What does Hypermobile Ehlers Danlos Syndrome look like?
After announcing that I was recently diagnosed with Hypermobile Ehlers Danlos Syndrome and the support you all gave me, it meant a lot. As I said in that blog post, I didn’t want to include any photos in case nobody wanted to see, but you’ve all been pretty positive and I’ve received a lot of personal messages as well with intrigue, so I thought I would share with you what it looks like.
I did want to point out that these are my own personal hypermobility symptoms and I’m aware that every single person in life is different, so every EDS sufferer is going to be different too. I’m aware that some people suffering are a lot worse than me and can’t even keep their joints in, or are confined to a wheelchair, but there’s also a lot with mild symptoms that aren’t too visible. I’m not sure where I would class myself, but if the Beighton Score is accurate, I am 9/9 on that and I would say I’m about a medium level – given the pain.
I said before that I’ve always kept any of my hypermobile joints off of the blog because of abuse I’ve received and just from the general feel that they are not nice to look at, but as I’m trying to help others and shed some more light on the condition itself, I’m doing a blog post for you showing you what it looks like on me and how it presents itself in the physical form. I obviously can’t share the internal symptoms as they’re not visible, but I plan on covering everything a lot more in a series of posts in the near future, as well as methods to help with problems, but lets look at my joints and skin.
Overextended Elbow Joints
My overextended elbow jointsmuch pain
Off Center & Over Extended Knee Joints
My knees are the joints that I used to suffer with a lot. As a child they would dislocate all the time and pop out of the sockets, but as you can see, they are completely out of alignment. I’m not sure if this is related to my pelvis (it might be) but as you can see from the lines I drew on them, the knee caps point inwards and aren’t straight. The right photo shows the same as what my elbow does as well, my knees extend backwards instead of staying straight. I’ve had a lot of physio work on them and they are much stronger than they used to be – they used to give out a lot and I’d fall down, especially on the stairs, but they do cause a lot of aches and discomfort. I get a deep bone ache when it’s damp or cold and I have to sit with hot water bottles on them. My knees are the reason a lot of people have been horrible to me in the past as well – but it’s something I have never been able to help. It is what it is.
Stretchy Skin & Ingrown Hairs
I have stretchy skin. There’s certain areas that it pulls up and stretches really easily, like my forearm, my neck, my eyelids, my knees, my scalp etc as it has so much elasticity. This is because of the collagen problem. It’s quite lax and takes a very long time to heal if I get blisters or marks. It also bruises very easily and I’m often full of bruises that I didn’t know I even had, or don’t remember doing.
My knees are extremely stretchy and have a lot of extra skin on them which is why I don’t like them. I struggle to wear below the knee boots as the skin pushes up and folds over the top like a muffin, and in shorts and skirts I get a bit conscious of the way they look when I’m stood straight as they look fat. If I’m in tight jeans with knee holes as well, the skin can bulge through, so it’s not great, ha ha.
I also wanted to point out that those little red dots and lumps all over my legs are ingrown hair problems. Due to the elasticity of my skin, my hairs often get trapped underneath the top layer and can become infected. I’ve tried everything possible to get rid of ingrown hairs and I haven’t had much luck at all because of my skin. Tweezing them out is painful and laser hair removal is expensive, so it’s a battle I’m working with right now. At some points, like right now, I currently have at least 35-40, if not more, hairs that are stuck under the skin just on my lower legs.
Bendy Fingers
This is one of the Beighton Score tests where they check the flexibility of the fingers, especially the little one. If it bends into a right angle, it hyper-extends. All of my fingers bend this way and I can create a complete 90 degree angle with my hands. While it’s pain free when they bend like this, the constant unstable finger joints like my knuckles etc. do cause me pain when I’m trying to write, hold things, or just use my fingers in general for various motions. They also lock and you have to pull them to unlock them which makes a cracking noise. My ring finger does this multiple times a day.
Foot Pain & Piezogenic Papules
I thought I would show you my feet as I had no idea about these before my visit to the specialist. Those little white lumps on the heels of my feet are called Piezogenic Papules and I’ve had them since I was a child. I always thought they were normal, but apparently they’re not. They happen because of a herniation of fat through the dermis when any pressure (example standing weight) is placed on the feet. I also have these in my wrists. Then the boney lump which looks like another ankle is my accessory navicular bone. I was born with an extra bone in my right foot and it causes me a lot of pain, especially if I’ve walked for too long, it starts to ache, and shoes can rub on it too. Not everyone has this, but a lot of EDS sufferers do and some have them in both feet.
Now I’m typing this before the video as I wanted to recommend that you only watch it if you don’t mind joint dislocations and popping, purely because I’ve had a few people feel sick before when they’ve seen it, or cringe. It’s only 6 seconds long, but if it’s something you know you wont like, please don’t watch it as the last thing I want you to do is feel queasy after coming here. The video shows what happens to my hip joint if I lean on it. This causes me a lot of pain as with every step they pop a small amount, and then with weight, they pop out. They pop out as well if I twist my leg left or right, so I can end up limping around after walking for too long and this is why I can’t do hills and struggle with too many stairs. The extra strain on the socket causes a ligament to snap back and forth across the joint and it hurts like it’s being pinched for around 3 days after, making me limp as I can’t put any weight on it. I have to be really careful in avoiding that as it puts a huge dampener on my days, especially when I’m on holiday – it’s happened the last two times.
Hip Subluxing & Dislocations
Now these are just the few main things you can see that’s wrong with my joints, but I suffer a lot of back pain due to everything being loose and slipping around, plus it’s slightly curved. I get extremely tired and fatigued as my muscles work overtime to try and keep me stable and stop the dislocations. And like I said above, all the internal symptoms that happen as well but aren’t visible, so what you’re seeing here is probably only about 10% of my issues. I hope this blog post has helped some of you, and if you’re suffering with any pain or your joints over extend like this, you might want to check out being tested for Hypermobility, and if you suffer with a lot of internal symptoms and stretchy skin as well as the joints (see my original post), it’s worth checking up on Ehlers Danlos Syndrome too. I’m looking forward to your comments! I’m not posting this blog post for any type of sympathy in any way though, it’s purely informative, so do let me know if you have any questions. Lorna xx.
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A Floral Black Playsuit For Summer
Can you believe the weather we had last weekend? It was so hot! It reached 28C here in Bath and that’s a temperature that us Brits are not used to, ha ha. It definitely made a change though and it was nice to actually go out in little clothing, finally getting to wear the summer clothes I had anticipated wearing for a while. As I’m usually re-wearing the pieces that I own in my wardrobe, I don’t actually own that many summer clothes as we only get about 1 month of the year for it, so I am showcasing a brand new look with all new pieces for you here!
I was wearing most of the pieces from Superdry, like this Smocked Ruffle Playsuit as I adore the little rose print and the ruffled shoulder detailing, which I styled with these easy Pool Sliders and these pretty Cassie Sunglasses. I’ve been wearing these sunglasses all weekend actually as I love them! I did opt to have my Riot Biker Jacket as well for the outfit, but as it was too hot, I only layered it over the shoulders for a couple of photos to showcase how you can take this from day to evening. It’s a faux leather and the painted elements on the back, as well as the little patches on the arms, are really cool!
Then for my accessories, I went with my Celine Micro Belt Bag in Clay and my new Swarovski Crystal Dust Bracelet. I haven’t yet done the review of this bag as I’m waiting a while at the moment, but it will be soon! I thought I would share it with you in a couple of outfit posts first though as it’s the bag I’ve been wearing all weekend. Then getting to my bracelet, isn’t it stunning? In real life it glistens and sparkles like crazy! It was an anniversary gift for mine and Adam’s 10 years a couple of weekends ago and it’s so special. It’s in the sale and in multiple colours, so if you want to get one, just click here. You can of course shop all of the items I’m wearing with the links at the bottom of this post though.
As I don’t usually wear looks like this, but love experimenting with styles, I seriously love how these photos came out! It makes a change to shoot in the sunlight and it’s nice to wear something edgy, but feminine at the same time. For an outfit I chose all online, I was pleased all of the pieces worked together and fitted. I thought shooting the photos with this location with the manor house behind and the buddleia bush in the garden made a great backdrop to contrast against the toughness of the ensemble – it almost tones it down and helps make it more elegant. What do you think of the outfit? And did you enjoy the summery weekend? Lorna xx.
P.S. – Thank you for the support in my last post where I showed you what Hypermobile Ehlers Danlos Syndrome looks like on me. If you missed it, please do check it out!
What I Was Wearing:
Playsuit – Superdry c/o
Jacket – Superdry c/o
Bag – Celine
Slides – Superdry c/o
Sunglasses – Superdry c/o
Bracelet – Swarovski
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What Luxury Wristwear Pieces Are Worth The Investment?
Luxury and designer wristwear is something that is extremely popular, but everyone has their own thoughts and opinions on it. While some think it’s insane to spend such a large sum of money on a small item, others see them as investment pieces that are good for the future, not just now. I thought I would do a little post on the topic since I own a mixture of luxury and non luxury items, meaning I have an opinion from both sides of the conversation. I’m not at all an expert, but over the years I have come to learn what’s a good investment and what isn’t, but if it’s a timepiece or bracelet you’re looking at as a fun piece to wear and can afford it, go for it as well!
My watch featured above is the BVLGARI LVCEA and it was the very first watch that I bought from a luxury brand. The LVCEA collection has been out for a few years now and this particular one is still available to buy, but I have noticed it hasn’t held its value. BVLGARI are not known for their watches being an investment and are more of a statement instead, so I don’t recommend them for buying to sell at a later point as they decrease in value when they’re used. It doesn’t matter to me though as I have no intention of selling this beautiful watch and saved up for it because I love it, but for anyone wanting a luxury timepiece which holds its value, opting for more of a fashion watch isn’t the way to go as you wont get much return. This leads me to the next paragraph below…
(Photo Credit – BobsWatches.com)
Rolex is a fantastic place to start if you want investment. I’m sure you’re all familiar with the Swiss luxury watch maker as they’re the most famous in the world. They are known for holding their value and the pre-owned styles over time can even cost more than what they were purchased for originally – depending on demand.
Omega is a great brand for an alternative, as is Patek Philippe, but the ultimate in luxury wristwear would be Rolex for me. I’m yet to own one, but something like a vintage Rolex is a true collectors item. When properly maintained, something like this vintage Rolex watch on Bob’s Watches above (called the Oyster Precision ref 6426) offers a precise reading for many years of wear, meaning it’s a great investment. It also boasts one of Rolex’s most iconic features, the Oyster case, which is known for its waterproof capabilities and overall durability. You can change the bracelet with a leather strap too, so it makes it a highly sought after piece, but be sure to keep the original safe.
As a vintage item, this Rolex also carries with it an incredible history that will add immense character to any outfit. Depending on the condition of the individual watch, something like the reference 6426 can be found with an affordable price tag that will appeal to collectors of all budgets, however References that offer original parts, such as the dial and bracelet, command a higher price on the pre-owned market. This is a really important factor if you’re buying new – keeping all the original parts as well as the box and papers means you can sell it for a lot more in the future, they’re important! Understanding the vintage Rolex market shows us just how much of an investment their watches truly are.
(Photo Credit – Pierre Vogel / What-To-Wear.com)
Now getting to jewellery, it can often be hit or miss. I’ve learned that unless jewellery (in this case a bracelet) has a designer name attached to it, it doesn’t hold any value and often ends up only being worth the metal and jewels it’s made with. If you have some vintage pieces however, they can command a higher price tag when you sell them, but this varies greatly on the demand and the age/condition of the item. Tiffany is a brilliant brand to invest in as you can always sell their jewellery due to the name association, however with their retail prices costing a small fortune, it’s not always worth it and would need to be pieces you held on to for decades.
One bracelet that is worth investing in however is the Cartier Love Bracelet (above). Can you believe this design is almost 50 years old? It holds its value too because the price increases every single year, so you can often sell them pre-owned for a very good price. They come in numerous styles including white, yellow and rose gold, encrusted with diamonds or just minimal, so there’s a large selection to choose from. I’ve done some research on the Cartier Love Bracelet too and everyone seems to be in agreement that if you want a designer bracelet, this is the piece to choose for the value and the fact that it’s the most sought after bracelet in the fashion world.
A final tip, like I explained in my must have designer accessories post, is always opt for a classic piece. If you want jewellery to enjoy and wear for fun, that’s fine, buy as you wish, but for re-sale purposes in the future and having something that’s an investment because you can wear it with anything, always go classic. Diamond tennis bracelets are a good idea, nothing too fancy and over the top for watches etc, always keep it simple. That’s the rule I live by with my bags now too, it’s easier to style them with as many outfits as possible and they wont be dated in the future. What’s your opinion on luxury wristwear? Is it worth the investment for you?
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A Yumi Floral Dress With A Celine Belt Bag
I’m so pleased to be able to share with you more summer photos! These were shot a couple of weeks ago when we had the heatwave as now it’s gone quite cold again unfortunately. I do still have another look to show you though which was taken in the glorious sunshine! That will be going live in just under a week, so stay tuned for that.
While I’m typing this, I’m in the middle of packing for my trip away with Adam. We booked a late May short break away to celebrate our 10 year anniversary last month and it’s to a place we have never been, so I am hoping it’s fun! I will be sharing photos from the trip at some point, but it’s not a working trip so I’m not sure what I will be doing when I’m there. My aim is to take an actual holiday for 3 days and not worry about any work, but we will see as that never usually goes to plan, ha ha.
For this outfit, you might remember this Yumi Floral Dress as I got it on holiday in St. Ives two years ago! Do you recognise the print? We shot the photos last time on the beach (see here) and I thought it would be nice to wear it again as it holds so many lovely memories – it was the holiday where Adam proposed to me. I decided to pair this Yumi Dress with my RAYE Sandals and then finish it off with my Superdry Sunglasses, my Celine Belt Bag again, my Daniel Wellington Classic Petite Watch and my Swarovski Crystal Dust Bracelet. I’ve really been loving these accessories recently. Once I get something new that I love, I tend to wear it regularly until I get something else.
I don’t know what it is about the UK, but whenever we get sunshine, everyone comes out of their shells and is so happy. I think it’s because it’s a rarity here and we don’t often get hot weather. I’ve heard that as a nation, even though we are one of the most polite, we are very grumpy and I think the weather has a lot to do with that, ha ha. I’m hoping it’s going to be warm again soon as I love doing summer photoshoots the most. Not having to worry about the rain is ideal! If you missed my previous outfit featuring a Superdry playsuit, check it out. I was told the photos look like they were taken somewhere more exotic and warm and when I look at them, I think they do. Anyway, let me know what you think of this Yumi floral dress and the outfit in general in the comments below. As always, you can shop the pieces at the bottom of this blog post. Lorna xx.
15 Floral Dresses For Summer
What I Was Wearing: Dress – Yumi Bag – Celine Shoes – RAYE Sunglasses – Superdry c/o Bracelet – Swarovski Watch – Daniel Wellington
