Friday 31 August 2018

Keep Fighting



I haven’t done this writing lark for a while now so I might be a bit rusty, so please bear with me...

It’s been a topsy-turvy year with plenty of ups and downs. As a family we started this year with our house on the market; it simply wasn’t fit for purpose anymore. This is the first time I’ve really told anyone this but I’ve spent most of 2018 living out of my front room; sleeping on the couch because I cannot climb my own stairs anymore. The effects of my condition are creeping up on me at an alarming rate, so much so that it’s even surprised me.

I’ve felt like half the man I am. So when the sale of our house fell through for the second time, it very nearly broke me. We had an expectation that we would move into a house that was fit for us, with downstairs living and a wet room etc for me, but we lost this due to our buyer pulling out on the day of exchange. So here I am, still living on the sofa and it’s bloody painful!

The weekend that the sale fell through I started to feel different in my head, the colour was fading to black and white and the joy was leaving me. My wife kept asking me if I was okay and I just said ‘yes’, when I knew full well that I wasn’t. It got to the Tuesday morning, I was supposed to be at work and I found myself just driving around in my car, so very sad inside myself and I never thought I would ever be happy again.

Luckily I took some advice from my HR department to speak to my GP, and that’s what I did, through so many tears. She told me that she didn’t think I was depressed but that I was putting myself under a lot of pressure, and that I needed to step back from certain things. So that’s what I did and I also had a conversation with my wife about everything. I always thought it would have been daft to say certain things, but it really wasn’t. If you’re struggling then the best thing you can do is talk.

I decided not to worry too much about the house and things I cannot do anything about; what will be will be. We have tried to make things more comfortable for myself and hope that we can move house shortly.

I’ve been so lucky with help from family and friends this year. We had a group of friends come round and they did a mini DIY SOS on our house to help, and it really has. It’s also some of the same friends that have been fundraising this year and we have raised the most amount that we have ever raised so far!

Now here’s a thing about life; when you’re in your hour of need you will notice those that come running to help, and it’s those people that you should never forget. Also, you should
always remember there may come a time when they need your help too, so be prepared to get stuck in.

So we got ourselves back on our feet a little despite this also being a year for progression with my condition. I have noticed that steps are far more painful and the energy is fading more and more, and my anxiety in public places is getting more erratic. But all of my team were pushing themselves; round the London Marathon, out of planes, cycling 100 miles and so much more!

It might sound silly, but if I keep moving then, well, I keep moving! I haven’t been fundraising like I usually do, but we have started to pick that up a bit more lately and I’m starting to feel myself again; physically and psychologically, which is great for everyone.

A couple of weeks ago I got a surprise email from Muscular Dystrophy UK telling me that I had been nominated for a national award as ‘Volunteer of the Year’. This news swept me off my feet. This was recognition for everyone that has ever helped me to help others. I did not see this as a personal achievement or a badge for me to wear, this was for everyone; the family, the friends, the fundraisers, the supporters, those that sponsored and those people that have read my previous blogs and may well be reading this right now. This is all on you and I cannot thank you all enough!

It just doesn’t stop either. I am surrounded by people with the same thoughts as me and that’s to be selfless and human and try to think of others, those that are grateful for all they have and decide to share a little.

In September there is a 35 mile charity walk in Yorkshire hosted by TheSquare Ball, the award ceremony for Volunteer of the Year is in London on September 20th and I’m also on my very own fundraising adventure which I can tell you more about later.
 
So, as always I’ll finish this in a positive manner...

If you ever need help then ask for it, if you ever feel that you won’t be happy then talk to someone, quickly. Lastly, as my Dad once said; if you have a roof over your head and you know where your next meal is coming from then go and look for someone who doesn’t have those things and help them. You can take that as a metaphor and use it in any way you wish, just do your best to be nice.

Most importantly, for myself and others, keep fighting!


 #MusclesMatter











Here is my film that we made to promote Muscular Dystrophy UK



Monday 1 January 2018

The Revolution Of The Resolution


It’s that time of year where we all promise to better ourselves, to be better than we were before and this grates on me. It always has done especially with the influx of the many different faces of social media.
People tweeting, facebooking, snapchatting and posting on Insta about the “New year, New me!” and by February they’re done, back to actively seeking out a “Maccys”.

Every year, for the last few years I have made promises to myself, to stay on my feet (quite literally), raise awareness and funds for others with Muscular Dystrophy and get as many other members of family and friends involved as possible.

I deteriorated in 2017, there is no doubt about that, I have become a lot weaker, a lot faster than I expected but I refuse to put too much emphasis on that.
As the title suggests here I will once again try to revolutionise the resolution, genuinely stick to my guns and fulfil the promises I make to myself and others, and once again you can come with me too. I am Mr positivity, it would be so easy for me to see the glass as half empty but this is not what I do, I will always be grateful for all I have and all we do together; family, friends old and new, those that I work with and those that stand beside me on the terraces, this is what is important to me and my family, this is my tonic.

Usually I would ask my wife; Michelle to retrospectively read and give advice on the blogs that I write but this time I asked her before. We both agreed that we shy away from the word inspirational so we would like to say that this year we encouraged other people to come with us and climb a mountain in Wales; the biggest mountain in fact. More than 40 of us made it with so many personal challenges and stories of our own, we made memories forever and as a group, over the year, raised over £13,000.

I just want to quickly give you three examples of what I mean, it wasn’t ever all about me.

My good friend Heidi is a fellow Leeds fan who feared the mountain because of her knees and her age (her own admission!) but despite this Heidi had recalled one of my own sayings on twitter... “If I Can, You Can Too” and she took that with her to the top and succeeded.
Marching up the Mountain- Heidi & Jo


Secondly, it was so surprising to see so many children get to the top, that was not the plan at all. The idea was that they got half way and turned around with some of the adults and return to base camp but they just kept going. Our friends daughter, Elsa Peterson sent me a message recently and she said “I felt really proud of what I’d done and faced a massive challenge and completed it”.
Memories made for many of us, forever.

Elsa - The Kids Are Alright

Lastly, my mate Ben Still who suffers badly with depression and anxiety says “If you can help others then you should, this time of year is never really pleasant for me, these fundraising things keep me going. Climbing Snowdon in 2017 and the Marathon in 2018 has given me something to focus on and this trickles down through our house and our family. I stop dwelling on the negative thoughts in my head and even my wife thinks I’ve been funnier and happier than ever before!”

Ben & Anne-Marie Still - On Top Of The World


So many people pushed to their limit and they still ended up thanking me for it rather than punching me on the nose!

Onto the new project that is 2018 and once again we have been overwhelmed with offers of help. People offering up their time to help me to help others and that is where my new idea comes from; Hywoods Heroes.
This is not a vanity project, this is not about me and what I’m doing. This is all about the team that want to find treatments for these rare conditions and I didn’t even ask them, people have been sending me messages since August in 2017 to try to help in any way in 2018 and here’s a little insight into just some of what we'll be up to...

A team of 5 runners will be taking part in the London Marathon.(Heather Curtis, Ben Still, Robert Holmes, Wayne Martinig and Mark Sammon)

Two friends will be skydiving 13,000 feet.(Ben Pusey and Neil Roblett)

So many people will be ‘Moving Miles’ for muscles including Ian Donachie and his Cub group who will be hiking in the Chilterns for the cause.

Our annual fundraiser at our local pub.

Taking part in Parallel London.

A visit to the famous Iffley Road track in Oxford.

A sponsored track day at Brands Hatch.(Ben Tucker)

And two very special challenges for myself, personally, something I’ve never tried before.

On Saturday 17th March I have been invited by Leeds United to collect coins for Muscular Dystrophy UK (MD UK) around Elland Road and whilst doing this I will make a circuit of the ground myself. This will be a big a challenge for me as I left part of myself on Snowdon in 2017, I hurt myself and I’ve never recovered but it is what it is and I must not moan or carry on about it.

Luckily I wont be alone for my second big challenge for 2018. A team of us (The Marathon runners mentioned above) are arranging a ‘Black & Orange’ ball on October 27th
The ball will consist of reception drinks, stories of the conditions, a three course meal, an incredible auction, finished off with dancing and drinking into the night.

Finally I have been given the opportunity to make a short film for MD UK , again with the help of friends such as Paul Adams, Simon Rix, Ralph Ineson and others.
The film will not be about me, it will highlight the reality of living with a muscle wasting condition and the outro will be told by celebrities telling you how important muscles are. This has been exhausting already but I am quite sure it will be worth it all in the long run.

So, you may ask yourself, can you help? Could you be one of Hywoods Heroes?

We have a target in 2018 of £15,000 to help children like my little mate, Finley and it is imperative that we do this.



Super Finley!

A massive thank you to everyone who has made a donation financially and offered to help physically, it is you that drives us on, you are the true Hywoods Heroes.

It honestly does not take that much to be selfless, there is so much power in self sacrifice and when you do something good you get a huge return, naturally.

Get Involved!

#MusclesMatter 

#HywoodsHeroes 

#IfICanYouCanToo 


Cheers!




Huge thank you - Michelle  x