February 2005 Archives

My blog entries are a bit like what they say about London buses - you wait for ages then two come along at once. (So if you haven't already, read my other blog entry too!)

When I posted the previous blog and checked it on the website, I noticed the date: February 20th. I realised with a jolt that this coming Tuesday is the 22nd and my fourth anniversary of being diagnosed with HIV. It's also the anniversary of the realisation that I had been infected in the spring of 1997.

I was prompted to dig out my journal from back then and I've decided to share some entries.

March 3rd, 2001

I hazard a glance downward and find my bootstraps in a sad state of disrepair. Frayed, torn, worn down to mere stumps, I wonder if I can summon the strength and dexterity to grasp them between my fingertips, or teeth if necessary, and once again haul myself up by them. Surely they'll break this time! Will this latest obfuscation of my life prove to be the one that sends me reeling into an abyss of self-loathing, self-pity and unretractable madness? The moment of my faith is wavering and my habitual vice is trying to reassert itself. I think dark thoughts and beat myself over the head with them. I refuse to think and my body seizes up in panic. I go on a 'be here now' trip and my airplane dips and rolls, climbs and plummets; stop it now I wanna get off.

I tend to view my dis-ease as the detrimental detritus of a dysfunctional family. I do not wish to place blame, I only seek to establish some sort of order, however fragile, out of this raging whirlwind I find myself caught up in.

It's a very private madness. Outwardly I smile and nod and say "fine, thanks!" while inwardly I seethe and scream and gasp for air.

And my faith? What of my faith? My new found, embryonic belief that everything is as it should be, the good and the bad? Well, it has taken a good old-fashioned kick in the seat of the pants. If I felt unworthy of grace before, well, now I feel even lower than the parasitic, microbial pseudo-life forms of the various viruses that even now are doing a jig in my bloodstream.

March 8th, 2001

I'LL COME STRAIGHT TO THE POINT... YOU'RE HIV POSITIVE.

what
so what
so what am I supposed to say?
what am I supposed to be
now
now that I am no longer
what
I thought I was?
who am I
now
now that yesterday's me is
gone?
tomorrow
never comes
but who will I
be
then?

March 9th, 2001

I want to take all the pain in my heart and put it down on a page. I want to take all the uncried tears and lock them safely up in ink and slam the book shut. I want to analyse and exorcise. I want to shed the tears but they remain bottled up, like an expensive perfume kept 'for best', when the best never comes.

So many conflicting ideas and emotions. I want to sleep all the time, I want to be active and creative and productive. I want to cry and I want to laugh. I want to scream out in anger and I want to hold my hands out in forgiveness.

I want to learn about HIV/HCV and I want to forget they even exist; more to the point I want to forget that they exist inside of ME. It's all a bit exhausting and for the most part I end up sitting, losing myself in a Telegraph crossword. Today's crossword escapes me so I sit listening to the clock ticking, shivering in the cold, writing and smoking and drinking coffee.

My appetite sucks and my period hurts. My, aren't we feeling sorry for ourselves today. I don't want to drown in self-pity. I want to grab these little bastard viruses and shake them by their nasty little lipid sheathes and flush them down the toilet. So I sit and shiver and wish it were summer.

March 17th, 2001

Typical. Just when I thought it couldn't get any worse, in comes a letter from my landlord (the local housing authority) announcing a fifty percent hike in my rent. Immediately I have to fight down the rising bile of paranoia. "They know I've got HIV and want me out" is my first thought but common sense and what's left of my sanity prevails and I pick myself back up off the metaphoric floor. Disjointed thoughts flood in; I go into detach mode and watch the deluge from the corner of the room. Thinly veiled panic is becoming a way of life.

I feel absolutely exhausted today and Lily (pet name for my liver) has been complaining all day. Can't eat. I feel lost and detached. Can't even trust the roof over my head. 95% of my energy right now is going on convincing myself that it will all turn out alright. Watched Comic Relief last night. It helped give me a bit of perspective. It's like sticking superglue in the cracks and hoping it holds. Problem is, lately, every time I get one set of cracks shored up, new ones appear.

Back to today.

I'm glad I have my journal to look back on. Not only does it show me how far I've come since Diagnosis Day, but it serves as a vivid reminder of how I felt back then and that helps me to remain compassionate to those of us who are recently diagnosed. Reading through the pages of my journal brings back the feelings of panic, confusion and uncertainty I felt and makes me appreciate my inner calm of today all the more. I hope that posting some of my thoughts will help even just one newly diagnosed person to realise that you will get through the darkness and live again. Give yourself time.

Hey folks, long time no blog.

Yes, the job is to blame. Well, ok, so I'm to blame too, but believe you me, it's entirely mutual. (Ah, Mutual of Omaha. Does anyone else remember Wild Kingdom?)

My bloglessness might also have something to do with the way my mind wanders sometimes....

*waves hands in an airy fashion*

(Hehehe, my spell checker just suggested bloodlessness. No-no-no - that was the other day after I left the clinic. M'blood's all topped up today, thank you very much.)

I've worked full time now for a total of six weeks. Last I worked full time was in February 2001. I think many people underestimate the effects of going back into a full time work force after having been off work for an extended period of time through ill health. Societal peer pressure dictates that someone who has regained their health should give up public moneys and earn their own income, but where is the support - why is the need for such support not apparent? But I digress; this wasn't meant to be a rant. Suffice it to say that while I've been very well supported in my endeavour to return to full time employment, I am very much aware that many others are not so lucky.

The transition has been a challenge. Up until a week or so ago, I thought I was still suffering from the effects of fatigue due to my new schedule. While this was true in the beginning, after much soul-searching I realised what was really troubling me - a lack of solitude. I love my solitude. During the four years I was off work, I had plenty of time on my own then suddenly I was surrounded by people all day. The time I did have on my own, I spent fretting about when I would next be required to be in the company of others. The nature of my job and the training I'm doing means that I am often left emotionally and mentally exhausted and so my 'me' time is very important. Now that I've realised what the problem is, I'm making some headway into solving it. Everything in my life right now is about balance. There's work, study, motherhood, time for my partner, my health concerns (finding the time to eat right and getting enough rest), spiritual practice - and let's not forget recreation. All work and no play makes Ann a boring crabass.

(LOL, there goes the spell checker again. This time it suggested carcass. Ok, let's go with that. All work and no play makes Ann a boring carcass. Hehehe!)

One thing that I'm finding difficult to reconcile is the fact that I don't have the time to spend on the forum that I used to. I'm also slipping behind in my personal correspondence, some of it with forum members. This has proved to be the most frustrating aspect of going back to work. The forum has been the mainstay of my existence for four years now and I miss it terribly. I still find the time to read through most of the threads, but finding the energy to post is another matter entirely and I feel guilty about that. Yes, I know, it's a waste of energy to feel that way but there you have it. I suppose this is a good place to mention that I feel eternally grateful for those of you who are taking the time to reach out to new members, making them feel welcome and passing on information. It makes me feel a little less guilty when I don't have the time or energy to do my bit.

Because my lack of forum - and blog - time is something that is bothering me quite a bit, it's one of the things I'm actively working on changing. So far I've only taken baby steps and I've had a set-back in the form of a yucky head cold, but I'm working on things like scheduling my time more effectively and being less long winded when I do post. I've also put in a word with the Cosmos about a thirty-two hour day but so far, the Cosmos hasn't gotten back to me on that one.

But you know what? In the final analysis, I'm happy. I'm content. I'm looking forward to the Future, making plans that I never thought possible four years ago. Yes, that's Future with a capital EFF, as in the long range Future, the one that many people don't think those of us with HIV should worry our pretty little heads about. Now if I could just find time for everything....