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

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 17^th 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 27^th. 

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!

https://www.justgiving.com/Martin-Hywood5

Huge thank you - Michelle  x

Some Might Say

Some might say you can't just ask for things and expect to get them; the same people that will try to quash ambition, their expectations of you and life are very little. That used to be me; I used to ask myself things and would put the answer off for myself, to protect me, to help me.

It's not about me anymore; I did make a decision about my illness and about trying to be more than just me, more than what I expect of myself and what others expect of me too. I always wanted to be happy and to be an adventurer so that's what I decided to be and the best part was that I was going to take some of you with me too, to be selfless is a wonderful thing, and sometimes you don't really have to try too hard at all.

Every year I have given myself a challenge to help towards funding research into my condition, not for me but for others that may receive a diagnosis. Every year the challenge has got bigger because I exceed what I thought I might in the previous year, with so much help from family and friends I have done many great things for the greater good, beyond what I ever thought possible.

It is a tradition of mine to announce my new plan for the year on the 1st of January every year, usually lunch time.

2017 was no different and I had been planning behind the scenes way before this point, it's always this way.

"This year I plan to take a team to the top of a mountain!"

WHAT?! What are you thinking, there are able bodied people in this world that wouldn't even try this, you must be mad.

Thing is, is this... I had seen lots of pictures of Mount Snowdon and it looked nice so that's what I chose. As it sunk in and people around me actually started taking me seriously they offered to join me, the usual suspects from all over England. My Leeds mates were in, "you're a soppy sod but count us in", my mate Dean was flabbergasted because it would mean he would have to thin out and get fit, a bit. Our eldest daughter; Lucie lovingly rolled her eyes and said "S'pose I'll have to get some new boots". We were on our way and my confidence was rising as more and more people signed up for our challenge.

Within the first week I had hit £600 on my fundraising page, within a month I hit £1000 and with this came great responsibility, there was no backing out and I was more than committed and with that came trepidation and panic.

The majority of the route planning and actual movement up the mountain was being taken care of by our guide; James. I worked with James and he also worked in lowland rescue and had also scaled Snowdon many times. I had no need to worry there then. My family and friends were extremely positive and enthusiastic but as the months went on something was keeping me up at night, an anxiety was scratching at the inside of my chest, shortening my breath when I wasn't even moving.

Occasionally I would be reminded that I was weak and I had a degenerative condition. I would fall, dislocate things, pull ligaments and not be able to get back up again. Sometimes, as much as I tried, mind over matter was not enough. The harsh reality of my condition was also an eye opener of why I actually need to get this team to the top. I never wanted anyone else to go through what my family go through on a daily basis; my condition affects all those around me. My disability is not just mine; it’s my families, my friends and my colleagues too.

It was never all about me though and those that had volunteered didn't think it was about them either, they thought they were coming with me to help me but I was actually trying to help them, to prove to them also that we can all achieve more than what we ever think we can, to take ourselves way out of our comfort zone physically and mentally.

The months moved rapidly this year and we were soon down to counting weeks and then on a Monday in May everything changed. I was sat in my office at work and a surge of fear swept over me, I was riddled with anxiety and the worst thoughts and fears I could ever imagine. My arms and legs were electric with pins and needles, my heart was thumping out of my chest, I thought that I had forgotten how to breathe and I felt like I would never be happy again. Luckily a first aider was near me and together we made our way to a quiet area to try to get some composure, calm and try to reset whatever was going on in my head. I went straight to my Doctors surgery and I sat there for hours until I could be seen, I described what had happened at work and there was a member of the mental health team on site who also listened to what I had to say. The diagnosis was a panic attack which I have never experienced before, I was advised to simply stop all my plans, this was my mind telling me it didn’t like the idea of putting myself through this. So there it was my choice was to stop what I was doing or make myself ill, Snowdon was far too ambitious.

I pondered on what to do and still feeling some panic inside I called a good friend of mine, I didn’t want to talk about this at home but I desperately needed to confide in someone for some sound advice. That was the best decision of the year, the best thing I could have done. My anonymous friend also told me to cut my ambition “Just keep telling yourself that you’re just going for a walk in North Wales, no more, no less, if you go upwards then that will be a bonus, as soon as you’ve stepped foot on the Llanberis path then you would have done more than most”. That was my tonic, that was the medicine that took the panic away, besides, it never was about me getting to the top, it was about me convincing a team to get to the top, to help me to help others. I’ll never forget that phone call, and I’ll never be able to thank that friend enough.

I thoroughly enjoyed our run up to the day apart from the week before as our team numbers were rising and I was trying to make sure over 40 people were all ok and everything was checked, safety was paramount and I wanted to make sure I had helped everyone in our team as much as possible, after all I had my daughters, god children and nieces to think of too!

We arrived at our base camp on the Friday evening after a gruelling six and half hours’ drive but the welcome was warm and the beer was cold, I couldn’t do anymore, everyone was here, everyone was equipped and smiles were in abundance. For the first time in six months I felt comfortable, what will be, will be.

We woke up on Saturday 1st of July and this was it, time to fuel up and get out to meet everyone. I tried my best to eat as much breakfast as I could but everything was tasteless and my mind was elsewhere, I just wanted to go and before we knew it we were in the cars and on our way to meet everyone else. It's 08:30 and the car park in Llanberis was already half full.

All set

So many beautiful faces were there and I felt very lucky, secure knowing that everyone here was here for the same reason as me, to take on this challenge, to support each other and to try to make a difference for others. All of this goes back to my first paragraph here, people turned up because I asked them to or in some cases I didn't need to. The people here didn't want a lay in, they didn't want to sit in and watch Saturday morning TV, we were all adventurers at least just for one day!

We had to split the group up into three separate groups and slowly but surely we made our way with lots of nervous energy as our catalyst, our fuel to stoke the fire in our bellies. Our chosen path was known as 'The Motorway' for getting up Snowdon and I could see why, it was such a busy path with lots of people moving at different speeds and indeed different ways. We saw competitive runners, morning joggers, a team of people tied together, teams of people lifting occupied wheelchairs and even a unicyclist! (Who just kept falling off!)

I had an expectation of myself, I knew this was going to hurt I just didn't know where and when. Well it was immediately and everywhere below my chest. My lower back ached because my muscles are like marshmallows and they just can't support me. My thighs were burning to compensate my non-existent hamstrings and my calf muscles and feet were pinging with pain, white hot stabbing pain.

I always said I wanted to get to the top of this mountain by hook or by crook, by any means possible and I couldn't help but lean on people, those around me became bannisters up a mountain like bannisters up our stairway. Nobody objected to helping me when I really needed them and they took it in turns too, without being asked or prompted. I was so proud of this team, I cannot tell you this enough because we all felt shattered as we were hitting two hours of climbing. All the while we laughed and told stories, fell over, laughed some more, cried a little, and laughed once again.

Brothers In Arms

This challenge was relentless, the surface was really taking its toll on my toes, they kept locking up and cramping, giving me a surging pain in my achilles heel too. The rest stops were becoming more frequent and I started to feel like a burden on the group. I was becoming beyond exhausted, at a point where we had to think about safety, the group kept going, the summit was insight.

 

The Summit is in sight

I wanted to get a group of 30 people to the top of Mount Snowdon; I wanted to prove to everyone who was willing to come along that we would make memories forever, for all of us to keep. There was more than 40 of us that got to the top and all I saw was smiles, that's all I ever wanted to see, my family and friends on top of a mountain, taking lots of pictures, smiling, cuddling, feeling overwhelmed and extremely happy.

Jubilation!

Time to celebrate!

Snowdon was one of the best days of my life and one of the worst. Best because of what I've just written above and worst because it was the biggest pain I had ever felt, a whole new level of enduring pain, pain where I never thought pain could get to! It was all worth it in the end though. We had some amazing donations and the Friday night before our climb my friend and fellow Leeds fan; Gary donated his work bonus to hit my target. It didn't stop with Gary though the donations kept pouring on to our Just Giving page and we soon hit £9000.

We’re on our way now you see, we are getting where we need to be. our page is nearly at £10,000 and that means hope with funds raised paying for World class research into these devastating conditions. We are laying foundations, giving scientists stepping stones to progress and treatments. None of this would have been possible without friendship and compassion; we all need friendship even more so as we grow older or less abled than we were the year before.

I never take a day for granted, since my diagnosis every day has been a fresh start and an opportunity for adventure, an opportunity to tell my story, to use my breaking body as a vehicle of awareness to try to help others. When I was told I was ill I was angry, pent up furious anger that helped nobody, I would have asked myself why me, why did this happen to me?! Now I ask myself why not me? I have this rather large mouth, the ability to communicate with others like I'm doing right now as you're reading this, I'm a very lucky man to live the life that I do.

I believe that everyone should try to help somebody else if you have that chance, be selfless even if it's just for one day a year.

Life moves fast, be nice, make the most of it and above all else, enjoy yourself, it's later than you think.

#IfICanYouCanToo

https://www.justgiving.com/fundraising/MusclesMatter1 

Our day in Pictures... https://flipagram.com/f/1BV7zk1AwVX