Ups and Downs

On 11th May 2012 I took to social media to tell my story about going to football as a disabled supporter. This was a ‘line in the sand’ moment for me in my life; nothing would be the same again. And what a journey it’s been……….. 

For me, social media has been an extremely positive experience, but I can appreciate it can be a dark place for so many people too and I’ve been asking myself why that is?

  

It seems that social media has enabled people to do and say as they wish and I believe this starts from the top down. Politicians and ‘trusted’ media outlets have been using vitriol and spreading bile for the last few years, more than ever before, and nobody has held them to account for it. What happens after that is every foot soldier for any political party, right across the spectrum, feels they have the right to also speak and write how they wish, without any comment or come-back expected. 

Obviously, we are adults and can quite easily not write or reply to these remarks we see on a now daily basis, but some of us do and what I’ve learnt is that it will eventually end up causing me concerns for my own state of mind.  

The problem with being politically argumentative on social media is that it then carries over into every single part of our lives. It is the age-old theory of the adult and the child; if the adult says or does something then you cannot expect the child not to copy. 

It seems to have become acceptable to judge someone on the colour of their skin, their ability or disability, their size, their gender and indeed their mental health. This is unacceptable and we need to change this attitude and fast. 

The old saying ‘if you can’t say anything nice then don’t say anything at all’ should be applied more often, and people should think more about how they interact with others and how they react to things they see on social media. My take has always been to show empathy, compassion and to be selfless, and trust me the return is incredible, it happens so naturally.  

I’m not innocent here either. I was thinking about my memories the other day and they say that most come from love, laughs or sadly trauma. The earliest memory I have is being sat on a potty on the edge of Mount Snowdon, where I literally crapped myself! I don’t think many people have to think about memories too much nowadays because Facebook can take care of that for us. It’s as if we have exported that part of our brains to a 2TB external hard drive and with that goes emotion and care. Our children see this and replicate it on their tablets and pads too, some of this is our fault, but it’s in our hands to change that, and to go and physically make new memories before it’s too late. 

After seeing and hearing lots of stories of people taking their lives, it resonates with me and reminded me of my dear friend Jermaine who sadly took his own life. He was exactly the sort of person who would definitely make you think everything was OK. He was, quite typically, the life and soul of anything he was involved in. I’ve never seen a smile like Jermaine’s and I’ll probably not see one like it again, and this is why we should all talk more, so these things are prevented. 

‘Be Kind’ should be an emotional default, we shouldn't even have to think about it. It's the way I've been treated and the way I treat others. I have been so lucky simply by being selfless. I’ve seen great things from people, so we must take all the positives and tell others about them too.  

Many adventures, memories and stories later and I’m still here fighting to beat my degenerative condition, and I actually feel like I’m winning both physically and mentally. And this isn’t all on me, it’s due to so many people around me. So many people have helped me come so far, due to belief and solidarity. 

The friendships made along the way and the awareness and funds raised have been beyond all of my expectations. During my campaign over the many years, I’ve been on Radio, TV, our film campaigns, I’ve met some of my heroes, we’ve had royal invitations, I’ve represented in the Houses of Parliament, headed up the national ‘Move A Mile For Muscles’ campaign, taken 40 willing family and friends up Mount Snowdon, carried the Paralympic torch, raced around Brands Hatch, raised so much awareness & funds and so much more than that.  All these things, along with friendships made, make all the pain worthwhile. The ability to be nice is really quite simple and will cost you absolutely nothing at all.

So where am I now? What’s next for me? 

On April 9th I will be hosting a comedy show with Jon Richardson & friends at the Waterside Theatre, Aylesbury. This is my biggest event by a long, long way and will be one that I am most proud of. I was dragged up on the best of British comedy from The Goons, Month Python, Norman Wisdom and so on. I still keep pinching myself as I drive past the theatre most days, unable to believe this is actually happening. It’s going to be incredible! 

The other day I was sat down enjoying my brew and I realised how far we have come, and I got quite emotional. I started with one blog post and walked one mile, which raised £1000. 

We are now an official charity family fund called “Hywood’s Heroes” and to date have raised over £150,000, which equates to 3,333 hours of world class research. All paid for by us and indeed you, reading this! 

This is what kindness, empathy and being selfless does. This is a massive positive about being on social media, this is the best of it, because I couldn’t have done it any other way. I find it impossible sometimes to put into words my gratitude and thanks to so many people. There was a time when I would sneak into football under the radar because of the way I walked due to muscle deterioration and exhaustion, utterly embarrassed by myself. Now I find it hard to meet up with so many people beforehand when there is also the important factor of indulging in chips and gravy before kick-off. Despite all my health issues I realise I am a very lucky person to have made so many friends. 

I think we should all try to use the word ‘hate’ less, scroll past if you don’t like something, don’t comment if it’s not necessary and try to be a bit bloody nicer. As I said, it will cost you nothing at all and everyone will feel better about many more things. I believe there is a connection between social media and our mental well-being, and we should take breaks away from the social media bubble more and get out and about. Exercise is a massive tonic to help unlock the cobwebs, release the stored thoughts and end the self-doubt and the relentless questioning of ourselves.  

Look out for those around you, ask if your friends are ok, be kind and be more selfless than you’ve ever been before. Take into account that we all have ups and downs and occasionally we need picking back up, because even the strongest of us fall down occasionally. 

Some of #HywoodsHeroes - Friendship!

Cheers!   X 

Samaritans – 116 123 from any phone 

Mind – 0300 123 3393 

#BeSelfless  #MusclesMatter   

Transitions and where to find them

I’ve been writing for about six years now and it all seems to have passed so fast. I started writing about a transition I was going through with my condition and I thought I would share this with people so they would become aware of Muscular Dystrophy; the condition I live with.

“One day I will need a wheelchair” I have always told people, because my legs and other muscles will begin to fail me. This is now happening in earnest, and that’s just fine. I was diagnosed with a life-limiting condition 22 years ago and had no expectations, I just knew that it was a huge fear of mine which brought on lots of anxiety, questions and self-doubt. What sort of husband, father, friend and employee would I become? If my body fails me, then how will it fail me? And yet nobody has the answers, so I’ve needed to write the script for myself the best way that I could.

We’ve taken on many challenges over the years to raise funds for research so others don’t have to have the same pain as we’ve endured; the falls, the weakness and the not knowing what the future holds. I truly believe that the money and awareness we have raised will help others and I am very glad and grateful for this.

About those challenges then… many of us have come together and taken on skydives, marathons, racing around Brands Hatch, swimming, LIVE music, organised a black and orange Ball, moved many miles and even moved mountains as well as many other events. What a team we have become and we started with one solitary mile.

This all comes from self-belief and trying to better myself and to help others believe the same about themselves too. It’s important to inspire others but not become anyone’s ‘Inspirational porn’. I’d like to think we’re all here to help but not to be poked and stared at, we’re just doing what we do because everything about it feels right.

Do you have some spare time? Get involved.

Are you fit and healthy in a position to help others? Get involved.

Got anything spare in the coffers you’d like to donate? Get Involved.

Do you have a large following and a voice on social media? Get Involved.

We’ve always been about being selfless, because it will cost you very little and the rewards are priceless and they usually end up on your lap without asking for anything.

My desire to be the best father, husband and friend has always been a passionate one. It’s important to me to be the best I can be, despite the challenges of my disability. My diagnosis is a horrible thing, but it’s what you do with the diagnosis that can define us and I always knew it would not be my weakness that defines who I am but my strengths, which is massively ironic.

Someone told me that I have a muscle-wasting disease so I became stronger and decided to fight it and, as I have mentioned, I took a lot of you with me on this journey because we can all do better than what we think we can. I remember climbing Mount Snowdon with family and friends and I took long breaks for air and water and I looked around and saw my girls, and thought that I don’t want my children to follow in my footsteps, I want them to take the path next to me and go further than I could have ever dreamt possible.

Gathering composure on Snowdon

All of us have a responsibility to be the best we can be and let others see that and see if they can better what we do and who we are, and ultimately leave a lasting legacy. I’m glad we have pushed

ourselves to the edge, but now I have to reflect and think more about my care, because my mobility is getting worse.

2019 will be the year that I need to use a wheelchair and that’s absolutely fine, I’ve been in this transition period for a while now and it’s time to bite the bullet. Wheelchairs are expensive, so this is why I am raising funds for my own chair as well as research to find treatments for others. Don’t think for one minute that I’m here for your pity, I am not. I have had some great years on these legs of mine and will be going out with a bang. I will be taking on challenges this year to raise these funds and when my chair is paid for then I will continue to raise funds for others.

In 2018 I pretty much became a prisoner in my own home as this was not fit for purpose anymore, my life consisted of a life downstairs, living on my own sofa and feeling trapped. House sales have fallen through time and time again and this has also put a financial burden over my head, which also resulted in mental health issues coming to the fore. Again, I do not want pity, what I do want is change for others. I am so lucky to have family and friends around me that can help, but imagine if you were in my situation and didn’t have that support network? It doesn’t bear thinking about. This is why I think it’s important to look out for those around us that may be trapped in their own homes too.

I have a little list of challenges in 2019 and this list Is slowly getting bigger, as is the ‘Hywood’s Heroes’ team; a bunch of selfless people that are helping me to help others. On Sunday 10th February I will be walking an assisted mile with family and friends at the famous Iffley Road track in Oxford. This will launch the National ‘Move a Mile for Muscles’ campaign for Muscular Dystrophy UK (MD UK), of which I am the very proud ambassador. I certainly won’t be breaking any 4-minute mile records but I will be showing you that anything is possible if we put our minds to it.

22 years ago I was bitter. I thought that I didn’t deserve this disease, and I thought ‘why me?’ Now I think that this could have been a blessing and I should be grateful with all that I have. I live my life with a smile as much as possible, I never take anything for granted and I try my best to be selfless, as I like others to be.

Sometimes the only person that can help us is ourselves. It is too easy to look to others when really we should take an introspective look at what we’ve got. We all have the strength to make the sun shine, on us and our loved ones. So make sure you use it.

MD UK Family Fund - https://www.musculardystrophyuk.org/get-involved/family-funds/funds/hywoods-heroes/

Just Giving - https://www.justgiving.com/campaign/hywoodsheroes

#HywoodsHeroes

#MusclesMatter

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