Walk Two

29.02.20 Cuckoo Trail, East Sussex

I was keen to get two walks completed in February, just to get used to the walk, recover, repeat, cycle as quickly as possible. Lucky for me that it is a Leap Year giving me an extra day to schedule the walk and that Storm Jorge kept away for the large part of our walk.

The Cuckoo Trail in East Sussex is a 14 mile disused railway line from Heathfield down to Eastbourne on the coast. Given the recent weather, this tarmac trail promised dry conditions underfoot, so we walked 10 miles down the trail and back to complete the 20 miles.

My lovely friend Tracey volunteered to join me this time, along with my husband Neil (and our Springer Spaniel Ruby) and as we left home to drive to the start of the trail, the weather was doing its best to deter us. The forecast was for cold winds, sunshine and heavy showers – possibly hail at times.

Learning from Walk One, all the waterproofs came out this time – along with extra thermal layers to protect against the cold wind. The usual rucksack faffing took place with extra towels, layers , energy bars along with a whole array of glasses for eye protection for me.

I was wearing 5 layers when we set off – I was fully waterproof – I was prepared for anything 🙂

We arrived at the start of the route around 9.45 and were buoyed by the fact that a group of walkers were setting off ahead of us. It reassured us that we weren’t the only ones heading out for a long walk in the unpredictable weather.

Start of the Cuckoo Trail – blending in with the regular ramblers.

We set the usual walking apps and headed off along the trail, quickly overtaking the ramblers so we could settle in to our own pace. The rain eased off and we were soon surrounded by the first signs of spring; primroses and the early shoots of wild garlic along the banks of the streams that we passed.

The trail has lots of references to its railway history including benches made from sleepers and train wheels. With 20 miles to cover, as tempting as they were, we paused only for photos..

Cuckoo Trail bench.

Just a mile and a half into the walk , I realised that my phone app had closed again and my watch app had paused when I put my gloves on. Luckily Neil’s app was working fine so that became the measure for this walk – with the milestone markers on the route providing a crosscheck. My mission now is to sort these apps out before my next walk.

The weather continued to improve and the sun appeared. By now my 5 layers were proving to be about 3 too many, but we decided to push on and leave the extra faffing of removing layers until later.

Walking on towards Polegate.

The trail crosses several busy roads, but most of these have underpasses or tunnels so that you don’t interrupt the flow of this trail. Its a really thoughtful feature and also allowed for another tunnel photo..

Cuckoo Trail Tunnels

We eventually emerged into a car park at Hailsham and it took us a few minutes to get our bearings and pick the trail up again heading out through a small housing estate back onto the old railway line. We reached the halfway marker 2 miles along and by now we were quietly confident that the forecasted hail in Hailsham was no longer a threat.

Halfway marker, me, Tracey & Ruby.

We walked back towards Hailsham and headed into The Grenadier for a quick coffee, comfort stop and,most importantly, the removal of layers.

We headed back out to the trail and were now keeping an eye out for my friend Sharon who was tracking me on her phone to catch us on the trail and walk the last leg of the route with us back to Heathfield. It was still breezy but we were refreshed from our pitstop and I felt much lighter without the layers of waterproofs.

A few miles on from Hailsham and we met Sharon & her hubbie Bruno just before the old Hellingly station. Bruno walked with us a short way before heading back to his car and Sharon stayed with us for the final 6 miles. Her fresh legs in the group bringing us a welcomed lift.

Meeting the Bohanes

The trail was now much busier than it had been earlier in the day and we seemed to be going against the flow of ‘traffic’. The reason for this was about to become clear!

Whilst we had missed the bad weather, it had rained heavily after we passed through Hellingly on our way down the trail. When we had first walked through Hellingly there was a small ford in the lane from the high river, just down from where we crossed the lane on the trail. When we arrived back at this crossing point, we were faced with a fully flooded road blocking our way across. This was our only way back to the car but it was knee deep in the middle and fast flowing. Maybe I should have kept those waterproofs on after all..

Flood blocking the trail at Hellingly

This called for some team thinking – other walkers were turning round and heading back but that wasn’t an option for us as we wanted to complete the walk in full and get back to the car. We decided that if we couldn’t go over, or through it, then we had to find a way round it. The problem was that whilst we could get to the otherside of the road, we needed to navigate very small muddy banks and cross a fast flowing wide stream to get back on the trail.

Team planning..

Sharon with the freshest legs went first, and we followed her route. It was incredibly slippy on the banks but we made it round and faced the reality that we were now equally as stuck but just on the other side. The stream was too big to jump across with no real room for a ‘landing’ area. Surely we could construct a bridge of sorts.. take a look at this video clip to see the fabulous Sharon’s bridge .

OK,OK, so its just a branch but it got all 4 of us across!


Spurred on by our triumph, we headed along the final stretch with a can do attitude and a little extra adrenaline. We could tell we were nearing Heathfield as the path was filling up with dog walkers and young families catching the late afternoon sunshine.

River crossing – nailed ..

The last mile always seems the longest in any walk – you can sense you are near the end and yet it seems to take much longer to get those steps moving you closer. Except for Neil .. our walk photographer and distance monitor. He just breezes along without any hint of tiredness , maybe its because he doesn’t waste extra energy chatting the miles away!

Walk Two Done : The 20 mile crew (L-R) Jane,Ruby,Neil & Tracey

Last few words for this walk. 29th February coincidentally was rare disease day and as you know I am undertaking this challenge in aid of The Macular Society who supports research into rare eye conditions including Macular Dystrophies like mine. If you’d like to help you can make a small donation through my link here:


Now time to get ready for Walk 3 next Sunday 8th March – this one will be rather special as I am taking part in the Moorfields Hospital EYE to EYE London walk as part of this next 20 miler.

Walk One

20.02.2020 Greenwich & Regents Canal

Well that’s it Walk One done and under the belt… Walking with company always makes the miles go by quicker, and I really do have to start this blog by thanking, Nicola, Claire & Clare for mapping out and joining me on this walk.

Its February, its cold, its wet, its breezy – a 20 mile walk is not high on your list of pleasure activities!

We set off from Greenwich around 10am after the standard pre walk faff. Organising back packs , discussing layers needed, organising said layers, emptying and repacking backpacks followed by a detailed discussion on which walking app to track and record our progress (ended up using two of them one on my wrist one on my phone) before the decisive ‘right, we are off’.

For the first two hours the weather was kind, overcast and a bit breezy , but all things considered it was , with hindsight, rather pleasant.

The Cutty Sark, Greenwich

We headed through Greenwich Park to the Cutty Sark and the Greenwich foot tunnel so we could reach Limehouse basin and the start of the Regents Canal.

It was half term so Greenwich still fairly busy and heading under the river through the foot tunnel took us away from the busiest parts. We walked part of the Thames Path to get to Limehouse Basin and from there we joined the Regents Canal – the plan to walk its towpath until we had clocked up 10 miles and then turn back retracing our steps back to Greenwich to complete the 20 miles. Before you ask we did take the stairs in the foot tunnel both ways..

The section of the Regents canal we walked took us through Mile End, Bethnal Green outskirts of Hoxton & Shoreditch up to Islington. The water in the canal was very high from the recent storms and the tow path itself was incredibly busy with runners and cyclists all of us dodging each other for the limited space. We reached the Islington Tunnel after around 2.5 hours walking and the various apps were showing we had completed roughly 9 miles. At this point we would have to head away from the canal for a short time to cross roads before rejoining and it gave a natural decision point to turn and head back – not least because the rain started. When I say rain, I mean RAIN – that big incessant downpour – the horizontal kind. It was funny for a moment or two until we realised it wasn’t going to stop!

Quote of the day from Nicola in this video clip (link below)..


As we turned to retrace our steps the towpath now seemed to be part of the canal. The water was settling and after only a few miles we were wading rather than walking. Our giggles and chats started to dry up – the runners and cyclists less hospitable to the point that one cyclist just decided to cycle into my shoulder rather than go round me. To be fair at this point it wasn’t clear where towpath stopped and canal began..

Nicola, Clare, Claire, Phoebe & Teddy Baxter – halfway point Regents Canal

Weather aside, its really lovely to walk this part of London. The canal is lined with narrow boats and smell of woodburning stoves was teasing us as we got wetter and colder. We decided to get heads down – get back to Limehouse basin and find somewhere to grab a coffee and dry off before the last leg back to Greenwich.

The wind was really picking up and crossing back onto the Thames Path over a little bridge, which on the way out was a lovely milestone, had us thinking we were going to be blown straight into the water with the strong gusts. By now the ground had dried but our trainers were sodden and we were effectively walking in our own portable puddles.

We found shelter in The Grapes pub. Claire asked – “do you do soup? ” “yes” came the reply fllowed by “but the kitchen closed 5 minutes ago”. We were down heartened, but a coffee , a quick dry off by the open fire and a glimpse of Gandalf’s staff (the pub is part owned by Sir Ian Mckellen) spurred us back to the Greenwich foot tunnel and the last push. It had even stopped raining too 🙂

Gandalfs staff at The Grapes (photo cred to Claire)
Greenwich Foot Tunnel – at least its dry..

So we emerged back at the Cutty Sark with the end in sight. However a quick check of the Apps revealed a hiccup. My watch app had reset itself so our mileage to date had reset, probably when peeling off layers to dry in the pub, and my phone App was showing only 16 miles. We were 2 miles from ‘home’ ..

So Plan B was hatched – my lovely walking buddies returned to put the kettle on, dry off the dogs (and themselves) whilst I set off to do as many loops of Greenwich park as needed to hit the 20 miles – if you ask it was roughly 1.5 loops (so had to do the hill twice..) and the rain came back with a vengeance just to add to the drama.

I knocked on Nicola’s door just before it was dark and think I pretty much demolished a loaf of bread as the most delicious peanut butter toast I can remember.

Walk one – done!

Walk two – coming VERY soon..

Questions, questions ..

I suppose that its no surprise when sharing information about an invisible condition that it raises lots of questions from friends and family. I’ve genuinely been overwhelmed by the kindness and curiosity and as many questions are similar thought I would do my best to answer them here.

Why didn’t I know about this?

Until last year, my macular dystrophy really had very little impact on my vision. I had a small smudge in my vision if I closed my right eye. I struggled in bright light so just wafted around in my sunglasses – even if it was cloudy. You probably just thought I was a bit of a diva 🙂

Is it AMD (age-related macular degeneration)?

No. I have a different macular condition – its part of a group of rare inherited conditions called Juvenile Macular Dystrophies. The key difference is that it is a genetic ‘fault’ that affects the macular rather than a gradual degeneration. Macular dystrophies therefore impact your vision much earlier than AMD, but are usually slow to progress in early stages.

AMD affects 1 in 200 people at age 60 and 1 in 5 at age 90 – the cause is not known but the key factor is that as we age cell regeneration reduces and increases the risk. This is why you are likely to have heard of AMD, or know someone with it. It is the biggest cause of sight loss in the UK. The Macular Society supports people with all macular conditions, including AMD.

Why are you talking about this now?

Last year the dystrophy progressed to my right eye. Now when I close my left eye any straight lines are wavy and alongside this, the smudge in my left eye is bigger.

Any visual issues, puts your brain in overdrive as it works hard to interpret the signals from your optic nerve with missing bits. People that have had floaters probably have had some experience of this. After a while you don’t ‘notice’ the floaters.

When things changed for me last year my brain struggled to keep up and I suffered with silent migraines (known as ocular or retinal migraines). I was left with strong dizzy spells and had to undergo several months of medication and specialist physio to get me back to a stable place.

I gave up tennis and skiing and as a result started explaining more about my condition and the adaptations I was having to make. I even struggled during this period with simple exercise and my usual long dog walks became shorter and with the potential for sudden onset of migraines and dizziness I stopped walking on my own.

Why the walks?

Towards the end of last year everything stabilised. Whilst the visual impact has progressed, the migraines have become less frequent – maybe one a month instead of 2 or 3 a week.

In December I ventured back out on a lone dog walk and I am now back in my walking routine. I am hoping by regaining my fitness I can conquer the last of the dizziness and maybe return to tennis. Although I’ll still miss the ball in my blindspot everytime! I love working towards a goal so started to think about finding a walking challenge to give me a focus.

I also wanted to support the Macular Society who have been a source of knowledge and advice on macular dystrophy. They support research into potential treatments and as with all charities rely on donations. They did not have any specific walking challenges in their fundraising activities, so I set about creating my own.

When are the walks – are you really doing 20?

The first walk is in the diary for 20th February. The plan is to do roughly one every 2 weeks so I have some contingency for bad weather and short daylight hours at the start and end of the year. I will definitely be doing 20!

Logistically its a bit of a challenge as I have to plan the routes in advance, keep the full day clear, sort transport and consider conditions underfoot. There’s also other factors such as part of the routes being used for organised events and races – I don’t want to find myself accidentally in the middle of a cycle race!

Hope that answers some of the questions. Over the coming weeks my blogs will be about the walks I have completed and I will do my best to answer any other questions you have. Can you all now focus on wishing these storms away so I have good weather for next week!!

A bit about my macular dystrophy (the science bit)

If you’ve read my intro, you will know that I first noticed an issue with my vision whilst reading a book on holiday back in 2012. I noticed a smudge on my sunglasses that was distorting the left page, and was struggling to clean this from my glasses. It took a while for me to realise that the smudge remained in my vision even when my sunglasses were off.

I spent a lot of the rest of my time on that holiday constantly closing and opening each eye individually hoping that my left eye would just go back to normal. I had always had 2020 vision so this was just completely incomprehensible to me.

Back in the UK, I visited my optician. I had in the previous few years started getting regular eye checks as I had struggled with screen use at work. No prescription had been needed, just glasses that had an anti glare coating as my eyes were constantly tired. Returning to the optician with a ‘smudge’ was a significant change.

The tests and imaging (retinal photos) highlighted some abnormalities that required a referral to an eye consultant. More scans, images, and rafts of tests at local hospitals followed and the outcome was a referral to Moorfields Eye Hospital in London with a list of possible and scary conditions from the consultant.

It was now November and I was asked to attend an extensive diagnostic appointment at Moorfields. For almost 4 hours I was in a room undergoing full visual tests, scans and imagery of my eyes. It was at best uncomfortable, and often painful . I have always been sensitive to bright light since my teens, something I’d put down to just being a bit of a Goth and spending to much time in dark bars and venues.. The constant bombardment of light on dilated pupils in dark rooms was horrendous. I left the assessment around 6 in the evening unable to see properly due to the drops and fluorescein. I walked back to Old Street in big dark glasses guided by my husband Neil – it was November, so it was already dark and I suddenly felt very vulnerable.

All I knew at this point was that the concern was around my macula. The macula is part of the retina, about the size of a grain of rice, but it is the bit that is responsible for our central vision, colour vision and seeing all the fine details.

At my results appointment it was confirmed that I had a genetic condition called Pattern Macular Dystrophy. Its one of the main types of Juvenile Macular Dystrophies (JMD). I was told that gradually I would lose part or all of my central vision and it would also progress to the other eye.

I had to undertake genetic tests for the database that is being compiled for research to help identify the ‘faulty’ genes. At some point this would potentially assist in finding cell based treatments to slow or maybe even reverse the progression.

Currently there is no treatment for my condition. The prognosis was that over 20 years my sight will continue to deteriorate and the condition appear in my right eye too. The good news was that my macular damage was slightly off from my central vision and on most days I didn’t even notice the ‘smudge’ as I went about my day to day stuff. My brain was already adapting to processing my vision with missing bits, and for the next 5 years things just continued largely as normal.

If you are interested in finding out more about Macular Dystrophies Follow this link to The Macular Society website: https://www.macularsociety.org/macular-dystrophies


I’m Jane, and I’m blogging about my experience of Macular Dystrophy and the challenge I am undertaking this year to raise funds for the Macular society.

In the summer of 2012, I was on holiday with my family, feet up, relaxing, reading a book. I kept getting a smudge on the left lense of my sunglasses. it was really irritating and whatever I did I couldn’t seem to clear it and the left hand page was difficult to read. It took a while, but I eventually realised there was nothing on my glasses – the smudge was in my eye itself.

The fear that whelmed up inside me was palpable. I kept closing each eye to test my vision and hoped that I simply had an eyelash or bit of dust in my eye. The smudge remained.

This blog will give you the background to my diagnosis, the prognosis and adaptations I have to make as a result of my condition.

I will also share tips from the Macular Society for good eye health as well as keeping you up to date on both my training and the 20 Walks too. I hope you find it interesting, informative and, at times, entertaining!