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I am not infectious #CantPassItOn

It’s a very simple, but powerful message. 

  • I am HIV positive
  • I am on effective treatment
  • I am not infectious

I am proud to support Terrence Higgins Trust’s campaign that launches today! 

Read more about the campaign and the science that supports it here.

Huffington Post: http://m.huffpost.com/uk/entry/uk_5953a1bde4b0da2c731ffebf

The Metro: http://metro.co.uk/2017/06/29/mother-with-hiv-says-modern-treatment-is-so-good-you-cant-pass-it-on-6740355/

Filed under: HIV
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The Truth About HIV BBC One

I was one of the contributors to the BBC One The Truth About HIV documentary which aired last night and is now available to watch on iPlayer – click here to watch me in action! 

The programme shows some of the work I do in schools, educating young people on amongst other things – HIV and sexual health. I also shared my personal story, the reason behind Think2Speak’s formation, with Doctor Chris Van Tulleken, the programme’s presenter.

If you’d like to know more about the workshops we offer or to chat with me about a session, a talk or a workshop in a school, college or university – please do get in touch by emailing hello@think2speak.com or call the office on 01522 253 155.

 

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The Truth About HIV – BBC One 9pm tonight

Tonight’s the night! 9pm tonight (Thurs 25th May) you can spot me as I take part in the BBC One documentary ‘The Truth About HIV’. They featured me delivering one of Think2Speak’s HIV and Sexual Health awareness workshops in a Lincolnshire secondary school. I’m then interviewed by the wonderful Doctor Chris Van Tulleken – whose tweet below on the day of filming totally made my day!

For more info to book me to speak in a school do get in touch and also please check out Think2Speak’s training page here.

There’s a great piece on Huffpost by Natasha Hinde’s which simplifies 9 key messages from the programme – click here to read her piece.

 

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11 years I became Mummy & Daddy

11 years ago today I said goodbye to B, my child’s father, and I unexpectedly, suddenly became both Mummy and Daddy to J.

J was just 13 months old then, and that meant that those early days were cruel and surreal; J was babbling and would point at people who resembled Daddy questioning ‘Dadda?’, there would be a knock at the front door and J would point ‘Dadda home!’.

As J grew older, he’d come home from school telling me how another teacher had physically grimaced when he’d said, so matter of factly as children do, ’my Daddy is dead’. I have always instilled frank and honest conversation between J and I; we do use the word ‘dead’ not the confusing ’gone away’. We sit. We talk. We listen. We love.

J is now 12 and understands that B died of an AIDS related infection. J is also now aware that I am living with HIV. J has age appropriate knowledge, and an awareness of HIV and sexual health in general far surpassing many adults I meet in the training and workshops I deliver!

About four years ago, hearing J explain, yet again, that people ‘don’t know what to say, that’s normal Mummy’ sparked something in me. Knowing that that reaction just wasn’t good enough, nor acceptable and that the adults involved in, and working within J’s life, those who encountered J, should be able to have conversations, not avoid conversations and at the minimum be able to confidently signpost to support; do anything but never ignore them or make that person feel that they can’t talk openly about what is in fact their day to day life. 1 in 20 children in the UK have experienced the death of a parent.

I knew I had to do something.

These interactions J encountered spurred me on to found Think2Speak. To create a hub of support, training and advice to help people who work with young people tackle those conversations that many grown ups would rather avoid, to help young people be able to talk about what’s bothering them, whatever that may be, and to help people have a space where they can talk about their family, their network and their experiences.

What J and I do both believe, and is the founding principal of Think2Speak – is that talking about ‘these things’ whatever ‘these things’ may be – NEVER makes it worse! Grown ups can learn so much from the child like qualities of ‘chatter’, of simply having a conversation, losing the motive that often drives adult conversation, never assuming to know what’s bothering a young person..

Think2Speak has enabled so many conversations. I am so proud of each of the schools that have embraced our proactive, preventative approach to wellbeing by becoming Think2Speak Members, safe in the knowledge that our counselling and therapy services are there for them when needed.

I burst with pride that in our first twelve months the team and I have:

  • Worked with over 2000 young people
  • Trained over 400 teachers, staff and carers/parents
  • Delivered over 350 counselling sessions
  • Helped people talk about grief, domestic abuse, HIV, puberty, PSHE, emotional wellbeing, mental health, sexual health, self harm, depression, anxiety, stress, change and loss and the list goes on.

As both Mummy and Daddy to J, I am so proud that Think2Speak is able to support other young, people just like J, and families just like ours, and not just within schools.

With your help, we can help so many many more! Click here to visit www.think2speak.com, share what we do and make a donation to help us support even more young people who need someone to talk to!

Thank you!

Lizzie @fashionthing

‘You’re a star’ BK 7th June 1972 – 29th March 2006

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7 things I learnt when someone dies.. 

Cheery title I know, and perhaps I wouldn’t read on if you’re wanting a joyful, fun blog post.

I’m feeling melancholy after I watched ‘Holding The Man’ last night, a wonderful story of true true love. A story punctuated by HIV, resulting in death. It rushed me back to hospital wards, the rooms to one side where you’re put when they know the inevitable is not far away. It also made me reflect and realise some things..
Grief. Loss. Bereavement. Someone dying. Dead. Passed away. Passed on – whatever the f that means. All such strange words that get thrown around when its on the horizon or when it happens. When you’re told to go have a sugary tea. Like that’ll make everything ok. Seriously?

When I was a child my paternal grandfather died after being ravaged by the f-cking ‘C’. My memories are of his decline and then pointing out a person shaped cloud from the back of the car as we left his funeral. I thought it was a cloud ‘Grandad’ lying on a cloud being taken off to heaven.

My paternal family have in particular been significantly devastated by the big C. Two uncles in swift, yet such cruel ways; C reducing towers of men to carcasses, there’s no other way of putting it. Barbaric, cruel deaths.

By contrast, B looked like a prime athlete having a sleep. In the couple of hours leading to when B died, I remember the ‘room’ we were moved to was huge. He looked almost insignificant laid in the bed in the middle of the room. A nurses station at the back behind glass. The sounds of the god damn machines, their shrill noises sounding, deafening alarms of what we all knew was happening. That noise of heart monitors, in a hospital, on TV, wherever, takes me right back there, even if just for a split second every single time.

His death was so very sudden, yet ultimately, bar the machines, I remember it being peaceful. I think I’ve chosen to selectively remember it this way, instead of dwelling on the reality of the ‘death rattle’ chest sounds, and his heart beating so hard swelling up between his ribs until it couldn’t beat anymore.

There are some things though that I wish ‘someone’ had told me..

1. It’s a trauma

Get counselling if you can. However it happens, you will need to talk it through at some point. Death. Grief. Loss. They’re all traumas. Don’t bottle the words up. If you can’t say them, write them down. And that’s no 2.
2. Write it down

Your head will be a mess. Write everything down – stuff the nurses said, things the funeral director asked/tells you to do, what BT need to change account names and who you spoke to. Write down stuff you want to remember about them – you’ll think you’re forgetting them when you can’t remember. Favourite places, jokes, aftershave, pudding, chocolate bar – (Dairy Milk Fruit and Nut was B’s)
3. Crying

You’ll cry tears like you’ve never cried before. And then they’ll stop and you’ll be numb. And then random things will turn that tap back on. And that’s OK! Happy tears will come eventually too.
4. Relief/guilt

It is the strangest sense of emotion when you’ve been told someone doesn’t have long left, and you’re held in a suspended state watching their every move. Every indicator trying to decipher the timeline. With B, and both my maternal grandparents, we had the opportunity to sit alongside them in a hospital room for those final hours, kiss them, talk to them, tell them we loved them. With all three, at some point I just wanted them to stop fighting, to let them give in and be still. This thought, each time of course, eats you with guilt, wanting to end their suffering, and selfishly appease your own. Yet conversely, not wanting them to go anywhere, willing them to get well and defy the medics.
5. The last words

I think this one can eat you up if you’re not careful. Your last words to them, the last thing you remember them saying. You might not think it at the time, but it doesn’t matter.

B’s last spoken word was ‘Chocolate?’ to the ICU nurse – who couldn’t give him any as they hoped to operate before events changed. More significant in my memory is he waved J goodbye. The last gesture or controlled movement he made before he died 24 hours later.

When my maternal grandfather had a catastrophic stroke, I couldn’t remember the last conversation we’d had. We’d been at their house just days previously and he’d have waved us off as he always did. Looking back the words weren’t important, it’s the feeling and thoughts when I think of such an amazing man that glow.

With my maternal grandmother, we had about a week of ‘she’ll not make the night’ in hospital. Defiant to the end, she was totally going on her terms not theirs. I really struggled watching her last hours. Too many of the noises, sights and sounds and I could not face it yet again. I said my goodbyes and left while she was still fighting. She died about half hour later as I’d just arrived home back to J.

6. Get rid of stuff when you’re ready

There’s no right or wrong to it. It’s harder when it’s not only your decision though. With B, I was able to do it at my own pace. Everything of his moved house with us 8+ years ago and gradually bit by bit, I’ve gone through the boxes of ‘stuff’ and it’s reduced down significantly.

It was very different when it was my grandparents and there was a skip on the drive, and a deadline of when the house had to be empty by. It became a very practical, clinical process. Some of my most prized possessions on my shelves & walls are simply that because of their connection to my beloved grandparents.

7. Some friends will surprise you.

Some friends won’t know what to say/do. Some will try anyway, some won’t. Two friends made, to them probably insignificant gestures, after B’s death, that I remember with such fondness whenever I think of those friends even now ten+ years later. If someone is hurting, send the card, send the flowers, pick up the phone. Drop off a casserole for them. Don’t cross the road to avoid them. Don’t say nothing. Please.

Filed under: HIV
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2016 Roundup

Well 2016 has been quite a year – and, as per last year, I’ve taken the opportunity to reflect and record some of the advocacy work that I’ve done in the last twelve months. Trying to choose a sole image to represent each month has been so very difficult, yet joyful. 2016 – I’ll never forget you.

January
Global Advocate To Watch List
16 Advocates to Watch list published. Read more.
Applied for AIDs 2016 scholarship

February
Interviewed by The Guardian
Read the article here.

March
Interviewed by Radio Lincolnshire
Chatting life, HIV and Think2Speak with Melvyn Prior
Beyond Positive Pub crawl
Drinking and laughing the night away by topping up the heterosexual quota on the Pub Crawl!

April
Awarded AIDS2016 Scholarship
Awarded and accepted full scholarship to AIDS 2016 in South Africa.
International ‘Inspirational Speaker’ 
Flew to Zurich for pharmaceutical company Actelion’s global annual team meeting as their invited ‘Inspirational Speaker’ to share my experiences as an ‘Expert Patient’ to help shape their 2016 plans for PAH patient engagement- read more.

May
£3500 for Macmillan
For the second year, as a family, we organised The Gainsborough Ball raising over £3500 for Macmillan. Ok so not HIV related but a worthy event to mention! Macmillan’s support has, and is currently, helping friends & family get through some very dark days.

June
Crawling & Climbing
A group of us decided to add climbing to crawling pre the second Beyond Positive Pub crawl of the year. It’s fair to say – it wasn’t my forte but watching the boys truly embrace the walls, and crash mats, was a great day!

July
Filmed by the BBC
Watch this space – due out in April 2017…

Trip of a Lifetime – South Africa
Memories & experiences which will last a lifetime. Amazing experiences, brilliant company, and crikey did I meet some amazing people doing truly inspirational work in the fields of HIV/AIDS from every corner of the globe at AIDS2016 South Africa. Read more.

August
Filmed for BBC3
Things Not To Say to Someone Who’s HIV Positive – watch the clip here

September
Accepted Role as 1 of 2 Patient Voices 
NHS England Clinical Reference Group (HIV) Patient and Public Voice – Read more.

October
#T2SLive Conference
When Think2Speak launched in 2015, I decided a conference was a great way to get ‘us’ on the map for 2016. Well we hosted #T2SLive gathering over 200 staff working with young people from all over Lincolnshire and our neighbouring counties to discuss emotional wellbeing. Read more.

November
House of Lords
I was honoured to be Terrence Higgins Trust’s invited speaker, alongside their CEO Ian Green, Lord Fowler and the Health & Innovation Secretary, Nicola Blackwood MP, at the charity’s Annual Parliamentary Reception at The House of Lords. Read more.

December
World AIDS Day
A whirlwind of interviews and articles from Radio4 Today, Standard Issue to London Live amongst others. You can hear part of the Radio4 interview here.

To put it politely, I’ve completed the year exhausted and pensive. Advocacy is only one of the many facets that make up my life, and doing this round up has been a great way to reflect and remember. To lay out some of the amazing opportunities, the things I’ve been able to experience and achieve, and the wonderful people I’ve met, had alongside me and got to know along the way. To each and every one of you, that has supported me, been there for me and believed in me – thank you.