Memory's story

I have been living with HIV for almost 10 years and have been on sustiva from the start. What a journey; what an experience!

On diagnosis my viral load was over 65k, and CD4 count was below 10 and had to start on medication immediately.

My main worry was DEATH! I pictured myself as a person in the media adverts for African people dying of AIDS, just bones and skin. During this time, worry and I became good friends, worry brought along stress, anxiety, fear and depression to keep me company. I never thought I would be still around today, telling this story.

On starting ART one of my drugs was sustiva; along with 17 other tablets for other ailments. I read the enclosed drug leaflets and could not believe I was on treatment for HIV/AIDS. Two weeks into treatment, I started having terrible side-effects and other opportunistic infections kicked in.

I was also diagnosed with polycystic kidney disease (CKD). I am now is stage 4 and will soon need a kidney transplant or start haemodialysis. Other than that I still feel good and am leading a normal fulfilling life.

Initially I was sleeping just about 2 hours a night with very vivid dreams; mainly of fear. The dreams were and are still so vivid – I have done unprintable things in those dreams! Before I got my leave to remain in the UK, I would dream I was back in my home country and then worrying about how I would get back to the UK to continue with my treatment. These are just some of the recurring dreams I still have, even after being granted refugee status – as refugee you aren’t allowed to go back to your home country.

It is always such a relief to wake up in the morning and see familiar curtains and surroundings. The dreams do not bother me so much as all I can do is have a good laugh. I sometimes walk into the office and share some REALLY weird dreams.

Sleep is varied – I am a light sleeper; sometimes I still sleep for a few hours and am up usually around 4.30am. I joined the gym over a year ago and so I leave home around 5.30am, go to the gym and then go to work. Is my sleep due to my HIV drugs? I have tried to look into this and do not think so. I think this comes with age.

Consider these strategies for managing insomnia: 

• Discuss with your doctor whether altering the time you take sustiva (eg. from bedtime to early afternoon or morning) might help. 
• Avoid caffeine, chocolate in the afternoon and evening. 
• Try relaxation techniques like yoga, breathing exercises, a warm bath. 
• Discuss with your doctor whether sleeping medication is an option. 
• Mood management before bedtime may help with dreams. Try doing, reading, or watching something bland or pleasant prior to bedtime. 
• Practice good sleep routines – go to bed at the same time each night and use the bed for sleep and sex (if you are lucky!) only.

I have now found myself worrying about getting old – wasn't I the same person who was afraid of dying young a few years ago? I have noticed that I just cannot remember certain things or people from my past. Everything I need to do has to be written down or else it doesn’t get done. I went to a hometown friend's wedding in summer and could not remember most of the faces who were more than pleased to see me. These are people I went to school with and grew up in the same town. I am not 50 yet, how will my memory be in 5 years?

Not everyone experiences some or all of the side effects. Starting or changing HIV medication can be stressful itself. Keep in mind that some symptoms could be caused by stress rather than sustiva.

Sustiva side effects are either short-lived or, together with your doctors’ assistance, manageable. Remember that help is available and don’t hesitate to ask for it.