Positive Life NSW

Since my last article in the April–May edition, I have been on brain-penetrating antiretroviral medication for close to 12 months now. The change in the clarity of my memory and thinking has been remarkable. But all has not been smooth.

After a favorable neuropsychologist’s assessment and the okay from my neurologist, I embarked on a staged return to work which I planned with my health care professionals, my supervisor and human resources manager. I was pretty much in control and at the beginning the half days were taxing. But as I built up the hours my energy and motivation returned.

I said goodbye to Centrelink, though I still have some benefits in place and can return to them if something goes wrong over the next 12 months. I have to say that they have been very supportive.

There was a sense of relief and pride in being able to pay the bills and still have some money left in the bank and not having to dip into my savings. My lifestyle was returning along with my motivation and enthusiasm. Going to the gym was no longer a struggle, bills were paid on time, I contacted friends for dinner, ran my mother’s business and rolled out the big guns at work. I was on a roll.

However, there was something very sinister afoot and I didn’t notice the signs of what was really happening. The signs were subtle a first. I was sleeping a little less each night, which wasn’t a problem given that I had been sleeping 10–12 hours, waking up stuffed and then sleeping for one to two hours in the afternoon before I started treatment. I started taking half a sleeping tablet, which helped a bit. I woke up just ‘fine’, the first sign something was wrong.

Then I wanted to ‘save the world’. I started stalking people I worked with who had spoken disrespectfully to me at meetings or in front of customers. I yelled and swore at a worker who had spent my budget and left me nothing to work with and I protected all the people who had been bullied in my team while I was away. In retrospect, I would do all these things, but not by coming in with a Gatling gun, Howitzers and laser-guided missiles as if I was at war.

My partner and I had a monumental fight, a screaming match that put the cat under the sofa and the dog shaking in his kennel. Subsequently, this taught me something about respect and caring – a revelation for a nurse. The weekend before it all came crashing down at work, I was up all night writing copious notes. At 2 am Sunday morning, I took half a sleeping tablet and went to bed. At 5 am, I woke up and put statistical formulas into the computer in Excel and came up with a theory for my PhD. My work colleagues and academic friends have been encouraging me to do this for about two years. I have my PhD topic now. I went back to bed for a short sleep then met a friend for coffee. What we were joking about probably wasn’t as funny as my pressured laughter may have reflected.

Sunday night I took another half of a sleeping tablet, got up at 6 am and arrived at work by 7.30 am where I put the finishing touches on my formula to save the world. By lunch time my head felt like it was ready to explode and I got one of those ‘you’ve lost it’ looks from one of my colleagues. I suddenly became scared and frightened.

I decided to call my neurologist and got an appointment for Wednesday, and then contacted my counsellor and GP and got appointments with them also. I needed people around me that I could trust and who knew me.

I learned that I had experienced a mild form of mania known as hypomania. The signs and symptoms were all there, but no-one recognised them. I was feeling great and was very productive, but I was not sleeping, had fast speech and became intolerant and easily frustrated. I also had grandiose ideas like saving the world and began communicating with inanimate objects.

Each of us with HIV has the potential to experience something like this. It will possibly be different to my experience, but there are some common signs like those I experienced, as well as racing thoughts, poor judgement, spending sprees, abuse of drugs and aggressive behaviour. Your friends may think you are out of character with no explanation (eg mind altering substances). You may also deny that anything is wrong and may forget what you have done. If any of this happens to you, talk to someone you trust and see your GP.

I was fortunate that I was able to remember everything I had done. I told my boss I have done much worse, but never at work and that I was very embarrassed. She replied, “That office has seen much worse,” which intrigued me. Most importantly, I now have an experience that helps me to relate to what it is like to have dementia and now a psychosis.

Prior to this episode I had a will, power of attorney (POA) and appointment of enduring guardianship in place. What I didn’t have was a plan for people so they knew what to do if they thought I was losing it or lost it completely. I have since developed a list with the contact numbers of my professional carers and POA and their contact details as a kind of mental health plan in case anything like this happens again. I discussed this plan with my partner, family, friends and next door neighbors, one work colleague and most importantly my boss. After all, it will be these people and this plan that will help me keep well and reduce, hopefully, the risk of embarrassing myself again.

Postscript: It has been two months since this incident and I have been diagnosed with bipolar disorder. Currently, I am at the opposite end of the spectrum of mania and in a depressive phase. I now know what they mean by the ‘Black Dog’ as it has taken a mammoth effort to turn on the computer and put the final edit to this article.

For more information on HIV and dementia or bipolar disorder, talk with your doctor. Other helpful resources include:

• AIDS Dementia & HIV Psychiatry Service (ADAHPS), tel: 02 8382 1810, www.health.nsw.gov.au/adahps
• Dementia & HIV: www.thebody.com/treat/neuro_dementia.html
• Bipolar Disorder: www.thebody.com/content/living/art6293.html