February 2006 Archives

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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My computer and I have had our first tiff. First major one anyway. It decided it doesn’t like my wireless keyboard anymore and I’ve exhausted all possibilities. It should be working because the mouse runs through the same system and its fine. Yes, of course I changed the batteries! Yep, pushed the little ‘beam me up, Scotty’ buttons on both units too. Nada. Re-boot, nope. Doc Martin’s… I’ll get back to you on that one.

The skirmish started yesterday afternoon. I’d like to think the gentle brushing I gave it in the morning with the new, as of yet unnamed hoover did no harm and a world of good. Stop snickering! I was gentle, I promise. I’ve done it before with other keyboards and they still work, otherwise you would not be reading these words. I have a funny feeling it’s going to be one of those arcane computer whatsits – you know, the kind where you try it again in a few days and it works fine. It’s like “where you been?”

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I ran loads of scans and diagnostics today. I poked here and poked there. While I was poking my friend Norton, I disabled my ad-blocker to see what all the fuss was about concerning the banner ads now appearing on a screen near you. (Or not, as the case may be.) Expecting a big splash across the top of the screen, I was pleasantly surprised to find them unobtrusively perched on the bottom of the page. The ad, don’t remember what for, seemed tasteful and I thought the placement was a good compromise.

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We had a couple warmish days here on the Island, but today has been cold and rainy and I've not ventured outside my door yet. I'll have to step out at some point however, because Tansy needs her walkies. So much for the weather report.

My partner works in the building trade and his current project is here in the town where I live. He's going to be staying with me for a few days to save him having to travel in each day from the other side of the Island - which is only all of ten miles away but hey, it's a good enough excuse for me. He’s not a bad bed-warmer either, so I’ll get off the couch for a few days at least.

We don't live together and mainly see each other at the weekend, but we talk on the phone every day. Now that my daughter is away at school on the mainland, I've had the house pretty much to myself (and the furry ones) and I have to admit that I'm slightly anxious about sharing the place – even if it is only for a few days. It's a small flat so the addition of another person – and another animal - makes a big difference. He's going to turn up with his elderly diabetic dog Kim sometime in the next couple hours. I'm sitting here at the computer, surveying the cluttered mess that is my living room, knowing that part of the reason I'm writing this is to avoid the inevitable mad dash around to tidy up before they arrive because I won’t stand a chance once they’re here.

Hooboy! Speaking of tidying up, I'm a lucky lass because I also get to use the new hoover*, I bought yesterday, thanks to a little plastic card with MBNA written on it. My new hoover is an Electrolux, the all singing, all dancing, dirtbagless, powder-blue carpet-sucking machine that is sitting over in the corner, mocking me. My old hoover died – murdered by the child – a few weeks back and the situation in my living room reached crisis point yesterday afternoon. I mean, I can’t have carpet creatures chasing Vester around the flat like that! It’s just not on. So out came the Emergency Plastic. That’s EP for short, you know, as in “what does one say when one opens one’s credit card bill?”

Since the last one died (was murdered), I’ve been eyeing up the hoovers each time I go to re-charge my ‘lecci key for my pay-as-you-go-meter and thinking I’d have to look for something second hand (again) because the prices were astronomical for something that would last. (i.e., suck up loads of cat fur and beg for more; bear up under abuse from the child… she hoovers with a vengeance.) I was in luck though and got a reliable brand for a decent price – about half of what I’d expected to pay after my reconnaissance missions. This is the first brand-new hoover I’ve ever owned (sad but true) and so in honour of the occasion, I think I’ll give it a name. Maybe it will come to me if I get off my butt and throw it around the carpet for a while.

OK, enough procrastination, time to get carpet-sucking!

Bronwyn the lap-warmer

Or maybe not.

I was just about to post this blog when the phone rang. Disentangling myself from Bronwyn the lap-warmer, I walked across the room under the menacing glare of my powder blue sucker and picked up the phone to find out that my partner would not be arriving this evening after all and the hoovering could wait.**

I should probably explain something at this point. I live over a library. Although I don’t have to be as quiet as a mouse, I don’t do things like hoovering when it’s open. Except for Thursdays and Sundays, my carpet sucking activities have to take place either first thing in the morning or later in the evening. Hmmm… sounds familiar somehow. In my defence, that’s why I bought a much-needed hoover yesterday afternoon and still haven’t used it. By the time they’re shut downstairs, I can’t be bothered to start cleaning. Good thing tomorrow’s Sunday!

Well, now that the heat’s off, I’ll post this, make myself a snack and watch this week’s episode of Casualty.***

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*They call 'em all hoovers over here, whether it's a Dyson or Electroglide... er... lux… or whatever name-brand you can think of. It's a vacuume to you Yanks.

**SAE, is this an allowable WooHoo Moment?

***British version of ER.

The Manx Independent, a weekly Island newspaper, today published an article that began,

Homosexuality has 'huge health implications’ and should not be promoted as equal to heterosexuality, according to Education Minister David Anderson.

Mr Anderson successfully called for a House of Keys debate over a move to scrap a law banning the promotion of gay lifestyles to be delayed.

Further along in the article, Mr Anderson, who's only training is as a farmer, also states;

’ Heterosexual relationships are the society norm and we shouldn’t be advocating another form of sexual relationship.

People are free to make their own decisions and I accept there are other people who have different lifestyles. What I am saying is we shouldn’t be teaching homosexuality as an equal status to heterosexual relationships. Homosexuality has huge health implications.’

He wouldn’t elaborate on what he meant by this.

Can you believe this guy? I certainly can’t. Huge health implications? Get real Mr Anderson. If it’s HIV that’s got your knickers in a twist, most of the HIV positive Manx residents I know of are straight, each and every one of them and, no, we didn’t become infected by sleeping with bi-sexual men.

And how exactly, Mr Anderson, how do you expect any of your perceived “health implications” to go away if we do not insure that the homosexual teenagers on this Island have access to the information they need on how to stay safe and healthy?

I find it frightening that this guy is our Education Minister and on reflection, it’s not a big surprise that so many of our teenagers are parents. How can he not understand that kids have sex and they need information to protect their health and their futures?

The argument that including sexual information that gay and lesbian kids can relate to is “promoting” homosexuality is incomprehensible in today’s world. There was nothing in my own childhood that “promoted” heterosexuality – I was just born that way, tempered with mild lesbian tendencies. Can any of you reading this claim to have had your sexuality swayed by fact-based information on sexuality?

I’m not only angry with some of the MHKs* – specifically Mr Anderson – but I’m also angry with myself. This issue was opened to public comment back in June. I got the necessary official comment forms and … well, they’re bound to be around somewhere. I dropped the damned ball on this one as it came out right when I was in the thick of the autoimmune reaction I had to the Hepatitis B vaccine. I meant to post here about it too, and I think I did, but due to the brainfog that was extra thick this past summer, I honestly can’t remember if I did or not.

I am picking that ball back up though because with this as there is time due to the three-week suspension that has been placed on this Bill. I will be writing to all the MHKs tomorrow to express my dismay and disgust over Mr Anderson’s comments.

If any of you would care to, you can write in with your views to:

Opinions, Manx Independent, Publishing House, Peel Road, Douglas, IM1 5PZ Fax: 01624 611149 Or email newsdesk@newsiom.co.im Remember to include your name and full address – and a request for that information to be withheld in print if you wish. (They do honour this wish)

You can also find the individual MHKs mailing addreses on the Manx Telecome Website

It’s not just high electric bills we have to deal with on this Island; it’s also the ingrained homophobia. It is something that deeply disgusts me and I honestly thought things were getting better. I should have had a clue recently when I found out that the lad next door, who is a smashing lad my daughter’s age and training to be a steward with BA, has tried to commit suicide a few times in the past couple years, purely through trying to cope as being a young, gay lad in a place where laws exists on the statute books legalising discrimination against him. I’m sure you can imagine the problems I’m up against with HIV as well.

I’d be very grateful to any who respond to Mr Anderson’s comment of “Homosexuality has huge health implications.” Go get ‘em, guys! If anyone would like further information, please, either ask me in the Blog Comment Forum, or feel free to PM me. Thanks!

An abbreviated version of the article can be viewed at www.iomonline.co.im The articles are never online for very long so read quickly!

*MHKs - you need to click on the "Members of Keys" link in the left-hand column on that page to access the MHKs profiles.

Lately I’ve been toying with the idea of writing here on my blog daily and as is blatantly obvious, I haven’t. “Why?” Well, thank you for asking, it’s because lately I haven’t had very positive or noteworthy things to say. I guess I have it in my head that I should be making some sort of statement with my blog; not just “a statement” but a STATEMENT. I’m slowly coming around to the idea, however, that, well, that’s just a load of rubbish and an excuse. This is supposed to be a blog about living with HIV and I don’t necessarily have to try to make a conscious STATEMENT about living with HIV, I just need to say SOMETHING already! So here goes. I’m going to start subjecting you all to what goes on in my life on a more regular basis. If I bore the pants off you, let me know.

One thing that has been on my mind a lot lately is being cold. I don’t have central heating in my flat, instead, I have a fireplace designed for coal in my living room. I used it for the first few years I lived here, but between the sulphurous clouds of smoke that belch into the room, the carrying of coal up a large flight of stairs, the necessity of cleaning the fireplace out daily, the coal and ash dust everywhere and the fact that it is a very inefficient way of heating a room, I now use oil-filled electric heaters.

My heating bill should have gone down this winter due to my daughter being away at university but oh, no, that was too much to ask. The Manx Electricity Authority executed a monumental fuck-up in the shape of some dodgy millions-of-pounds loan and happily passed their mess onto Manx residents in the form of higher bills. During the warmer months, I pay about £10.00 ($17.40ish) weekly into my pay-as-you-go electric meter. Last winter I was paying £50.00 ($86.90ish) a week and I thought this year I’d be able to trim that back to around £30.00. ($52.15ish) Nope, no way. I’m paying £50-55.00 ($86.90-95.60ish). Let me make it clear, that is A WEEK. That pays for a couple light-bulbs in the evening, the hot water that I’m very frugal with, the stove, the fridge, the kettle, the computer, the washer that is only used once a week and ONE heater.

I’ve got one room that is heated to just about tolerable. My bedroom and the rest of the house is freezing – and that includes the very unpleasantly cold bathroom. I’ve been sleeping on the couch lately because it’s bad enough having night-sweats but even worse to wake up wet in a cold room. Sleeping on the couch wouldn’t be so bad in itself, but it’s only a two-seater as the room is too small for a full sized couch. It’s fairly cosy though because of all the blankets I have under me in case of night-sweats and I sleep on my back with my legs over the arm. But damn, living in one room is starting to drive me batty(ier).

The thing is though, what REALLY gets me about all this, is that being cold reminds me so much of being diagnosed. I was pretty much skint (British for being broke) that winter too and I remember sitting in my living room for days on end, shivering with cold and trepidation. I really hate being cold. It's so difficult to get moving in the morning and at times it feels like my mind seizes up right along-side my body. It was difficult to deal with right after my diagnosis and it's been difficult again this winter. My full-time job that I was beginning last year this time has evaporated due to my health and just like that February five years ago, I'm again facing an uncertain future.

Oh, I don't know. Or rather, I do know; this too will pass. The weather will be getting warmer slowly but surely and I'll figure out a way to ensure I'm not this skint again next winter. But for now, today, that's where I'm at - cold and fed up. I wish we humans had the option to hibernate for the winter!