HIV and health stuff to the fore

Mon 15 – Sun 21 May 2017

A funny old week with my partner Dave off to China for work. He is only gone a week but it’s strange not to have him around so that we can take the piss out of each other and have a laugh. Otherwise key things last week were HIV & health, tech for good, Birmingham, books, and politics. Feel free to compare whether what I was looking forward to in my previous blog matched up with what actually happened.

Health and Efficiency

HIV – changing my meds

Big thing last week was my six monthly check-in with my HIV consultant. My viral load remains undetectable and I have a decently strong enough immune system. Her big concern is around my cholesterol which is really high. I already take two meds to tackle it but their impact seems to be wearing off. Thus she made a call to change my HIV meds to one that should not push up my cholesterol as a side-effect.

My cocktail of anti-retroviral (ARV) meds has worked brilliantly in containing the virus. It’s sad and a wee bit unnerving to say goodbye to meds that have worked and try something new. It will be OK and side effects akin to the nightmare I had in taking the infamous Efaverinz/Sustiva are almost 100% unlikely to happen. The bigger impact will be on my blood clotting level for which I take warfarin and I am going to have to go to that clinic weekly to monitor the INR level.

Need to lose weight – it’s official

I also had clinical advice that I need to lose weight. Very high cholesterol may lead to heart disease and inevitably that risk is increased being over-weight. My BMI indicates I have a lot of fat around my heart and liver. I know I am over-weight but being told I am by a clinician has more impact such that I am thinking about what I can do to lose it. There are others in my family with very high cholesterol so it may be genetic as is our problem with blood clotting. However there is no history of heart disease (relatives dying from heart attacks and strokes) so that is a positive.

Living with a chronic condition

It is amusing that we all used to be so worried about HIV/AIDS. Indeed, we still should be which is why people should get tested and treated. A person with an undetectable viral load (i.e. someone on treatment) cannot infect someone else. We can stop the epidemic dead in its track if everyone tests and treats. The bigger problems with HIV now are those related to living with a chronic condition particularly linked to heart disease, cancer, and mental health problems. Some of which is linked to the virus and some to the life style of people most likely to be infected.

I love the NHS (most of the time)

Being ill and dealing with long-term health problems shows the NHS at its best and its worst. I am so grateful that we have this service. In the USA it would have to be paid for and I might not be able to afford it. In developing countries you take what you are given even with side effects. But the NHS is disjointed with various clinics doing various monitoring and releasing different meds. You have to work hard on keeping it all connected and you can see how a vulnerable person could just give up or get confused. I managed to forget to get my bloods done in advance of seeing my HIV consultant and had to have them done on the day.

INR

Went to this clinic on Fri morning to follow up on my low INR and increased warfarin dosage from the week before. I also had to tell them about the ARVs changing and the need for a weekly INR review for about a month. Reading was slightly down despite increased warfarin so that dosage goes up again.

Gym and jog-run

It was a strange bitty week and that impacted on me going to the gym. Unfortunately I think that is true until the election finishes. I managed only one gym session and that was on Sun morning. All went well though it was a focus on different body parts using the weights without aerobic exercise. This was in part due to my OK jog-run the day before.

I do need to admit that my plan for a mid-week jog-run as well as the weekend one has come to nothing.

Tech for Good

  • Tues I was at NESTA all day for a conference about Digital Social Innovation. This really means the same thing as Tech for Good or Social Tech. It’s about using digital technology to deliver positive social changes. NESTA have been funded to review DSI across Europe and their event included many people from different European nations. A good overview and interesting to find out what is happening in other European nations with much being led by the local municipal governments. The very interesting and useful DSI website can be found here.
  • Wed morning I was in the office and had a series of back to back conversations with tech agencies:
    • Common Everybody – a platform to connect children and schools in the UK and Africa
    • The Developer Society – a co-op of not-for-profit technologists working solely with the nfp sector
    • Localgiving – a platform that supports local charities especially around fundraising. This is linked to our preparation for running a crowdfunding pilot programme with some of our projects.
  • Thurs it was up to Birmingham to co-present with Dan Sutch from CAST (Centre for the Acceleration of Social Tech) to a group to BBC staff. There were about 40 of them drawn from the BBC Online with an interest in finding out more about Tech for Good. An enthusiastic and engaging group. It was also nice to stay on and hear the talk about making a VR (virtual reality) film around mental health. Particularly interesting as it is also being produced to be seen by people not using VR.

My own White Elephant stall

The sub-title was inspired by trip on Sat to the May Fair at St Peter’s Eaton Square where they had a White Elephant stall. The event was OK perhaps a little bit expensive but quintessentially English Summer. And all money raised goes to installing a ramp for disabled people to access the church. So here is my potpourri of bits from last week.

Birmingham

After the tech for good talk at the BBC, I stayed over to have some solo chill time whilst Dave was away. I love Birmingham simply because of it being so urban. It’s a real city with industry and earthiness. The people can be quite sexy too 😉 Though I did spend a lot of time there dealing with emergency emails from work and finalising our shortlist for the Tech4Good for Africa Award. But I also had a nice meal in China Town at Cafe Soya (eating too much as usual) and drinks in the hotel bar before crashing out early around 10.30. Back to London first thing on Fri.

Daisy and Peter

Met up with my old friend David on Tues night, affectionately known as Daisy. He is fine. Our main conversation was about our joint friend Peter who is in his 80s. He has dementia and now lives at a home in Southall. It’s a very nice home and relatively he’s quite lucky. Dave had visited Peter and I plan to go after this bloody election is over. We chatted over a nice local curry. I am fortunate to have some nice long-term friends.

Politics

This bloody unnecessary general election combined with personal health and work stuff means I haven’t got the time I want to get to the gym – grrr. I connected up with our wonderful council ward by-election candidate (Irina) on Fri and delivered letters for her. Then on Sat I helped write envelopes for personal letters to go out to voters in Vauxhall. Let’s hope we can get rid of the awful Kate Hoey.

Personal Development

I did manage to do Duolingo language learning everyday last week though no real coding practice. As that wonderful old saying goes: what you gain on the swings you lose on the roundabouts. Sun was a great personal development day. I went to the gym then decided to just have some complete me time. The weather improves so I walked across London whilst reading my latest book and popping to the Notting Hill Exchanges before going on to see mum. I felt very peaceful. Walking and reading is one of my very favourite things. Not always easy as there is a danger of falling arse over head.

Books and Reading

‘The Tobacconist’ by Robert Seethaler (2016)

I picked this up in one of my favourite charity shops for 50p. This was fortuitous as it is a recent release and one I fancied reading. It’s pretty grim, the story of a country boy who migrates to Vienna just before the Anschluss and the Nazis taking over. The story is a bit clunky with Professor Sigmund Freud as a visitor to the tobacconist shop where our hero works. They become friends particularly as the hero falls in love with a woman who is fundamentally a prostitute. Her lack of principles is rewarded with survival where others die. Overall, a nice hymn to the need to fight to protect civil rights and liberties. Fascism creeps up.

‘Do No Harm’ by Henry Marsh (2014)

One read on my kindle which I have grown to love more and more. A very popular book by a brain surgeon nearing retirement so reflecting on his life and work. It’s fascinating how he details the different operations undertaken, some very successful and some complete disasters. He has had people’s lives in his hands. However there is an element of the arrogance that surrounds nearly all surgeons, I suppose with that power it is inevitable. And the man himself sounds like a complete shit to work with at times. The book often falls into the false claim that everything in the NHS would be fine if it was just left to the clinicians (who never do anything so awful as prioritising their lucrative private work over their NHS duties…)

Dr Who audio adventures

‘Real Time’ (sixth Doctor Colin Baker + companion Evelyn Smythe)

An OK time-loop adventure in which the Doctor discovers a time anomaly. The Cybermen feature and basically a human agent has come from a distorted past to try and change things. Slightly too clever for its own good, the ending explains how things have happened. But doesn’t this mean the Doctor and Evelyn are caught in a time-loop forever that they can’t escape from?

‘Shada’ (eight Doctor Paul McGann + companions Romana and K9)

A remake of the famous Tom Baker story that was never shown due to industrial action. It’s since been rescued on audio and image. I think this story must have been made when no-one thought that was going to happen. As it features basically the same storyline but with the wonderful Paul McGann reunited with Romana and K9. All good fun and worth a listen with the appearance of an old Time Lord and scenes revolving around Oxford in 1979.

‘Her Final Flight’ (sixth Doctor + companion Peri)

A funny little adventure in which the whole thing is imagined by the Doctor. The Master(?) hires a bounty hunter to kill the Doctor. She puts an implant in his head which places him on a primitive planet with former companion Peri. The Tardis is dying and killing the natives as well as the Doctor and Peri with radiation. Of course, he discovers what is happening and turns things on their head.

Looking Ahead

Another busy week awaits, when does it not?

  • Dave comes back! We are off to the theatre on Fri night to see a new musical ‘Whisper House’
  • Realistically I am looking at the gym just once next week and same for my jog-run but starting a new weekly 45 min yoga session at work
  • Doing work to help the Lib Dem election effort
  • Visit to Toynbee Hall to look at the new Digital Money Mentors e-learning platform we’ve been funding
  • Reviewing the first draft of the M-ITI research on Social Tech Eco-systems in Sub-Saharan Africa
  • A planning meeting about running a workshop for not-for-profit projects on how to use and do video better
  • Continuing to keep on top of emails
  • GP visit to get meds renewal and another INR clinic visit
  • Duolingo/language learning every day and some coding learning
  • Another couple of books read
  • Listening to at least a couple of Dr Who audio adventures
  • I might (say it quietly to avoid disappointment) go to the pictures
  • And I might even get to the WordPress London meet-up on Thurs night

People with HIV don't think what we have is guaranteed

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