6 ways you know you have an invisible illness

1)      You wake up in the morning looking and feeling fine. All is going well and you think this might be a good day for you. A day where you can get things done and feel like a normal, functioning member of society. Half hour later you are falling apart, things hurt for no logical reason, you can’t quite make it into the shower and you consider putting painkillers in your tea. You still look fine though, and you can't decide if this is good or bad.

2)      You approach inanimate objects with an air of extreme caution. You can’t just throw yourself onto a sofa or jump into bed because who knows what the consequences will be. Waking up in the mornings on a beautiful day and throwing open the curtains is far too dangerous. Your shoulder could come out of its socket and ruin the whole day. Sometimes you also need to mentally prepare to shower. It’s not a decision to be taken lightly.

3)      You experience deep and confusing emotions If you feel well enough to let your hair down and have a few (or a lot) of drinks at the weekend. While most hung-over revelers wake up on Sunday worrying they have drunk-texted someone they shouldn’t or accidentally phoned their boss, you wake up too scared to move. Who knows what damage you might have done while having fun? You have to slowly and carefully make your way to the kitchen to re-hydrate and eat all manner of carbs. If you have got away with it you then begin to feel invincible and consider doing other activities that you normally avoid before realise your head hurts too much and you go back to bed.

4)      Explanation exhaustion. Telling people who aren’t aware invisible illness exists or can’t quite comprehend them becomes tiring very quickly. You may even have devised a short, concise script of what to say when someone asks why you were off sick or why you can’t get out of your chair.

5)      Planning is something you have to do with great care. You never know when symptoms will flare up and mean you can’t go on your day out or go visit your friend or even go for dinner. Plans are for days when you feel good and you know your body will last the duration. You also have to ensure your friends and family understand your condition so they can’t hit you with ‘but you LOOK fine, maybe you can come for a while?’ 

6) You often have to face the injustice of feeling hungover when not so much as a drop of wine has passed your lips. Waking up with a raging headache, joint pain, shaking, needing painkillers just to face the shower. All of these are followed by the overwhelming urge to shout 'WHY ME? WHY? WHY?' but instead you just get on with it and start your day the best you can because you are a God damn warrior. 

5 problems hypermobile people encounter

1)      Being told “You don’t look unwell”

Probably the main problem with hypermobility syndrome is that unless you are in a sling, on crutches or in a wheelchair, you probably look like you are physically fine. Even when people mean well, being told you look fine when you feel the complete opposite is probably the most frustrating comment. It should be socially acceptable to shout ‘IT’S AN INVISIBLE ILLNESS’ directly at people who assess you entirely on how you look. Or just hold up a sign when the shouting gets old.

2)      Informing doctors what hypermobility syndrome is and that you aren’t imagining it

I've heard many stories and read accounts of lots of sufferer’s health care since starting this blog. A common grievance that comes up time and time again is that you have to continually explain to a string of doctors, sometimes even specialists, what your condition is. Those with Ehlers Danlos will often hear doctors say they've ‘heard of it’ but will then realise that’s where the knowledge ends. I've had this problem myself many times and have even had my GP giggle delightedly at my ‘backwards’ arm and tell me what a great party trick it is. Er, that’s wonderful, but please refer me to someone to stop the pain yeah? Someone who CAN ACTUALLY help please!

3)      Suddenly putting a join out and realising you need help

I was once walking home, in the cold and dark, from visiting family when my hip came out for the first time. I had no idea then that I had any sort of condition, let alone that I was hypermobile. I had to call my parents for help and explain I needed a lift home because I literally couldn't walk. The only thing that showed up on the x-ray was some swelling, which was never followed up. This happened again recently when I was at work in a busy diabetes clinic and had to stop in the middle of seeing a patient to say ‘You’ll have to excuse me, but my hip is out of place.’ It’s not ideal. It’s also quite hard to approach someone in public to help you as they will most likely look at you like you’re an alien and bemusedly lead to you to a bench.  It’s also always fun and games when you wake up having knocked something out of place in your sleep and explain to your friends while you are laying on the floor, then ask them to brush your hair for you.

4)      Doing everyday household tasks

An obvious one, but this is so unbelievably annoying. My shoulders are my worst behaved joints and on bad days basically all normal daily tasks become a massive pain (literally) in the neck. Hoovering? No. Changing the bed? No. Washing your hair? No. Peeling vegetables? No. Carrying anything that weighs more than about 5 pounds? Absolutely not. I recently spent a Saturday lying flat on the floor smelling profusely of Deep Heat and applying heat patches to my back while my friends made me tea and assured me it would ease off soon. All I needed to do was shower and get dressed. Out of the question. Oh life.

5)      How many painkillers have I taken?

More organised and efficient hypermobile sufferers will probably be much better with medications than me. As I often am lucky enough to go by without pain relief at the moment, when I do have a bad day I remember just how tough it really is. You basically become a walking-talking albeit very drowsy pill-popper. When I got my first big flare up I spent most days counting down the time until the next pain killer, then forgetting which I could take and trying to avoid sleeping on my desk, on the floor and on the stairs. Anywhere that looked a bit like I could lay really. 

On Hypermobility and Ehlers Danlos research…and what happens next

You don’t know me, but my name’s Dan. You probably know my girlfriend though: about yea high, brown hair, goes by ‘Lauren’, writes about hypermobility.

Anyway, I asked if she’d mind if I wrote a guest blog about medical research currently ongoing into the 24-hour party that is Ehlers Danlos Syndrome and about communication.

London’s Charring Cross Hospital is running a 16-week trial for patients suffering with anterior knee pain, while at the Hypermobility Clinic at University Hospital there is an ongoing genetic study run by, among others Professor Rodney Grahame.

Meanwhile at the Hospital of St. John and St. Elizabeth, the Hypermobility Unit is conducting a project on understanding the onset or triggering of symptom.

The other thing that’s almost as important as the research itself is how the results of that research are communicated afterwards. Fortunately, in the era of Facebook, Twitter, Google+, Whatsapp, linkedIn and the myriad other social networking platforms that seem to spring to life almost every day, the number of communication channels has never been higher.

 This is to say nothing of the hundreds of bloggers – just like the one reading this over my shoulder as I type (she knows how much that bugs me) – writing and sharing information, experiences, strategies and support.

Ehlers Danlos has affected my girlfriend’s life in a pretty profound way; mine too actually, ‘cause now I have to carry all the shopping. And in the early days it was made even harder because no one from GPs to A&E doctors seemed to know what the condition even was, much less how to mitigate and treat it. It was over a year before she was finally diagnosed with EDS, a painful and frustrating year that didn't need to be so much of either.

I don’t need to tell anyone who has EDS that it’s not a widely known condition. What happened to my girlfriend isn't an isolated case. Out there now are people suffering from they-don’t-know-what because even a lot of doctors aren't aware of it. Even worse than that, the Observer newspaper was saying the same thing almost 15 years ago.

That’s why effective communication is so vital, both for doctors and people who have the condition. So that in another 15 years, newspapers aren't still writing that “[EDS] remains largely a mystery and is frequently overlooked or dismissed by doctors.”

The world is a lot smaller now than it was, the internet has seen to that. Now doctors and researchers  access work completed thousands of miles away by people they've never met instantly. Because who’s to say that the results at the Hypermobility Clinic or at Charring Cross in London won’t spark an idea in someone in the United States, Japan or Australia, or anywhere else?

The tools are in place, they just have to be used.

Travel Survival Kit- Hypermobility can't clip your wings

Who doesn’t love holidays? What should be an exciting little stint away in the sun (or snow, if you’re that way inclined) can turn out differently when you have some extra baggage. Carrying around an invisible disease like hypermobility syndrome is stressful, painful and often off-putting.

Most sufferers will have there home set up in a way that means they can get themselves comfortable, access things they need easily and not to have to worry about coming unstuck in an emergency. “I need to be picked up off the floor, my hips has come out and I can’t move.” Happy holidays everyone!

I’ve done a fair bit of travelling since I was diagnosed and can remember dreading the first plane journey I did PD (post-diagnosis, for fun). I had just about got used to sleeping without being woken up by extreme shoulder pain and started worrying about different beds and coaches and plane seats and train journeys. It’s not fun, but you realise you just can’t help it. Most savvy people will pack their painkillers and so on, but if you’re going somewhere a bit unconventional or backpacking, there’s plenty of objects for your survival kit you might never have imagined.

Three years and I am happy to say I flit away without barely a second thought now. My pain is well controlled, which is very fortunate and helps, but I now have a hit-list of important joint crime-busting items.

Cotton wool- This sounds weird, but if you are travelling with a rucksack and you know you’ll need to carry it a fair bit, buy yourself a few of these and put them under the straps. They’re the perfect cushion. I have a travel cushion, but it's awkward to carry and I don't find it that comfortable after five minutes, so don't bother with it.Also cotton wool is SO handy, for like nail varnish emergencies and such. You can pick them up for about 40p so it doesn’t matter if you chuck them.

Deep heat and freeze- Probably obvious to anyone who has hypermobility. Our muscles work much harder to pick up the slack from joints so when the aching it starts, it really starts. I find only the Boots brand really helps me, and others I have spoken to about muscle pain relief have always had a preferred brand. Take it with you. I forgot mine when I went to Thailand and couldn’t find anything nearly as good as what I would use at home.

A big thick jumper- The bigger the better. Hopefully you won’t need to wear said jumper on your lovely sunny holiday, but if you can fit it in the suitcase, I recommend. You can fold them up to add an extra pillow, lay on them to cushion your back, put them between you and a rucksack, rest them around your neck on planes or just sit on them when you need something soft. Jumper-pillow-cushions have been a lifesaver for me at festivals over the last five years. Hotels often only provide one crap pillow and if you’re in a hostel you might not be able to get another. Also, if you do get cold…

Massage balls- They look a bit like colourful sea creatures. You can get them on amazon for about £6 for three and they are definitely worth it. They’re also small so you can chuck them in your handbag. Hotel beds and particular hostel beds are not always forgiving on sore joints. All you have to do with these is stand against a wall or sit up straight on a chair with a back and roll the ball around. If you get particularly good at it you can even get knots out.

http://www.amazon.co.uk/PhysioRoom-Spiky-Massage-Stress-Reflexology/dp/B005LJVREI/ref=sr_1_4?ie=UTF8&qid=1411139373&sr=8-4&keywords=back+massager+ball

Don’t forget your trainers- Earlier this year I was in Paris with my friend and we walked miles and miles. I packed a nice pair of shoes for looking nice and wore dolly shoes to the airport. Two days later, there I am in a Parisian McDonald’s sitting crippled over some chips and a coffee. Never again will I not take trainers away with me. Even though I had been untroubled for weeks before this, I was troubled for weeks after just because my shoes didn’t support me properly. It was even warm enough for the nice shoes anyway. Le sigh.

I spent last week at a music festival in Croatia and spent the last three nights using a big hoodie as an extra pillow. When back ache calls, you gotta answer with something. Hypermobility is a pushy illness, but there is plenty out there to help shut it up. 

Oh and Croatia by the way, is BEAUTIFUL. 

Invisible illness: Support is so important

Having hypermobility can mean very different things for different people. While many people who have hypermobility have no symptoms at all, those who have hypermobility syndrome can lead a debilitated and painful life.

This is one end of the spectrum: 22 year old Alex tells of how hypermobility is currently ruling her life:

-Migraines, brain fog, inability to concentrate, loss of time/zoning out for minutes/hours.
-I struggle to complete tasks, work or periods of study. I would not be able to maintain a job or complete full time education. This is because of mental fatigue or 'brain fog'. I lack the concentration to complete even the simplest of tasks and I have a hard time with my short term memory. I can never remember whether I took my medicine, or if I ate at lunch time so managing my own condition can be difficult at times.

Alex doesn't look unwell, which often contributes to the battle

-Having a family member assist in helping me out with everyday tasks, finances, taking medication, managing therapies and appointments, reading emails and post is really helpful as there are times I'm not able to do this for myself. I struggle with verbal communication, I find it hard to maintain or keep up with conversation or explain my point and sometimes  understanding what others are saying. I need someone present with me at appointments or if I go out to help me with communication and traveling.

Sadly Alex is most definitely not alone in feeling this way everyday thanks to her condition. Having your ability to work, socialise, take care of yourself and be dependent in a way most people wouldn't give a second thought to taken away can be truly horrible.

HMS can strike in a very different way though, as it doesn't always cause a sufferer to not be able to work or carry out normal tasks. My end of things are quite different.

I am 24, have a full time job, socialise regularly and travel often. I still suffer with similar problems to Alex, but in a different way. Brain fog is definitely an issue. Sometimes at work my head clouds over and I forget what I am doing, or even who I am talking to. My short term memory can be awful at times.

Sitting at desk is like having a daily mortal enemy. I have to constantly stand and then sit and shift and move around because my back and shoulders despise it. I get extremely tired if I have a night out, which is worsening as I get older (as are hangovers) and really noticeable. Sleeping can be quite uncomfortable and I often wake up in a pretzel like shape with my shoulders out of place, so mornings aren't amazing. My muscles sometimes pull to the point where I have to limp even from the slightest exercise, whereas other times I can run, do fitness classes and swim as much as I like. Despite these things I can still go about day-to-day life largely untroubled.

You learn to adapt when you have a chronic condition. You just get used to the symptoms and learn how to manage them better. It’s when you have symptoms to the extreme, like Alex, that things become different. When your life is basically taken away and replaced with a full time fight, you need the right support system to pull through and stabilise yourself.

The problem with having a condition like HMS or related condition EDS (type 3 is the hypermobility type), is that not enough medical professionals understand too few people are aware that they even exist. Even those who do know and are close to a sufferer can try their hardest to support them, but it’s not always enough. People need education, training  and a better awareness. There are of course amazing carers everywhere, but an invisible illness comes with an extra difficulty: How can you help something that doesn't seem to be there?

Alex wants to get her life back on track, but she is constantly being blocked or delayed. These things will probably be frustratingly similar to fellow chronic illness fighters:

- Many support aids are needed for not just my body but for around my house and are quite expensive. The estimated cost of the aids that I need have passed the £1000 mark.
- I don't have an income other than the pre-assessment ESA rate, I should have had an assessment in May to determine whether I need more support but sadly they are experiencing around 26 week delays
- I have also applied for PIP to help cover the cost of living and to buy supports and appliances to adjust my home to my condition, the estimated wait time to hear back about a claim is around 26-48 weeks
- I have to consider the costs of prescriptions when back in work
Not having the supports that I require are preventing me from having independence, I am causing myself further pain and potentially damage.
*More readily available knowledge about getting help with costs for supports or aids would really benefit me. When I purchase these aids and supports I will have more independence, I will be better able to manage my condition and I will be able to get back into part time work at the very least.

Seeing medical professionals with little to no knowledge of the illness
- Unhelpful with a course of treatment or pain relief due to lack of knowledge.
- When seeing doctors about non HMS related problems they are sometimes reluctant to treat as they’re unsure what could be a symptom.
- Having to explain the condition to a medical professional when seeking treatment.
- Having spent so much time at the doctors or in hospitals since childhood with a multitude of complaints, at times I feel like I'm not being taken seriously and appear to be a hypochondriac.

This causes me anxiety, stress, and over a long period of time has contributed largely to depression. The smallest of stresses can exacerbate my symptoms and make me more susceptible to flare ups.

 We need more awareness of the condition, to have the necessary NHS staff educated on the condition, how to identify it and how to implement a treatment plan.

Alex’s frustration is widespread in the community of rare and invisible illness. I see it every day on social media, where support systems have grown as people come together to share experiences and help each other with diagnosis. Sometimes I read things that alarm me on Facebook groups (simply search for hypermobility and you will find many) and on Twitter, of course self-diagnosis isn’t the best way to go, but the majority of messages and advice is brilliant and you won’t find it in many places.

The associated charities are so motivated and really good at raising awareness and providing educational resources.

The Hypermobility Syndrome Association: http://hypermobility.org/

Ehlers-Danlos Support UK  http://www.ehlers-danlos.org/ 

There are also books available, such as A Guide to Living with Hypermobility Syndrome by Isobel Knight, available on Amazon.

You should also not give up after one failed trip to a GP, or even specialist. I had to see my GP about six times until I got a correct referral to a team that might be of real help to me.

The support for HMS and EDS is nowhere near perfect, and in many cases not even helpful at the moment. It is so important that awareness and fundraising continues so people like Alex can get somewhere, and do simple things like go out for the day for friends, or look for a part-time job. Hopefully the future will be brighter and better and importantly, more visible. 

Collagen- more important than you think

Before I found out I had hypermobility syndrome and began a never ending biology lesson, I thought collagen was just a cosmetic thing. I knew about ‘collagen fillers’ that you get injected into your face to make lips plumper and wrinkles less prominent. I didn’t have any idea just how important it was in your body or how much my lack of it would impact my life.

When I was newly diagnosed and became aware of the syndrome I started seeing the word collagen everywhere. Probably because I was paying more attention to the word, but also because actually, it’s a big part of being a human. I remember buying a lipstick about three years ago that said it was like ‘magical cherry colored collagen’ and made your lips look like you may be distantly related to Kim Kardashian. This then made me think that my joints must be all shriveled and fragile looking and definitely not anything like Kim K.

Collagen is actually the most abundant protein in humans and makes up 30% of the protein content of the body. It can be found everywhere, even in your eyes. It is in your gut, bones, blood vessels, skin, ligaments and tendons; quite the popular protein. It’s very important for strengthening those parts of the body and extremely important to skin. Skin gets its elasticity from collagen and when production starts to slow with age, we start to get wrinkles. I guess this the stage where you start buying ‘magical collagen’ products and letting a man in a lab coat inject some into your face and tell you look fabulous.

I’ve often read that collagen is the super glue of the body, which makes sense to hypermobility sufferers, as they often feel like their joints are falling apart because they are lacking in it. The lack of collagen means a distinct lack of strength in joints, meaning the muscles work harder to keep us going.

Millions of people buy into ways of making collagen produce more rapidly when they get older, meaning they can retain a more youthful look. Let’s face it, it would be ideal if we could just inject some extra collagen into joints or buy a nice collagen rich moisturiser and feel all the pains and aches fade away. Since this sadly isn’t an option, it is vital for hypermobility sufferers to strengthen muscles as much as possible. The stronger they are, the easier they will find it to do the extra work. Imagine coming home after a long day and then immediately having to start hours of extra work with no rest or food. This is what it’s like for muscles. Obviously hypermobility stops some people from having the ability to exercise at all, so small, tiny baby steps to start with are just as important, even if it feels like what you are doing is pointless. Trying is half the battle.

My first ever physio, who was brilliant but went on her honeymoon to Hawaii, never returned and is 

probably currently drinking from a coconut, told me that with hypermobility, what you lack in collagen, you must gain in strength. A nice little piece of advice. Someone should make a cushion with the words sewn on or something.

Enemies of hypermobility

There’s a lot to deal with when you are hypermobile. You have to take so many things into consideration before you do simple tasks that you probably start to feel like your joints are needy little people that live on your body. Or just a massive pain in the backside. Either works. You also begin to form strong enemies in the form of normal everyday tasks. The sort of tasks that wouldn’t normally spark a second thought, until you find your shoulder popping out or your hip jarring and completely taking away your ability to move.

My list of hypermobility enemies changes often. For every object or task that I learn to use differently or just stop using, another one appears.

Current top 5 enemies:

1)      The shower. Probably top of a lot of people’s lists. The hot weather means you are more likely to need more showers (something users of the London underground should take on board). Hair washing is hard, right? The reaching up and rubbing your head and trying to ignore the clicking and grinding happening in both shoulders. Let’s not even mention trying to dry hair. Then there’s the body scrubbing and making sure you get every last bit of conditioner out of your hair. Back ache, shoulder ache, wrist ache, neck ache. So many aches. You can’t even really stand under really hot water and let it massage your back

because it’s so unbearably humid. So many shower issues.

2)      Changing bed sheets. This is a mountain to climb at the best of times. It’s annoying and no matter how many times I try, I can never just make it happen in seconds like my mum. Reaching across the bed to put on sheets and then wrestling the duvet into the cover leaves my shoulders feeling tight and angry and generally ready for a few hours sulking. It usually requires a short break in between duvet and pillow covers to sit and contemplate life and massage a joint or two.

3)      Moisturising and sun cream. This is a new one for me. I’m trying to do it every day because apparently it’s good for your skin and makes you look nicer. At first I thought I was winning as I can moisturise my back by bending my arms in mysterious and should-be-impossible ways to reach everywhere; then something clicks or jars or feels like it might fall off. It’s also tiring by the time you get to your feet. Even toes need suncream.

4)      Furniture. Okay, so moving furniture is not an everyday activity, or at least it shouldn’t be if you have hypermobility syndrome. I did some furniture moving and culling two weeks ago and still can’t completely straighten one arm. Some of it was no heavier than my bag I take to work and I even did the bending at the knees thing that health and safety people love, yet I will never move furniture again. My shoulder, back, ankles, wrists and fingers were outraged. My right arm is still a bit outraged and is a constant reminder that I will never work in the moving business.

5)      Summer shoes. It’s hot and no one wants sweaty feet. I have a vast collection of flip flops and sandals and other shoes that are made for sunny days and sitting in the park. Unfortunately when you have hips that are fragile and like to make sudden moved in their sockets, flimsy shoes with little support apart from some sewn on daisies and a buckle just don’t cut it. Since the heat wave set in I have been tripping over and limping because of wearing sandals. All I want is to wear a dress without channeling Lily Allen circa 2005 in trainers.