Staying sane in chronic pain: Having a mental clear out

Chronic pain is a way of life for a lot of people who suffer with it. While there’s a lot of importance in not letting it take over who you are, it’s hard to separate your condition from life itself. I haven’t posted on here for a while, and the reason is that I’ve been increasingly struggling to stay sane in the face of a condition that’s hard to manage and impossible to get a real hold on. It’s not easy to know what to expect, so default feelings turn to worry, worry turns to stress and in time it’s all you become.

This is not a good way to live. While it’s vital to take your condition seriously, and do everything you can to stay in the best health possible, I think the biggest battle is keeping your mind clear and able to function on a normal level.

I had to take a massive step back from everything around me that pointed towards chronic pain, EDS and the illness that’s overshadowed my life for the last few years. I removed Facebook groups from my feed, stopped replying to emails and tweets and moved away from this blog. I concentrated hard on getting a new job, went away on a break with friends, put more time and effort into my other website, and slowly I felt better.

How do you stay sane in chronic pain? How do you keep your mind focused on the light at the end of the tunnel when you can’t see it? I don’t know the whole answer, but I think a lot is about clearing your mind and sweeping aside everything that brings you down. Kind of like having a mental clear out every so often. I don’t want the work I’ve put in on this blog and the community I’ve built online to go to waste, so I will start blogging more regularly again, but I think it’s very important to take some time to try and be you, rather than be a person in chronic pain, and that isn’t always possible when you are surrounded by prompts and reminders.

I was fortunate enough to get away from it all (kind of, we all know you can’t banish pain for a holiday) to an immensely peaceful place and just relax for a couple of weeks recently. I’ve been getting edgy and worried again lately, so in a couple of weeks it’ll be mental clear out time again. I recommend anyone who feels like they are completely drowning to try and do the same. Oh and it’s Friday! So there’s a reason to kick back and take a few deep breaths. Happy weekend spoonies. 

The hypermobile guide to dating

First dates are notoriously awkward for any singleton. But
trying to find the ideal moment where you can surreptitiously slip into
conversation that your joints have a larger-than-average range of movement can
make forcibly shoving tens into your paramour’s hand after they’ve kindly
offered to pay for you seem fairly casual. There are various methods to do
this that never go amiss. Maybe you need a little stretch and your suitor
across the table gets the money-shot as your upper arm bends in parallel with your
shoulders behind your head. Perhaps your yelp will give it away as your hip
pops out on your romantic walk back to the tube station. Or for the more subtle
of you out there, you can always try to explain why it is that you can never
stop goddamn fidgeting.




However, there’s no easy way to tell someone new that you’re
inhibited by your body’s ability to do too much within the first few hours of
conversation. Will they be frightened off? Will they become overly concerned
and insist on piggy-backing you everywhere? These things are hard to tell when
you’re still two relative strangers sipping overpriced cocktails in an
unnecessarily loud bar asking each other where you went to uni and oh my god
are you kidding my best friend went there did you know her it is such a small
world, etc etc.




For some of you out there, it may be easier to, quite simply,
not bring your hypermobility up. But I think it’s essential to mention it. It’s
part of you, it dictates your life and I think the honesty can be somewhat
refreshing. It’s not a call to delve into your life story, but the longer it
goes without being mentioned, you’re missing out on a personal detail that may
even help someone get to know you better.




Looking back, I’ve tended to treat my hypermobility as a bit of
a joke on a first date, and if I’m feeling particularly daring, I’ll start
bringing out the big guns. Read your recipient, of course, but it’s hard for
someone not to be a little bit intrigued by “I can unhinge my jaw like a snake
and I can get my leg over the back of my head” .Because hypermobility can give
you a sexy competitive edge, so shake what yo mama gave you. With caution, of
course, you don’t want to put your back into spasm.




But what if you end up back at theirs? What if they start taking
your top off? What if they see the stretch marks and automatically assume
you’ve already had seven children? Chances are you’re being overly worried and
they won’t give a shit because you’re being kind enough to sex them. If not,
then move on, they’re probably a bit of a dick.




Sex and hypermobility, however, can be a bit risky at the best
of times, even more so when it’s the first time. It may seem easier to pretend
that you were moaning with pleasure and not pain at the way your leg just bent,
but the cold light of morning can be especially chilly when you quietly creep
out of bed to rescue your pants and you collapse on the floor as your hip
goes into post-bang rebellion. Own it. Don’t be scared. Phasing of your new
beau can be minimised by detailing your predicament beforehand and is my
recommended plan of action. Otherwise explaining why you can barely stand as
you awkwardly hobble back into your tights might send them into a spiral of
guilt and you into an Uber to avoid embarrassment.




This is all worst-case scenario stuff, of course. No matter how
barren Tinder may seem, there are decent people out there who will understand
that you can’t walk as quickly as them or you need a little wiggle when you get
up to put everything back in place. You’ll find out fairly quickly whether
you’ve found someone who can support you, both metaphorically and physically.
It’s easy to still feel guarded, occasionally even like a burden, or like your
hypermobility limits potential adventures. Talk about it together. Work out
plans where you can have fun without wanting to die and let them help you. And
for the record, using an intimate hug as an opportunity to stretch your back
out is the best possible way to kill two birds with one amorous stone.




Massive thanks to Anna Hallissey- (@The_Hallissey on Twitter)
for writing this contribution post. 

EDS awareness month- Taking a break from chronic life

So It's been a while since a post appeared on this blog. I've been distancing myself from thinking about EDS and everything that comes with it lately.

I've been having a lot of appointments about symptoms that may or may not be related, so I can't completely forget about it.

As it's EDS awareness month I really wanted to write about stress. Being chronically ill, as this blog has covered many times, comes with enormous amounts of stress. My stress reached a scarily high level recently, spurred on by worrying about my health and waiting for results and doctors to reassure me. Chronic pain is basically impossible to have without also having a lot of stress. The combination of everything you have to deal with is a perfect storm of mental unrest.

Something I feel has become important to me and that I feel people should try if they can, is creating some distance. It's not that easy for everyone, because my symptoms are much milder than a lot of others, but it can be done. I started by hiding groups I had joined on Facebook, and not opening links about sad stories of death and patients suffering or how the new government will impact healthcare. I just couldn't read anymore. I also stopped talking about it. Just for a week, I didn't mention it to anyone at all. I still have pains and aches and massive clouds of brain fog that I would usually moan about but I decided to try and remove myself from being a person with EDS.

It worked. I felt calmer, less worried, less scared and started sleeping a little better. I also stopped googling things related to EDS and checking Facebook groups and Twitter for symptoms that sounded similar to mine.

My geneticist mentioned that a lot of people with EDS become fixated on finding people similar and with that comes more anxiety and more concern about symptoms you might not even have yet. I told her all about this blog and how much I had gained from it, and also about how I felt I was too wrapped up in it.

Her advice of having a short break was completely ignored at first. I basically just continued as I was and carried on getting more and more worked up. I almost cancelled hospital appointments in fear of more bad news and that's when I decided it was time.

'Removing yourself' from something that pretty much runs your life is no easy task, but even if you can do it for a day, it's so refreshing. Hiding social media groups or not contributing to awareness for one week doesn't make you a bad person. Everyone needs a break sometimes. We have breaks from work and breaks from people, so since chronic illness is a full time burden, surely we're entitled to a break of sorts from that too?

Rare Disease Day- The continuing story of Annabelle and Vascular Ehlers Danlos syndrome

I wrote about little Annabelle for rare disease day last year, and as much as there are lots of things I could I have opted for this year, I wanted to do another post. I have followed her story online for a few years now after coming across a twitter account her parents run. There have been a few stories in the media similar to Annabelle's (known as AJ or Bella) but overall, as VEDS is a rare disease, coverage is rare too. 

Her wonderful family set up a registered charity in her name, and now raise awareness through social media, events, their website, fundraising and media coverage in their local area. On Rare disease day this year they are launching a new website. 

Stories like AJ's and the work that charities like AJ'S Challenge do are so important in the rare disease community. Having just turned 6, this little lady is juggling both her conditions and being a normal child, and this is the case for many children with rare but serious conditions world wide. 

Here's a little more info about AJ and the charity: 

Annabelle's Challenge is a UK registered charity raising awareness of Vascular Ehlers-Danlos Syndrome (vascular EDS) to both the general public and medical profession to help aid an early diagnosis and prevent misdiagnosis of vascular EDS and to support patients who are affected by the condition.

The aim of Annabelle's Challenge is to raise awareness, support patients and families affected by vascular EDS and to encourage the medical profession to progress further with research into finding a cure.

At just 3 years of age Annabelle was diagnosed in December 2012 with Vascular EDS, it is a life threatening and incurable genetic condition and is the most serious variation of EDS, weakening the collagen in her tissues of the body and making her prone to possible arterial or organ rupture.

A torn artery can cause internal bleeding, stroke, or shock, and is the most common cause of death in patients with this disorder. Although serious problems are rare in childhood, more than 80% of vascular EDS sufferers experience severe complications by the age of 40.

Annabelle also suffers from rare blood disorder von Willebrands, with most children an accidental knock might only leave a slight mark but for Annabelle she comes off much worse with either excessive bleeding, deep bruising or even open trauma wounds requiring medical attention.

Her blood does not clot very easily and when factoring in the vascular EDS we have to watch her every move, not easy for anyone with a six year old that just wants to lead a normal life like any other child of her age.

So far this year Annabelle is doing great but we can’t ignore the fact she is a ticking time bomb, at any time day or night she could suffer from a spontaneous and ‘significant’ event which could end up in a visit to A&E or sadly worse case it could prove to be fatal without any warning.

To help raise awareness of the condition around Rare Disease Day, Annabelle has recently taken to the field with her local football club Bury FC as their mascot. During the match day visit Annabelle met with the manager and players and raised awareness of Vascular EDS before proudly walking onto the pitch with the players in front of the crowd.

Please do check out the new website http://www.annabelleschallenge.org/ and find out more about Ehlers Danlos and the challenges faced by parents of children with rare disease. Events like Rare Disease Day give patients, families, friends and doctors a chance to have a voice and make changes, so please share this in the hope it can help another parent, person, child, friend or doctor put together a puzzle. 

The power of the online community in healthcare

So everyone knows and has been told a hundred times over to never Google your symptoms. Don't go online and try and work out what's wrong with you, it'll probably be wrong and misled. But what about when you can't get the support you need from doctors or clinics? This is the issue that faces thousands, probably realistically millions, of people worldwide with chronic and rare diseases and conditions. 

The internet, particularly social media, is now an integral part of most people's daily lives. We share and post all sorts, from our breakfast to our emotions. Those people who have symptoms that don't add up, or know they suffer from conditions that aren't adequately cared for by medical professionals are making waves online. I first found this when I was diagnosed with hypermobility syndrome. I didn't get a great deal of support or much useful advice and was soon discharged from all clinics, despite the issue not being under control. My symptoms then got worse and more started slowly appearing and I realised I most likely had another condition, which doctors agreed with but again, not enough support. 

My story is not unusual, and I ended up turning to online forums, Facebook groups and Twitter feeds for answers. I found charities online that had growing followings on social media and plenty of people willing to share experiences. I've learnt so much from these groups and websites and found ways to handle my condition that have helped. That was also how this blog was born. I wanted to put my journalism and communications degree to good use for something that mattered to me. Since then I have built up my own online community. This blog now has a Twitter feed: @ChronicHealth1, I have lots of followers who share my condition online and I use Facebook groups and forums to read about research studies and learn about the ways other people handle flare ups. 

Of course, the internet can be a dangerous place for an unwell person to frequent. Things spiral quickly and patients end up fearing the worse. I've done it myself plenty of times and always regretted it. If you are using online resources to handle a condition or find out what might be wrong, start by looking up reputable charities or societies and see if they are on social media. Also consult your GP if you strongly suspect something, don't just decide that you definitely have it and start trying to come up with treatments. It's really not worth it. However these online communities for diagnosed conditions are so helpful and valuable and many people rely on them as a source of emotional support. I see so many comforting stories and useful links posted on my Twitter feed everyday that I share and sometimes apply to me. 

There's a reason online community management is growing as a job in healthcare. These resources are important and powerful and when used properly, monitored and maintained they can be of great use. 

Anyone reading this with hypermobility, EDS, fibro or other related conditons, check out @ehlersdanlosuk and @HMSAcharity on Twitter, or look into the hastag #spoonie. Type your condition into the Facebook search bar and you will most likely find a group to join. 

Support can come in all shapes and sizes and in 2015, that can include your laptop or smartphone. Just try and be sensible. 

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.

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. 

5 things invisible illness sufferers do better than anyone

1) Be tired
When people get in from a long, hard day and kick their shoes off to a chorus of 'I AM SO TIRED', they really have no idea. Lots of invisible illnesses, like POTs, fibro, EDS and HMS, come with fatigue. It's not so much feeling tired, as feeling like you absolutely have to be laying down with your eyes shut immediately or you will just fall over. It just hits you like a train. There you are, going about your business, working, gardening, reading, whatever, and BAM. You are so absolutely exhausted it's as if you've not been to bed in a year. Your head feels like it's been pumped full of hot air and twice the weight it was a minute ago. Now that is tired. Really tired.

2) Poker face
There are times when you are doing something normal, say sitting at a desk at work, when suddenly a body part will explode with burning pain for no apparent reason. No one around would ever know, because you just smooth over it, try not to move, keep calm, and carry on. Dealing with chronic pain leaves you a good poker face. You can be feeling a lot of 'OUCH OH MY GOD' on the inside, but on the outside you look cool, calm and collected. Of course sometimes you can't contain it, and the bad days are bad, but you can regularly look utterly normal, perhaps even really well, when in reality everything hurts and you can't get out of your chair or even lift a cup. You'll have to be forgiven for the slight twinge of crazy when you flash someone a smile.

3) Appreciate
The good days are there to be used and used bloody well. Being cornered by illness and feeling like it dictates life awakens you to a sense of gratitude and appreciation most people don't know exist. Feeling almost brought to tears when a hot water bottle starts to ease your back ache or barely believing your luck when you can have a day out with family makes you thankful. SO thankful. You appreciate everything a million times more than is logical and really routine, average things can make your day.

4) Sleep badly
Sleeping badly is not taking an hour to drift off and waking up a few times. Sleeping badly is taking time to find a position you can lay in, waiting to see if you can stay in that position, hoping you can fall asleep, not falling asleep because you have to continually move, waking up in need of painkillers or to take medication, dislocating a joint from rolling over.....The list goes on. Chronic illness and sleep is a battle and no one fights quite like sufferers of these conditions. Painsomnia. Not fun.

5) Play it down
I used to wonder sometimes how people would feel if I could transfer all my symptoms to them for just ten minutes. Dealing with invisible illness, such as Ehlers-Danlos hypermobility, can test the patience of you and everyone around you. More often than not you probably play it down. Tell people you're okay and carry on with day-to-day life when really it's not okay at all. You're in pain, you're distressed, anxious, stressed, forgetful, brain-fogged and so tired. It's tougher than anyone can imagine, but playing it down to seem not so bad at all becomes quite the talent.

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.

What does your condition mean to you?

Suffering from an invisible illness can be extremely isolating. Knowing there are others out there the same who are fighting similar battles can be a great deal of comfort. This is something that people mention again and again on forums, Facebook groups, through charities, Twitter and on other blogs that I read. It is a recurring theme. It's almost like a daisy chain, precariously joined together, people support one another and the chain keeps getting bigger. It needs to continue getting bigger for things to improve on other levels, like medicine, doctors and professional support.

Everyone handles their illness differently. While symptoms may be the same, no two people are completely identical in the way they live with chronic illness. The words below are from three different people, from three different parts of the world. They have given three key words and a short summary of how they feel about their condition. They speak different languages and live different lives, but they are united in one thing- fighting their condition. 

Lacey:

 Progressive, unknown, annoying

My hypermobility pain has increased significantly over the last two years and I was misdiagnosed and therefore mistreated for eight years before getting the correct diagnosis. I am still being bounced around different hospital departments trying to get to a specialist in order to manage the condition. I try to manage it as best I can and my current top tip is sleeping with a pillow in front of my stomach like a pregnant woman to prevent a recurring trapped nerve in my spine!

Mendy:

party tricks, pain, planning

I’m always in pain, always tired and although the doctors told me it would get better with age, I find that my joints keep popping out of my sockets more. With every activity I want to do I need to plan, either take more painkillers or have more sleep, have more recovery and say no to things more often. This is my life. I’m not sad about it. I was born with hypermobility. It’s only a shame that this is something not visible from the outside. I've lost friends over the years who haven't understood why I wasn’t able to go to birthdays or social gatherings. In my book, those aren’t friends. I live my life to the fullest, do whatever I can. I work, have my own house, lovely friends, nice hobbies and I’m happy. I’m not my hypermobility, I am Mendy with the funny joints.

Jay:

Falling apart inside

EDS has single-handedly taken away so much from my life, but at the same time gifted me an abundance of maturity and understanding at a very young age. Having such a dramatic, hidden change to your life can obviously be dizzying and the lack of research and understanding for such a difficult condition to live with is extremely frustrating; but what this means is the people I've met and spoken to with EDS are some of the most courageous and resilient people you could imagine. They have for the most part become their own doctors and created a community of people who know how hard it is to live with EDS who support each other tremendously. And for that I am grateful.

I would really like to receive more of these short pieces from people who suffer invisible illnesses and live with chronic pain. If you want to contribute to a future post please email laurenrellis010@gmail.com  

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.

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.