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

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. 

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.

Invisible illness: Support is so important

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Collagen- more important than you think

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

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

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

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

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

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

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

Enemies of hypermobility

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

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

Current top 5 enemies:

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

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

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

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

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

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

Core Stability For Hypermobility

My first ever Core Stability class terrified and debilitated me. It was not ideal. I turned up really excited wearing lots of lycra, with my weird joints in tow and left feeling like I may just sleep in the park outside because it wasn't raining and the ten minute walk home was too much. However, this is just because I did a few things wrong. Number one: I didn't seek proper advice from the instructor despite him asking me if there was anything he should know about and if I needed help (“no I’m fine, I’m actually an Olympian.”) I told him about the hypermobility but should have actually asked specifically which weights I should go for and so on. Number 2: I picked up the lightest weight and put it down. Massive error. I needed to use that tiny weight. My weak arms and shoulders were not prepared for a real, hard work out and they most certainly let me know it.

I've been told so many times by physios and my GP and a rheumatologist that it’s important to have good core strength when you’re hypermobile. It’s basically the scripted sentence they all throw at you when you ask what you can do to help. For ages I did simple physio exercises at home but they didn't help much and my dog chewed through my thera-band. I don’t miss it. It was offensively yellow and smelt like sick and never did much to help my shoulders.

Thera-band fan

My housemate (also hypermobile) joined a gym and went to core stability and convinced me it was a good idea. So along I went. As I said, I went in too hard, too ill-informed and couldn't move the next day. Actually, the next five days. I couldn't bend, lower myself into chairs, get on and off the tube or get dressed without extensively groaning and feeling like the end was near. It was AWFUL. I had to pep-talk myself to walk down the stairs in my house and at the tube station and only left my desk at work for the fire alarm and other emergencies like starvation.

The silly mistakes I made however, were rectified by dusting off and starting again. Lightest weights, lots of warming up, and knowing when to just take a break even if no one else. Three classes later and it’s brilliant. My shoulders ache less, I can carry more, my back feels better and I can do a plank without shaking and falling over immediately. If you are able and want to do something improve your strength and joints, go for this. Start slow, very slow, and work your way to heavier weights slowly. Start with no weights if necessary. It doesn’t matter how long it takes to get used to it, it really helps.

The class I go to starts with stretching and then involves lots of squatting and bending and planking, so it is necessary to stop every now and then to rest and not upset your joints too much. Don’t worry about the people who don’t break a sweat or look like they could do it with the rest of the class sitting on their back. They are most probably not of this planet or incredibly fit gym enthusiasts who don’t have the same problems as you.

It is important to work on your core. It is. It’s also a good way to tone up and you can definitely feel the difference after a few sessions. I still ache the next day every time but it’s now a good ache. The sort of ache where you think ‘I ache so I can eat what I want because I go to the gym and I am amazing.’

If you do take this up, make sure the instructor is a good one and knows about hypermobility and asks you about your fitness before you start. if you are looking for a gym, see if there is a Better branch near you. it's a bargain for a membership with classes and they do lots of good activities at all levels. http://www.better.org.uk/ Also take it very slow if you are new to this sort of exercise. Not being able to put your own socks on for the best part of week is not winning at life. 

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Life as a chronic pain sufferer: Hypermobility and Ehlers-Danlos syndrome. Alex's Story.

If you ask a 22 year old woman to describe her life, you would expect something along the lines of work, friends, socialising, holidays, opportunities and plans. When I asked 22 year old Alex-Marie Wood, I didn’t get any of those things. Instead she listed daily chronic pain, endless GP appointments, being unable to work and losing her dream job, unable to socialise or exert herself and feelings of depression. A day in Alex’s life can consist of migraines, mental and physical fatigue, abdominal pain, waiting rooms for medical appointments and when she is at her worst, help with dressing, bathing and eating. It doesn’t remotely sound like a life anyone should be leading, even though her current situation is a big step up from being diagnosed with growing pains and hypochondria in her teens. Alex has hypermobility syndrome and suspected Ehlers-Danlos syndrome. Two conditions that few doctors know much about and aren’t widely heard of in the public. They aren’t actually rare; they are sadly quite common, but rarely diagnosed properly.

EDS is a genetic connective tissue condition that is a multi-systemic syndrome. Connective tissue covers over 95% of your body so there is little that escapes the symptoms. (EDS UK) More can be read about EDS here: http://bend-trend-hms.blogspot.co.uk/2013/11/ehlers-danlos-syndrome-confusion-types.html

Joint hypermobility means some or all of a person's joints have an unusually large range of movement.

People with hypermobility are particularly supple and able to move their limbs into positions others find impossible. (EDS UK)

Many people with hypermobile joints do not have any problems or need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

• joint pain
• back pain
• dislocated joints – when the joint comes out if its correct position
• soft tissue injuries, such as tenosynovitis (inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called joint hypermobility syndrome. http://www.nhs.uk/conditions/joint-hypermobility/Pages/Introduction.aspx

Lots of sufferers of both of these syndromes will know that diagnosis is a battle. A long hard, painful one at that. Alex shared her story with me from symptoms when she was a child to where she is at now with referrals and treatments:

I had been in and out of the doctor’s office on a regular basis from a rather young age, complaining of chest pains, fatigue, shortness of breath, joint pains, dislocations, anxiety and feeling dizzy but it was put down to growing pains and a case of hypochondria. I wasn't able to do as much as the other children as I was always falling over or damaging myself by accident so I lived a rather sheltered life. In March 2013 I became ill with glandular fever, and this then seemed to exacerbate the symptoms I had been suffering throughout my childhood. The doctors initially thought I had Chronic fatigue syndrome or fibromyalgia as I was in chronic pain and very lethargic. I was sent to an endocrinologist which examined me and did endocrinology and rheumatology blood work, everything came back negative. I rapidly deteriorated in December, losing between 7-9 pounds a week for six weeks as I struggled to keep food and liquid down. After ten months of testing and going back and forth to the GP I was sent to a rheumatologist for a second opinion in January of this year and that was when I was diagnosed with hypermobility syndrome (with a beighton score of 9/9).

The beighton score is a measure of how hypermobile an individual is and how widespread it is. Clinically, it is quick to do and can be assessed in minutes. However it is not always straight forward to diagnose someone with hypermobility syndrome, as there are other symptoms that can be present. More info on this can be found on the Hypermobility Syndrome Association’s website: http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

Pain from hypermobility varies greatly from person to person. It can come on suddenly and can be completely debilitating for one person, whereas for others it can come and go as nagging pains through the day, disappearing at times then returning. Unfortunately for Alex, she is at the high end of the pain scale. It is difficult for people to look at someone who appears normal and looks healthy and understand that they are actually suffering chronic pain. Expressing to people that the pain is real is sometimes hard enough, even to doctors and physiotherapists. The life of a ‘spoonie’ as chronic pain sufferers are known can turn into an isolated and very miserable one.

I can become bed ridden for days, sometimes up to a week if I can't move because the pain is simply too much to bear. However, on a good day I am able to care for myself and go about my day as long as I am cautious and don't partake in anything too strenuous. I have a lot of bad days but I spend a lot of time educating researching this condition and I am making positive lifestyle changes to reduce the amount of time I spend as a prisoner in my own body.

 

As I am limited in what I am capable of, I do not go to any social events or go out to town to shop or socialise as I will really suffer for it for the next few days. I experience good days and bad days but I can never tell how I will be feeling from one day to the next. Being so limited in what I was able to do, I feel that this has really affected my relationships with family and friends. My mental and physical fatigue plagues me the most, I get tired very easily and I struggle to keep up with conversation so I spend a lot of my time sitting quietly. I am told that I am distant and I don't get myself involved, but I am usually in a state where I am overwhelmed by pain and I can't concentrate on what is going on around me. I'm not able to keep up with the pace of life that my family and friends are at, and I sometimes can get left behind which can be lonely at times. My friends and family are very supportive and they try to include me in what they can, but given my fragility I wouldn't be able to go out for a meal, partying, out shopping, go to Thorpe park or on a family holiday so I miss out on quite a lot of things.

 

It is not just socialising and taking part in days out and normal activities that is a problem. Working when in pain can become impossible and opportunities can become scarce and non-existent as employers will more often than not dismiss ‘hypermobility’ or ‘over-bendy joints’ as an excuse. This is not because people are unreasonable, it’s because they don’t have an understanding, which is why Alex is keen that people know what can happen when you have an invisible illness.

 

I have been dismissed from my place of work because of my illness, and not only was the company providing me with amazing career prospects but they were paying for me to complete a degree with other accreditation. I was working towards becoming a systems engineer and I was working for one of the best IT companies in the world, it was my dream and I was just over half way through when I was told I would be unable to continue working and studying as I was no longer well enough to work or sit an exam. I am still unable to work and I fear that I am not going to get back into a healthy state so that I can return to work.

 

Everyone knows what it’s like to miss out on stuff for being ill, but for most this is due to having flu, or a virus and they can jump back into life as soon as they are better. However, imagine having to face the fact that to get better, you must first convince the right people that something is wrong before you can begin a long path of referrals, appointments and therapy to begin to get yourself back on track. It’s an overwhelming and very realistic thing for many people in Alex’s shoes. Awareness for HMS and EDS must improve, as well as training for medical professionals, so her story doesn’t get repeated time and time again.  Alex’s last words in her summary are certainly not something that should be felt or said by anyone: I have become depressed, I have nearly given up and I have almost lost my mind to this condition.

 

The more awareness the conditions get, the quicker and better suffers can be treated and get the help they need to keep their lives, and their minds, in happier times.

The HMSA website offers lots of help and advice: http://hypermobility.org/

As does the EDS support UK: http://www.ehlers-danlos.org/

There are also big social networks on Facebook and Twitter where stories are shared and advice offered, so anyone suffering in silence should take a look and speak up, just like Alex.

 

Travelling with EDS

When I first booked flights to Thailand it didn’t cross my mind for a second that EDS may pop up and become a problem. I was far too busy making mental lists mostly involving ‘buy bikini, flip flops and check exchange rates.’ I am lucky enough to not have pain and daily issues to the point where I am constantly thinking about my lack of collagen woes. It wasn’t until a friend mentioned that with the travelling I was doing, a suitcase would be a nightmare due to boat rides and needing to wade to shore to get to hotels. “Get yourself a rucksack!” Oh God. The dreaded rucksack. My arch nemesis from festivals.

So I stuffed a few clothes and some shampoo into my rucksack and trotted off to Heathrow in mass excitement and far too much Thai Baht. And now, 6 flights, 2 ferries, one motorbike, about 6 taxis,approximately 20 longtail boat rides later and one military coup, me and my dodgy shoulders and hips are back and just about in one piece.

 I am a frequent flyer and sitting on planes with a bad back and jarred hip is never fun, so the 18 hour journey was a worry. The first flight I took was about six hours, from London to Oman and it was so empty I could lay down across seats and sleep. This delayed the back ache slightly, however the second flight was very busy (screaming children, arguing families) so I had to stay seated and the aches crept into my back.

Nothing was too bad for the first few days, until I moved from a town to an island and spent about two hours carrying my rucksack. Ouch. Very bad shoulder pain. I had expected it, but it still puts a downer on your mood. I also found that my right shoulder, which is the most affected part of my body, was sore when I was swimming too and clicking more than it had in ages. This prompted me to try and carry the bag on my other shoulder only, which obviously led to killer back ache on that side. Lose lose rucksack situation. As ever.

All was not lost though. Thailand is famed for massages, and I took advantage. Asian massage is not a type that I have ever heard of. Little did I know it involved being on a bed with a small lady who bends you into compromising positions and pokes you harshly in the ribs, but who cares. IT REALLY HELPED. It was brutal and I spend the last five minutes thinking ‘PLEASE LET IT END. LET ME LIVE.’ However, I fully recommend. Once I got over the shock and drank the delicious ginger tea they gave out after, I realised how much it had loosened up my hip and shoulders. My rucksack damage felt almost reversed. I would massive recommend asking for details on any massage before taking them though, as I think some massages in spas like these would be too much for hypermobile sufferers. Gentler options are Swedish and oil, whereas Thai massage is very hard and painful. You can thought, aways feed elephants to overcome your massage trauma.

 

Sleeping in hard beds in hostels and waking up feeling like you’ve spent the night on an ironing board is an almost unavoidable part of travelling. For EDS and hypermobile people, it can mean waking up either too stiff to run away from beetles and mosquitos, or actually feel pretty good. I didn’t mind the hard Thai mattresses at all. I still clicked like a frail old lady in the morning but my back felt well supported.

Aches, pains and clicks were fully expected on my travels. I was quite worried for a time about how I would cope given a recent hip sublaxation and constant battle with my shoulders, but it can be done. Investing in a good bag, packing lightly, exercising and not doing elaborate dives from boats or cartwheels on the beach are all helpful. Also keeping deepheat at close proximity when bag carrying is a good idea (though not in the sun, the heat alone without adding to it is almost too much to handle.) I guess it helps a bit when you have an evening off due to martial law taking over town and being curfewed by the army. Lots of bored laying around in a hotel. Also take taxis, don’t scrimp and carry stuff around, they are so cheap, even if it’s a couple of street or from a train stop to a hotel. YOU CAN TRAVEL WITH EDS. You can carry a rucksack. You can clamber on and off of quaint wooden boats and enjoy glorious views like this. You just have to take it slow.