzymes. Something clicked in my head about my ex-husband saying he had once had non-A/non-B hepatitis and I asked to be tested for hepatitis C. I was refused and told if I wanted to test, I?d have to do it through the GUM clinic after I?d been discharged. I don?t think they believed me that my ex-husband had been diagnosed with non-A/non-B in 1972.

I was diagnosed with hep C in May of 1999. Finally, I had an explanation for the joint pain and fatigue, two classic symptoms of long-term hep C infection. However, I still had no explanation for what I went through two years previous, but I knew that as I?d become infected with the hep C back in 1984, the fever had nothing to do with hepatitis. Even though I was becoming increasingly symptomatic with the hep C, the ?specialist? kept telling me it couldn?t possibly be the hep causing it and in his opinion, it was all in my head anyway. Humph. That?s what he tells all the hepatitis C patients on the Island, but that?s a story for another day.

I struggled on for two more years, my symptoms worsening as time went by. I?d quit drinking when I was diagnosed with hep C and was leading a healthy life-style, but it didn?t seem to make much difference. Then on the night of February 20, 2001, my doorbell rang. I opened it to find an acquaintance of mine in an advanced state of inebriation, babbling something about my ex-boyfriend giving his (the drunk?s) girlfriend HIV. I told him to eff off and shut the door, believing that his story was nothing but an alcohol-induced, paranoid rage.

I found out differently the next morning when I received a letter from the GUM clinic in the morning?s post. I put two and two together and several frantic phone calls later, knew I?d made four. My blood was in the lab by eleven am and I had twenty-three and a half hours to digest the idea that my ex tested positive for HIV and I might too. This wasn?t something I could hide from my ’new’ partner of eighteen months; how could I? In a few short hours, my life had been turned upside-down and shaken like an empty box. How do you hide that? After leaving the clinic to await my results, I walked to his house and into a new life.

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To be continued.

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