14 sort of useful and fun things being hypermobile is good for

1) Reaching the bottom of a Pringles tube.

2) Shaking cocktails.

3) Reaching into your rucksack while it's still on your back.

4) Freaking people out for fun on public transport.

5) Baton twirling.

6) Back scratching.

7) Fitting onto packed tubes.

8) Seeing what's going on behind you.

9) Picking things up with your feet.

10) Turning things around in your hands to be the right way up when you're carrying too much.

11) Moisturising hard to reach bits.

12) Draining Pasta. Fancy pan-to-colander work.

13) Getting out of small spaces.

14) Turning a steering wheel.

5 awkward hypermobile situations- Part 3

So part 3 of this series focuses a bit on things that other people do that cause stress. And stress in general. I've had number 5 and 4 happen to me recently, so here is my rant for the week:

1) Trouble eating? Jaw dislocation and pain in hypermobility is not uncommon. Sitting at work or having lunch with friends or even eating dinner at home on the sofa- there is no ideal situation to have something violently click in your mouth and the food to fall out. Sadly yes, this does come from experience. Who doesn't love half-eaten digestive biscuit in their lap in a busy office?

2) Bags. Now, a lot can be said for deciding to use a small, lightweight, sensible bag. Good for your back, easier to carry, less chance of injury. However it isn't always possible and girls in paticular LOVE their large bags. I'm thinking a lot about suitcases here. I have had some true nightmares with them. Dragging for more than 1 minute causes bad shoulder pain, picking them up causes bad shoulder pain, forcing them shut causes, (yep you guessed it) bad shoulder pain. Relying on the kindness of strangers or your friends to lug your bag down the stairs at a train station becomes a key part of travelling. That or just taking no clothes away with you and hoping for the best.

3) Lifts. The hypermobile community and stairs are not the greatest of friends. Having ankle, knee and hip issues means stairs are a big problem in some cases, particularly massive flights of them. So you opting to use the lift makes sense, and you might when planning ahead think this will be fine. However, where is the lift? Why is a ten minute walk away? Why is it out service? I have to really let the people with buggies go before me don't I? It's surprising how hostile people with 'life entitlement' can get.

4) 'Would you like a photo madam?'  Limping, using crutches, being in a wheelchair, having to receive help. Anyone who has ever used an aid in public without a cast to explain things, or needed to use a wheelchair will probably have dealt with their share of staring strangers. It becomes it increasingly difficult when you're already frustrated to not vent your anger at people who gawk at you. Maybe we should carry around Polaroid cameras for people to have pictures?

5) Show us a trick then? Explaining your condition to someone and taking time to educate them to be asked 'ohh! Can I see a party trick?' is enough to set even the most patient person off. Not taking a frankly aggressive tone when you explain that NO you won't start bending your joints and causing yourself pain and possible dislocations just to show off, can be quite the feat.

This blog now has it;'s own Twitter feed! I wanted to make a profile for it where I can concentrate more on sharing relevant stuff. You can connect with me @ChronicHealth1 for the blog and for further hypermobile musings and lots of talk about food @laurenrellis

5 awkward hypermobile situations- Part 2

A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

My hypermobility care mission: an update

This is a short post, but I think it goes quite well as a follow from my first of 2015. A big part of handling illness is education. Teaching yourself and taking advice from doctors helps you to control and look after yourself better. I constantly learn new things, and I did promise myself I would put my condition top of my priorities this year. This has made for a fairly busy January, but a very productive one. It's been busy in other ways too, I haven't just been hanging around hospitals and clinics thank goodness. I have had an anniversary, holiday planning, lots on at work and have tentatively gone back to running. I will write a post on this soon.

I went to see a dermatologist about some bleeding under my skin on my foot, and we came to conclusion it was done at a wedding by some very uncomfortable shoes about a year ago. Typical, the shoe saga strikes again! It's becoming a constant problem for me, but that's for another time. This is apparently now a stain rather than continuous bleeding and she wasn't too concerned by it.She wrote to my GP who then suggested I have some bloods done.

I had my full blood count and an ESR test done for the first time to my knowledge. The ESR test picks up on inflammation in the body and can therefore detect infection. It can also be used to test for autoimmune disorders and connective tissues diseases. My GP predicted this would be higher than average and flag up something, but it was totally normal. The mystery continues. All my bloods were normal actually, and my clinical colleagues assured me I am a very well person on paper. It's a shame this doesn't filter through to my general feelings!

One particularly exciting thing has happened. I did some research into clinics around London that see hypermobility and EDS patients. I emailed a doctor who sadly only specialises in children now, but she works at UCL and pointed me in the direction of a clinic I could potentially self refer to. She was extremely helpful and proved that initiative pays off. I also pushed for a medical genetics referral, which my dermatologist backed me up on and it actually got done. Success! So I was referred to Northwick Park Hospital in London to the genetics team and am now waiting an appointment.

I will report back on what this appointment is like, as a few people on Twitter have mentioned they are keen to be referred too.

That's it for now!
Happy weekend everyone.

5 Things patients of chronic illness do...

From writing this blog, being a patient myself and immersing myself in online and hospital based communities, I have come to learn that there is much more to chronic illness than the condition itself.

1) Educating the educated

Chronic illness can be complicated, and particularly with under-diagnosed/ rare diseases, doctors will often have a gap in their knowledge. In my experience, and I know I am not alone, I often have to give a detailed description of hypermobility syndrome and the symptoms that come with it when I get referred to a new doctor. Obviously specialists will know what they're talking about (you hope) but it becomes the norm to explain your condition to doctors and for them to learn from you.

2) Adapting

You learn to be chronically ill in all situations. On the bus, at work, in the supermarket, looking after kids, having a shower. Every situation becomes adapted to you and your condition, and the adaptions aren't always good. It is however, a massive feat to carry out simple tasks while having a bad day, particularly living with chronic pain. The term 'chronically awesome' is no lie.

3) Forming communities

I didn't know that patient communities existed before I got unwell with hypermobility. Even then, it took me ages to realise there were Facebook groups, charities and forums bursting with information and support. You just type 'hypermobility' into the Facebook search bar and you're met with an abundance of groups and pages. It seems that when people have to really fight something, they fight together. It's been really interesting for me to grow a small community on Twitter off the back of this blog and my timeline is often littered with new information. You can join me on Twitter: @laurenrellis or on Instagram, where there is also a lot of unexpected 'spoonie' action! Larellis9

4) Learning and absorbing

To educate others, patients themselves have to be educated too. This is why communities and the great work done by charities like Ehlers Danlos UK and the Hypermobility Association are so important. Knowing the basis and learning about conditions is half the battle in the beginning. I was letting physios treat me for damaged rotator cuffs, even after they diagnosed me as hypermobile, because I just didn't know anything about it. It's surprising just how much patients learn about themselves and the world of medicine. Surprising in a really, really good way.

5) Generally being heroes

Ask anyone, it's bloody hard being chronically ill. It's hard having a condition that's not widely understood and without a straight forward cure or treatment plan. It takes a strong person to handle these things and they often make a strong person too.

5 awkward hypermobile situations

5 situations I have faced with hypermobility.

5 situations that have been awkward. 

5 situations that I fully expect to happen time and time again. 

1) The public dislocation

 'Hi there, can you come pick me up? My hip has come out and I can't move.' This is a conversation I have had on the phone a fair few times. There you are, just going about your daily business, when suddenly your leg gives way and you can't continue. Not so easy to explain to passers by why you are awkwardly half-perched on a wall with limbs at strange angles. It's even less easy to explain this to colleagues when they watch your manager half carry you into a lift.

2) The moaner

Spending a great deal of time with someone who moans constantly about even the tiniest twinge of pain or treats a common cold like the plague can be awkward and VERY annoying. Deep breaths. It isn't their fault. They don't feel ill often, give them a break. It's easier said than done though. What you really want to do is bellow directly in their face 'YOU DON'T KNOW PAIN' and then just get back to your day, but of course hypermobile beings are of the thick skin variety. Most of the time anyway.

3) The 'phoning in sick' conversation

'Yes it is my joint again. No I don't have a cold.' Getting an employer who understands or sympathizes with a condition like hypermobility is tough going. The idea of phoning in sick because you have unbearable pain for seemingly no reason can be demeaning, awkward and frustrating.

4) Getting undressed

Having to ask for help getting jumpers, sports bras and sometimes even jeans off has become a normal part of my life. It's more often the tops, but being found in bathroom tangled in various clothes with the shower running and a shoulder half out of it's socket is all fun and games until it really isn't fun and games.

5) Really nice clothes, really weird shoes

Let's face it, when you have dodgy hips and ankles and are prone to knee pain, you can't totter round in a pair of Louboutins looking fabulous everyday. Comfortable shoes are everything. Receiving some strange sideways glances when your lovely dress is teamed with sketchers is absolutely worth it to be able to walk home at end of the day without an episode of 'we need to stop. Something's come out.'

If you have hypermobility and or EDS, come follow me on Twitter. I tweet resources and bits of my medical story. I tweet about other stuff too! @laurenrellis

2015: The year of the invisible illness puzzle

Anyone who has read this blog before (and if you haven't then welcome) will know that I've spent a lot of time wondering what's wrong with me. That's fairly normal for anyone who has an invisible illness. Having nothing noticeably wrong means you can't point it out to a doctor or a friend or your mum and say "look at this, this is the problem."

There are so many pieces to put together when you are essentially self-diagnosing. A lot of invisible illnesses aren't properly looked after, especially in the NHS. It's hard to get a referral, hard to get a follow-up, hard to find a doctor who knows enough to truly make a difference. It's hard full stop.

There are thankfully a lot of resources out there, which means the many people who are piecing together a puzzle have some help. It's not always the best way though, but you do what you need to. After another confusing medical appointment last week which left me with more questions than answers, I decided that 2015 has to be the year. This has to be the year it happens. I need to get answers. 

It's really difficult to face up to things sometimes, particularly when it's something like health. Your health essentially is a belonging of yours. It has a mind of its own and if can rule your life. For people that are much more aware of their health, not knowing exactly what the real issue is can take so much away from life. 

For example, I have bad joint pains, urinary tract issues, headaches, sight problems, dislocations, bad bruising, poor immunity, and now bleeding under my skin. Hypermobility- diagnosed. Ehlers-Danlos- as good as diagnosed. But what else? The doctor I saw this week was unsatisfied by what I knew. He didn't think that was it. He was confused and needs assistance from another doctor. Another referral. Maybe the 20th. 

So now the waiting game. Again. But I'm not satisfied with waiting. Instead of waiting, I'm going to get back into heavy research, use my fortunate resources (doctor colleagues and friends) and go back to all of those who have examined, prodded and poked me. I think 2015 is time for some clarity. Everyone who knows how I feel, and there are plenty of those people, will probably have had similar feelings when the new year reigned in. Time for change. Time to try and make life more comfortable, less painful and healthier. I hope those who feel less positive can change that. I hope time. Particularly time that is the next 12 months, can change that. 

Pilates and hypermobility

Pilates is the gym class of choice for hypermobility. That's a massive sweeping statement, as everyone is different and some won't be able to do it at all, but when you ask at appointments or physio sessions, it's always the recommended one. I was always keen on being swept up in the yoga craze but my physio told me I would make everything a million times worse for myself if I did. I'm not sure if it was me being stubborn about the condition stopping me from doing something, or just that I found other things to help, but pilates has passed me by for ages. Until now.

Three weeks ago I finally took the plunge. Wednesday is now, and shall be known from now on, as pilates day. I'm hoping to keep it up for as long as I can because it really is helpful. I go to the gym and do all manner of exercise, but I never feel as good as I do after pilates.

The ache the next day is the good kind. The sort of 'I know this is doing something positive' ache. The first time I went I was slightly alarmed at the cracking and clicking noises flying out of my joints and the fear kicked in. I did have shoulder pain, as I do every time I put pressure on them, but it's lessened with every session and I am confident it is doing me the world of good. I feel less stiff and my joints the next day feel stronger, which I am hoping will be a long-term change.

The instructor focuses a lot on taking everything 'slo-o-o-o-w-l-y' and 'straightening yourself one vertebra at a time.' This attention to movement actually taught me a lot about how much I rush my joints. I can do so much more and have a lot more balance when I take every move extra slow. It's also very relaxing, which is good for anyone.

If you often feel like you need a good stretch and to click out a few joints, give it a go. I think my weak upper body was a bit shocked at first and I did have to hold back on a few positions, but my fourth session will be the one where I try everything.

You should obviously mention it to your instructor before you start, and a good one will ask if there is anything they should know. They don't need to be professionals in hypermobility to tell you to take your time and you know that anyway.

Two levels run at my gym, and I think that beginners will suit me for quite some time time. The general feeling among my joints after class two was 'WE LIKE THIS.'

A few terms like 'downwards facing dog' were thrown out there which I thought were exclusive to yoga, but I can just about handle them. Don't be scared to try it out. You can always stop halfway through if you feel like it's doing more harm than good.

I'm going to try a few different classes out across London in January and I can see a love affair forming in my mind already.

Comfort- as told by hypermobility

Being comfortable with hypermobility- a pretty enormous feat for most. My last three really bad flare ups reminded me just how important it is to be comfortable. Sleeping, sitting, working, exercising- all of these can be a real struggle. It's important to spend time finding out exactly what helps you and your condition the most. For me, it's the things below- A comfortable bed, a big, squashy chair with good support, something to do to take your mind off it, like reading, hot water bottles and deep heat to relieve sore joints and of course a good old mug of tea.

There are lots of 'self-care' tips out there for hypermobility sufferers, and comfort is a very important part of this. As much as sleep hygiene, being healthy, doing as much as exercise as you can and eating well are important, so is being able to lay down at night and feel you can get proper rest.

NHS choices provide a few important comfort hints, including footwear, applying heat and resting. Get comfortable! As weird as it sounds, because of course you make yourself comfy, not many people put enough thought into how they can improve it, particularly sleep. Winters are for comfort eating, drinking and snuggling, so treat your joints to extra comfort too.

Learning to grin and bear it

Those who live with chronic pain know that it isn’t about stopping it, it’s about learning to manage it. Pain management is no easy feat. It can be a long, daily struggle that takes over life. Life is pain and pain is life. This is not exactly a mantra that anyone wants to live by. The thing with pain is that it can consume you. It’s important to remember that pain is a part of life and although at times it definitely can, it doesn’t rule you. A lesson all those with hypermobility syndrome, Ehlers Danlos, fibro and other chronic conditions learn.

Those who live with painful conditions, especially ones where treatment is difficult to receive in general, it becomes a case of how you work around it. When I first got symptoms of hypermobility syndrome, it was painful to breathe. Shallow breathing became my norm, because I just learned to deal with it. Working full time was hard, not knowing what all this pain was and being referred to people who ultimately, by no fault of their own, couldn’t help me. One thing I remember most clearly from the first year, was learning to grin and bear it.

It took a while. Lots of painkillers were consumed and injections injected and examinations carried out. It interrupted work and put me in a low mood and probably made those close to me think I was mad, or attention seeking, or a hypochondriac. You know how it is. Soon though, I stopped using my right shoulder as much as possible. No more bags, no more carrying shopping, no swimming, no running, no stretching. The less movement, the less pain. I breathed differently, typed differently, slept differently.

For some people, the pain is in more than one place. I only had to deal with one body part at a time when the pain was at its worst and I am so thankful for that. I don’t know  how others carry on when they are in pain practically all over. They do carry on though. As much as you can, you get on with it. I remember thinking of the pain as a tag-along. Obviously unwelcome, but soon it just existed. Sometimes there, sometimes (on good days) not there at all, sometimes really painful, sometimes not too bad.

I think you do learn to exist alongside it. I'm not saying you make peace entirely, but you do what you can to still be you. Some people may not be able to carry on and be as active as others, but I'm sure they do as much as possible. I'm not sure if you can actually overcome pain, maybe some people think you can. But I do believe, to some extent, sometimes, you can grin and bear it.

I worked through my worst time, not always all day and sometimes I would leave to have appointments and see doctors, but I did go in. I eventually made it to my favourite music festival (thanks to very strong friends who could lug my stuff as well as their own), went on holiday and moved on with my career. I used to wake up and get so angry about the stupid, throbbing pain in my shoulder and back that I didn't even think about normal everyday things. But you come a long way when you're up against it. The body can still support you, even when it seems to be doing all it can to go against you. Now, most  of the time, normal things like dog walking, holidays and commuting and working aren't affected by pain. The times they are, I like to just lay on the floor and make some jokes until the episode subsides. I obviously move to the bed if it lasts too long though. Comfort is king.

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.