Positive Life NSW

Elaine on aging gracefully with HIV

I joined the HIV crew in 2005 at the tender age of 22. This was a dark new place I was entering. It certainly changed my view of the world… and often the world's view of me. Some days I felt like I had changed species and I had to adjust to a whole new mindset. The doctor who gave me my diagnosis told me I had ten years to live and that I shouldn't consider having children. I have since proven him wrong on both counts.

This Estimated Date of Expiry dominated my life. It influenced my every thought, action and reaction, not always in a constructive way. The early years were, in fact, very destructive. Even though intellectually I knew I had an abundance of hope and opportunity, my emotionally stunted self chose to dwell in the murky depths of impending doom. Fortunately I also had a lot of life-changing moments and revelations, which I will be eternally grateful for, and even though I lost many friends to ignorance and fear, I also found some amazing people who I will cherish for the rest of my life.

My tenth year was a whirlwind of high anxiety and continued good health. When it passed by uneventfully and completely death free I was overwhelmed with relief and a completely irrational bout of indignation. Nothing annoys me more than wasting a good worry and I had just wasted a whole decade's worth. Not happy!

2007 has been a challenging year for me. Like drops of water on a stone, HIV has been gradually eroding my immune system and things that had never made an impact on me (the flu, for example) knock me flat on my back for weeks. For many years HIV treatments were something I used when I was pregnant or when I felt my body needed a break. My latest sojourn to Club Meds has not been optional, and I am faced with the reality that my immune system can no longer sustain my body without assistance.

As my body and my virus age and change I find I am not as resilient as I once was. I have lost the elasticity of my 20s in more ways than one. Things that once lived a perky existence up North are migrating South at a rapid rate and I don't bounce back from things the way I used to. Late nights and hard living are a thing of the past. More frequently I find myself sneaking cat-naps in during the day. Now more than ever I have to listen to my body and comply with its demands.

It can be difficult at times to differentiate between the symptoms of aging and the damage HIV is doing. It could potentially be easy to dismiss the early warning signs of larger problems as being “old age”. Constant vigilance is required but can be easily forgotten. Coping with viral and emotional exhaustion is harder now. Managing my family and my day to day life whilst being constantly tired is frustrating. It doesn't seem to matter how much sleep I get, I am always tired. I see the other mums around me who appear to have boundless energy to keep house, raise kids, work or run businesses and I envy them. I am sure it isn't all as pretty as my mind makes it out to be, but I can't help feeling like a burden sometimes. Instead of contributing to the family finances I am an extra drain on them. My house is never as clean or tidy as I'd like it to be. But I guess these are trivialities in the grand scheme of things.

The thought of being dependent on medication for the rest of my life frightens me. I am used to being strong and healthy without them. What happens if I stop taking them again? How will they affect me long-term? I have to rethink my entire lifestyle because what worked for me in my 20s no longer works for me in my 30s. And what about my 40s and 50s and even beyond? I find myself compulsively checking and rechecking for buses when I cross the road. It certainly is much more conceivable that I will be run over by one than die from HIV these days.

Actually allowing myself the luxury of projecting forward is a bit of a novelty. Knowing that if I look after myself and my body, I can be around for decades to come is at once exhilarating and terrifying. Having wasted the most formative years of my adult life waiting to die and living reactively instead of proactively has left me with little sense of direction. I find myself asking “What on earth am I going to do with my life?” But at least I can ask myself that. The glass is half full after all.

I am at a crossroad right now. Life feels different all of a sudden. I have to face the fact that HIV is taking its toll on my body. I have to reassess my priorities and decide what is important, then adjust my way of thinking and behaving accordingly. I have no choice but to be totally proactive in the management of my health and well-being (heck, I even joined a gym and have actually been going!). In fact I have to move myself well up the priority scale, which, as a mother, goes against every instinct and behavior of the past seven years.

Things change all the time, for better and for worse. Flexibility and a willingness to embrace change are so important. Keeping up to date with the latest research and development is something we all need to do, to help us make the right decisions for our health. Don't be afraid to try something new. - Whether it's the latest treatments, or alternative treatments, leisure activities.... whatever. Keep an open mind towards life. You never know what's around the next corner. The challenges I face as a woman, as a wife and as a mother are vastly different to those of the more dominant demographic within the positive community. But at the end of the day, we all need to take the same steps to ensure our longevity and improve our quality of life.

After all, none of us want to be remembered for how we died, but instead how we lived our lives.