Invisible illnesses are both a blessing and a curse 😕 .... we continue to raise awareness and funds until CF stands for Cure Found Gx“Throughout my life I’ve often been asked “you don’t look sick?” “I am holding up an X-ray taken from a cystic fibrosis patient to show the extent of the damage that my condition causes to my lungs. Even though I am smiling on the picture, living with cystic fibrosis is a daily battle.”
Ever been asked a question about looking like you don’t have a visible disability? Jack, has shared this photo to mark #InvisibleDisabilitiesWeek.
To help spread the message, we’ve shared the severe impact cystic fibrosis has on the lungs. Share your thoughts about what having an invisible disability means to you. ... See MoreSee Less
SLOWLY After announcing I was going to walk Land’s End to John O’Groats’s surprisingly Training sort of took a back seat. It was coming up to Christmas, it’s only a walk I thought, I walk every day, ok, it’s a little further…. but anybody can walk, …. Deep down I knew this was bullshit…..but early this year I had a wakeup call… I sat in my car one Sunday morning after boot camp and did one of my first videos based on an article I had read. The first time I read this article it made me cry, I feel I had held back on so much for so long, after Thomas, our Grandson, was born, I can honestly say, it took ten times of me reading this article before I put it on camera. I cried on the 11th as well on the video but it was hard to see, if you will listen one more time it shows how brutal CF can be.
Composure………. Courageous Nantwich schoolgirl Elle Morris, who underwent a double lung transplant while fighting cystic fibrosis, has died. The tragic news emerged just days after her heartbroken mum Becky revealed that specialists could not find a way to cure an infection she was suffering. Brave Elle sparked nationwide coverage when she and mum Becky launched the “Elle’s Wishes” campaign. It raised huge awareness of the cystic fibrosis condition which she suffered. Her death was announced on the Elle’s Wishes Facebook page on (January 3). And reads as follows: “It is with heavy hearts we need to let you know our incredibly brave and beautiful Elle passed away in the early hours of Wednesday 3rd January,” it said. “She died peacefully in the arms of her Mummy and Daddy with her family and friends close by. “Our immense pride in her strength and dignity is helping us through these painful days. “We can’t thank enough the medical teams who have looked after her with such love and care all the way through until the end which in true Elle style, was when she was ready. “Fly high our beautiful brave warrior we will always keep you with us, your inspiration and love for life is a memory we will cherish forever.
Elle had been due to start at Brine Leas High School in September, but complications after her transplant in February 2017 meant she was unable to attend. Specialists at Great Ormond Street Hospital did everything they could to try and save her but announced a few days ago that they had run out of options.
Elle ……..was 11.
It made me think about Thomas who run’s around chasing me with a sword or help’s me chop logs, I have met Amelia a few times and she is a beautiful young woman who is so full of life, but after reading the article about Elle, I understood that CF has an evil dark side that feels nothing for anybody. I found Elle’s passing difficult to understand, but it reiterated that not all CF news is flowers and Chocolates.
The article awoke me to the fact that this is a fight, a real fight, CF is evil, it is invisible, you can’t take it round the back and kick the shit out it. It needed to be fought by people who are brighter than me, who fight things in a different way with test tubes and medicines, but I could help, I could let people know about CF so they understood how CF affects people and families, I could teach. When we set off from Land’s End, I was on a mission, I became selfish, determined and downright stubborn, nothing absolutely nothing was going to get in the way, my every waking moment was focused on the task ahead. Elle’s story had given me that focus I needed for the journey ahead.
But, I COULD NOT DO THIS ALONE
I Joined a team Teamwork,
Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishments toward organizational objectives. It is the fuel that allows common people to attain uncommon results….. Oh, My Lord!! What a load of corporate crap… I prefer "None of us is as smart as all of us." Without the team, we would be no where near the massive achievements we are going to revel tonight. In June, Danielle Ellison staff and pupils from Holy Souls Primary ensured I was privileged to be involved with taking 100 school children up Pendle… at one point I looked down and all I could see was yellow, I was astonished by the enthusiasm of the teachers and kids, not only the kids learned a lot that day, I learned how great young kids are. They raised £2600……… That day, will live with, me forever. Bill Reed organised a band night at the club and made sure it was the day I left for Cornwall cheers for that Bill ”!”! loads attended The day after Bills Do, Thomas’s Mum, Louise and her Dad, Nannette, Lou’s family & Friends all went on a sponsored walk to raise funds, this was before we started walking from Land’s End. Sue Simpson a colleague at work started booking camp sites, and maintained and altered as we went along, Sean Haynes my partner in crime at Work soaked up, me not being there for so many days. Malcolm drove us with big impact on him, Sam stepped in and did the same, on paper its just moving vans, cars and motorhomes, but its not its more than that, it’s the impact on your life, To all that turned up and supported Leg 31 so many people. The event was fantastic. I can now confirm this will run again next year, its going to be an annual fund raiser. But we will run it from near home.
To Fantasy Tattoo in Colne who ran the Tattooathon, and Raffle that alone raised £2,887 To Kim Redmayne who organised a raffle and a competition to guess the number of sweets in a jar. That raised over £1100 To the countless others from the running club that selfless acted for the good of LEJOG either by deed or action. To my sister who looked after the dog, cat and house, RENT FREE! Fran and Jonathan from the red pump, for all their efforts and sponsorship. To all the leg sponsors-- (these are all listed on the Menu cards on your tables)-- and all who donated from a penny to hundreds and even £1000’s of pounds To all the people who sent messages of support when it was not going as well as it should do. Denise Park and Tony Hughes who repaired or patched up this knackered body along the way. To all these people and many many more I really can’t mention them all as we will be here all night, I am forever in your debt….As importantly so is every CFER.
I cannot say thank you enough to all the people who have been involved,.. But I know for certain…. I am proud to be part of this team.
But I have 3 special thank you’s not because I want to single them out, but because they put more work in than I expected them to. Ok the first. At first this lady’s teacher side had me on the back foot I watched my P’s and Q’s but I have learnt that a more dedicated fundraiser for CF I have yet to meet. She is a truly wonderful woman. Gail Baily, will you join me here.
Right the next one, what do I say…. he calls me stubborn, I call him relentless, but I also look upon him with vast respect, he takes something shakes the sh%$ out of it then moves on, to the next victim, a true legend but I feel for his wife and this is as much for her as him, but, I am also about to change his life, Garry Wilkinson please join me.
Now I have missed one off and it’s a special one, without this Lady I would dread to think how the walk would have been, …..that video at the base of Ben Nevis was so moving, so honest so well ----- Lamb, I am truly truly blessed, but I also have an apology, Lamb I am sorry, While on the walk I missed your birthday. You all may be thinking well it’s OK you were walking the country….. no no no…I don’t it’s not OK…. I am frightened very frightened, and I will let you know why, Now then the whiter than white, butter would not melt is true….. well almost true.. but let me give you another insight .. …I promised I would not mention the incident she had while sat outside a lovely Villa in Menorca while wearing white shorts….that would never be white again, think about it, yes lamb had an incident, the look on the couples face that were unbeknown to us, sat in the dark enjoying the night stars, sipping wine, some 6 feet away, no I would not mention any of that……… The English playwright William Congreve in 1697 wrote those famous words: “Hell hath no fury like a woman scorned.”
Many many years ago, 21 to be accurate, I had got into some trouble at home nothing daft, I think I had agreed to some credit and bought a new Ducati without asking lamb. At the time I thought nothing of it, just full of testosterone, I am never wrong type bloke we will get the money from somewhere….. Oh how I have learned. Let me pass my learning on to any man here tonight, women always win. A few months after our daughter Emily was born we chatted about, what next.. we don’t want any more children, so do we keep with traditional methods of contraception, like “get off fatty”……… or “I have a headache”………. or “you need a shower”………. or “was that you”? It makes you think about us and them, you know Men and women, it Seems to me the basic conflict between men and women, sexually, is that men are like firemen. To men, sex is an emergency, and no matter what we're doing we can be ready in two minutes. And usually done, Women, on the other hand, are like fire. They're very exciting, but the conditions have to be exactly right for it to occur." Like most couples we chatted in depth, obviously I had no say in the matter, but as I was the male full of testosterone, who thought he knew everything. I just said give me a piece of wood let me bite onto it and sort me out. Let the little fellow keep the gun but let him fire blanks no problem……… job done. But, and it’s a big but! A few days before the procedure I started to worry, questions why? What? How? what if…… I turned to Lamb,
Don’t worry Ram all will be well, remember I have been a staff nurse for 15 years, why don’t you ask me your questions and let me try and explain how they go about it….. Brilliant I thought, so the questions flowed will it hurt? is it best to have a local anesthetic? Or General? How do I prepare? Will it be a male surgeon? When oh when will I be able to go out on the Ducati again I got all the answers and advice I needed I was ready. The day of the operation Got to hospital Filled in all the forms, got shown to a room and given that gown….. the Gown of no dignity, not a problem I am not here for long, but I’m changed and ready for it. After 5 mins a knock at the door, come in, “Hi I’m John the staff nurse is everything ok ? “Yep all good John” “if it’s all right please may I give you a shave you know down there down there?” No need John, I am done! I’m Already for you, my wife is a staff nurse and has advised me. “Ok” he said, with a puzzled look, “if you don’t mind can I just check, Not a problem John. I lifted the gown. He burst out laughing. What the Feck John, no need pal…. is this how you treat every patient, I know I am not well…… to well… you know but you laughing at me will only make me feel worse. He looked troubled. Then he said “I am not laughing at your size, but I must ask? why have you shaved from your nipples to your knees!” My mind sprang back to the advice given by Lamb….Lesson learnt. Again, I forgot lambs birthday here is her present…. Lamb please come here.
No matter, how bad your day is, how crap you feel in your dull job, or if you feel your life is unfulfilled, we as a group must never ever give up this fight, I want CF to stand for CURE FOUND …. but I am also a realist… it won’t be easy, so we, we fight on, we as a group organize events like this, we run, we abseil, we bake, we walk, we swim we do whatever is needed to fight this fight. Somebody sent me this quote on face book. Which touched me, it reads as follows: Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: … It is this, that in all things distinguishes the strong soul from the weak. Steve you are that strong Soul. But I am going to add to that because "Alone we can do so little, together we can do so much." Together and that’s each and every one of us Together we are stronger. Thank you for taking the time to listen to me. ... See MoreSee Less
Samantha Dickinson and Sarah Diffey completed the last 16k of the 50k that they couldn’t finish due to injury on Leg 31....it has been a fab day! Finished off with food and beer at The Red Pump Inn - perfect! Gx ... See MoreSee Less
Blows the dust off the key board. Time has flown by.
It’s some 26 days since we finished, to be honest it seems a life time ago, I still cant get my head round what we have done, people say well done and its fantastic what you have achieved, which is all well and good, but I am struggling to come to terms with the walk and that we have completed it. My left foot is in a bad place and I am off to see some body private to try and move forward with it, but keeping going is so important, if I don’t train I gain. It would be good to have a month or two off, but can’t hey ho. The settlement back in to normal daily life has been, well, easy I thought it would be hard but after sleeping in a box for so many days being back at home is just perfect. Friday the 12th October this Friday sees the end of LEJOG, of all the hard work put in by so many this year.
It’s our end of LEJOG ball 225 tickets sold in days and we could have sold 500, so thank you so much to every one involved in putting together what will be a fantastic party. With silent auctions, raffles, and other fund raising things on the night, it will be wonderful to see so many friends, I have a speech that I have taken a long time in writing I could have covered so many topics but conscious that most, well all will want to get to the bar as quick as possible and not listen to me rattle on, we have a Real Ale bar with beer being sold at £3 a pint with the profit going to the fund, then at the end of the night the final total will be handed to me in an envelope. I will post the speech, when sobered up after Friday. To all the folk who wanted to get to the ball but for whatever reasons can’t be I will raise a glass to you all Friday night, thank you so much for all the support it really has been a fantastic team to be involved in. But one thing remains and it’s a big thing it’s called Cystic Fibrosis, the walk from Lands end to John O’Groats is over but the battle to find a cure is not, so I and others fight on.
Samantha and Sarah will complete their Leg 31 walk on Sunday 14th October - the last 10 miles that they couldn’t do due to injuries 😕 ....the proposed plan is to set off from Bashall Eaves circa 10.30 and finish for a beer at The Red Pump Inn! Will post exact details later this week but just a heads up in case anyone wanted to join us - all welcome Gx ... See MoreSee Less
Painful blisters did not stop grandad Steve’s sheer determination to complete his Lands End to John O’Groat challenge.
Thanks to you, our community, Steve received huge support throughout his trek and helped him finish. Steve’s grandson Thomas has cystic fibrosis and is the inspiration for his incredible journey. Very proud and a big well done from us! ... See MoreSee Less
Wow what a day.... presented at half time at Turf Moor, I was concerned that one man and his dog would acknowledge me....... but not one but two rounds of applause...... such a happy RAM, baby got on the pitch as well and smiled and said hello to Ashley Barnes, who went on in second half and scored twice!!! UTC
"Get back into your little black dress for Christmas Plan" as Stephen calls it.
Off the back of Stephen Taylor's massive Le Jog success we are going to do another Couch-2-5K Plan starting on Monday 8th October with a 10 week plan leading up to the 10th Dec and a final 5K Park Run at Clitheroe on the Sat 15th. You can come and join us at Billington Band Club (BB7 9NW) at 6.45pm on the 2 Mondays leading up to the 8th Oct for a chat and a walk with Stephen to find out all about the 10 week plan. PLEASE SHARE — with Stephen Taylor. ... See MoreSee Less
Leg 60 Watten to John O’Groats 17-5 miles 379 feet. The End & The Power of People.
This journey has been, well unthinkably wonderful, difficult, painful, easy, I feel we have had every emotion under the sun.
Day 3, I had blood running down my ankles from the blisters. The muscle pain that Denise Park sorted was so close to stopping us, the pain in my feet has been the worst thing ever but help from Antony Hughes has kept them going. One thing I can be honest about is at no time over the last what ever number of days, have I ever said I am not doing this anymore. At no point have I ever thought I am giving up; for that I am proud. I am proud of the people I have jumped on and bombarded with facts about CF, I am proud to know so many people who care and I am amazed at the support we have received.
Leg 31 for me was just great. Seeing so many people going in the same direction...not direction as in way to go but oh you know what I mean.
The lady who had so much composure having lost a son to CF and a daughter still living with CF will spring to mind, whenever the word bravery is mentioned.
I have discovered that CF is an invisible illness, but I tell you what the people I have come across who have had dealings with CF have been so dignified, such strength of character, you show them that you are part of the CF family and they stand with you regardless if you have a family member with CF it’s just a glue that binds us.
People running down the road to give us lots of money, stopping on the A9 in the middle of the road to give money, the bloody A9 death trap!!!! some say good luck, some say well done, some say nothing to me, to me they know all about CF.
I can’t say a lot about the walk today or the last Few days I have had my head right down and walked an unthinkable amount of miles but, as painful as it has been at times I thank my lucky stars I don’t have CF.
Last four songs, I have loved the track of the day some of the requests have been fab some well......... the last four are from Gail, Garry me and my son Dominic
Mine I have left my Fav till last, was a very dark time in my family’s life. A lot of bad stuff was going on, lights in cars being smashed on drive bad men talking to you, it was very very dark, I was working away lamb rang with more bad news, I had no answers, I opened the curtains this track came on the radio and it went uphill from there, I learnt no matter how bad it gets keep strong and hold on to the one thing nobody can take off you, ever “hope” Deep yep but that’s just me at times. m.youtube.com/watch?v=0NFV8dHrZYM
So what now? Well I will rest for a week or so, these tired bones need to recoup, then well, I have not run since Boxing Day due to training for this LEJOG type thing. I am desperate to get back on Pendle covered in mud so I am going back to running club and doing a C25k just to get me going again, not bothered if I am doing it by myself just want to be back at the club and run again. So thank you for all the support thank you for being part of this what ever this is.
The title at the top of the page is wrong, it’s not the end it’s the end of a small battle the war continues like I have said all I do is carry the Baton, till such time as I can’t or CF no longer matters. One day CF will stand for CURE FOUND
The End or is it?
Please keep an eye on this for a week or so something else is going to happen that will have some tears and smiles from most.
Don’t forget the 12 October it will be great night and the final total will be revealed it’s going to be a whopper! If you are a Claret keep an eye on the Bournemouth game!
So that’s it for now it’s onwards and downwards to God’s county Lancashire, foot note we have made it to Pitlochry and I am reading some messages it’s been hard to get to phone, now I said I was holding my emotions, I am not now!!! Feck!
Something that has just hit me was a quote I read today "Permanence, perseverance, and persistence in spite of all obstacles, discouragements and impossibilities: It is this, that in all things distinguishes the strong soul from the weak." Thomas Carlyle. You Steve are that strong soul 🙂
Made me cry.... I am just trying to help that’s all, I don’t feel I have done anything, just tried to let people know that Thomas and others just don’t deserve this illness. Others think I have maybe done some good I maybe have to listen to them... just had first pint did not touch the sides.... few more then sleep with no alarm, then Home xx
We have joined a very special club, who’s membership is limited, one of the joining criteria is “doing it for others” we are in it.
A very special dedication today sent in by Steve’s son Dominic.....
Our son Thomas Joesph Taylor was born on Christmas Day 2011 at Burnley general hospital, everyone was happy and all seemed fine until it was noticed Thomas couldn’t keep down his milk or open his bowels. I returned to the hospital on Boxing Day as the proudest dad in the world, on opening the door to the room where Louise (mummy) and Tom we’re supposed to be I was just greeted by Louise who informed me that Thomas had been transferred to intensive care. We were quickly rushed over to Manchester children’s hospital and a couple of major surgeries were under taken. Testing for CF was mentioned after the first surgery, our knowledge on this was very small and looking back I guess we didn’t want to believe it either. We kept our fingers and toes crossed for good results to come back. The next month was spent between ISC (intensive care unit) and HDU (high dependency unit) then back to a ward then back to ISC and HDU and so on and so on it was a rough time, and during this time we made a decision to have Thomas baptised. After three months a sweat test was taken and confirmed that Thomas had Cystic Fibrosis, after four months we left Manchester children’s hospital to all come home together to start our home family life. Thomas has picked up infections and had numerous periods in hospital, he always remains bright and cheerful and has a smile to melt any girls heart. I sometimes think he’s stronger than me - he is our little CF warrior. Thomas is now in Year 2 in primary school and in progressing in leaps and bounds. He has a wonderful caring family all around him who love him dearly. Thomas has become quite a pro on his little motorbike and pushbike and he also has numerous hobbies including swimming, jujitsu and playing out with his friends. We were as a family very naive to CF and it was a complete shock to find out the gene was carried by both sides of the family. Together as one we will fight to kick CF’s ass and give our boy a life beyond his wildest dreams.
My dad has always been an inspiration to me and I guess he is to many more now as well. We are all so proud of you grandad Ram. Love you loads dad.
Sending massive best wishes to you today Steve and knowing thoughts of Thomas will always drive you on xx ... See MoreSee Less
Leg 60....exciting times - Steve’s own business PMP Utilities www.pmp-utilities.co.uk is today’s sponsor and Maria Reed who’s been running the Walking4CF website sent us the company information and a message for Steve .....
Today’s leg is sponsored by Steve’s company, PMP Utilities. Founded in 1983 by Steve’s father, PMP provides bespoke engineering in high risk confined spaces and via rope access to utilities, civil engineering, power generation and process industries. Under the leadership of Steve and his management team, PMP has grown significantly in the last five years but still maintains the family run atmosphere, that helps to make it a great place to work.
In 2015 we moved to new purpose designed headquarters in Burnley. These substantial new facilities highlight our continued commitment to support our clients throughout the utilities, power and processing industries. The new premises house our new engineering workshop, equipped for bespoke milling, turning, welding and fabrication, along with large dedicated and secure internal and external storage. The new headquarters also contain purpose built mobilisation and welfare areas and new office and training facilities. This considerable investment by PMP will provide even greater certainty in our capability and allow us to take advantage of new opportunities for growth within AMP6 and across all industries.
Everyone at PMP is extremely proud of Steve and what he has achieved during this walk to raise funds and awareness for CF. We are looking forward to having him back at work but, hopefully, we won’t need to see his feet! ... See MoreSee Less