July 2006 Archives

So what is it that does our heads in? Is it the drugs? Is it the stigma? Is it the virus itself? I don’t think I know of one person who is HIV positive who doesn’t have some sort of issues. Many of us are depressed. Many of us are chronically anxious. Some of us are in denial. Most of us harbour deep fears for the future, even if we can’t, even if we won’t admit it – not even to ourselves.

I seem to know more positive people who are on psychoactive drugs than off. It’s common. It’s common as muck and muck it is because it doesn’t have to be this way. We are thrown in at the deep end and left to sink or swim. Sure, for most of us, our bodies are monitored and our CD4s regularly scrutinized. But what about the bit that makes us who we are? The doctors are concerned but they don’t really want to know. They just don’t have the time. There’s too many of us for the specialists and the GPs don’t understand. They reach with relief for the prescription pad and write up another pill. And we take it and we push it down; we swallow our feelings with our daily dose of antidepressants and we rest at night through the magic of sleeping pills. It’s another way that pharmaceutical science has transformed HIV into a “manageable” illness. Our innermost feelings are chemically managed along with our blood cells; inner demons are chemically bludgeoned alongside HIV.

But is the management team always up to snuff? Are we managing nothing more than a mess?

A newly diagnosed person becomes an instant initiate into a secret society of one and millions. We knew about this society but we preferred to smile politely and turn the other cheek, as though smacked in the face with mortality. We never thought it would be us, even when we expected it. It didn’t concern us. It was… other. It was them. Suddenly, we are other. We are them and we are alien to ourselves. To be newly diagnosed with HIV is to be lost and alone and in free-fall like a child’s nightmare when you woke mid-fall - but this time you do not seem to be waking up…

One of the major themes I’ve seen in newly diagnosed people – myself included at one time - is emotional isolation. We’re thrust into this free-fall nightmare totally alone with our frightening thoughts and there seems to be very little effort being made to address this issue. The people we see on the AIDSmeds Forums are just the tip of a very large iceberg and the thought of those who go through their first year completely on their own, without emotional support, sends chills down my spine. I firmly believe this lack of attention to our emotional state is something that helps to increase the rate of new infections and I believe it has a lot to do with whether we thrive or dive with HIV.

The mental health aspect of HIV infection is a subject I am drawn to again and again. It touches so many areas of our lives with HIV and I am at a loss to understand why it is a subject most often ignored completely, acknowledged but brushed aside or at best, medicated. What would make more sense to me is a more pro-active mental health approach from the medical establishment from the point of diagnosis onward. In the coming weeks I hope to be able to research this more closely and come up with some ideas of how this problem might be tackled. As regular readers will know, I feel I should be doing more for the positive community and maybe this is my calling.

If any of you have stories about how your mental health needs were managed as a newly diagnosed person – good or bad – I’d love to hear from you in the Comment on the HIV Blogs Forum.

It’s only fair to update readers on how the Viking Festival is going, after my rant the other day. Last night was the first night of the tribute band portion of the proceedings and I have to admit it wasn’t as bad as I feared it would be. Although the windows at the back of the house were rattling a bit, it wasn’t so bad in front. I opened the window behind my desk in the living room so I could listen to the Queen Tribute band and although the lead singer did sound remarkably like Freddy Mercury, he just couldn’t hit the high notes Freddy could. That man had a beautiful voice and I have mixed emotions about his many imitators.

As always, “We are the Champions” brought a lump to my throat and tears to my eyes. ”And we’ll keep on fighting, ‘til the end…” Oh Freddy, if only you lived to benefit from PIs. I sometimes wonder if he would have gone on to become a Champion of the Fight Against HIV/AIDS.

Tonight the main tribute band is Abba; I hope readers will forgive me if I wear earplugs and pretend it isn’t happening.

I’ve been having another one of “those” days and today’s speciality has been what I call a “cricket bat headache”. That’s the kind where I feel someone’s hitting me upside the back of my head with a cricket bat every time I move too quickly or get up off my chair. I tend to walk around half crouched over when I have one of these and I don’t even realise I’m doing it half the time. I took a sumatriptan around two but it didn’t work. Sometimes they do, sometimes they don’t. Took another one at five and it’s taken the edge off so I can walk upright again. Good thing too… as I said I often don’t realise I’m walking hunched over – until I manage to walk into something I should have seen.

But, tomorrow’s another day. It just is, ok?

You caught me on one of “those” days. I’m achy, tired, premenstrual and my brain is fogged in. I’ve realised today that I lied recently on the forum. I do think about HIV in relation to my own life. I just don’t call it by its name, I have “one of those days”. I don’t stop and think, “I feel like burnt, soggy toast today because I have HIV.” No, I just think, “ouch” and “whatsis”. That sums me up on a day like today. It’s not my memory as such. I don’t forget things so much as misplace them. It’s like the next word in my sentence just flew down the wrong neuron and lodged in my sinus. It will show up sooner or later. I think they take the scenic route.

Oh, and no, I don’t always get fogged in at the same time as I get achy. I must be having a two for one day. No, make that three for one. PMS. How could I forget that?

Yeah, so that’s it for today. If I’m going to post everyday, I’d be cheating if I glossed over days like today. It just is, ok?

Tynwald Day

I’ve come down with a bad case of MCS, an illness characterised by the urge to take a fellow Rock Dweller down a peg or two. The symptoms are outbursts of righteous indignation and incoherent ranting, followed by vague feelings of guilty unease – followed by more ranting and so on. Manx Crab Syndrome got its name through generations of fishermen watching crabs pull each other away from escape. A crab figures, “Buddy, if I’m stuck here in this miserable net pot, so are you.”

I don’t often get MCS, but I’ve got it bad this time. My town on the Rock is hosting a week-long Viking Festival, complete with a working Viking village on the beach, just like in the old days. Only this particular village has one of the stages used at Glastonbury plonked down on the sand only yards away. It kinda ruins the whole effect, ya know? Aside from two nights of “tribute” bands – and the resulting out-of-place stage - I think it’s a great idea. No, it’s not the Viking Festival that bugs me, it’s the modern clutter they’ve tacked on to the side.

My Manx Crab is snapping at the man who organised the festival, purely to create a week long advertisement for his property development company. The commercial aspect is why he’s brought in the bands - he’s squeezing every last drop out of Preserving Heritage. I feel like he’s turned my neighbourhood into an amusement park. He likes to spout about how much good he does for the community, but ordinary locals can’t afford his conversions. I’ve also spotted him eyeing up the building I live in, with his clipboard in hand in the middle of the street... Sheesh.

But that’s beside the MCS point. The point is, you can’t move down my end of town without seeing huge banners blocking the view with his logo. His theme supersedes the Viking theme. A huge grandstand has been erected on the beach, blocking the view of the castle, Viking village and bay, draped in… you guessed it, banners that announce his presence with not a Viking in sight.

I don’t suppose it would be getting on my nerves so much if it wasn’t all happening on my doorstep. And anyway, I don’t understand what Abba, Queen and the Bee-Gees have to do with Vikings. Arrgg… they’re doing a sound check now by the sounds of it, and that will only be for the “Free Beach Party” tonight. Free? I don’t normally have to pay to walk on the beach! It’s loud anyway. Have I mentioned that the stage is only around 400 yards as the crow flies (if that), from where I sit? Yep, there were people sitting farther away from that stage when it was at Glastonbury than I am now, only presumably they didn’t have three buildings blocking their view. ~sigh~

Yeah, so, MCS. I’ll get over it in a few days. It’s none of my business that a local is making money off this – even though it is at my inconvenience. Hoards of people are enjoying themselves, including the Viking role play people. (Is there an official name for role-play people?) I know what the cure is – take a deep breath and chill out, Ann. Get off your soapbox before you fall over and get hurt. It will all be over Sunday evening. If you can’t let go of this, please seek the assistance…

By the way, today is Tynwald Day

”The observer at St. John's on 5th July, the Manx National Day, watches a ceremony which has continued unchanged, except in detail, for more than 1,000 years. The annual outdoor sittings of Tynwald, the Manx Parliament, date back to the Viking settlements which began in the eighth century of the first millennium AD. No other parliament in the world has such a long unbroken record.” ( tynwald.org )

Guilty pleasures.

We all have them. Something that makes us feel good ~aahhh~ but guilty. My own guilty pleasure is my garden. I’ve been spending most of my time out here since this past May; thinking, pottering, tinkering, healing. It’s doing me a power of good too. You’re probably going to be hearing a lot about it in the coming weeks, so here is a short history of my refuge of peace.

My flat, along with its oddly-shaped garden, is part of the local library. When the place was built in 1907, it was a grandiose, two story affair with a large garden at the back. When a new, single story was added in 1952, the garden was reduced to a mere strip of its former self. When I first moved here in October 1998, the garden was dotted with a few small bushes but was otherwise barren after years of herbicide abuse. The garden and I hit it off straight away; we had – and still have - things in common, although this is something I’ve only recently understood.

I’m told the garden was tended with love by one of the former tenants, but that was many years ago. The flat sat empty for a long time and the garden grew neglected. The town’s gardener began to use the quirky strip that disappears round the back of the library as his personal plant dump. Not composted, just dumped. He’d covered over part of the building’s damp-proof course with eighteen inches of unwanted topsoil and dead plants. He put his energy into the more public gardens and would only spend enough time here to saturate the ground with poison. When I moved in, he asked if he could carry on “using” the garden and I gave him a resounding “NO-thank-you-very-much!” He didn’t use the garden, he didn’t act as caretaker, he abused it.

The first bit of gardening I accomplished after my move was to build a small retaining wall from red sandstone, gleaned from the recently demolished old mortuary cum fire station. I used earth in place of mortar and much to everyone’s surprise, it still stands firm eight years later. I dug in the older dumped plants and composted the rest. The bigger problem, the years of chemicals, I had neither the knowledge nor the money to fix. If a garden had a liver, I’d give it milk thistle, but I’ve no idea how to fix poisoned and ailing soil. As winter was fast approaching, I decided to let Mother Nature take her course and hope she’d heal on her own.

The following spring brought with it a few spindly weeds and my hep C diagnosis. For the first time in years, the garden was without herbicides and rubbish and I was without alcohol. Neither of us missed our chemicals but we both struggled against our poisoned past. I wondered what Mother Nature would come up with and she managed spurge, goose grass and dandelions. I was tired and discouraged with life in general so the garden was left to its own devices. Optimistic gardening plans made over long winter nights were forgotten. Neither garden nor gardener was healthy enough to do more than lie fallow.

I lost all interest in the garden over the next few years. My hep C condition was steadily worsening, and after a hard day’s painting, playing in the dirt was the last thing on my mind. As time went on I was diagnosed with HIV and treated for hep C with the delightful Pegintron. Somewhere along the line, I began buying various cheery little plants to brighten up my front door, but I didn’t take much notice of the garden itself other than to trim back the surviving roses that grew wild on the wall. The garden had its life and I had mine.

Then during the summer of 2003 – after Pegintron - I suddenly noticed the garden had blossomed. Three predominate wildflowers moved in and were flourishing. A few plants I rescued from being dumped by the old gardener managed to survive and grow strong even after what they’d been through - including my neglect after rescue. The whole garden was coming back life and so was I. Mother Nature continued to have her healing way with the earth and the soil became enriched by the cycles of plant life, busy insects and burrowing worms. My CD4s were climbing and the roses were blooming. We were both slowly coming to.

The summer of 04 found me learning how to function in the alien environment of an office, finding my feet and strength in part-time work and training, and adding bit by bit to my potted garden. In early summer of 05, after struggling my way back to full-time employment, a bad hep B vaccination reaction forced me back on to incapacity. It was a terrible blow. I felt as though I were back to square one, discouraged, weak, tired and often in pain. Meanwhile, the garden had no such set back and went merrily on its wild way. I added to my collection of potted plants and hoped for the best.

This year my strength is returning and I’ve begun to spread around the garden a bit, sowing seeds, creating a sitting area and most of all, enjoying the peace of my garden. I love being out here, I love writing out here, and so the Garden Dispatches are born. Today is the American Independence Day and tomorrow is the Rock’s much older national celebration – Tynwald Day. I’ll be here in the garden, weather permitting, so check back for the day’s new Garden Dispatch. I might tell you more about why my garden is a guilty pleasure, or I might find something else to think about. There’s only one way to find out…

(This blog was written the day before it appeared here.)

I spend most of my time in the garden these days, reading, writing and getting my hands dirty. I’ve created a little haven out here and although it’s my favourite place to be, I’ve missed having a word processor at my disposal. However, that’s been taken care of for now because my daughter is home for the summer. Naturally, the first thing I did after all the niceties were taken care of was to commandeer her laptop.

“Hello dear, how was your trip, I’m fine, no, Tansy is with her hero. Cuppa tea? Yes, nice photos, he’s cute… where’s the laptop?”

The laptop and I had a trial garden run yesterday. I managed to navigate the alien keyboard without too much difficulty, but a mouse that wants to be tickled instead of clutched proved to be more of a challenge. After much fiddling and fussing, I finally managed to launch the word processor and twine my way into my very first garden writing. Just as I was getting into a groove, I received a rather rude message about the state of my battery. I mean really, sometimes I think computers have no respect whatsoever for the creative process. They up and pack in when you least expect it and if that alone isn’t enough, they also threaten to wipe your work right off the face of the known universe if you don’t comply with whatever demand – like juice - is on their mind… erm, chip.

So anyway, the nearest power is upstairs, so I had no chance of supplying the demand. There was nothing for it but to memory-stick what I’d written, take the lappy back upstairs and plug it in. So much for writing in the garden! I got on with putting up a trellis instead. This afternoon I managed to get my hands on a cable reel with 25 meters of laptop-reviving energy connection and so, dear friends, I now write with no worries of interruption – at least electronically speaking.

Ah, but life is never that simple, is it. After devising a way to lower the reel out of my bathroom window, over slates and gutter, to the garden below, I plugged everyone in and took a coffee out to my seat. I sat in the sun, opened the laptop and heard the creaking sound of my gate and the rustle of shopping bags… ~sigh~

“Hello dear, how was shopping? I’m fine, no, Tansy just got back. Cuppa tea? Yes, nice present, it’s cute… yes, I’m just about to use the laptop.”

Or at least I was going to use the laptop! We had a nice chat and catnipped the cats so we could laugh at them. Before I knew it over an hour had passed and the sun was on retreat. The young one was off for a shower so I’ve been writing for about an hour and in that time, I’ve had to go from a strappy tee and open cotton blouse with jeans, to buttoning up my shirt, putting a jacket on and I’ve just added thin long-johns. After wrapping up, I brought a small thermometer out and watched it quickly plummet from 72 degrees in my bedroom to 58 in the garden. I tell you, it’s chilly here out of the sun. We had two weeks of summer at the beginning of June and here in the beginning of July its freezing. Yes, I know people are sweltering across the heartland of America, but I just had to put long johns on for cripes sake!

By now you probably have probably realised that I love writing outside and you might have an inkling that more blogs are on their way. Well, I hope you’re right! It’s always a good thing to write about what you love and right now I’m in love with my garden. I love coaxing and nurturing the plants. I love the sun, the birdsong and the peace. There’s something about being surrounded by plants that I have always found soothing. I come out here to something new every day; last night I saw the first buds on the nasturtiums and this morning the first rose was about to burst. I’ve been tinkering around with cheap materials, twine, bamboo, wooden trellises and transforming what was not long ago a barren waste into a private retreat. It’s been so good for me on so many levels, getting me out of the house for some fresh air and physical work, soothing my ruffles and providing gentle time to think. I love my garden, slugs and all.