Ehlers Danlos Syndrome – Fighting the Fatigue

I’ve written a lot in the past about my life with Joint Hypermobility Syndrome, but more recently I’ve been diagnosed with Hypermobile Ehlers Danlos (hEDS), a sort of upgrade – for want of a much better word! Classed as a ‘heritable connective tissue disorder’, the new diagnosis of hEDS answers many more questions about my health and the wider implications. Simply put, having hEDS confirmed makes some of the other problems I experience fall into place. One of those major symptoms is fatigue, so I thought I’d share with you some of the ways I deal with a bout of chronic fatigue.

elders danlos syndrome, EDS, hypermobility, fatigue

I am by no means an expert, and fatigue can manifest in different ways for different people, so a reminder that I’m writing from my own personal experiences here. I think however, that the universal agreement is that fatigue is much more than simply being tired. When someone is tired, they can usually attribute it to a particular cause; working too much, not sleeping enough, a big night out, or another contributing illness. With fatigue, the cause, or trigger, is often unknown, or can be something small and otherwise not a problem for a healthy individual.

When fatigue hits me, I don’t often know why, although I’m starting to figure out that it’s not usually one trigger, but multiple things building up over time. So I thought I’d share with you my personal tricks for dealing with the fatigue I experience in association with my Ehlers Danlos Syndrome.

Listen to my Body

When my body says rest. I HAVE to rest. No more pushing through the tiredness, and thinking ‘Oh I’ll rest this weekend’ – I have to take action immediately. I have had to cancel plans, go to bed early, and even on rare occasions, get classes covered, although the latter is usually when fatigue and pain are both at a high level. I’ve also learnt that public transport it exhausting when my fatigue levels are high, so when I can spare the pennies, taking an uber to work, as indulgent as it seems, means I can function in my work environment as well as I can.
elders danlos syndrome, EDS, hypermobility, fatigue

Eat Well

It can be very easy when fatigue hits to haul up at home, order take away or opt for convenience foods. The better way to manage my energy levels is to plan healthy, nutritious meals that will nourish my body, not leave me feel even more sluggish and tired. I keep bulk batches of things like homemade chilli and bolognese etc in my freezer so I can simply defrost some good food without too much effort. That’s not to say that sometimes all effort goes out the window and I order a take away.

Move a Little

Similarly to eating well, it can be very easy to vegetate on the sofa and do absolutely nothing. While resting is important, I find that I end up feeling stiff, sore, lethargic and mentally unhappy if I do this. It’s certainly not the time to be starting a new exercise regimen, or even heading to a yoga class, but it is a good time to go for a walk, do some gentle stretching or simply get some fresh air and a change of scenery.

elders danlos syndrome, EDS, hypermobility, fatigue

Sleep, Sleep, and Sleep Some More

We’ve all had days when we can’t keep our eyes open, and have taken a cheeky nap on the sofa. In the worst of my high fatigue days, I can spend a week sleeping 9-10 hours at night, then another 2 hours in the afternoon, and still feel like I can’t function. You might be thinking that the reason I’m feeling tired is because I’m sleeping too much, and if I were then the case that I couldn’t sleep at night, I’d agree with you, but it’s a different kind of feeling from the grogginess you feel when you’ve overslept.

Keep a Diary

As I mentioned, when fatigue hits, especially when it’s part of a wider chronic condition, the exact trigger is not only hard to pinpoint, but can be a multitude of things that have built up over time. Keeping a little diary of your daily activities, or anything out of the ordinary, can help build a picture of the circumstances and either avoid them in the future, or if they’re unavoidable, be aware that it could be a trigger and be prepared for it. I have to credit my Mum for that suggestion (mainly because I’m sure she’ll read this)!!

elders danlos syndrome, EDS, hypermobility, fatigue

With chronic fatigue and chronic pain (I’ll write about that another day), it’s a delicate balance between keeping fatigue at bay, but also having a life! I’m aware that some activities I do, such as surfing or certain workouts, will result in a couple of days of pain or fatigue. I love these aspects of my life, so I allow extra rest days in the aftermath, mainly because the benefits, particularly to my mental health, outweigh the fatigue.

I stress again that these are my personal ways of dealing with fatigue, and that my condition is Elhers Danlos Sydrome, not M.E. With my diagnosis being fairly recent, I am still discovering new things that do or do not work. I have appointments with clinical psychologists coming up to work on how I cope with fatigue and pain, and I’m looking forward to managing my condition a whole lot better in the future!!

On Two Wheels with Decathlon and B’Twin

I used to be a regular cycle commuter a few years ago. My little single speed bike took me from Islington to Waterloo station every day when I was studying for my post-grad degree, and for plenty of summer rides around London. As my knee injury got progressively got worse over the years, my poor bike became more of an ornament in my back yard, looking rather sorry for itself. In the last year or so, I’ve been keen to get back on two wheels, and when I joined forces with Decathlon, it seemed a great opportunity to take a look at a new road bike from their B’Twin range.

I’m not about to cycle mega long distances, or tackle the hills of Surrey, so a fairly basic road bike is all I wanted. I took a look at the wide range of bikes available at Decathlon, and settled on the beautiful, Triban 500 Road Bike, in pillar-box red. The colour had nothing to do with my choice…sort of. Here’s how I’ve been getting on with it.

decathlon, road bike, btwin, fitness, cycling

Photo Credit – Elle Linton

My new bike arrived just a couple of weeks after surgery, so all I could do was look at it until I was given approval to gently start with static training. Immediately I treated myself to a small turbo trainer (Amazon) and got to know my new wheels. It wasn’t long before my knee was strong enough to cycle properly, first around my block a few times, then down to Shoreditch to meet Elle from Keep It SimpElle – thanks for the photos! Since then I’ve been cycling to work once or twice a week, and enjoying life on two wheels again!

If you’re looking for bike specifics, here they are:
With a carbon forks and alloy frame, the Triban 500 is a mere 10.5kg and designed for short to moderate distances. 24 gears is more than I know what to do with, but I’ve found the perfect set up for my commute, with the occasional shift down for one or two short but feisty hills in North London. Once I found the right seat and handle bar height, which always takes a couple of goes in my opinion, I’ve found it to be a really comfortable ride, with no pain in my lower back. If I fancied an upgrade, I might opt for a slightly softer saddle, or simply invest in some padded shorts.

My old bike was custom built around a vintage frame (how hipster of me) so until getting the road bike, I’d never ridden with brakes on hoods on the handlebars. I actually love this riding position now as it’s a much nicer angle for the wrists and I found I get less impact though the joints as I go over bumps. Something important for me to think about with my joint condition.

decathlon, road bike, btwin, fitness, cycling

Photo Credit – Elle Linton

Thanks to Decathlon for helping me out with the purchase of my bike. Although I’d just had knee surgery, when I collected the bike in store (with the help of a friend and his car) staff were attentive and willing to help with the set up and finer details. Any time I need help with the bike, be it maintenance, equipment, or general queries, the team at Decathlon are always on hand to help. Add in their lifetime guarantee and free safety check, and I’m a happy commuter!

Stay tuned for a post on the cycling essentials coming soon, and in the meantime, perhaps get out on two wheels yourself!

decathlon, road bike, btwin, fitness, cycling

Photo Credit – Elle Linton

I am part of the Decathlon Blogger’s Community, they offered me a voucher towards the cost of the B’Twin Triban 500 (full value £349.99) in exchange for a series of posts. All views my own.

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Working Out With Esquared

This post is sponsored by Esquared, all words and photos my own.

With an abundance of fitness studios and classes available in London if can sometimes be hard to keep track of what’s around, what you’re booked into, what class package you’ve bought, and when it expires. Different apps and booking systems have been popping up in recent years to consolidate bookings into one handy location. Among these is Esquared, and I’ve been giving it a go for the last month!Esquared, fitness, app, london

Designed to give people access to premium gyms and classes without having to be a member, Esquared has a variety of partner studios across London. You can see in real time what classes are available, and book for the same day, next day, or even a week ahead. You get an access code, so all you have to do is rock up, give your code, and get your sweat on!

Esquared, fitness, app, london

In terms of classes, you can find anything from bootcamp in the park, barre, spinning and more. Get your cardio fix with Dime or Best’s Bootcamp, sculpt your muscles with Lomax or Define London, or simply zen it out with yoga at Fierce Grace, or Good Vibes. There really is something for everyone.

Esquared, fitness, app, london

Something that really stands out with Esquared for me is that not only can you book in for classes at boutique studios around London, but you can also book gym time. I found this super useful as while I’m working on my knee rehab, I’ve needed to use gym equipment that I don’t have access to at home. Joining a gym just to use the occasional leg press machine or bosu ball is borderline pointless, so having the opportunity to check on the app what gyms are nearby, and book for a couple of hours access is such a useful option. From basic gyms which are £5 to pop into, to luxury gyms at a higher premium, there’s lots to choose from.

Esquared, fitness, app, london

What’s different about Esquared from some other studio booking apps is that there’s no monthly membership fee, just a pay as you go top up system. Simply load money onto your Esquared account and each class or gym session you book takes the credit off. It makes it much easier for those who can’t afford a costly monthly membership, or if you’re often out of town and unable to take class. It’s true freedom, the chance to take a variety of different classes with no monthly commitment – perfect if you’re a bit of a commitment-phobe!

Thanks to Esquared for letting me try the app! It’s super handy for when I want to try something different, or simply have a good old gym session. Why not download it, give it a go yourself, let me know what classes you try and maybe I’ll see you there!

This post is sponsored by Esquared, all words and photos my own.

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A Weekend In Devon

I’ve been very lucky in recent weeks to have enjoyed trips to Portugal and France, and my instagram is enjoying the beautiful content too. Now, while I love travelling around Europe, I had an equally amazing time a little closer to home on a little jaunt in Devon with Girls Explore.devon, girls explore, weekend, travel,

Created by my friend Pippa, and her friend Hannah, Girls Explore is a community of like-minded women who simply enjoy spending time outdoors and want a lovely group of friends to explore with. When Pippa mentioned a weekend of surfing and hiking on the Devonshire coast, I couldn’t say no! What followed was one of the nicest, most enjoyable and relaxing weekends I’ve had in a long time.

Arriving on Friday afternoon, there was no set plan, apart from settling into the bunk house all 26 of us were staying in. St. George’s House is run by Christians but available for all to enjoy. As well as all the varied facilities on site, from volley ball, to table tennis and a full industrial kitchen, our stay with them included a surf lesson the following day.

devon, girls explore, weekend, travel,

Once I claimed my bunk, it was time to explore the local area with a couple of the ladies, on what I thought would be a little walk, which turned out to be a 15km trail from Georgeham to Puttsborough, around the coast to Baggy Point, into Croyde Bay and back to Georgeham…in flip flops! I’m glad we didn’t turn back however, as Baggy Point nearing sunset is a must see.

 devon, girls explore, weekend, travel,

The perils of having beautiful weather is that the surf is also minimal, so we woke up early the next day to catch what swell we could back at Croyde Bay, popular Brit surfer Andrew Cotton. We were split into two groups, beginners and improvers, and had a good hour and a half in the water. Despite the small waves, I caught a few and had a lot of fun.

Later on we hired paddleboards and had a little SUP session in the afternoon sun – absolute bliss.

devon, girls explore, weekend, travel,

devon, girls explore, weekend, travel,

devon, girls explore, weekend, travel,

The day ended with a beach stretch session led by yours truly! Possibly the most relaxing class I’ve ever taught, listening to the ocean waves as we breathed into each stretch was so calming. It also highlighted how much time I spend in a studio as I couldn’t stop saying ‘reach up to the ceiling’ despite the blue skies above us!!

devon, girls explore, weekend, travel,

On Sunday, we hiked the coastal route from Morthoe towards Lee. We intended to hike for 4-5 hours, but as the temperatures were soaring to 27 degrees already by 9.30am we decided to cut it short after 3. We still have plenty of time for stunning views, and a dip in the ocean to cool off half way through.

devon, girls explore, weekend, travel,

devon, girls explore, weekend, travel,

devon, girls explore, weekend, travel,

I headed back to London feeling so calm, happy and more than a little sun kissed. Seeing the beauty that the UK has to offer has resulted in me wanting to explore more of what Britain has to offer. I’m very aware that my first two hiking experiences – The Alps and the Devonshire Coast under glorious blue skies – are probably not quite true of all hikes…but I can’t wait to explore the outdoors a little more in the future!

Where shall I hike next?

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A Trip to the Alps with Decathlon

Swapping my Sweaty Betty leggings and Barrecore grippy socks for hiking boots and shorts is not something I often do. In fact, it’s not something I’d ever done until a couple of weeks ago, when the lovely people at Decathlon invited me and the rest of their blogging community to visit their hiking brand, Quechua, in none other than the French Alps! Jumping at the chance to explore a new sport – exactly what Decathlon’s company ethos encourages – I prepared to hit the mountains.

decathlon, quechua, mountains, the alps, hiking

After flying into Geneva, Switzerland, and driving across the border to France, we arrived at Sallanches, a small town at the foot of the mountains. We collected our brand new Quechua hiking boots, courtesy of Decathlon, and bedded down, excited for the following day’s adventures.

The Hike

I’m sure I’m supposed to talk about the terrain (we followed good trails), the elevation (1,600m or so) and the nature (there were trees and wildflowers), but all I can remember is the view. We were incredibly lucky with the weather and had views of the stunning Mont Blanc with only a few clouds passing by. A couple of years ago I fell in love with the rugged landscape of Iceland, that may have been over taken by these breathtaking mountain views.

decathlon, quechua, mountains, the alps, hiking

Aside from the views, we were testing the MH500 Waterproof Mountain Hiking Boots from the Quechua range and I was impressed with the comfort and quality. After a 5 hour hike, I had no blisters and no pain in the balls of my feet. My silly, weak ankles felt completely supported throughout and we even tested how waterproof the boots were by standing in a mountain stream – no wet feet reported, a success!

decathlon, quechua, mountains, the alps, hiking decathlon, quechua, mountains, the alps, hiking

I was also wearing Quechua MH100 shorts and using the NH100 20L backpack. For me, being a total hiking newbie, they worked a treat. The shorts we comfortable, a decent length that I didn’t feel self-conscious (I’m not used to traipsing around with my legs out), and lightweight enough to keep me cool in the glorious sun. The bag I’m super impressed with, for £6.99 it has plenty of room for all the essentials, complete with front clips, which I’ve never really known what people use them for, until out hiking when I realised that the last thing you want is for you bag to be sliding around your shoulders.

decathlon, quechua, mountains, the alps, hiking

After a 4km hike up to 1,690m, we stopped for a well deserved lunch of french bread (obviously), cheese, ham, avocado, fruit, and a flask of coffee that our genius local guide Thibaut brought along with him. For me, the descent was the hardest part, not a surprise just 5 months after knee surgery. I spent less time gazing at the beautiful scenery, and more time negotiating the tree roots underfoot. Our host from Decathlon, Anthony, kindly lent me a hiking pole, stayed at my pace, and I made it down, albeit a few minutes behind the rest of the crew. Hot, sweaty, happy and very proud of myself.

A Tour of the Mountain Store

Despite my raving about the mountains, the main purpose of our trip to Sallanches was to visit Decathlon’s Mountain Store. Far from just being a shop to pick up your hiking and skiing gear, the Mountain Store is a cafe, restaurant, tourist information spot, ski pass collection point, and local meeting place before ascending into the clouds. Aside from that, behind the scenes, you’ll find a wealth of offices where everything you’d possibly need for negotiating the mountains is created; from idea and concept, to design and prototype creation.

decathlon, quechua, mountains, the alps, hiking

Each department has a dedicated team who work together like a small start-up company within the larger Decathlon world. The working environment is geared towards group productivity, with large co-working tables and relaxing breakout areas. What impressed me the most was the attention to detail in what they produce, which I think might surprise some people. Each product has a prototype made using industrial equipment right there in the vast mountain store, hidden from customer view. Products are then subject vigorous tests using specialised stress testing equipment, before being given to experts to field test out in the mountains. Any issues can be troubleshot and altered before being sent for mass production. Our main focus was the Decathlon’s Quechua brand of course, but we also got a peek at some of the Wed’Ze winter sport equipment too.

Not completely satisfied with making sport accessible for all, Decathlon and the Mountain Store are also making their way in terms of sustainability. Rain water is collected and processed, the roof is adorned with solar panels and they’re dedicated to giving back to the environment and protecting the beautiful mountains that surround them.

decathlon, quechua, mountains, the alps, hiking

I had an absolute blast with the Decathlon team, and a marvellous group of bloggers. If you’re not tired of mountain spam on my instagram feed, here are a few more photos to whet your appetite. Big thanks for Decathlon for the invite and their wonderful hospitality.

decathlon, quechua, mountains, the alps, hiking decathlon, quechua, mountains, the alps, hiking decathlon, quechua, mountains, the alps, hiking

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Review – Champneys Health Spa

Nothing says indulgence and relaxation more than fluffy bathrobes, relaxing music and the scent of aromatic oils floating through the corridors. Step into one of Champneys four spa resorts and you’ll be greeted by each of these things, as guests potter through the hotel and spa in flip flops and bathrobes, zen’d out from an undoubtedly sumptuous massage, with the echoes of panpipes and birdsong in the background. I am a lover of spa treatments, having been lucky enough to visit the original Sanctuary Day Spa in Covent Garden, and a Champneys Spa, with my Mum a few years ago. Escaping life for a day or two is wonderful, and throw in a massage or facial and you’ll be lucky if I can string a sentence together afterward!champneys, spa, health, review

Having not had a relaxing massage for a while, and having no clue as to what to ask for my birthday this year, I decided that a spa day was a great idea. I get a discount on stays at Champneys with my Vitality Health Insurance, and my lovely Mum covered the treatment costs as her gift to me. So on a dreary weekend in April, I took myself off to Champneys Henlow for a 1-night spa break.

My Stay

Set among woodland, the River Hiz and sprawling fields, where once there was an old monastery, now stands an imposing Manor House, home to Champneys Henlow. The entrance is as grand as the building itself with a sweeping driveway, complete with a fountain.

champneys, spa, health, review

I treated myself to a room upgrade, so my superior room had a little outdoor space with a gorgeous view of the weir. I was greeted with a large, comfy bed, a standard fluffy white robe, and a little selection of Champneys products in the bathroom. Although the room was large and very well stocked with everything I needed, the decor did feel a little tired and run down. The whole place is undergoing a regeneration, so perhaps the rooms are on the ‘to do’ list.

Included in the price of the room is three meals a day; a sit down dinner, a continental breakfast and buffet lunch. There are ‘light diet’ options for those who want it, but everything follows the Champneys philosophy of healthy, delicious and beautiful food.

My one small complaint with the food is that although there are pointers everywhere to allergens and special diets, I did find that with an almond and soy allergy, my choices were slightly limited. When I asked whether a dessert could be prepared without the soy cream, I was told that everything was already pre-prepared and it couldn’t be done (perhaps it was naive of me to think that a dessert could be made to order). I also struggled at breakfast, as the porridge and yogurt options were also soy or almond, with dairy milk only available for cereals. I fully appreciate the need for a wide range of milk options, but I definitely found it a bit restricted.

My Relaxation

When it comes to relaxing, the possibilities are endless at Champneys Henlow. I made a bee-line for the pool area with hot tubs, sauna, steam room, and of course a large pool for getting those laps in (what am I saying, I think I swam about 4 lengths). Next to the pool are a rows of comfy day beds, adorned with cushions, for whiling away the hours with a good book.

champneys, spa, health, review

Elsewhere you can find a large conservatory with beautiful riverside views, a cosy library, and a cafe with views over the pool. Plenty of space to have a nap, catch up with your girlfriends, or soak up the relaxing atmosphere.

As part of my spa break, I had 2 hours of treatments booked, a 1 hour full body massage, and a 1 hour body wrap with facial. Both were absolutely blissful, but I have to give an extra special mention to my masseuse, whose name escapes me. Having not long has knee surgery, my body is full of imbalances, tight spots and niggles, add to that the hypermobile joints, I sometimes worry with inexperienced massage therapists that they’re not sure how to protect my unstable joints while still getting deep into the tissue (I’ve almost had my shoulder pop out of it’s socket mid-massage before). Here, I had nothing to worry about, he took time to assess my imbalances, working on the secondary problems that have arisen since surgery, and I felt perfectly safe as he held my shoulders in place while releasing deep underneath my scapula. I’ve honestly never had a more detailed, beneficial massage and I felt amazing.

champneys, spa, health, review

Whether you want to escape the city for a day, or have a long weekend of pampering, Champneys comes highly recommended in my books. I left feeling rejuvenated, relaxed and ready to face some new challenges. So next time you’re looking for a birthday treat for your, or a loved one, why not have a look at their website?

This post is in no way sponsored by Champneys. All views my own.