BK’s YouTube Picks: Unrest

An article about this documentary about ME/CFS popped up on my twitter feed. I couldn’t be happier that this illness is beginning to get taken moe seriously and attention being drawn to it.

I was diagnosed with CFS in 2004.

I became ill with CFS some time between 2001-03.

It’s hard to pinpoint because in 2001, I wasn’t exactly looking after myself. The summer before I went to university I lost all my energy, had a really sore throat. I remember being on holiday visiting friends in the Netherlands and just wanting to sleep all the time. I went to university, got the ‘fresher’s flu’ and it just wouldn’t go away. After a month (and me collapsing twice one night trying to walk from my room to the toilets at the other end of the corridor) my friends dragged me to the doctor. Blood was taken. They discovered my glands were very swollen. They thought I had glandular fever – perhaps that I’d had it for several months.

By the next Spring, I seemed to be better…and was finally looking healthier than I had done in a long time.

Happy days.

Cue Spring 2003.

I’d had a cold, and again it just seemed to keep coming back. I was in the lead up to my final exams of second year and I was just tired all the time. Sometimes I woke up and couldn’t move my limbs. My joints hurt. I got blood tests for arthritis. My Mum panicked that I was developing Multiple Sclerosis. I would fall asleep in the library in the middle of the afternoon and have to be woken up by friends. I would be too tired and sometimes have to be walked home. I would be in tears with the pain in my joints and the exhaustion that no amount of sleep seemed to quench.

I got more blood tests. They tested me for pregnancy. (They never believe you if you say there’s no way you could be pregnant if you are a female university student).

All they could find was that I had ‘some sort of virus in my system’.

And they sent me on my merry way.

That summer was hell.

Some days I could have a normal day.

Other days I couldn’t get out of bed.

I remember my friend coming round and having to dry my hair for me – I couldn’t lift up my hairdryer. I remember crawling to the kitchen to put food in the oven and lying on the floor until it was ready. I couldn’t stand long enough to cook on a hob. I remember going to church and the 15 minute walk there exhausting me so much that I just lay on the floor at the back of the church. I couldn’t sit or stand.

I was really lucky.

I had friends that sat with me and didn’t expect me to be my usual chatty self. My friend kept me on his worship band team, and would let me sit if I needed to. He would even drive to get me so I wouldn’t use up this limited resource of energy walking. I had friends that took the time to tutor me when I hadn’t been able to absorb information in a lecture theatre. Friends that caught me when I passed out. Friends that drove me to the out of hours GP when I passed out in my car – again…I had a ‘virus’ (though once again, they thought I was pregnant and lying about it!). They kept me calm when I felt like I couldn’t breathe and was dizzy, or panicked because I couldn’t move my arms and legs. They send me notes. They gave me music to listen to.

I also had to put up with the people who thought I was faking it. Who labelled me as unreliable – like I chose what days I felt good or couldn’t move. One time I even got told off by a pastor for sitting down to sing. I didn’t often have energy in those moments to respond.

Eventually I got better. I don’t think CFS ever goes away fully. But I got better. I also got better at managing it. When I moved back to Edinburgh, it was difficult to explain to a whole bunch of people I didn’t know but as time went on they discovered it and supported me through it. My friends here are super lovely about warning me if they are ill so I can decide whether to ‘risk’ meeting with them as they know if I get ill…it can take me weeks to get better.

I’m lucky I never had to get a wheelchair. I was only confined to a bed for days at the time and I got respite from it. And I was able to keep working a few hours a week, and never had to take time off from uni. My grades suffered because I couldn’t go to every lecture and tutorial, but I still passed. And over a decade later, I’m rarely off work. I’m working full time for the first time in 10 years. I am discovering that my weekends usually require a lot of down time, but that’s ok.

I just hope more research goes into this. I hope better treatments are found. That there will be better support.

Hopefully this film will help with that.

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The cat with the yellow eyes…

I imagine if you’ve been popping over to this here Koala Tree for a while, you’ll have read posts where I’ve mentioned Kylie. People at my work are very used to my yellow band that is always on my wrist, and many friends have had the courage to ask me “Why do you wear that yellow band, what’s it for?” and I get to tell them about Kylie, and why I wear the band…to remember Kylie, to remember her family and closest friends (I pray for them pretty much constantly) and to raise awareness about the need for more research and better treatments for childhood cancers. Sometimes when I mention Kylie, people who have asked also end up hearing about Oliver, Anna, Kate and Keira too.

Today marks two years since Kylie left this earth. Please be thinking of her family today. Anniversaries are tough, this I know. But I think (I hope) that people remembering the one that’s gone, helps the people left behind here who are missing them. A couple of weeks ago, Kylie’s family shared a short film that has been made by Mutual Rescue. It tells the story of Kylie and her kitten Liza. Liza had a very special role to play in the days leading up to and days after Feb 13th 2015, and in this film, Kylie’s Mom, Dad and two of her sisters share Kylie & Liza’s story so beautifully.

I’m also not sure if I’ve mentioned this already, but Kylie’s family have now set up a non-profit to raise funds and awareness for a cure for childhood cancer. You can find out more on the Smiley for Kylie website.

Today it’s likely that if you see me, my nails will be painted yellow and I will be wearing my Smiley for Kylie wristband. And tomorrow, I may just have to go and find some penguins.

BK’s YouTube Pick: Wait for it…

I had wanted to post this on August 31st, but it was only on the Truth 365 facebook page. Now it’s on YouTube. Already, I’m getting responses from my yellowness where people have told me they had always just assumed that childhood cancer gets tons of funding the same as breast cancer, lung cancer, prostate cancer etc.

There seems to be a lack of information on exactly how research gets funded here in the UK. I do know there is no government funding for DIPG, and I don’t think there was anything for Rhabdoid tumours either. To my knowledge, pretty much all the funding for research comes from very specialised charities like Love Oliver, Bloodwise, Sarcoma UK, The Katy Holmes Trust etc. I am very glad we’ve got the Teenage Cancer Trust too, which is a great organisation making such a difference not just for research, but raising awareness, education and supporting teens in adult hospitals.

You’ll probably find just about every charity has been started by a family who has lost a child to the disease they are researching. Because once you’re in it, and you discover how much is lacking and how much is needed…you can’t sit back and do nothing.

Hence….I’m wearing my yellow and gold!

If Hamilton had gone to Hogwarts…

So you may have picked up from my last blog that this week, there have been two things that have consumed my hours that don’t involve work and sleeping.
1. Hamilton: An American Musical – The Original Broadway Cast Recording
2. Harry Potter and the Cursed Child – Special Rehearsal Edition Script

I’ve now listened to Hamilton close to 100 times since getting the CD and free download that accompanied it a few days before Surf Camp, and read The Cursed Child script twice.

Ages ago, I watched this incredible interview that was made for International Women’s Day. Emma Watson interviewing creator and star of Hamilton, Lin-Manuel Miranda. And in it, she sorted the main cast characters into Hogwarts houses.

And yes, it’s been well documented that I’m a fully fledged Harry Potter nerd. And having now listened and looked into the story of Hamilton and the Schuyler sisters…I have to say I love you Emma, you are AWESOME, but…we don’t fully agree on which houses they should be on. Alexander we are in total agreement…but the others, not totally. You aren’t likely going to read this, and let’s face it we are not the sorting hat (and I fully respect the sorting hat who originally gave me a choice between Gryffindor and Ravenclaw, but in new Pottermore placed me in Hufflepuff). This is simply my own take on where I think Burr, Hamilton, Eliza and Angelica would have ended up had they gone to Hogwarts. 🙂

What are the traits that characterise the members of the Hogwarts houses?

Gryffindor – courage, bravery and determination

Slytherin – Proud, ambitious, cunning

Ravenclaw – wit, wisdom, learning.

Hufflepuff – Loyal, patient, fair, hard-working, true

So where do I think the Sorting Hat would place each of them?

Alexander Hamilton – definitely Gryffindor. For all the reasons that you and Lin-Manuel mention here. He is brave, courageous and wants to be the hero. Definitely qualities of a Gryffindor. However, I do see why Dan Radcliffe suggested Ravenclaw – I suspect that his reading, writing and thirst for knowledge may have influenced that decision of Dan’s. However, we know not just Ravenclaws study. Hermione is an excellent example, and I seem to remember a certain Hufflepuff by the name of Ernie Macmillan being very studious as well. However, if we are going from the Hamilton in the musical, who cannot hold himself back from losing his temper at Aaron Burr, Samuel Seabury, Thomas Jefferson…and gets annoyed at George Washington for not letting him fight, and who was determined to do anything to get himself out of poverty and make something of himself – I think that the sorting hat would have yelled out ‘Gryffindor’ pretty darned quickly.

Aaron Burr – definitely a Slytherin. I don’t think there is any case for Hufflepuff at all. Hufflepuffs have pretty much always been willing to stand up for what they believe in, they’ve always been loyal. I think Aaron’s ambition and reluctance to take a stand – he seems to be a follower but one that wants to be at the forefront make him a Slytherin. He’s also pretty cunning in the way he gets elected as Vice-President. There might have been a case for Ravenclaw because I don’t think he is stupid. In fact, I’d even say that there are a few shades of Helena Ravenclaw (daughter of Rowena Ravenclaw) about him…well known parent who was the president of a college?

Elizabeth Schuyler-Hamilton – I think is a tricky one. I would say Gryffindor, because she too is brave and courageous. But I’d also say a potential case for Hufflepuff – she works hard, is fiercely loyal to Alexander (even when he gives her reasons not to be) and stands up for what is right but doesn’t ask for the limelight. And Hufflepuffs pretty much always rose quickly to join the fight for what is right as I said before – and don’t often get the credit for it.

Angelica Schuyler-Church – I think would be a Ravenclaw. She is highly intelligent, smart and thinks with her head over her heart. Also the fact that people seem to rely on her for help, advice and wisdom. She seems to value intelligence above most characteristics herself too.

BK’s YouTube Picks: We’re The Superhumans

The news continues to get worse…Nice…Turkey. Ugh.

But before I head for camp, I wanted to share the trailer for the Rio Paralympics that has been released in the UK by the channel that broadcasts the games for us, Channel 4. I feel lucky that I grew up around people with “disabilities” and actually they were just as, if not more so, as able as me. I grew up watching the paralympics alongside the Olympics – I remember routing for Natalie du Toit at the Sydney games – I think she was the first to swim in Olympics and Paralympics. I didn’t care that she was South African! I know the names of as many Paralympians as I do Olympians. But I realised in 2012, that my friends in other countries don’t get the same coverage of the Paralympics as we’ve had in the UK.

So…for my friends in other countries who maybe don’t get to see what we see, I hope you like this. And I encourage you to hassle your TV broadcasters to give you coverage so that kids grow up knowing that they can.

We’re The Superhumans

By the way – if you go to YouTube, you’ll get the video with sign interpretation and audio description as well. And you’ll find videos that tell you about the amazingly talented people featured in the trailer – who come not just from the UK but all around the world.

Some words about hate, politics and love…

I’ve started writing several blogs this week. Each of them deleted before publication, because they were written in anger.

I’m genuinely scared we are going backwards in this world.

After decades of making progress towards equality for people regardless of race, gender, sexual orientation, religion…things are taking a turn.

At the weekend, 49 people were killed in a hate crime towards the LGBTQ community. I have many friends in that community. Friends that worried when I started going to church that I’d be banned from being friends with them. And then today, a terrific MP – one of the good ones who has stood for immigration, stood up for vulnerable children fleeing war, who has stood for peace, justice and diversity at home and abroad was brutally murdered – possibly for her beliefs – by a right wing nationalist while she was in her community doing her job, ready to listen to the concerns of her constituents.

And so this week, families and friends are mourning. Families and friends of people who welcome others. Families and friends of peacemakers. Families and friends of people who see what unites us rather than what divides us.

There are politicians and groups with extreme views. Yelling. Shouting. Spreading lies. Spreading fear. Taking exceptions and making them generalisations. To the point where the other week someone asked me advice because a woman was contacting everyone in her old church to try and get a pastor sacked because he was reaching out to a family of refugees who did not share their faith. According to this lady, this equated to supporting terrorism.

If all your friends look like you, think like you, follow the same religious/non religious belief as you…take a beat and reflect on that. It’s not good if that’s the case. Your mind will be narrower as a result. You will be more susceptible for believing propaganda and media nonsense branded as truth.

I’m not a sonnet writer, and I know Lin Manuel Miranda wrote this with Orlando in mind. It also fits today’s tragedy in Yorkshire too. To the families of those who were at Pulse on Saturday night. To the Cox family. I can’t speak for everyone else in the world, I can only speak for myself, but I stand for love. And hope with all my heart that love will always win over evil in the end. I’m angry for your loss, I’m sad about your loss, I wish with all my heart that you weren’t going through this pain.

Let’s stand up for love, peace and embrace our ability to create together a diverse world that has room for all of us, and our stories.

 

BK’s YouTube Picks: Carpool Karaoke

Yes. I’m a HUGE musical theatre fan. Plus I’ve loved Jane Krakowski since there were 3 shoes I HATED to miss on telly as a teen: Friends, Dawson’s Creek and….ALLY McBEAL!

I absolutely love James Corden’s Carpool Karaoke. And this has been the best since the Adele one. 🙂

 

BK’s YouTube Picks: Reasons to stay alive

As I’ve mentioned one of the books I’ve been reading is Reasons To Stay Alive by Matt Haig. Last week he tweeted a link to the video below. The video has been inspired by Matt’s book and gives encouragement to people battling depression.

BK’s YouTube Picks: Different Paths to the Same Destination…

I am a YouTube addict. It’s true, and I love watching interviews. I recently discovered clips from an online show called offCamera, and I’ve been loving listening to the wisdom they share gained from their life experiences. This video clip from Sam’s interview with Dax Shepard really made me think and encouraged me. In it, Dax talks about the differences between himself and his wife, Kristen. Their very different upbringings led to their radically different perspectives on people (Kristen’s nature being to trust people, Dax’s nature being to suspect them as having an ulterior motive). And yet, somehow they’ve ended up in the same place despite having led very different lives from childhood to adulthood.

A little warning – there is some strong language used by Dax Shepard in this clip, so you might not want to watch this video if that’s going to bother you.

I think it’s something we all need to remember. It’s far too easy to pigeonhole folks as a lost cause, or a guarantees success story – when in fact we simply do not know. Many things are possible, and perhaps we need to keep that in mind more often. 🙂

BK’s YouTube Picks: Kitten Therapy

So I got word that my ethics application to get my research project has been submitted and being processed today. I’m still struggling to find the words for my literature review, but my panicked writers block has meant that I’ve got lots of other things accomplished.

Trying not to stress out, and knowing that some of my classmates are feeling the same way is making me feel a bit better. However, I am thinking that having a  place to be barefoot sitting on the grass in the warm sunshine with some kittens sounds wonderful. SoulPancake, if you could make it over to the UK? It would be much appreciated!