Positive Life NSW

David looks back on his experience of managing multiple health problems, the impact it’s had on his mental health and wellbeing, and his recent success with a new healthcare plan that includes omega-3 fish oil.

Following on from the articles based on my experiences of HIV-induced brain disease, I reflect on what has been like a theme park ride, which, on reading the prospective highlights, I would have politely declined, taken a wide berth with a “no thanks very much” and joined the line for the ferris wheel.

It would be easy to focus on the negative aspects, which at times, had me in tears thinking that it couldn’t get any worse when it did. There are a few pivotal points that leave me thankful for the experience and, most importantly, the initiatives that I had in place to protect myself. My first article, ‘Still sailing in uncharted waters’ (Talkabout #162), sought to raise awareness of the risks of the emerging damage that HIV can do in the brain highlighting that viral markers in the blood do not always reflect viral activity in the brain. This alerted a number of readers to seek further professional help and changes to treatment. My second, ‘A beautiful mind experience’ (Talkabout #164), explored developing bipolar disorder which was catalysed by HIV and the treatment ‘soup’ in my brain as it recovered.

As a healthcare professional, I have gained a sobering and profound insight into those patients I have nursed over the last 25 years, in HIV and in a broad range of areas including mental health. The value of having a care plan in place that allows friends and healthcare professionals to support me to take another step, sometimes albeit so small, led me to the mantra ‘It always works out …  always’. I have had to retire from a familiar workplace, struggling to adjust to a new way of life without the discipline of a regular job. I have few financial worries as I had a retirement plan that I put into action sooner than I expected. A creative side emerged and I found solutions with the aid of my financial planner, accountant and solicitor and with a bit of help with a low-interest loan from my mother.

Through my experience with the highs and lows of bipolar disorder, I’ve learned the agony of self mistrust. Is this feeling good or am I about to have another psychotic break? Is this a down day or am I heading into a major depression again? Is it safe to go out or will I explode again at the shop assistant or act out a perfect road rage tantrum? I questioned every ailment, which was not unlike the early days of when I was first diagnosed with HIV, was it the beginning of the end or just a cold? Standing in the shower during one of my darker days of deep depression I remember seeing the stream of water hitting my chest but not feeling anything, coming to the realisation that it is in states like this that it would be easy to take a knife and cut myself, like many of my young mental health patients had done, just to feel anything but this pain, which for me was nothingness.

The other struggle was coming to terms with not returning to work. It was evident that the stress of a high-end career was not going to be conducive to my long-term mental health wellbeing and I had to concede that I needed to take better care of myself on all levels. This was not made any easier by the inadvertent questions that often get asked, like what you do for work? Responding with a pitiful account of my HIV drama I am sure left one person sorry they asked. Sometimes it is just better to let it go with “I have not been well” than press for further information. There is no box to tick on the litany of forms we encounter in day-to-day life to indicate ‘rendered useless for work by a failing brain’. The social pressure of being productive and gainfully employed is far more pervasive than I had ever realised. I began to regret those days where I loathed getting out of bed to go work. While my self esteem is still reasonably intact, news items and comments that discredit recipients of social support as lesser beings only adds to the decay of self worth brought about by failing health. Then the struggle with my internal work ethic took hold; guilt and the struggle of what to do with my life now were the obstacles I needed to overcome.

The depression subsided and the days started to get a little easier at first. The medication had repressed Godzilla but I turned into Blobzilla from over eating and lack of exercise. When I was starting to feel a little better, it became wearing when my partner and friends kept remarking on my sad affect when I didn’t feel sad. I noticed my skin had started to become wrinkled and flaky, my throat was swollen, my voice became hoarse and I became super sensitive to the cold. I struggled at the gym. Five minutes of treadmill and I was looking at the door to go home more exhausted than when I walked in. In my own mind I wasn’t depressed, this was different.
 

I questioned my doctors and read about side effects and as it turned out these were all symptoms of hypothyroidism caused by lithium. My psychiatrist ceased the lithium, leaving the list of effective antipsychotics dwindling due to the intolerable side effects they caused. A naturopath suggested high dose omega-3 fish oil (see below). I did a bit of research and discussed this with my psychiatrist who agreed that this might be a useful option with close monitoring.

Within 5–6 weeks of ceasing lithium and starting the fish oil, the symptoms resolved, my motivation returned and my affect improved with friends remaking on how well I looked. I returned to the gym with a new found energy and lost weight on the CSIRO diet. I lost my man boobs, was sleeping a good eight hours, flourishing with a familiar feeling of being back in my skin.

My psychiatrist mentioned discharging me which raised my apprehension as I had been so unwell a year ago. He felt given my viral load was now under control that my brain had recovered enough to try life without antipsychotics. To allay my apprehension, we developed a plan discussing the protective factors I needed to ensure were in place to help reduce the risk of relapse. These included protective factors such as controlling the virus with antiretrovirals that cross the blood–brain barrier, keep taking omega-3 fish oil, maintain regular sleep patterns, keep stress to a minimum and keep up the exercise and diet. We made a list of behaviors that would be indicators of a psychosis that my partner and I needed to be aware of, like changes in mood, and most importantly increased levels of energy coupled with lack of sleep, all of which I remember from my ‘Beautiful mind experience’. I am fortunate to have the reliance of my pre-psychosis days on which to benchmark my behavior.

While I did not have a structured care plan in place, as I have now, prior to becoming unwell I had a will, funeral plan, power of attorney and guardianship, sometimes called a ‘living will’. There is a difference between the two documents, quite distinct in their purpose and should be explained and drawn up by a legal professional. Do-it-yourself kits, while cheap, are risky. It would be better to use Legal Aid.

The most difficult discussion to be had is about what to do when you lose the capacity to function. Having been through this with my mother when I became responsible for her care elicited many emotions for her and was a difficult discussion. Having also walked close to the edge of no return myself, I can now reflect on the importance of these discussions and their documentation. It has been difficult enough managing my mother’s affairs, particularly after her death, and making so many decisions on her behalf.

Having this conversation with a partner, friend or family member and having it legally documented does many things including having wishes and expectations clearer and less likely to be left open to contention.

I have seen, particularly in the early days of the HIV epidemic, the damage that has been done to same sex partners when no will was present. While there has been some progress in recognising the rights of partners, there is nothing more important than the security of legal documentation. It is challenging enough with a will in place, as I am learning in managing my mother’s estate. This discussion can be facilitated by seeking the support of a social worker. There are also many avenues available for legal help. There are two things in life that are assured. There is not much we can do about how we got here but making the exit a bit smoother will be a kind thing to do for ourselves and for those we care about.

Omega-3s
Omega-3 oils occur naturally in oily fish, seafood, animal products and plants, and you can get these in your diet with a healthy eating plan. There are some instances where you may not get enough and supplementation may be necessary.

There is a lot of anecdotal evidence to suggest that omega-3 fish oil supplementation can improve your heart health and lower your risk of coronary heart disease. The Heart Foundation of Australia has a guide to omega-3 and a position statement on its website (www.heartfoundation.org.au).

The American Journal of Psychiatry and other journals have reported that depression and bipolar disorder are related to lower rates of seafood consumption and that omega-3 supplementation may have mood-stabilising or antidepressant properties. However, more research needs to be done.

If you want to know if omega-3s might be helpful for you, talk a treatments officer, your healthcare professional or a naturopath.