Every time I look in the mirror I think about ways I could improve myself. Like the rest of the human race, I guess.
All I need to do is a bit more exercise, I think. And steer clear of fatty foods.
So why do I find it so hard to make these changes and stick to them? Why do I find it so easy to think of a reason why I don’t need to go to the gym today? Why can I never stick to a diet for longer than 24 hours? Why do so many of my positive friends have such trouble giving up smoking?
For Celia Eregizli, an occupational therapist at the Royal Prince Alfred Hospital in Sydney, one of the main reasons people find it hard to change unhealthy habits is because the directives are often coming from someone else.
‘The motivation to change needs to come from you,’ she says.
Celia has found that if people sit and reflect on what is really important in their lives, before deciding on the changes they want to make, they are often then more receptive to the ways they can bring about these changes.
Last year, she and another occupational therapist ran a workshop on how to make life changes for positive men in Sydney. Along with ACON’s Women’s Project, Pozhet and Positive Central, she is planning a similar workshop for positive women this year.
‘In order to help people achieve their goals, we use an activity-based, holistic approach to facilitate the learning of techniques,’ Celia says.
A good place to start is to draw a pie-chart of how you divide up your time at the moment. Include how much time you spend with friends, with family, on your personal care, spirituality, and so on. Then look at whether your chart is balanced or not. What is not working and what needs to change? How satisfied are you with your life?
After this initial life review, the group then discusses things like motivation and the strategies they can use to bring about positive change.
‘This heightens people’s awareness,’ she says, ‘expands your knowledge and gives you the courage to develop personal goals and actually work towards achieving them.’
Interestingly, many of the positive men in the group found that often what they thought were goals changed when they put them under scrutiny. One guy thought he wanted to get a job and go back to work. On reflection, he realised that what he really wanted was to go to TAFE and train for a different career. Another thought that giving up smoking was his first priority but then realised that learning how to destress and reduce the trigger factors for smoking had to come first.
To make change more achievable, it’s often a matter of altering the way you think about a problem. Celia suggests you try to remove the obstacles in your head and make your primary goals more attainable. Maybe start with smaller achievable goals, at first, and not be disheartened if you ‘fall off the wagon’ a few times before you see results.
It’s also important to make new behaviours a part of a regular routine. If you want to start an exercise program, for example, you need to give it time in your daily routine.
This reminds me of Deanna Blegg, a Melbourne woman who became a personal trainer to overcome the effects of HIV wasting and lipodystrophy.
In the AFAOAustralian Federation of AIDS Organisations. AFAO is the peak non-government organisation representing Australia's community-based response to HIV/AIDS. AFAO's work includes education, policy, advocacy and international projects. /NAPWHA Balance campaign we did a few years ago, she says: ‘It’s easy to sit at home and use the virusA small infective organism which is incapable of reproducing outside a host cell. as an excuse not to be bothered. You can blame the virus for lots of things but if you are depressed, fatigued or lethargic, exercise can move you in the right direction.
‘It just means making a start. Once you do, you see the changes.’
Re-visiting that quote has led me to a revelation . . .
I need to see exercise in a different light. I need to see it not as about trying to achieve the body beautiful (against the odds at my age, anyway) but about the value of exercise in itself. About it improving my mood, limiting the damage my diabetes[Diabetes mellitus] A disorder in which sugars in the diet cannot be metabolised into energy due to a lack of the enzyme insulin. Late-onset diabetes mellitus may be a long-term side effect of some anti-HIV drugs. can do and reducing my cholesterolAn essential component of cell membranes and nerve fibre insulation, cholesterol is important for the metabolism and transport of fatty acids and the production of hormones and Vitamin D. Cholesterol is manufactured by the liver, and is also present in certain foods. High blood cholesterol levels have been linked to heart disease and may be a side effect of some anti-HIV medications. and triglycerideA type of fat in the blood. Elevated triglyceride levels may be a side effect of some anti-HIV drugs. levels.
Also, if I focus on the way a good exercise workout makes me feel then maybe I’ll do it more often?
A friend of mine, living in a south-east Asian country, was recently diagnosed with several AIDS-defining illnesses.
‘First I came down with Kaposi’s Sarcoma lesions all over my body,’ he wrote.
‘A week later, I was admitted to hospital with PCP (the AIDS-related pneumoniaAn inflammation of the lung, usually caused by infection with bacteria or other microorganisms, in which the air sacs of the lung become filled with inflammatory cells which solidify and inhibit breathing.). When I was in hospital I was told I’d somehow contracted Hepatitis C as well. What next is the world going to bring on for me? No matter what it is, I’m going to deal with it.’
I admire my friend’s resilience in the face of adversity. Rather than buckle under the weight of misfortune, he is determined to recover and be back to full health as soon as possible.
It seems to me that those of us who have lived a long time with HIV have already shown a remarkable level of resilience. When you have lived with a major threat to your mortality and survived, you are, perhaps, better placed to deal with the smaller (albeit frustrating and often debilitating) co-morbidities that HIV throws at you.
Of course not everyone with HIV is going to be so resilient – nor is it a quality that is easily taught.
The Bobby Goldsmith Foundation in Sydney runs Phoenix workshops to help people with HIV deal with life-changes and learn to re-engage after periods of illness. Part of their course involves challenging negative thinking patterns that can easily develop when you are diagnosed with a stigmatising condition like HIV. Learning to see that you need not be limited by the virus and can still achieve your full potential is a part of the message that self development courses like this promote.
In a similar way, Positive Life NSW is setting up a peer support group for people newly diagnosed with a comorbidity related to HIV.
‘We acknowledge the extra strain[HIV strain] Any subgroup of the HIV species. Because HIV mutates very easily, there are many different strains (and may be multiple strains within a single person). that comes when someone with HIV is told they also have cancer or diabetes,’ says CEO Rob Lake.
He believes that there is great value in having people with HIV support each other through an experience that is, unfortunately, becoming more common these days.
- If you’re in NSW and interested in the upcoming HIV positive women’s group, please contact firstname.lastname@example.org or email@example.com; for details of the next Phoenix course in NSW, contact BGF on 1800 651 011; for details on support groups run by Positive Life NSW, call (02) 9361 6011; if you’re in Victoria and interested in doing a Quit course with PLWHA Vic, contact Vic Perri on (03) 9865 6772.
- HIV organisations around the country run a variety of programs aimed at helping you live better with HIV. Contact your local AIDS Council or PLHIVPerson (or people) Living with HIV. This term is now preferred over the older PLWHA. organisation to find out what’s happening.
- Thank you to Jennifer Stewart from the HIV Hepatitis and STIs[Sexually Transmissible (or Transmitted) Infection] Infections spread by the transfer of organisms from person to person during sexual contact. Also called venereal disease (VD) (an older public health term) or sexually transmitted diseases (STDs). Education Resource Centre at the Alfred Hospital, Melbourne for help with this article. Also thanks to Celia Erzegli, Rob Lake, Ian Walker and Vic Perri.
Here are some inspiring examples of how positive people have made major changes in their lives – or shown resilience in adapting to adverse circumstances.
Troy has been living with HIV for twenty-five years and experienced several AIDS-defining illnesses back in the mid-nineties. He believes his survival has given him the resources he has needed to tackle the various health battles that have emerged as he’s entered his fifties.
Even so, he was unprepared for a recent bout of severe depression that led to some of the worst lows he has ever felt in his life.
‘I would wake in the morning in tears. It had a lot to do with the pain from extremely bad arthritis but it was also about me realising that my health was starting to limit the things I wanted to do with my life,’ he says.
Troy was planning to go back to work but soon saw that this would be impossible as he was in so much pain.
‘My finances are very tight – as are all people on the DSP – and I wanted to break free of the insecurity of not knowing how you are going to pay your bills from week to week.’
Troy looked back on his life and saw how HIV had clipped off a promising career when he got sick in his thirties. Now, he didn’t have any of the financial resources that many people of his age have, like superannuation or a house.
He was having trouble sleeping, he was losing weight and some days he just didn’t want to get out of bed.
‘Some nights I got so low I hoped I didn’t wake up the next morning,’ he says.
Troy hadn’t really noticed how depressed he was getting until a couple of close friends rescued him.
Firstly, he got professional help from a psychiatrist who prescribed antidepressants, which, despite his initial misgivings, worked really well. Then he found a great counsellor who helped him to get a better perspective on what was happening in his life.
'He taught me not to have too high expectations of myself and to recognise the major contribution I have already made to the workforce and to other people’s lives,’ says Troy.
He also taught him that the way you see a problem is not necessarily the right way or the only way to see things.
Since then, Troy has worked on spending time doing the things he enjoys most in life. He spends time with friends and potters in the garden.
‘As long as I am getting out there and doing things, I am achieving something that gives me satisfaction every day.’
We know that giving up smoking greatly lessens the chances of us getting many of the co-morbidities that people with HIV are susceptible to as we age. This was one of the factors that finally convinced Steve to give up cigarettes.
‘I realised that I wasn’t getting any younger and had smoked since I was fifteen,’ he said.
‘When I started to get shortness of breath from doing something that I used to be able to do easily, I knew that if I didn’t stop the chances of me developing cardiovascular disease were reasonably high.’
Steve’s grandfather had died from cardiovascular disease and had to have his hand and foot amputated before his death. This was caused by smoking and its effect on his circulation.
‘I had tried to do it in the past using nicorette lozenges, Zyban (an antidepressant thought to help people stop smoking) and going cold turkey, but none of these things were successful.
‘I guess I tried about twelve times before I finally found a solution that has worked,’ he says.
Steve combined doing a Quit course with using the drug Champix to control nicotine withdrawal. Doctors who prescribe the drug often suggest you combine it with a course or counselling of some kind.
The course was an important part of why Steve gave up because it taught him how to deal with the ‘triggers’ that made him want to smoke again.
‘They were things like a sudden crisis or some significant event that in the past I had always associated with smoking,’ he says.
The other thing the group did was to provide him me with the peer pressure not to smoke.
‘I didn’t want to be the first one to relapse and we were all trying to be strong for each other. I think it was important that I kept in contact with group members after the eight-week course. It helped me to keep my resolve.’
Steve hasn’t smoked now for two years (well, pretty much). He did relapse a few times in the beginning but worked out that there was a limit to the number of days he could go before he would have to start Champix again.
There is a strong incentive not to go back on the drug. In any one year you can only get one script on the PBS[Pharmaceutical Benefits Scheme] The federal government program which subsidises medication costs in Australia. Anti-HIV drugs are part of a special part of the PBS called Section 100 (S100) which is used for expensive, highly specialised drugs., otherwise you pay $105 for a month’s supply.
‘The benefits that not smoking have brought into my life have really made it worthwhile. You look younger, your skin feels great, you have more energy and you sleep better. The best bit is that people like to kiss you a lot more!’
RE-ENGAGING BY GIVING BACK
Richard believes that life goes in seven-year cycles and so when he reached 49, two years ago, thought it was time he made some life changes.
‘I was bored with my life,’ he said.
‘I had control of everything medically and had always been positive about HIV but began to ask myself why I wasn’t positive about the rest of my life?’
Richard has experienced some major liverA large organ, located in the upper right abdomen, which assists in digestion by metabolising carbohydrates, fats and proteins, stores vitamins and minerals, produces amino acids, bile and cholesterol, and removes toxins from the blood. complications from having hepatitis B and with interactions between treatments for both conditions. He also lives with breathing difficulties from a rare condition where a varicose vein has developed in his oesophagus.
He had been trying to get back into the workforce for some time but was limited to the type of work he could do and the hours he could put in. He had so many medical appointments to attend that even finding a part-time job was difficult.
But Richard wouldn’t be deterred from finding work in some form. He did a computer course and then took up a volunteer job at the Positive Living Centre in Sydney where he now does three shifts a week, helping out with reception and other duties.
‘The great advantage here is that if I am feeling unwell, the management understands,’ he says.
‘I’m doing it because I want to give back to the community that has supported me during some difficult times in the past.
‘I don’t want to just be a recipient of services and want to help others where I can,’ he says.
Richard believes that anyone can make changes for the better. Just start with small steps, doing something that pleases you. It may be gardening or some other daily activity.
‘Soon you will feel a sense of satisfaction with every achievement you make towards your goals.’
If you’re in NSW and interested in the upcoming HIV positive women's group, please contact firstname.lastname@example.org or email@example.com; for details of the next Phoenix course in NSW, contact BGF on 1800 651 011; for details on support groups run by Positive Life NSW, call (02) 9361 6011; if you’re in Victoria and interested in doing a Quit course with PLWHA Vic, contact Vic Perri on (03) 9865 6772.
HIV organisations around the country run a variety of programs aimed at helping you live better with HIV. Contact your local AIDS Council or PLHIV organisation to find out what’s happening.
Thank you to Jennifer Stewart from the HIV Hepatitis and STIs Education Resource Centre at the Alfred Hospital, Melbourne for help with this article. Also thanks to Celia Erzegli, Rob Lake, Ian Walker and Vic Perri.