Wednesday, 3 September 2014

No. 20 Day 1 - What the hell are we doing!

'Believe you can and you're half way there'

THE DAY BEFORE

Miles by plane - 363
Miles by car - 156
Miles by bike - 0


Today we woke up in Bromsgrove and fell asleep in John O'Groats. We've known about this day for two years so you'd have thought we'd be well prepared for it. For me it felt like a culmination of GCSE results day, the night before getting married and going into labour. You do all the preparation but then it's taken out of your hands and you just have to give in to it and let it happen!
Everything was weird, waking up without cats in the house, taking a plane with no luggage, knowing that we would be cycling in less than 24 hours!
When we arrived at Inverness Mum, Dad and George, who had driven up a couple of days before with all our equipment and bikes, came to meet us all dressed in orange support t-shirts! A complete surprise and it was so great to have lunch and chill for a while before the car journey to John O'Groats. As we were packing the car we discovered we'd forgotten a couple of our water bottles - quick trip to the local bike shop - and we nearly left without our cycling shoes!! All blamed on the nerves! 

Dad driving us from Inverness to John O'Groats

We arrived at John O'Groats hungry and tired but feeling glad that we weren't riding out on the road we'd travelled in on. Some dangerous parts and a section that wouldn't have been out of place in the Tour De France. Oh, to be naive about hills again ;-) Dad, Graeme and I ate dinner and then went to have a drink in the bar before bed. There were over 100 types of whiskey behind that bar and I ordered a coke. Those who know me will understand this is serious stuff! We finally got into bed at 11.30pm after sorting out our kit for the morning and fell asleep marvelling at the fact that it was still light outside. It just doesn't get dark at the top of the country!


DAY 1


We woke up to rain :-) After all our training we wouldn't have expected anything less. Breakfast was difficult because of the nerves but with Graeme needing a daily calorie intake of around 8000kcal and me 6000kcal it was kind of a necessity!


This is it!

Just looking at this photo makes me emotional! It was wet and windy and we both just wanted to start riding. Finally, we were stood at the beginning of our epic journey. I am so ecstatic that we got to do this together. There were a couple of others heading across to have a picture with the signpost. One guy was cycling some of Scotland before heading elsewhere in Europe and we gave him a RearViz which we hope enhanced his journey :-)

The first to receive a RearViz  - thanks to our amazing sponsors!

As we said our goodbyes to Dad the rain got heavier and with huge smiles on our faces we began turning those pedals! All the nerves and anxious feelings of the past few weeks seemed to melt away. This was it. We're doing it. Just me, Graeme and the open road. Let the adventure begin. John O'Groats is a stunning place regardless of the weather. Our route was to take us West towards Tongue dropping down to Altnaharra where we would be staying the night. With 80 miles ahead of us we focused on staying upright on our bikes with the wind coming from all directions. I still don't know how Graeme managed it with all the panniers attached! Progress was fairly slow but the views were truly incredible and our spirits were high. We were in a fairly dreamlike state of mind. There were a lot of 'pinch me' moments for both of us. 


This is what cyclist dreams are made of  :-) Traffic free 

30 miles in, I was starting to get slightly nervous, I knew a few miles ahead was the start of 15 miles worth of categorised climbs/hills (Cat climbs get labelled due to their length and elevation). Graeme gave me a few pep talks and by the time we reached the foot of the first of 4 hills I was on the attack :-) A fellow cyclist headed towards us and told us that the hills we were about to tackle were hard work and ask if we had passed any accommodation as he was calling it a day with the storm heading in. Queue dramatic clap of thunder and the skies that never got dark the night before started to turn black. Its fair to say that we cycled through THE most incredible storm. We saw a group of LEJoGers (our journey the other way) take shelter as we continued to battle uphill with a river running down the roads. There was no way I could've stopped I'd have never got started again! Once the Cat hills were completed at Betty Hill we were in view of the amazing Torrisdale Bay. If only we could have stayed!! Instead we raided the local shop and in a brief break from the rain ate and tried to dry out a bit.

Dumped the bikes to head over to this bridge - any excuse for a break ;-)

The next 25 miles, still soaked through, involved wild pigs (one of my dreams is to have my own forest with roaming pigs) that made me very happy. More rain. Incredible scenery. Beautiful roads. More rain. Midges. And …..  Loch Naver that seemed to never end as we could see our accommodation at the end of it!

A welcome site - now where's the food!!!!!!

Friday, 20 June 2014

No.19 Cycling is more than just the bike.

14 DAYS TO GO!!!!!!!!

Two years ago I thought pushing those pedals round was what I needed to focus on but with the ride now just 14 days away I've learnt a lot and that just isn't the case.

With all the training, amazingly, we do actually manage to squeeze in some quality family time and everywhere we go we like to throw in some yoga moves :-) It's become an essential part of my riding. It's like another form of pain relief for me when the going is getting tough.





Yoga - Anyone, anywhere, anytime :-)

I had a bike fit in May. Just searching for the right person for the job was a task in itself. I needed to find someone who not only understood bikes inside out but who had the ability to understand my physical barriers. Thankfully I found Russell Kingston, a GB Triathlete, who is the founder of The Muscle Clinic He was so amazing, he absolutely took into account my abilities (or lack of them) and the changes that he made to my bike have really had a positive impact on my cycling. I know I must have been a bit of a challenge as a client. Many thanks :-) I would highly recommend him whatever type of cycling you do.

The bikes need TLC too. We support our local bike shop Speeds and they have worked wonders on them. They needed their service in preparation for the big ride and they feel brand new. Apart from new chains and a replacement seat post for Graeme (his is cracked) they are good to go!!! They looked so perfect when we collected them we were a little unsure whether to continue training with them! The first ride out was a dream - so smooth and the whole Speeds Team have been ace - especially with us popping in and out for adjustments, advice etc Thanks! We wish we could take them all with us :-)

Team Speeds and our spanking brilliant bikes :-)


I've had a couple of bad days recently and the negativity really does drain you of your energy. So I'm currently focusing on all the positive things surrounding the ride in order not to get swept up into panic and also not have any room left for negative thoughts!

On the ride :

I get to cycle every day :-)

I get to spend quality time with Graeme :-)

I get to see the greatness of this beautiful island :-)

I get to feel that 'freedom' that only a bike can give me :-)

I get to experience something I never thought possible :-)

……….. Feeling better already!!! Having the right mental attitude for the ride is paramount.

The last few rides have been focused around timing of food and we have pretty much got it down to eating something every hour. Which has avoided bonking (It's a cycling term - nothing rude) as had been happening before. Hoping 'little and often' is going to be the key to keeping us fuelled. Who'd have thought Graeme and I would ever have a problem with food!!!!

This week we had the opportunity to chat to some of the children from the school I work at. Their teacher will be doing some work about the route we are taking in Geography and I couldn't be prouder. They asked fantastic questions and loved looking at all our equipment. Knowing that they will be following us on our journey makes us feel fantastic!

It's been a mish-mash of a blog and after looking at the latest pictures from our rides I had to finish by telling you about a ride at the beginning of June. It was a beautiful day but a few diversions were needed due to the previous days downpours causing floods. One of the highlights was this!




It was fascinating watching the sheepdogs work and as they guided the sheep towards the sheds to be shorn we got to chat with the Farmer who had taken an interest in our outfits and bikes. We were about to set off in the direction we came, as the road ahead was flooded as far as we could see, when the Farmers wife said "No need, I'll get it moving".  She proceeded to wade through the flood and did indeed, with the magic of her wellies, get it moving. We rode away with Graeme talking about how cool it would be to try out farming and me thinking - I don't think I'll ever be as useful as that Farmers wife!

Thanks for reading. Thanks for the support. Thanks for taking an interest. It really does mean a lot. If you feel the urge, at any point, you can DONATE HERE :-)














Sunday, 1 June 2014

No 18. We're all booked!!!!!

So with 32 days to go we have finally booked all our accommodation. Thought we'd share here for future JoGLE/LEJOGers and for those of you are interested in meeting up/cycling with us for a while. Fingers crossed we will only have good things to say about our choices along the way!

Thursday 3rd July - John O'Groats

Seaview, John O’Groats, Caithness, Scotland, KW1 4YR 
01955 611 220

Friday 4th July - Day 1 to Altnaharra

Altnaharra Hotel, Altnaharra, by Lairg, Sutherland, IV27 4UF
01549 411222

Saturday 5th July - Day 2 to Inverness

Jane's Cottage, 7 Fraser St., Inverness, IV2 4SR 
07810 548971

Sunday 6th July - Day 3 to Pitlochry

Torrdarach House, Golf Course Road, Pitlochry, Highland Perthshire, Scotland, PH16 5AU
01796 472 136

Monday 7th July - Day 4 to Edinburgh

The Sun Inn, Lothianbridge, Dalkeith, EH22 4TR
0131 663 2456

Tuesday 8th July - Day 5 to Langholm

The Crown Hotel, High Street, Langholm, Dumfriesshire DG13 0JH
013873 80247

Wednesday 9th July - Day 6 to Kirkby Stephen

Kirkby Stephen Hostel, Market Street, Kirkby Stephen, Cumbria, CA17 4QQ
01768 371 793
07812 558 525

Thursday 10th July - Day 7 to Preston

Preston Central Premier Inn, Fox Street, Preston, PR1 2AB
0871 527 8908

Friday 11th July - Day 8 to Nantwich

The Swan Inn, Wybunbury, CW5 7NA
01270 841 280

Saturday 12th July - Day 9 to Ludlow

Overton Grange Hotel, Old Hereford Road, Ludlow, Shropshire, SY8 4AD
01584 873500

Sunday 13th July - Day 10 to Chepstow

Castle View Hotel, 16 Bridge Street, Chepstow, Gwent, Wales NP16 5EZ
01291 620 349

Monday 14th July - Day 11 to Bridgwater

The Old Vicarage Hotel, 45-51 St. Mary St, Bridgwater TA6 3EQ
01278 458891

Tuesday 15th July - Day 12 to Great Torrington

Windsor House, New Road, Torrington, Devon, EX38 8EJ
01805 623529

Wednesday 16th July - Day 13 to St Columb Major

Outer Retallick B & B, A39, St Columb Major TR9 6DG
01637 880391



Tuesday, 27 May 2014

No. 17 My NF story - all in one place/blog :-)

I HATE HOSPITALS

So, this is the blog I’ve been putting off for a long time. I’ve been told several times to add my ‘story’ so people know exactly why I am doing what I’m doing.
Riding 1000 miles from John O’Groats to Lands End was chosen to push myself beyond my limits. I never thought I would be doing something like this and, together with my Husband Graeme; we have no idea whether or not my body will be able to cope with it. But we will absolutely give our all.

I actually tell the story (or versions of it) quite often. People ask, or I feel I have to explain a situation like my lack of memory! Obviously I get to raise awareness of Necrotising Fasciitis and to be completely honest it is great therapy. However, writing about it has proved difficult. I can’t see the reaction of the reader so can’t tell a ‘lighter’ version if needed and trying to piece together all my second, third and forth-hand ‘memories’ has been a challenge in itself.

I have written down the story before for other fundraising events but always been told it’s too lighthearted. I’m not sure how this one will end up so I apologise in advance if it is upsetting to anyone. To those reading who are already ‘in the know’ I hope it helps you remember that I have good reason to do the crazy things I do! If our fundraising madness helps to stop just one family going through what we have it will have been worth every fallen tear.
You can visit www.nfsuk.org.uk to find out more about Necrotising Fasciitis and the amazing work of The Lee Spark NF Foundation. Here goes...

Before having my son George I was a definite planner. I would probably be able to tell you exactly what I’d be doing months in advance. I loved organizing and I guess I loved being in control. Obviously you can’t plan when you’re going to give birth and I can remember trying hard not to let that stress me out and become a bit more chilled! Oh how things have changed 
J

After 40 hours of labour I was whisked to theatre for a C-section as George was getting stressed and I simply wasn’t progressing any further. I can remember that the epidural didn’t work properly and I could feel them cutting me open on one side. At the time I thought the pain was horrendous and still find it amusing that I demanded to be knocked out when they only had a couple of stitches left to do! Little did I know that compared to the pain of NF, having my stomach cut open without anaesthetic was nothing.

I spent the next few days trying to get on with being a mum showing that I was more than capable so I could get out asap. I hate hospitals and just wanted to be home and start being a proper family. George was an amazing baby – just mesmerizing. I was in awe that someone like me could be partly responsible for making him. In hospital I had a ‘blush’ all over my tummy a bit like heat rash and a small bruise starting to show. I was in pain but having never had an operation, let alone major surgery of a C-section, I had no idea there was an issue. The doctor checked these out and was more than happy to discharge me. Interestingly (to any medics reading) we were also told that they had found Strep B on George but again there was nothing to be concerned about. We eventually found out that the blush and bruise were signs of infection. I was back in hospital 15 hours later.

Proud mummy before NF kicked in.

Graeme, my husband, called the hospital as I had literally burst open. He was given the ‘you’re a new parent, stop worrying, it happens often, your health visitor will be there soon’ speech. When she arrived Graeme was told to get me to hospital straight away don’t bother to wait for an ambulance. I’m guessing she had never seen a C-section like mine before.

I have to tell my story second hand as I have very few memories/flashbacks of the first year after George was born. So you’ll have to bear with me if it’s disjointed. The majority of NF survivors have memory issues. It’s one of the many long lasting affects it leaves. It’s something I struggle with a lot. Over the years Graeme and I have had full on debates over conversations that I genuinely can’t recall. Embarrassment over memory issues in my thirties always brings out severe stubbornness – never good! Sorry Graeme! On with the story…

I was back on the maternity ward and no one had a clue what to do or what was wrong. I was put in a side room whilst my family was desperately trying to find out what was happening to me. I was dying in that room. I am typing with tears in my eyes as I think about what could have been. Miraculously a consultant walking past came in to see if he could help, he took one look at me and had me rushed straight to another hospital and into surgery. I have a vague memory of the trip in the ambulance, a man saying my name over and over and some handles on the roof??? I don’t think I ever answered him.

Graeme had to sign the paperwork to allow surgeons to try and save me but he should prepare for the worst - it was unlikely I’d survive the next couple of hours. I genuinely can’t begin to imagine what he went through becoming a new dad and now a high possibility that he’d be a widower too. My Mum and Dad with their first grandson and now they may lose their daughter. Tough cookies!

Amazingly I made it through that first op. It was the first of many operations to come. The consultant explained to Graeme and my family that I had Necrotising Fasciitis. The disease had taken such a hold I would need several operations to ensure that they removed all the dead fascia and muscle and stopped it spreading further. Night after night Graeme and my Dad would come and see me into theatre and stay until the op was over. Day after day I would be in the care of highly specialized nurses, in a High Dependency Unit. I have a flashback of HDU. I can recall specific noises. Morse code like beeps in slow motion, otherwise the place is quiet. I’m in a paralysed state but my eyes actually open and its then I realize I’m not alone. Other people are in beds too. I can only see one of them but I can tell they are all dying and I am wondering what the hell am I doing in here.

My operations involved removing dead flesh and saving my vital organs. My torso was left open in between my operations. The surgeons have to be completely satisfied that they have removed every bit of the Necrotising Fasciitis before they start the process of closing the wound created. NF can destroy muscle, bone and create a need for amputation. I am extremely grateful that amputation wasn’t an issue and that they managed to save my bowel and bladder which were the organs giving them the most concern. I wasn’t so lucky with my abdominal muscles but you can’t win ‘em all! I can actually recall ‘seeing’ myself being operated on and how the theatre was laid out and where people stood – the mind is a weird and powerful thing. NF causes excruciating pain, confusion, high fever, dangerously low blood pressure, severe dehydration and can cause the rest of the body’s organs to go into shock resulting in respiratory, heart and renal failure. Basically every system of the body can fail. Bearing this in mind I did ok!

Through the surgeries there were times when I needed transfusions. Additional worry for my family as the hospital tried to ensure they had enough blood for me. Low blood supply was certainly never something I thought of before being ill. Donating is one of the few things that I wish I had done in my life. The thought of someone dying because of a lack of blood donations is heart breaking. Luckily, I know some lovely people who give blood on my behalf and I am extremely grateful to them.

After one of my surgeries is when I have another flashback. According to my Dad’s diary, family got told I’d be moved to a private room (no more HDU) after the surgery. I remember waking up in a white walled room on a trolley and complete silence. This wasn’t HDU? I was screaming for someone to come to me over and over and over but no one came. I remember thinking shit I’ve died. I’ve bloody died and I’m stuck on a hospital trolley. I’ve seen photos that show my private room and it’s not the one from my flashback. Weird mind. It gets weirder.

In the precious first few days of George’s life I had breastfed. It wasn’t something that I had set my heart on. But he knew exactly what to do which certainly made things easy for me. Anyway, I must have enjoyed it as when I was out of HDU, still with more surgeries to go, I asked to express my milk. Even though we’d initially been told I would be in hospital for a very long time, I had this mad idea that I would express so that when I got home to George I would still be able to breast feed him!!! Bloody idiot! Feel I should say at this point that I was on self-administered Morphine amongst other things to deal with my pain. I wasn’t my normal self for a long time.

The photo I bonded with.

A powerful breast pump found its way to my room and every day I would look at the picture of George I had at the side of my bed and express. Due to all the drugs I was on, my milk was no use to George and it would be thrown away. Upsetting but it must have given me focus and time to bond with George albeit a picture of him. Someone once (very helpfully!) told me that because I hadn’t been around for him as a baby, I would never bond with George. Maybe this is what helped?
Another memory was a nurse who would visit to help me when I wanted to express my milk. She would tell me that even though she had never had her own child she had the ability to produce milk. She would often go to the babies whose mothers had died or couldn’t be with them to feed. I remember her clearly she is like a character from a horror film to me. She was so sweet outwardly but I was convinced she would take my son away from me and be a better mummy to him than I could ever be. Graeme insists there was never a nurse like this. I know logically that she must be a hallucination caused by the amount of morphine and anaesthetics in my body. But there is still that part of my brain that thinks she could be real though! Told you it got weirder!

Once the surgical team was happy that they had removed all signs of NF it was time to think about how to close me up. As most of my lower torso was missing it was decided that I would return to surgery to be fitted with VacPac Therapy. An amazing piece of kit that would promote wound healing through granulation tissue formation. If it worked (the doctors were very skeptical) in 6 months I would no longer have a huge cavity in the middle of my body!
To explain VacPac to you makes it sound like something off Blue Peter. First the cavity would be filled with Black foam then sticky backed plastic was placed over the top and a tube attached to a pump would be placed in the centre. This pump would be turned on and the whole area would be suctioned. The science behind it is truly amazing. Put simply it would use negative pressure to stretch cells, promote new tissue formulation and best of all remove anything infectious for advanced wound healing. The VacPac Therapy unit was huge and whilst I was attached to this there was no way I’d be going home.


A representative, from the company supplying the VacPac, pushed hard for me to be connected to a ‘portable’ version in order to allow me to be home. There were times when we thought it would never happen. I was going to be a huge expense and there was a battle over who would pay for it. I just couldn’t believe I was going to be home. It was going to be so hard, a massive responsibility for my family; I needed such a lot of care. The cost battle carried on for a few weeks after I was home before amazingly the hospital picked up the bill. I became obsessed with learning to walk again once the VacPac was in place. I pushed all my pain barriers to their limits in the time it took to organize all the resources to be put in place for me to be home. Nurses would find me collapsed around my room as I obviously thought I was way to young for my Zimmer frame ;-)

SURVIVED ANOTHER DAY

Returning home was difficult. I was a burden on everyone. I just wanted to be able to look after my son by myself. I was angry, frustration and sheer pain took a massive toll and I hated what I had become. People had to deal with a lot. I was grieving over the mummy I was never going to be. The house was always filled with someone. My mum was my main carer to allow Graeme to return to work. District nurses were in and out, medical supplies were being delivered, District nurses from different teams around the country would visit so that they could learn first hand how to apply the VacPac Therapy and the pain never got any easier. Even the health visitor continued to make visits I guess she wanted to see that George was cared for amongst the madness! There was a routine and I was so much happier to be home but it highlighted to everyone just how different life was now.

At one point I had to go to A&E because my VacPac had stopped working. I was left all night with no one telling me what was going to happen. This is one of my worst flashbacks. I appreciate it must be hard to understand and its certainly difficult to explain. I think the word I need is dread? My other flashbacks are quite dreamy but this is stark and very real. Maybe it is a real, true memory? I am alone on a ward the likelihood of which is minimal. There is a deathly silence and no one is available to talk. I am waiting and waiting and waiting. George and my family are in my thoughts and I feel completely and utterly helpless. I’m in fear that the NF is going to creep back and here is where I’ll die, with no one at my side. All because there was no access to the medical supplies I needed. Indeed even with access no one there knew what to do with it! Thankfully, I survived another day! Dramatic I know! The Medical Rep for the VacPac Company had to travel from Leicester in order for the dressings to be changed. The system was apparently so new training for its use; settings etc. had not yet started.

I enjoyed opportunities to be out of the house. It took a lot of organization but it was so worth it. There was a hint of normality in going to have a slice of cake or buying nappies. I may not have been the independent mummy enjoying swimming sessions and baby music groups but to see that life continued outside of my four walls was great and being on my mobility scooter proved a highlight too. I certainly hadn’t lost my need for excitement and if breaking the ‘speed limit’ in a shopping centre was the only place to get my thrills then I was going to do it :-)

Jealous? Thought so!

Obviously I was never alone. Mum was with me on one occasion when George needed a bottle. We found a place to have some lunch and I shifted myself into a chair, leaving my VacPac and tubes resting over my mobility scooter, whilst mum sorted George’s bottle. The women on the table next to us decided that now would be the right time to have a conversation about how awful it was to bottle feed a baby. People have no idea!

Love this pic! In my Morphine world. My nurse had even tried to wash my hair in my bed for a rare visit from George. Doctors were obsessed with infection for some reason ;-) Anyway, BOTTLE FEEDING MY SON! Even looks like I'm holding him :-)

Back home the district nurses were great. They were obviously interested to be dealing with my case and to learn new skills. But they were also completely matter of fact towards me. I never felt like a freak around them. I flatly refused to look at my body when the VacPac wasn’t attached. A photo would be taken, as I could disassociate myself from it, and I would marvel as day by day this huge cavity in my body became smaller and smaller and smaller. I was on a lot of painkillers but when dressings were changed, I was given more morphine to try and help deal with the extra pain it caused. My mum, Graeme and anyone involved at these times will be able to tell you that a bucket load of painkillers and Morphine are no match for a dressing change. Imagine a huge plaster being stuck over your torso with superglue and being ripped off. Then the black foam that is packed inside the cavity gets removed whilst trying not to rip out any new growth that has been made. Grit and determination got me through, and of course wanting to prove the docs wrong again. 2 hours to live? Wrong! Hospitalized for 12 months? Wrong! Walking? Wrong! Never closing a cavity that size with VacPac Therapy? Wrong!

I was so proud that I closed on the VacPac but coming off it was actually quite scary. I was so used to the sound of my machine, gunk flowing through my tubes and seeing my container fill more and more slowly. It was a bit like a security blanket. What would happen without it? Would I suddenly become the person I was before? What would life be like? Would I finally be able to shower without being wrapped in cling film first?

I do know from pictures that Christmas 2005 was finally celebrated. Our first family holiday was had in Scotland and I was able to look after George for short periods of time by myself. Even a house move was organized to be closer to mum and dad to make caring for George and me easier. Good job I like the house because I don’t remember choosing it!

These better days weren’t to last though. I was told I needed more surgery. I cried for days. I have no idea where my family found the strength to carry on through this horrendous time. It must have been the biggest slap in the face to them. Here I was, this huge burden for the past year, and now I was going to go and die and leave them to deal with the aftermath! I was ruining every thing for every one. I absolutely believed I was going to die. Part of me is ashamed of my defeatist attitude. But I had contracted NF during my C-section surgery and as far as I was concerned having to have more surgery was like being given the death penalty.

Before the surgery I wrote letters to George and my family to have once I’d gone and even organized my funeral. I still e-mail George now so if anything ever happened to me he’d know what his mummy was like. I even had a ‘Just in case I die’ get together.  Surgery was scheduled for the New Year. Christmas had already been spoilt for everyone the previous year. I wanted to ensure that I would be included in at least one lot of happy Christmas photos for George to look back on.

When the day came I was absolutely petrified. I had no abdominal muscles and I would need this surgery for them to insert a mesh that would keep my vital internal organs in place. I refused to be wheeled down to theatre, as I wanted to walk. Stubborn to the end ;-) Looking back I should have been more demanding. I reckon I’d have gotten away with a lot!



Obviously, the surgery was successful although there was an issue with antibiotics. I’m allergic to antibiotics. I know – not very helpful is it? Anyway, microbiologists found something to pump through me whilst I was battling NF. It was logical to use the same now but it seemed my body had other ideas. Graeme was relieved to have seen me out of surgery and awake. He had gone home to see George and change before returning only to find me non- responsive. Seriously!?! I got through NF, a zillion surgeries and now antibiotics were going to be my downfall! Not bloody likely! Once home recovery was frustrating and my life was a haze of pain and drugs. I just wanted to live a normal life but this was far from normal.

LIVING WITH BEING ALIVE

So what was life like once I had healed? Was everything a bed of roses? Did we look back and laugh at how I had stared death in the face? Did I embrace life like never before? Sadly not. Life was hard. Necrotising Fasciitis is its own hell but living with being alive has been quite another. For me personally, I suddenly had to deal with body image issues. The last time I had any body issue was at school – I was the last one in my year to have anything to put in a bra! Due to the NF and surgeries I now have a step in my body. I began hiding my body from my husband. I refused to believe he could ever love me looking this way. Once I spent a whole weekend abroad with a huge group of people I knew. I was drunk most of the time (more of this later), in tears privately with Graeme, at the thought of being in a swimsuit! Graeme has had to deal with my latest battle of wearing lycra for my training which obviously shows everything I have and haven’t got!

Both of us have had to get used to the fact George will be an only child. I made no secret that I absolutely loved being pregnant. The pain of not giving Graeme a daughter, of not allowing George a brother or sister, of never being pregnant again, has at times been unbearable.
I was full of resentment, even (shamefully) hatred for anyone who was living life as I wanted. A lot of this was directly linked to living in pain. Being in pain makes you a moody, unhappy, horrible person to be around. I was on an awful lot of painkillers to get me through my day and I got to the stage where my life was so far from reality I scared myself. I was at my lowest low, with no control over my life and genuinely believed that everyone’s lives would be far better if I had died. There was more than one occasion that Graeme found me collapsed in a heap contemplating not being around anymore.

Eventually I hit rock bottom and I absolutely had to take control if I ever wanted to get back on track. I truly believed that coming off the drugs was the best thing for me to do so I started to wean myself off them. It took a while and I was in even more pain but I began to see things a little more clearly – for a while.
I was officially discharged in March 2008. Plastic surgeons still wanted to get their hands on me but I absolutely can’t put family or myself through any unnecessary surgery. It’s always in the back of my mind that this mesh insertion from my last surgery might not last forever. That is scary enough! I was still on painkillers but an amount that I was happy with preferring to be in pain and functioning than an outright Zombie like before. I would tell Graeme “I’m better now” then a week later “I thought I was better, but now I really am better”. This went on and on just like the pain.
Taking a break from the pain came in the form of drink fuelled nights out. The alcohol numbed the pain, and weekend drinking soon turned into every night drinking, and 1 bottle of wine a night drinking turned into 2 bottles a night drinking. I was making trips to the recycling centre so no one could see how bad the situation was and knew all along the self-medicating would have to stop at some point. It came when I realized there might come a time when I wanted to drink when I woke up.
Yet again it was time to battle and thankfully I sorted myself out.

It’s amazing what you can do when you’re a mum. George helps to put everything into perspective. That stubbornness of mine really helps too. I still drink on nights out. I want to wear heels, dance, be a little crazy and there is no way I could without alcohol or painkillers. Loads of day-to-day things test my pain threshold. Washing/drying my hair, driving a car, crossing my legs, walking up and down stairs, sitting down, standing up, pulling on boots, opening jars, getting out of bed, the list is endless. I have changed how I do a lot of things it’s like my centre of gravity has shifted. I certainly never realized how much you used stomach muscles for! I have good days and bad days but I hope I have learnt to cope with my daily pain in a far better way now. To be honest, I’m not entirely sure I can remember ‘normal’ life before NF. What it was like to have feeling across my stomach, or having a proper belly button in the right place or not having a step cut out of me. Maybe its good that I don’t? Maybe my brain is doing me more favours than I know?

So what of life now? I am a little crazy. I come up with crazy ideas and my poor family doesn’t really have a choice but to support me. I absolutely refuse to let NF win. My pain is a constant reminder but NF has bought many positives. I survived. I would never be doing these crazy things if it wasn’t for NF and I wouldn’t see life how I see it now. I take every day as it comes. Not only because my memory is so bad but because tomorrow may never come. Death scares me, but not living the life I have left scares me more.

Pushing my limits :-)

If you'd like to make a donation to The Lee Spark NF Foundation just follow the link to our fundraising page Virgin Money Giving Page



Thanks for reading xxx

Sunday, 11 May 2014

No.16 Our training weekend A.K.A The learning curve

Our May bank holiday weekend usually consists of too much food, too much booze, hope of sunshine with a downpour of rain probably a bit of camping and a BBQ if we're lucky. This year things were very very different!
With panniers packed for our 3 days of cycling we set off from Bromsgrove at 6am with our goal to reach Birmingham New Street Station for the 07.22 train. The adventure had begun! It was very pleasant cycling on such quiet roads with most of the population sleeping off their hangovers. A bit of a shock to realise that the Bristol Road has a couple of rises on it - when did that happen??? 13.1 miles later we arrived, in time, to board our train to Peterborough and realising that maybe having 4 weeks off the bike (holiday and other lame excuses) hadn't been such a good idea.
The train journey was great as we got chatting to a man who had decided to spend the next 3 months cycling to Istanbul with a few stop offs to see friends along the way :-) He had done a lot of cycling in his lifetime. As far as I could see he must have been experienced to fit his 3 months worth of gear into just 4 panniers fixed to his bike!

Train time 

Arriving in Peterborough we headed towards Kings Lynn testing out Graeme's new gadget - a Garmin 810 (Sat Nav for a bike) that has been on his wish list for a while. We had no set route mapped out - just a few places that we wanted to take in over the weekend. We just knew that for our first day our destination of Thursford was 70 miles away. Meaning we should top 80 miles for the day. Kings Lynn had been tapped into the Garmin, thinking it would be a decent food stop, and off we went.

There were some beautiful sights along they way which we would have been able to show you if I had remembered to press record on my new gadget - a GoPro (cool, tiny camera) that I bought to capture our JoGLE journey. It's fair to say that Technology wasn't our friend over the weekend but the weather was and you can't have everything!

We felt like we were heading in the wrong direction so stopped to check out maps on our phones which agreed that whatever the Garmin was telling us we needed to turn round and go back on ourselves. 10 or so miles later the Garmin had directed us to a dead end on a housing estate! Neither of us were impressed as this was adding to our wait for lunch! Thankfully someone had the foresight to put a fish and chip shop in the middle of nowhere and open it at 11am :-) A tray of chips and all was right in the world again. We are also proud to say that every customer they have this week possibly month will be told about our story. Raising awareness is what its all about and our orange and green polka dots are helping us along :-)

A few more miles and we reached our lunch destination where a couple named Tony and Jenny kindly pointed out a place to eat and unbeknown to us would play a further part in our weekend. Lunch gave us a chance to charge equipment, re-fill water bottles - and take stock of the morning's ride, with 58.3 miles under our belts we had learnt 2 major lessons. First, always understand and know your technology before setting out on rides and second there are no set meal times when cycling.

From Kings Lynn to Thursford it's all a bit hazy. Apart from a random sighting of several full-size crucifix we remember miles and miles of seeing no-one. No cars, people or cyclists - which was very strange but a feeling we know we shall have again through the first couple of days in Scotland on our JoGLE. We eventually came across an older gent on a recumbent trike who tried to tell us that Norfolk was far from flat. Our Strava mapping for the day would say otherwise - most of it looks like it was drawn with a ruler! Anyway, he assured us we were 'probably' going the right way, to get to The Old Forge Seafood Restaurant our accommodation for the evening so, feeling weary, we carried on with food and meeting up with friends in our thoughts.

Always time for some yoga

After the Garmin running us in circles again and after 92.3 miles we reached The Old Forge and we couldn't of been happier :-) We were greeted by Colin who had a safe place for the bikes and assured us he'd be feeding us well - music to our ears. He and his wife Sarah were fantastic hosts. As we caught up with our friends Aron and Rachel we ate very well indeed. Friends, laughter, food and a couple of drinks helped us forget our weary bodies and we fell to sleep, in a very comfortable bed, exhausted, proud and slightly concerned with how our bodies would hold up the following morning.

We woke from a great night's sleep still feeling saddlesore and neither of us were looking forward to sitting on our bikes after breakfast. My knees had also started to hurt which have never caused an issue before but a change of shoes (as my others cause numb feet on longer rides) ahead of the weekend was more than likely the issue. We ate like kings and Colin sent us off with good luck for our journey and challenge and we experienced a new kind of pain. With both of us wishing yet again that we hadn't had so long off the bikes, it took a while to get used to the saddles with our sores. We were stopping and starting several times due to my knees. Adjusting shoes to try and ease the pain. I taped my right knee at one of the stops to keep me going (though it turns out I've torn a muscle in the left!).

Breakfast of Kings

Flatter terrain had been chosen on purpose for the weekend to focus our efforts on time in the saddle rather than hill training but riding relatively flat was hard. Your body position doesn't change as often so you find yourself forcing a new position when your hands/shoulders/neck/back start to ache. you're using the same muscle groups continually and with fewer hills there are fewer downhill which means you are constantly pedalling - not great when your knees are suffering :-(

We headed towards Cromer for the first leg of Day 2 stopping off for ice-cream. Then took the coastal road all the way to Wells-Next-The-Sea. It was far more enjoyable than the previous day. At times we managed to take in a few downhills :-) There were even other cyclists around - although most of them seemed to be enjoying the many cafe/cake/pub stops along the way :-) We had been told about where to get the best fish and chips in Wells, by a lovely lady, at lunch in Kings Lynn. She was next to her mobility scooter and she liked our bright Wheelchair to Saddle jerseys. She told us all about how she was a dancer in her younger days and how vital her scooter is to her to keep her independence. She thought what we were doing was great and she sat there taking in the views with a glass of wine, her memories and her independence :-)
Ice-cream to take our mind off the pain!

Fish, Chips and Mushy Peas! It's fair to say that we weren't eating as well as we should for cycling which is another lesson learnt but when someone recommends a place you have to try don't you? We continued on through some beautiful villages and admiring many of the converted windmills around. Even though the knees were hurting, the scenery, weather and joy of knowing there were only 20 miles between us and our bed for the night, at The Dabbling Duck, kept smiles on our faces. At 62 miles we were greeted with two pints of cider on the house and we knew straight away that we had chosen well. Our evening meal was quite simply some of the best food we have ever tasted. We were exhausted, and on our way to bed, got questioned about our cycling by a lovely couple dining there, and yet again, we had a chance to spread the word about NF and the great work of The Lee Spark NF Foundation.

My asparagus and pheasant egg - I dream of this dish!

We were up early in the morning. So got dressed and went out to the garden to enjoy the early morning sun before breakfast was ready. We met a group of ladies, on a walking weekend, at breakfast who very kindly said they would donate to our cause - Thank you Ann and Caroline :-) We struggled with breakfast that morning. A lovely full english before us but eating was just difficult. We knew we had to get some fuel inside us so homemade preserve and toast was just the job. Really wish I could've managed the Full English though - maybe next time :-)





We set off through the duck ponds and with 53 miles between us and Peterborough Station, and a time constraint to get there on time, we eventually made the choice to take in some faster roads. Flat, straight and monotonous we are glad that our JoGLE, although 200 miles longer than the shortest route, will be taking in less of these busy A roads. Before this though, we were flagged down by Tony and Jenny the couple that we met in Kings Lynn. They had seen us a couple of times over the weekend whilst we were on our bikes and they hadn't been able to get us off their minds. They had stopped us to make a donation - thank you both. We left them with a smile on our faces and tears rolling down our cheeks. Raising funds and awareness is a very real part of this challenge and, for me personally, even if I manage to complete the JoGLE, this is what I will be most proud of.

Exhausted, looking rough but still smiling!

Arriving at the station it was obvious we were exhausted and still hungry even with the stop we made for Jellybabies :-) We spent the journey to Birmingham discussing all the things we need to put in place ready for the 'real thing' starting July 4th. BEGGING ALERT! BEGGING ALERT! One of the things we feel would benefit us is massage so if you know people that would be willing to give up their time in any of the areas we are ending our days please please spread the word.

We would love to see as many people as possible along the way. The routes are all on the blog to access. If you fancy joining us even to cycle for just a mile or two please please do join us. Your support is what gives us the boost we need to get through the pain ahead :-) Finally, we met a man called Nick who after deciding he wasn't happy with how his life was going, took up cycling. He is trying to fit in 3500 miles this year. He also made a donation - thank you and yet again we learnt that everyone has a story to tell :-)

Sorry its a long one! But its been a while. If you fancy donating you can do so here.
Virgin Money Giving
If you want to wave, cheer, massage us along the way these are the stops.

July 3rd - John o'Groats
July 4th - Altnaharra
July 5th - Inverness
July 6th - Pitlochry
July 7th - Edinburgh
July 8th - Langholm
July 9th - Kirkby Stephen
July 10th - Preston
July 11th - Nantwich
July 12th - Ludlow
July 13th - Chepstow
July 14th - Bridgwater
July 15th - Great Torrington
July 16th - St Columb Major
July 17th - Lands End

Also, we have only booked accommodation up to Kirkby Stephen so if you have any recommendations   of good B&B's/ Pubs let us know.

Thanks for reading :-)








Saturday, 29 March 2014

No.15 The hills are alive with the sound of ………….

Gentle, rolling, steep, craggy, sweeping, long, short, twisty, undulating. There are many words to describe a hill. Indeed life before cycling conjured up a very specific vision of what a hill should look like. It's quite clear now that I was way off the mark. A hill is quite simply anything that isn't perfectly flat. At the moment training is all about the hills. I never thought I'd say this but we are actively seeking them out. It's clear to see that Graeme is a happy man enjoying the challenge of getting us both to the top. Previously I had been known to choose 'next left' on seeing that the route looked a harder option to the 'right'. Now I see impossible before me and I head straight for it.

"Breathe in through the nose, don't let the gear get on top of you, strong legs Jane, breathe through the pain, slow the breath, you're annihilating this hill, you look so strong, that's it - smooth legs, focused head and breathing will get you to the top." I'm not sure how Graeme does it? Cycling, hills, breathing and talking? But it's great that he does. It would be so easy for me to give up, especially when my pain barrier is being broken but he keeps me focused, and eventually, we get to the top of the hill, switch up the gears and the speed and hunt down the next one.

Last week we went to tackle a nearby hill. Fairly short but the road gradient is 16%. It's the steepest hill I've tackled in a long time and my fear of having to unclip from the pedals if I can't make it was growing. To be fair I think that fear helped get me to the top! I had been in bed ill for 48 hours in the week leading up to it so it was pretty emotional achievement for us both. A mixture of exhaustion, pain and elation. It gave me a real boost. On the the actual ride there will be all sorts of hills to deal with. Day 11 gives us a categorised hill nearly 11 miles long. I can't even imagine what that will be like. All I need to remember is if all else fails I'll have to walk!

Some hills just can't be ridden!

As sponsored RearViz riders we always ride safe with our RearViz in place (a rear vision mirror mounted on the arm) and the view today was a little different from the usual traffic. I saw the peleton in my RearViz way before I heard their calls to let us know they were approaching and I already had myself braced. I have experienced a peleton before, on our cycle to Oxford last July, and its fair to say that I still find it one of the scariest things ever! In fact I've added it to my list - spiders, clowns and now peletons. This one was quite special though as there, right in the middle, was Olympic Track cyclist Jess Varnish. I was scared stiff with the number of riders, but for literally a millisecond I was cycling next to a world record holder! We managed to keep the group in our sights for just over a mile. It really is spectacular to see.

Fancy your own RearViz?

 Quote #BIKE2014 at http://www.rearviz.com and they'll make a donation to 
The Lee Spark NF Foundation :-)


So what's next? Tomorrow will be more hills. We actually had a route planned for last Sunday but the weather and my lack of energy from being poorly made us postpone it. Hopefully we will wake bright- eyed and bushy tailed to a dry day!



Click the link to follow me on Twitter  https://twitter.com/velvetcherries
Click the link to follow Graeme on Twitter https://twitter.com/Gingerlogic2012
Click to the link to donate  virginmoneygiving.com/survivor

Thanks so much for reading. Your comments and support really are appreciated :-)

Friday, 7 March 2014

No. 14 I don't know where to start!

So much has happened since I wrote my Necrotising Fasciitis story over the last 3 blogs I hardly know where to start. I’ll ramble and see where it goes. Firstly Christmas is always a tough one I normally struggle hugely and try to keep super busy usually outpouring my emotions in a drunken speech around New Year. This year it didn’t happen. Nothing. No tears. No breakdown. No anger. I waited for them to come but they just didn’t. I genuinely think the blog has been more powerful than I could ever imagine. I may have written the story but I haven't actually haven't read it and I'm not sure when I will or if I even need to. People's reactions to it have been amazing and I feel a little lighter :-)

So, of course, a fair bit of cycling has been completed, weather has been shocking so we've been thankful for the rollers and Sports Performance Yoga has been keeping me on track and mixing the training up a bit. But it's becoming clear that this blog has to be about people. I am seriously amazed by their loveliness. People share my blog , our fundraising page, help to raise awareness of mine and Graeme's challenge, give us support with products, time, advice, want to join us for stints of the journey, want to welcome us at the the end or meet us as we travel. As well as all that, incredibly people, friends and strangers, actually part with their hard earned cash to make a difference. We are staggered. We thank you all.

The route has now been finalised which hopefully you can now see in detail on the blog. We are soon to be receiving our cycling jerseys made lovingly by spiritcycling.com which www.nfsuk.org.uk have very kindly sponsored us for. Thank you.

We are officially sponsored by the amazing company Australian company www.rearviz.com who have provided us with their incredible RearViz product and will also be donating to The Lee Spark NF Foundation with every purchase of their product using the code #BIKE2014 It is the best product we have for our bikes and has made cycling even more enjoyable. We are ecstatic to be involved with such an incredible company with a fantastic product and ethos, with special thanks to Mitch Cripps. Thank you.

The lovely www.auracyclesystems.co.uk kindly donated one of their Aura belts to keep me safe during night cycle training. I love it. Thank you.

womenscyclinguk.co.uk chose to feature me in their magazine thanks to the fantastic Editor Lara Dunn getting in touch through Twitter. Thank you.

Unbelievably after a meeting at the London Bike Show with Kirsty Ho Fat from totalwomenscycling.com I have been named as one of twelve inspirational women in cycling to celebrate International Womens Day which you can read here cyclings-most-inspirational-women and right now I couldn't be happier!! Thank you.

There is a long way to go and a huge amount to do. Accommodation still needs to be arranged for two-thirds of the ride. We need technology to guide us and record us, we need to get bike fits and include turbo sessions in our training. We had wanted to hire a Watt bike but they have stopped doing this so we need to find some close to us in Bromsgrove. The list is literally endless, but we will get there. Not just because we have to, but because we are surrounded by people like you. Thank you.

You can send support, advice or just be plain nosy by following my Twitter twitter.com/velvetcherries

Or donate at virginmoneygiving.com/survivor

Thanks for reading :-)