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Welcome to Club Insomnia
It’s 04:44am. I’m laying in bed. Wide awake.
I can hear the distant whoosh of cars on the main road, the hum of fridge freezer, that irritating high pitched noise that you’re not sure if it’s your ears or something buzzing or something else making it, and most disturbingly of all – my own thoughts.
I’ve been trying to get to sleep since midnight. I did all the right things – I had a relaxing bath, drank some water, took my pills, turned my phone off, turned my computer off, turned the lights off and got comfy. Sadly the sandman didn’t want to pay me a visit.
Laid there in total darkness I tried to clear my mind of all thoughts. But as soon as I’d done that they flooded back again. What am I going to do about money? What’s going on with that guy I like? Did I have plans for tomorrow? What do I need to do for work tomorrow? Oh god work tomorrow. Did I put my headphones on charge? Did I take my meds? Whilst all the time thinking “WILL YOU JUST SHUT UP – I NEED TO SLEEP”.
At 3am I realised sleep clearly wasn’t happening and at 4am I completely gave up all hope of achieving any sleep.
The medication I take to control my HIV, ATRIPLA, is made up of three drugs Emtricitabine, Tenofovir and Efavirenz. Apparently Efavirenz is widely know to cause insomnia – I’ve never been the best sleeper, but I can’t imagine that this is really helping matters. Some people have suggested that I move to another drug combination that doesn’t include Efavirenz but these aren’t available in single pill from the NHS and I don’t know how well I’d cope with multiple pill treatment – plus I don’t really want to burn my bridge with ATRIPLA if I don’t have to.
It’s now 5am. I have to get up for work at 7:30. Do I try and sleep for that 150 minutes, or do I just get up and go into work early? Whatever I do, however, I can confidently say that my Thursday will be a complete write-off. I’ll be heavily reliant on bad instant coffee to keep me awake at work, but it won’t be proper awake, it will be Zombie Tom – lights are on, but nobody is at home.
I really envy people who, like my pets, can just put their head down and go to sleep straight away. That’s never something that’s worked for me, I’ve always found it hard to get to sleep and it’s just getting harder as the years and pills continue.
Here’s a quote from D.D. Barant that seems appropriate:
“I’ve got a bad case of the 3:00 am guilts – you know, when you lie in bed awake and replay all those things you didn’t do right? Because, as we all know, nothing solves insomnia like a nice warm glass of regret, depression and self-loathing.”
I hope you have a better Thursday than I’m going to.
Best wishes,
Tom
UKPositiveLad
Latest Blood Results – March 2013
G’day Lads and Lasses,
Yesterday I went to my local HIV Clinic at the lovely Queen Elizabeth Hospital Birmingham. I popped in to get the results from my routine blood-work I had done last week.
My consultant gave me my latest figures: My CD4 is up from 534 to 627 (yay) and my Viral Load remains undetectable (double yay).
Now for those of you who aren’t au fait with the terminology here are some a couple of quick explanations from aidsmap.com:
- T-cells (or T-lymphocytes) are white blood cells that play important roles in the immune system. There are two main types of T-cells. One type has molecules called CD4 on its surface; these ‘helper’ cells organise the immune system’s response to bacteria, fungi and viruses. The other T-cells, which have a molecule called CD8, destroy cells that are infected and produce antiviral substances.HIV is able to attach itself to the CD4 molecule, allowing the virus to enter and infect these cells. Even while a person with HIV feels well and has no symptoms, billions of CD4 cells are infected by HIV and are destroyed each day, and billions more CD4 cells are produced to replace them. Doctors use a test that ‘counts’ the number of CD4 cells in a cubic millimetre of blood. A normal CD4 count in a healthy, HIV-negative adult can vary but is usually between 600 and 1200 CD4 cells/mm3 (though it may be lower in some people).
- Viral load is the term used to describe the amount of HIV in your blood. The more HIV there is in your blood (and therefore the higher your viral load), then the faster your CD4 cell count will fall, and the greater your risk of becoming ill because of HIV. Viral load tests measure the amount of HIV’s genetic material in a blood sample. The results of a viral load test are described as the number of copies of HIV RNA in a millilitre of blood. But your doctor will normally just talk about your viral load as a number. For example, a viral load of 10,000 would be considered low; 100,000 would be considered high.
- All viral load tests have a cut-off point below which they cannot reliably detect HIV. This is called the limit of detection. Tests used most commonly in the UK have a lower limit of detection of either 40 or 50 copies/ml, but there are some very sensitive tests that can measure below 20 copies/ml. If your viral load is below 50, it is usually said to be undetectable. The aim of HIV treatment is to reach an undetectable viral load.But just because the level of HIV is too low to be measured doesn’t mean that HIV has disappeared completely from your body. It might still be present in the blood, but in amounts too low to be measured. Viral load tests only measure levels of HIV in the blood, which may be different to the viral load in other parts of your body, for example in your genital fluids, gut or lymph nodes.
The dietician is slightly concerned about my weight however, I used to weigh between 62 and 64kg (that’s 9st 10lb – 10st in old money) and now I weigh 56Kg (8st 11lb). So they’ve put me on a new diet – where essentially they want me to be eating all day long. Lots of things rich in sugar, fat, dairy and protein. Not sure how I’m going to afford that mind!
To combat the rising number of cold-sores I’ve been getting too my consultant has put me on a daily dose of Valaciclovir to combat those at the root cause, hopefully we can get that under control too. All in all a pretty productive trip to the hospital, all done for four months now!
Until tomorrow lovely people,
Tom
UKPositiveLad
Your HIV questions answered by DrEd.
Currently 100,000 people are estimated to be living with HIV in the UK, but an estimated 25% of those are undiagnosed.
That’s 25,000 people who have HIV and don’t know about it! As we come to the end of HIV Testing Week in the UK and approach World AIDS Day 2012 I put some of your questions about getting tested and HIV to Dr Sebastian Winckler from DrEd.
1. Why is it so important to get tested for HIV?
Early testing is vital both for you, and for the people you’re sleeping with.
If you’ve got HIV and you’re getting treatment you can expect to live 40 years longer than someone who isn’t receiving treatment.
If you’re taking antiretroviral medication, you become less infectious to other people. Being aware of your status means you can start putting certain measure in place (such as safe sex)
to prevent transmission, as well as looking after your own health.
2. What stops some people from getting tested?
There are a lots of reasons why people avoid HIV tests, but usually it’s down to:
- The stigma surrounding HIV and AIDs: Despite advancements in treatment, in some communities there is still stigma about being HIV+, so many people feel embarrassed about getting tested. Remember, there is no shame in being HIV+.
- The inconvenience of testing: If you work during the day, it can be hard work finding the time to go.
- Fear: Some people are simply scared off getting a result they don’t want to hear. Remember though, it’s better to get tested and treated rather than making yourself, or others, ill.
3. Where can I get tested?
HIV tests are available free and confidentially from:
- Sexual health (GUM) clinics
- HIV testing centres (Terrence Higgins Trust Fastest centres, for example)
- LGBT Centres
- GP’s and family doctors
- HIV tests are available to buy from:
- Private clinics
- Online doctors services
4. I haven’t had any symptoms, so I probably don’t have HIV, right?
Wrong. Most people will experience a short, flu-like illness about 2- 6 weeks after being infected. This is your immune system putting up an initial fight against the virus and can last for up to a month. But, this can be easily mistaken for the flu and 20% of people don’t experience any symptoms at all.
After this has gone away, you are unlikely to notice any other symptoms for a long period of time. So the only way of knowing for sure is getting yourself tested.
5. Can a test pick up any HIV infection, regardless of when I’ve caught it?
No. A certain amount of genetic material needs to build up in your system before it can be accurately detected by a test. The time taken for this to happen is called the ‘window period’ and this is different for every test.
- The standard antibody (Ab) test will pick up HIV if you caught it more than 3 months ago.
- The combined antibody/ antigen test (4th Generation test) will pick up HIV if you caught it more than 6 weeks ago.
- The HIV PCR test will pick up HIV if you caught it more than 7-10 days ago.
In most cases, you will be given either the standard antibody or combined test. If you test negative for these, it doesn’t necessarily mean that you are HIV negative, because you might have been infected within the last 3 months (or 6 weeks). You are therefore advised to take a second test 3 months later for the all clear.
If you want a faster result you can pay for a PCR test. But these are only offered at some clinics and may cost up to £250.
6. I think I’ve caught HIV within the last few days, what do I do?
If you’re worried that you’ve contracted HIV very recently, as in, within the past 72 hours (3 days) then you should go to your local GUM clinic or A&E department and request emergency PEP treatment.
7. I’m afraid to get tested because I don’t like needles
HIV tests don’t have to be done via needle or syringe, some clinics use ‘Fastest’ Rapid Testing which simply takes a prick on the end of your finger. Other clinics may take oral swabs instead, this method is considered less effective than a blood test however, so some clinics won’t offer it.
8. How long do I have to wait for my results?
That depends on the clinic you go to. Most will contact you with your result (or ask you to come back in for it) within 3-5 days. If you take a rapid test your result will be ready within the hour. Some clinics can take up to 2 weeks however, don’t be afraid to ask when you should expect the results.
9. What happens if I test positive?
First off, a positive result doesn’t always mean you’re HIV+. There is a small margin of error, so all positive results must be followed up by a confirmation test.
If you do test positive for that, then the doctor or nurse who informs you of your result will set up a meeting with a specialist who can assess the stage of your infection and talk to you about relevant treatment options. You’ll be put in touch with local HIV support groups who can help you cope emotionally, and make you realise that a positive result is not the end.
Thirty years on and HIV is still a problem in the UK, but it is no longer a death sentence. There is help out there and the earlier you get tested, the better your prospects. Whatever you do, make sure you get tested this HIV Testing Week.
Some charities that can help:
My Latest Results
Happy Moist Wednesday to you all,
Yesterday I went to collect the results from my triannual (is that a word? three times a year anyway) HIV check up at the clinic. I’d been in the week before and had the full battery of tests – 8 vials of blood and a urine sample, along with a full standard STI (sexually transmitted infection) screening. It takes one week from the tests to get all the results, so in I popped after work.
It always surprises me how lovely the staff are, they always remember my name despite the hundreds, if not thousands, of people they see between my check-ups. My usual consultant wasn’t available, sunning himself in the tropics – alright for some, so I saw a different lady who had me laughing the entire time.
The long and short of it however is my Viral Load is holding at <39 (which means undetectable), and my CD4 was a respectable 532 (see chart below), my CD4 is a bit down from last time, but the doctor attributed that to my recent bout of flu. So that’s all good. The STI screening was clean as a whistle too – hardly surprising given my pretty quiet bedroom life of late.
I saw the dietician who told me that my cholesterol, kidney and liver functions were all fine – and quizzed me on how healthy my diet was. The physiotherapist moaned at me for not doing enough exercise, and the health advisor gave me a suitcase of condoms and lube.
On to the pharmacist we had a yearly medication review, we discussed my minor side-effects (occasional insomnia and crazy dreams) and decided that it was best to stick with the current medication regimen. I was offered a new home delivery service for my medication as it was suggested it would be more convenient for me, but then I’d have to wait in for the delivery (or else trek to the Post Office) and I have to come in every four months for my check-up anyway, so might as well collect them then.
I picked up my four month supply of ATRIPLA and headed home. At £626 per month (cost to the NHS) that meant I was carrying £2,504 of medication around. I felt like it should probably be handcuffed to me like in the movies! Thank goodness that it doesn’t cost me a penny on the NHS, not even a prescription charge. A lot of people complain about the NHS, and sure it does make mistakes but then what organisation doesn’t. We’re very lucky to have such an institution in our country – make the most of it whilst you can before the Tories dismantle it.
I hope you’re all well!
Sam
UKPositiveLad
Life+ the must have HIV app
Life+ the must have HIV app
It seems like there’s an mobile app for everything these days, apps to monitor your sleep pattern, make you look old, give you a squeaky voice – but how about an app that’s actually useful?
The Terrence Higgins Trust (THT) have brought out a new iOS (iPhone, iPod, iPad) app aimed squarely at those of us in the UK living with HIV. Now, there are already apps out there that remind you to take your medication, chart your blood results, or give you health advice – but for a price, and certainly not in the same place.
Say hello to Life+ from THT…
Life+ taps into the well established and incredibly useful MyHIV.org.uk website (managed by THT and funded by EJAF). This allows you to:
- Create medication reminders
- Look up HIV medication information
- Record and chart your blood results
- Jot down notes to discuss with your healthcare team
- Access a wealth of HIV and sexual health information from THT’s vast knowledge banks
- Log onto the MyHIV.org.uk community forums
- Contact THT Direct for phone support
How much does this cost I hear you ask? Not a single penny. All you need is a free account at MyHIV.org.uk – so what’re you waiting for? Head to MyHIV.org.uk and create your account (if you’ve not got one already!) and then head to the Apple App Store and download Life+
(note from THT: there’s a little glitch in the app at the moment that means you need to give it a few seconds to load, this should be ironed out in the next update)
Happy Mondays!
Sam
UKPositiveLad
Lastest blood results – cause for celebration
Hey Hey,
Just a short blog-post as I did a big rambling one yesterday. I went to the clinic today, which I wasn’t really looking forward to. They took 8 vials of blood from me (as per usual), made me pee in a pot (not easy), weighed me (61.3kg) and checked my blood pressure (122/71) and then gave me four vaccinations:
- Hep B (booster)
- Pneumonia
- Meningitis
- Tetanus/Polio/Diphtheria
After that was out of the way I sat down with my consultant and she took me through my results from last time. I’ve made some real progress (as you can see in the chart below), my Viral Load is now 39 (technically “undetectable”), and my CD4 has risen to 561 (the highest it’s ever been).
In just one year my Viral Load has dropped from 79,000 to 39, and my CD4 has risen from a low of 332 to a high of 561. Proof if proof were needed that Highly Active Antiretroviral Therapy (HAART) really does work.
After that was done I headed to the pharmacist and picked up a four month supply of ATRIPLA and made my way home.
Just that little bit of good news has really perked me up. I’m seeing my best mate on Thursday too for drinks, something to look forward to there as well.
Hope you all have a good evening,
Sam
UKPositiveLad
Fighting fit and feeling fine!
Yesterday morning I awoke to a tingling on my upper lip. I sat bolt upright up in horror, and looked in my mirror. Sure enough, there it was, another coldsore – and you’ll remember that only a week or so ago I had a huge one on my bottom lip. Gutted. I tried to call my local GP (who you’ll remember I don’t have a huge fondness for), to see if they could dish out some Aciclovir to nip it in the bud, but despite calling all morning no-one answered the phone, I can only assume that they were closed, or busy laughing at patients.
Then I tried calling my HIV clinic, which isn’t exactly local, and they said that they could see me if I got there within 30 minutes. Some hair-raising driving on the boyfriend’s part and we made it – just. The doctor saw me fairly quickly and gave me another week of Aciclovir (three times a day), apparently whilst unpleasant the coldsores are a good thing, a sign that my immune system is asserting itself again. He also treated me to a Hep B booster in my left arm, I know, lucky me!
After that he took time to go through my latest blood results with me. My CD4 has risen from 332 to 381 and my Viral Load has dropped dramatically from 354 to 46 – almost ‘undetectable’! Also of note was that my Vitamin D levels are rising steadily as I take my daily supplements. I was so pleased, it gives me a real feeling that I’ve got control of the situation, I won’t be beat by HIV.
For those of you worried about starting treatment, or those of you considering starting treatment early (like I did) – DO IT. It’s the best decision I’ve made for myself in a long time. I’ve gone from a Viral Load of 79000 to a Viral Load of 46 in three months. I feel amazing. Here’s to the rest of my life…
Becoming comfortable with my meds…
Just a short blog post today, more a diary entry if you will.
I had a bit of a realisation last night that I’m finally becoming comfortable with my ATRIPLA (HIV medication). A bunch of my friends had all congregated at my friend Paul’s house last night for movies, wine and a catch up. We’d not seen each other since before Christmas, so there was much to talk about. Some of the people in the group know my HIV status, some don’t – one of the guys in the group is HIV+ himself and has been a great support to me.
So we’re part way through watching a horror film when suddenly my phone starts buzzing, it’s my nightly reminder to take my ATRIPLA. Normally I would have made an excuse and escaped into the hallway or kitchen to take my pill, but last night I thought “No! Fuck it! Who cares? These are my friends. If they ask about it I’ll tell them, I’ve got nothing to be ashamed of!“. So I just got the pill out of my pocket and necked it with my beer, right there on the sofa. The thing is, no-one even noticed that I took anything – what have I been making such a fuss over?
“No! Fuck it! Who cares? These are my friends. If they ask about it I’ll tell them, I’ve got nothing to be ashamed of!”
The whole thing has made me realise how much more comfortable I am about taking my medication, much more so than when I started – just two months ago. Back then even when I was on my own I’d stare at the pill and think about it before I swallowed it, sometimes for minutes at a time. Now I take it without thinking about it, and am even happy to do it front of my friends.
I think this is what they call progress!