August 2017

I’ve always loved walking. It’s great exercise when you have issues with muscles, bones and ligaments. It doesn’t have the impact on knees, ankles and hips of running. It doesn’t require some stamina to get started, like cycling does. Best of all, it only requires a pair of walking shoes. I used to walk everywhere all the time. It kept me out of a wheelchair and on my feet. I walked to classes, I walked to work, I walked to shops and the cinema. For fun, I went to the park, the beach, explored a local trail or occasionally, climbed up the side of a mountain.

Every time I come across an article about walking it always strikes me that the first thing mentioned is how easy it is. Effortless and so painless that most people don’t think it even counts as exercise. Walking isn’t easy for everyone. EDS is a pretty nasty genetic kink and for me and Cass, walking hurts most of the time. Our joints don’t stay in place, they’re almost always partially dislocated to some degree. It hurts to walk with ankles, knees, hips and shoulders that are constantly moving out of joint, but bodies are built for moving and if we don’t keep moving, the muscles that hold those joints in place deteriorate to the point where they stop being of use at which point, it’s wheelchairs and morphine time. That’s infinitely worse. So we go for lots of walks.

We love walking in the countryside. I’ve lived in England for sixteen years and I haven’t picked up the habit of footpaths that stretch out for miles and miles because it’s scary when there’s a point of no return. On a footpath there’s nobody to go fetch the car when joints dislocate very badly and walking a mile or two when you can’t get your kneecap to go back where it belongs, is a frightening thought. We love parks, we love National Trust properties, we love familiar places where the effect of every step has become predictable, but it isn’t always possible to trek out to somewhere pretty to go for a walk.

My favourite way of walking is when I can forget we have a car. Where walking becomes so accessible that I don’t worry about it. It’s one of the big reasons I love Centerparcs – it offers a glimpse into a way of living that I’ve always dreamed of. It’s not a way of life that’s possible at the moment, but we can go for a walk no matter where we are. Including home. On sick days, when most things feel overwhelmingly complicated, a walk down the road, through the alleyway and up a gentle slope feels like my only accomplishment.

I prefer walking in woodland and fields, on beaches and footpaths, across hills next to rivers and streams, but opening the front door and stepping out into a more urban setting isn’t all bad. Walking lets us connect with our local environment. I love the tree that grows in the front garden three houses down. I enjoy looking at the variety of hedges and trees, shrubs and seasonal flowers, small birds and lots of little quirks that I wouldn’t notice otherwise.

It’s easy to say we’ll go for a walk on good days. I don’t look at the weather forecast, but the health forecast. I don’t mind heavy rain, muddy paths, ice or snow. We gauge the day on pain levels, breathing ability and blood glucose readings. On a good day, we’ll make it down to the river or through the woods, we’ll stop in at Stonehenge or Stourhead, we’ll take a kite or a picnic – a kite and a picnic. We’ll make a day out of it. On the not so good days, we often stay in even when we shouldn’t. Not anymore.

We’re doing our best to get outside, even if its just walking down the street passed Tesco. We will always walk whenever we can, because it’s a great way of spending time together, getting away from the usual worries and it’s an uncomplicated way of seeing the world close up – at walking pace.

1 August: Walk one around the block

We deliberately started the challenge with the general suggestion that walking is free, easy and all that’s required is a pair of shoes. I left in an old pair of Nike trainers, Cass and Chris each with a pair of Mountain Warehouse walking shoes. Walk one was not ambitious. We went for a half an hour stroll around Amesbury following a familiar route we often walk after dinner a few times a week.

It didn’t feel like we were doing something new or particularly different, but that was fine. Our strategy was not to be ambitious, but achieve sustainability. We usually manage three or four after dinner walks and then we skip a night. This time, we planned to just keep walking regardless every day.

A good and sensible start.

2 August: Walk 2 across the field

It was a chilly, wet Wednesday. Cass had already been swimming for an hour in the morning and still had Tae Kwon Do after dinner, so this would definitely have been a night we’d usually skip. Instead, we went for a half an hour walk mid-afternoon. We again chose a familiar route around Amesbury that landed us back home just in time for dinner.

Interestingly, the pre-dinner walk did wonders for her glucose levels and there was dinner spike to combat despite having quite a high carb meal because she favours higher carb meals on high exercise days.

I definitely would have skipped today’s walk. Coming down with a cold, my asthma is acting up. I’m coughing, my chest feels tight and I’m breathless just walking around the house. I took a preventative dose and needed my blue inhaler twice on the walk, but we still managed a reasonable pace and made it home tired but much more relaxed feeling very proud of ourselves because we made it out the door for our walk.

3 August: Walking to the library

Amesbury Library is open until 7 p.m. on Thursdays. Cass has signed up for the summer reading challenge and having finished four books last week whilst in Devon and Cornwall (it’s amazing how much reading gets done when screen time isn’t an option), she wanted to go tell the librarian all about it. We walked the long way round to the library, about a 20 minute walk, carrying books.

The library stopped turned out to be a bit longer than we’d planned on. We lingered at the library, choosing books.

The walk home was much faster and more enthusiastic as getting home quickly meant there was more time before bedtime for reading.

4 August: A walk in the garden

Friday wasn’t the best day for a long or brisk walk. An asthma flare-up meant that walking was problematic and I’d missed the last couple of steps on the stairs and partially dislocated my left ankle before breakfast and was still hobbling around putting through partial weight by dinner time. We didn’t want to just stay indoors, so we compromised with a walk around the garden.

EDS isn’t a fun condition (is any chronic illness), but I learned from Cass the toddler as she learned how to walk and then run, that the best way to get joints back into place is to keep using them with small rest stops in between until it sorts itself out. It took about 45 minutes of walking for the agony to be replaced with a strong sense of discomfort.

Whilst I walked in circles, Cass ran in circles and played tag with Chris. Not a traditional walk, but most definitely an improvement over saying ‘it hurts, I can’t breathe properly, I’m staying on the couch’. A good ending to a less than great day.

5 August: A leisurely walk on the ridgeway

Chris and I had an early anniversary lunch and after a hearty pub meal, we drove up the hill and went for a gentle walk on top of the ridge along a part of the Wessex Ridgeway. Chris grew up walking here, but despite living in Wiltshire for a decade, I haven’t really walked many of the footpaths or local trails.

Cass joined her grandparents for a walk – they picked a few blackberries – and we discovered that going for a walk doesn’t always have to be about a brisk pace or getting somewhere – it can be nice to just wander a bit, looking at the clouds and listening to the wind in the grass and then sitting down with a Kindle for a while.

6 August: An impromptu walk around village pedestrian walkways

Sunday was a busy day. Health issues kept popping up all week and it meant that the daily chores fell behind. The garden was morphing into a jungle, the house needed a good scrub and we hadn’t packed a thing for a 3-day camping day starting first thing Monday morning. There wasn’t time for walking and by early evening, we hadn’t done our daily walk. This is another prime day where we would skip the walk, but an hour before Cass’ bedtime, we locked the front door and set off for a new loop around Amesbury.

We took a right onto a street that doesn’t take us anywhere we want to go. It’s amazing how selective I am getting around in the one mile radius surrounding our home. I am intimately familiar with the routes to school, shops, the local pub, the dentist, surgery and opticians. For leisurely walks, I pick the green spaces and know the routes to and from as well as around them very well. I never just turn onto a residential road unless it’ll take me somewhere I want to go. Until now.

It was a highly memorable walk. We passed cats watching us watch them from their perch on a fence on a car roof, under a tree or on top of a car port. We passed a boy on his bicycle, whizzing around a cul de sac on a rare, bright sunny day, then a girl on a scooter, zipping up and down the pavement in front of her house. Parents were outside – a Dad working on a car – a Mum weeding in the front garden and a grandmother watching her granddaughter on the scooter. We live on a busy road with houses that have massive back gardens. It’s amazing how big a difference that made.

7 August: Walking in the New Forest

We arrived at our camp site near Ashurst in the New Forest around lunch time. We pitched the tent, had a picnic and then set out on a pony spotting walk. The New Forest is a beautiful place for walking and we love just heading out of the camp site into the woods.

We didn’t just go for one walk, but three. It’s always easier to be active outdoors when we’re camping.

8 August: Walking around Beaulieu’s Motoring Museum

Beaulieu was not what we had expected. I had imagined it as mainly a motoring museum with a couple of small extras on the side. Cass had imagined it having almost no outdoor space and as she isn’t interested in cars, thought she’d find it dull and boring. We were both very wrong. It’s a lovely place for a day out. It has a quaint monorail with two stops, a Veteran bus, the museum, Abbey, Palace house and gardens, a Victorian kitchen and flower garden, a small WWII museum and a lovely woodland walk.

We pretty much spent the day walking the grounds, but for our daily walk, we set out on Millpond Walk next to Beaulieu river. Cass invented a whole village of fairies, complete with names, histories and daily dramas as we discovered the fairy doors and the reward at the end was a ride on the monorail back to the museum. It was wet and rather chilly, but with a pair of Bogs’ insulated boots, I had warm feet whilst Cass (who has outgrown her pair of Bogs) and Chris complained that their supposedly waterproof walking boots turned out not to be waterproof at all.

9 August: A drenching walk at Mottisfont

We detoured via Mottisfont on our return from the New Forest. It’s one of our favourite places to visit since Cass was about a year old. We had a look at the Horse Chestnut Tree to try and see when conkers will be ready and then Cass really wanted to the summer children’s trail after lunch. We had a warm, hot meal with large, hot cups of coffee, then braved the rain for an hour.

I discovered that my Trespass 3/4 coat, which had held up very well this wet summer, had one major flaw – when it was a perpetual downpour little rivulets ran off the raincoat and soaked into my denim jeans where the coat ended as I walked. Cass had a similar issue with her coat. Chris did not. He gloated.

Again, I was the only one with dry feet. I love my wellies, but they aren’t walking boots, they’re wellies, so after a while, my ankles get painful from the lack of sturdy support – still, dry feet is incredibly nice in wet weather. It was a fantastic walk, despite wet legs and cold feet (not me!) and everything is so incredibly green it feels like an eternal English spring outdoors.

10 August: Walk to the park

We walked to one of Cass’ favourite green spaces over lunch. Life is busy and complicated and we don’t always take the time we should to walk to where we want to go. It’s been useful to have a bit of additional incentive to not drive to the park, but walk instead.

It walk more, but we also talk more. Idle conversation rather than the usual directed conversation about coordinating schedules, diabetes management or choosing topics around educational themes. It’s been fun and relaxing and makes me wonder why we often sacrifice the best parts of life just because they don’t seem to have a specific purpose.

11 August: Errants on a walk

It’s great to take time out to go somewhere away from the crowds and cars for a walk, but that isn’t always possible on a daily basis. Today, we had errands to run. Cass’ required new books from the library. We wanted to stop in at the shop to pick up some fresh food and there was a letter to post. We combined it all into a long walk with some extra loops on the way.

It always makes me feel guilty for how much more we should be walking. I’d like to be one of those people who walk or cycle and make use of public transport instead of always getting into a car to go places. The ideal is often far from reality, particularly with disabilities that often make it harder and more complicated, but it does feel good to make the conscious effort to not only walk for pleasure, but also to get where we want to go.

12 August: A woodland walk at The Vyne

A not rainy day, which is starting to feel unusual on a day away from home. We seem to have travelled across the Southwest in wet weather, no matter where we go. We’ve never been to The Vyne, a Tudor National Trust property and really enjoyed watching the roof being repaired, spotting Canada Geese, testing out geocaching and finishing the day with a one mile woodland walk.

Cass dislocated her ankle on the way back rather badly and limped the last bit of the way, but with beautiful surroundings to distract her, we didn’t have to head to the car for the ‘chair or carry her the rest of the way. A great relief.

13 August: Walking around the house

We all woke up on Sunday morning with a bad case of a bad cold. Chills and fever, stomach aches and runny noses, we were all miserable. I developed a bad cough and a migraine, both flaring up whenever I lifted my head off the pillow.

Cass who is prone to stomach aches had difficulty keeping anything down or moving around without it hurting a lot. Chris did his usual, I-dont-feel-well-head-tucked-under-a-pillow impression. Even the cats weren’t feeling great and despite the best of intentions, we just weren’t up for a walk at any point during the day.

On the front page, I mention that we learned about Wabi Sabi. It’s a Japanese term centred around acceptance of transience and imperfection. So instead of bemoaning the fact that we didn’t drag ourselves out of bed to go for a walk, we chose to embrace transient health and imperfection. We’d do better taking it easy. So we did. The closest we came to a walk was moping around the house. At least we didn’t stay in bed all day!

 14 August: Another walk in the woods

We managed a rather big walk after dinner looping down to the woods by the river. It’s the most beautiful part of Amesbury for me and we love visiting the squirrels. We meet the squirrels a lot.

15 August: Riverside walk

We’ve discovered over the last two weeks that we love walking, but still feel a lot of time pressure to fit it into a 24-hour day. As a result, we’re still opting for the quick, easy choices – a walk around the local area. Although I do enjoy these, particularly on cool, rainy evenings, it doesn’t have the same charm as a nature walk. Tonight, we walked down to the park. The walk itself was through the centre of Amesbury, but once there, I always regret not visiting more frequently.

It was a gorgeous evening, not quite sunset, but that lazy time on a summer’s evening where the sun rests at an angle in the sky and its raus colours everything golden. Not too warm, not too cold, not too bright, not too dim – a Goldilocks kind of afternoon. It made me wish I could make time stand still just for a while.

The brisk walk back was less about scenic route, but it remains enjoyable to get some exercise on a regularly basis.

16 August 2017: Sick days

Another sick day. We all woke up with a fever, feeling rotten. The previous two days we managed to get out on longer walks, despite coming down with something, but today ill health is in full swing and all our health issues flare up alongside it. Chris managed a trip out to the dentist, but Cass and I barely made it down the stairs, nevermind out the door. It’s disappointing and although a relatively small thing, a bit demoralizing. We’d like to be the kind of people who do the things they commit to do, but some days, stopping is more sensible than forging forwards.

Life with a chronic illness just sucks. It’s something that complicates every minute of each day and on a regular basis, derails or plans and commitments. As I hugged Cass when she couldn’t stop crying because her legs and back were hurting because she was getting muscle spasms that pulled the bones out of alignment, I starting crying as well. Mine was doing the same and it hurt and I didn’t want to spend all this time wasted by being just too unwell to do anything. We embraced Pyjama TV and snuggled on the couch not feeling sorry for ourselves. There will be good days and bad days and at least, even on the bad days, we understand and support each other. Tomorrow, hopefully, will be a go-for-a-walk-day again.

17 August 2017: Kite flying walk

We didn’t make it out of pyjamas until the afternoon, but Cass made a kite and we walked to the nearest green space with wind to test it out. It didn’t quite fly high, but it did fly! It was a lovely, sunny day and coming home, we had a quick dinner and went straight to bed.


18 August 2017: Walking down memory lane

We moved to Amesbury when Cass was very little and have spent a lot of time walking around its streets. Tonight’s walk turned into a bit of a walk down memory lane. The street where she fell over, grazed her hands and dislocated her knee so badly we had to carry her back up the hill home. The library where she’s been getting her books for so many years that every time we pass it I remember all the younger versions of her carrying a pile of books down the steps.

The gardens we pass are familiar and we’ve watched the plants grow or chopped down over the years. The chickens (pictured right) was an exhilarating discovery when she was two and now she stops to admire the beans growing tall and to measure the progress of the trees in a newly planted mini-orchard. The slight hill on our way home that often defeated her little legs is now barely a challenge and she carries on a conversation all the way to the top.

There was a time when I wasn’t sure if she (or I) would ever be able to walk home from the library, but the thing about EDS is that the more you persevere, the stronger your muscles grow, the less joints totally dislocated. Walking still is neither easy or fun and we still gravitate toward walks close to rescue options because walking on a dislocated knee, ankle or hip – or even just walking with a dislocated shoulder really hurts. However, it’s become an activity of shifting bones which is tolerable pain. I still sit down for a while after each walk, taking stock, giving bones time to maneuver themselves into a more comfortable arrangement. I’m glad that it’s no longer something I’m scared of – for myself or my daughter. It’s something to get through, to manage, just like her Diabetes and my asthma – not something to avoid.

19 August 2017: Avebury

Avebury is a great place for a long walk. We spent the day learning about stone circles as well as Avebury Manor and stepped back into history by walking down The Avenue. It was a blustery, but sunny day and we really enjoying being out and about.

The nasty cold that’s been complicating our health issues haven’t lifted yet, but we were all well enough to wander a bit and get out of the house for a much needed change of scenery.

20 August 2018

Yet another sick day. Sometimes its a great idea to push on, but sometimes it isn’t really an option. We’ve had a lot on our plates and I in particular, just feel miserable and wouldn’t mind a week spent in bed. Chris bustled around the house, Cass built a moveable bed out of of K’nex and the most I walked was to the kitchen to make another cup of Pukka’s ginger and honey tea. Fingers crossed for tomorrow.

21 August: A virtual walk

I don’t have as much time for gaming as I used to. Life has gotten busier and my health has improved enough that I’m able to go places and do things rather than spending most of the day every day nearly in bed. Today was one of those days where I remembered what life can be like when unwell. Chris and Cass just about made it to the pool, but I’ve spent the day nearly in bed. Early afternoon, Cass started complaining of feeling very unwell and Chris fell asleep in the day – which only happens when he’s sick. That’s when Cass asked if maybe we could play a game.

We played the first few minutes of Everybody as gone to the Rapture again  – there’s nothing particularly mature about the opening and it’s a beautiful place for a walk. We wandered though the village and looked at the cottages, identified some wild flowers by name and I had to explain what a red phone box is for. After our walk, we loaded up Portal and completed some early puzzle rooms. Before we knew it, it was dinner time and then time for bed. It was the first afternoon at home in quite some time that wasn’t frantic or filled with worries about to do lists that are growing as we take life a bit slower whilst particularly unwell. Sometimes a virtual walk is just as good as a real one outdoors.

22 August: The library and surgery

We managed to make it out the door again today for a late afternoon walk to the surgery for prescriptions and the library for more books. Cass counted how many different colours of flowers we could find and seven was the limit – red, pink, orange, yellow, blue, purple and white. Not quite the rainbow, but close. We visited the library and struggled back up the conservative hill, bracing for the longer route home.

It’s amazing how tiring every step becomes when you’re not feeling well. Cass dragged her feet and it took much motivation to get her going after every little rest stop. She went straight to bed as soon as we got home. Not the idyllic nor ambitious walking I had planned for this week, but you do what you can with what you have.

23 August: Taking the long way round

A better day again and we managed a longer walk around Amesbury. The sun is setting earlier and by mid-afternoon it starts to feel like the day is ending. This is the start of my favourite time of the year. I love when days have a definitive beginning and end whilst we’re still awake. Sunrise and sunset is always spectacular and the chillier feel to the air at those times are very welcoming. We’ve spotted a few leaves already changing colour and when the sun peeks out, it’s lightens up the sky. It’s a great time of year for a walk.

24 August: The doctor’s surgery

There’s being unwell and then there’s being very unwell. The misery of a bad cold is never pleasant, but slowing life down and taking time to recover – when the luxury is available – has some pleasure to offer. The last day unwell turned to very unwell. Too unwell to eat, in too much pain to sleep, life becomes unmistakably unpleasant. After a night of little sleep, the only walking accomplished today is the small walk from the car to the doctor’s surgery.

25 August: Bonnymead

A beautiful walk in Amesbury. It doesn’t take much time to leave streets and houses behind for fields and trees.

Bonnymead park is beautiful any time of the year, but late afternoon this time of year is my favourite time to go for a walk by the river. The sunlight slants through the trees and create perfect reflections on the water. It’s cooler already and after the warmer days, it’s refreshing to almost need a jumper.

26 August: Kingston Lacy, Dorset

Kingston Lacy, a National Trust Property in Dorset, is the perfect place for a day of walks. The gardens are magnificent, the woodland walk is a lovely and the wider estate beckons as well. We had a lovely day exploring it all and also spend some time playing chess and learning a bit about the Stuarts and how Kingston Lacy links up to Corfe Castle.

27 August: Life interferes

We had a great plan to go for a walk by the River Avon, but I woke up with a horrible migraine and if there’s one thing that stops the thought of activity dead in its tracks, it’s the agony of a throbbing skull. We had a quiet day at home with the curtains drawn.

28 August: Wilton

Up early on the hottest August Bank Holiday Monday on record to explore the annual Wilton House car boot sale. Not a traditional way to walk, but we’re embracing the idea that being more active isn’t just about getting into specialist clothes after dinner four times a week, but something that’s integral to daily life.

Driving through the high post a little while after 8 a.m. on a quiet morning, the still green grass was at contrast with the golden fields beside the road. I get terrible migraines during hot spells but armed with heavy duty sunglasses and a bag of medication, I made it through the morning before collapsing back into bed as soon as we got home.