Travel Survival Kit- Hypermobility can't clip your wings

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

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

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

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

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

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

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

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

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

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

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

Oh and Croatia by the way, is BEAUTIFUL. 

Invisible illness: Support is so important

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Collagen- more important than you think

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

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

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

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

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

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

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

Enemies of hypermobility

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

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

Current top 5 enemies:

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

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

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

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

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

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

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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Parsley tea for period troubles

Working alongside doctors and nurses everyday means they are all subjected to me firing questions at them about medical complaints, of which I have plenty. About five months ago, I was busy complaining about how badly I suffer from late periods and pains and oily skin and hair at the joyous time of the month, when a colleague popped up and told me I needed parsley. I have never given much thought to parsley, I mean; it’s not that riveting is it? I knew nothing about it apart from that it came in two forms: flat leaf or curly. Fascinating stuff.

I was very apprehensive when I was told that I should brew myself some parsley tea. I am a tea enthusiast. I love the stuff. Normal tea, green tea, cranberry tea, ginger tea, black tea, tea with milk, tea with honey. All of the tea. The idea of parsley tea however, did not really fill me with caffeine delight. Apparently parsley, which is rich in vitamin C and A, both powerful antioxidants, is actually laden with health benefits. The most surprising thing to hear is that it can help to regulate periods and hurry along late ones. Upon hearing this, I politely nodded and thought to myself ‘errr, yeah okay.’

However, after a really horrible stressful month, my period was very late (about 2 weeks and I was definitely not pregnant), I was bloated, I was grumpy, my skin was horrible and my hair needed washing twice a day to look presentable. I was so fed up that I swung by Sainsbury’s and got some parsley (and about 2000 calories worth of M&Ms). My housemates were mildly horrified to see me throwing some freshly chopped herbs into a cup of boiled water, and to be honest, I was with them. It doesn’t look or smell like much fun. I was instructed to drink two cups for two days. It was pretty easy, just finely chop a handful, pour over the water and wait five minutes. Guess what happened after cup 3?

It worked. Or it was a coincidence, but either way, I was impressed. I also had the most mild and quickly passing stomach cramps for a very long time. I began googling parsley tea and stumbled across loads of forums and posts stating that it really helped with periods and bad skin and a number of other things. There were also a few that said it was rubbish, of course. I decided to try it again the following month, and drank a few cups in between for good measure, and hey presto, barely any period pains and it was bang on time, another extremely novel and sadly exciting thing in my life. After two months of herby, bitty, light green tea, my skin was also looking better. I am as sceptical as the next person about this kind of thing, but I believe in parsley tea. I have used it for four months, and my period pains have subsided, it’s been on time and I don’t look seven months pregnant the week before. I mentioned it in passing to my GP, who said it was definitely good for you, though in true GP fashion when it comes to herbal remedies, she didn’t have much else to say.

I would recommend giving it a try if you have similar woes. However, please brace yourself for the taste. Unless you are parsley groupie, I would add honey or lemon to soften the blow. Drinking it quite hot works too, as the longer you leave it the stronger the taste. It can also apparently help with fatigue and is good for cleansing the kidneys as it is rich in potassium; ideal after a heavy weekend or mid-week happy hour. However I have been told that it isn’t recommended for people with kidney conditions and shouldn’t be drank when pregnant.

If you suffer from misbehaving periods however, I would give it a go.  Just another reason why tea is fabulous.

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.