Monday, 8 April 2019

Long Time No Post

Dear Readers,

Sorry it's been a few months since my last post and video, so much has happened since the beginning of February, where do I start?

Firstly, fellow PH'er, David Stott, is doing incredibly well with his PH and is participating in a 10K run and has chosen to fundraise for our super charity, PHA UK. Please click here to read his story and to donate! Thank you!

I will be returning to vlogging, I loved doing my vlogs, but I'd put a lot on myself to release one every week, but I managed to do over 30 videos, so I'm pretty pleased with that! It is also very mentally draining being online, and sometimes you just have to take yourself away from it all until you feel mentally strong enough to deal with everyone online and that's what I did. I'm looking forward to returning to the YouTube world again very soon! If you're new to PH, then please go to my playlist, New to Pulmonary Hypertension, for some PH support. Video 1/2 shown below...

Sadly, the whole PH community has had to deal with the loss of one of our star PH'ers, Stacie Pridden. Stacie was the life and soul of everything and every PH'er absolutely loved her. It was absolutely heart-wrenching for us to receive the devastating news on Thursday 15th February and it really struck me hard. I was very lucky to call Stacie a friend and to have met her a few times. She loved everyone, and everyone loved her. Stacie will always be remembered and her legacy of "Life Is Worth The Fight" will continue to be led by so many of us. I will be releasing a tribute video to her this month.

On Monday 11th March, Terry, Tina and I went to Swindon to attend her funeral. It was a beautiful service, for a beautiful young lady and we were all so pleased we could say goodbye and also celebrate her life. A huge thank you to Terry for driving myself and Tina all that way! It was lovely to have Terry's support, but Tina and I also had each other's support and that was very special. With us both being PH'ers, being there for each other is what we do, because that's us. We support each other through the good and bad times of living with PH and I'm very lucky to have my Twinnie.

On 19th February, Terry and I had a really fun afternoon with the PHA UK filming crew. Both Terry and myself were interviewed for the new video being created to highlight the financial impact of PH. It was great to see the team again and I really enjoy filming for them and being a part of raising awareness for PH. The PHA UK do so much for us PH'ers and I'm glad I can be involved with helping them. Terry came straight in from work and was sat down in front of a camera. He was thrown straight into the spotlight, but coped well and did a great job with his interview. Ever since I let him into my PH world, not long after we met, he's taken it all into his stride. He's written blogs, created his own vlogs, attended PHA UK meetings and filmed for PHA UK videos too. I am very proud and pleased that he gets involved and supports all my PH antics! Well done Terry! Our dogs definitely got spoilt with a lot of attention to keep them quiet whilst I was filming! 

At the end of February it was my Mum's birthday. We had a lovely time celebrating with her and we took her to see The Mousetrap play at the Mercury Theatre in Colchester. She absolutely loves all stories and plays by Agatha Christie, so it was definitely the perfect present for her! We all really enjoyed the play. This was followed by Terry's birthday and we celebrated together by going to the Arsenal vs Manchester United game! We are both members of Arsenal, me being a disabled supporter, so we get to see lots of games and get a great view, as I'm usually in my wheelchair. Even though there are seats, many supporters stand, which I don't blame them at all, but there's no way I can stand for the 90 minutes of the match. It was a great game and to top it off Arsenal won 2-0, so a very happy birthday for Terry!

It's also been a very busy time for me work-wise because I’ve been preparing my music students for their piano exams!! As someone who’s put herself through 25 ABRSM music exams, I know exactly how they are feeling today! I’m super proud to be a music teacher and help them on their musical journey. I can’t work full time due to PH, but having a part time, self-employed job has enabled me to choose my own hours and days to work, therefore I don’t over do things and can do as much or as little work as possible.Yes my husband has a full time job, and my work may only look like a little bit to others, but it keeps me sane knowing I can help and support us a little. Plus my extra income goes a long way! Working with the students and sharing my music passion with them, means I have a job I love and look forward to each time! I was very excited to receive their music certificates in the post 3 weeks later and letting them know that they had passed their exams! 

On 22nd March, Terry and I travelled up to Sheffield for the PHocus2021 meeting. We love getting involved with meeting and everything to do with the PHA UK. We find it all very interesting and love hearing other people's opinions on PH matters, as well as contributing our own. It was really enjoyable and lots of ideas were discussed. One being the next PH Awareness Week... this will be taking place 4th -10th November 2019 - save the dates! The PHA UK have their 20th Anniversary Celebrations Conference coming up on the 4th May, so Terry and I are very excited to be attending this conference in Oxford and there will sure be a post following it, for you to read all about the shenanigans of this celebratory event!

It's been a very emotional and busy couple of months, with ups and downs of my PH, as I would expect, but amongst the grief and sadness, there has also been celebrations. It really does make you realise how short life can be and to take life with both hands and make the most of it. We all don't know what life holds for us, but the thing we can do is to make sure we live it to the full. As Stacie said, "Life is worth the Fight" and let us all remember that. At the end of this month, Terry and I will be celebrating 2 years of marriage and we're off to Snowdonia, Wales with Izzy to celebrate. So I'll be back to give you a low down on what I'm sure will be a wonderful Welsh holiday and celebration. Until then, keep an eye out on my YouTube channel, follow my Facebook and Instragram to keep up to date with my daily PH journey and finally keep strong and smiling! 

Ps, here's a new photo of me... I've decided to get a bit of a makeover and have a new hairstyle!

Thanks for reading!

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