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. 

6 ways you know you have an invisible illness

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

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

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

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

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

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

5 problems hypermobile people encounter

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

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

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

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

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

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

4)      Doing everyday household tasks

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

5)      How many painkillers have I taken?

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

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. 

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.

The newest charity for Ehlers-Danlos Syndrome

Annabelle Griffin is a bright and happy five year old. She likes playing, and music and being a princess. Unlike most five year olds however, she is the driving force behind a newly registered UK charity. Annabelle, or AJ is she as affectionately known, has vascular Ehlers-Danlos syndrome. VEDS is the most serious branch of Ehlers-Danlos, a syndrome that is not widely known of, especially, and worryingly, among the medical community.

AJ is at constant risk of a rupture of one of her internal organs due to a lack of collagen in her body, which could prove fatal. It can happen at any time, with no prior warning for her family. She was diagnosed aged 3. A detailed post on AJ’s condition and VEDS can be read here: http://bend-trend-hms.blogspot.co.uk/2014/02/rare-disease-day-annabelles-story-life.html

It is living with this constant fear and dealing with EDS on a daily basis that led AJ’s family to start a charity- Annabelle’s Challenge. May is Ehlers-Danlos awareness month, and it has seen Annabelle’s Challenge become a registered and official charity in the UK.

Parents Sarah and Jared along with lots of support in their home town, Bury, have already put on countless fundraising events and built up a strong presence on Twitter. Trustees behind the new charity are now calling on local people in Bury and beyond to come forward to help with fundraising and share their skills to help expand their work. Jared says: “As a small charity the trustees will need volunteers to help with fundraising and awareness campaigning and we are very grateful to everyone in the local community who have supported us so far helping us to raise £15,600 over the past year.

It is commonly said among the EDS community that the syndrome, which consists of different types, is not rare, just rarely diagnosed. EDS awareness month has seen a rise in blog posts and online discussion, with people across the globe helping to spread information.

Ehlers-Danlos has a long list of symptoms and complications, and can make life seriously challenging. Jared added: “The worst part of the condition is not knowing when a significant medical event could take place, she could simply be sat watching TV and without warning have a spontaneous rupture of her internal organs which could kill her.”

Earlier this year Annabelle suffered from an accident at home, a trauma injury to her nose required an emergency visit to A&E and a subsequent operation requiring plastic surgery under general anaesthetic. Jared says: “It was a very tense and emotional time for us as we were unsure how the operation would go because her skin is so fragile, the medical team had knowledge of Ehlers-Danlos Syndrome but not Vascular type. Unfortunately not many medical professionals are aware of VEDS – and this prompted our decision to register Annabelle’s Challenge as a charity.”

Annabelle’s Challenge will work with the EDS Diagnostic Service based in London and Sheffield to help provide support to newly diagnosed patients. It will also be raising funds to further the education of VEDS within the medical profession and general public.

You can keep up to date and read lots more about VEDS and AJ’s story here: http://www.annabelleschallenge.org/

EDS awareness month is continuing and by spreading information it can be hoped that people who either are affected directly or indirectly can gain more understanding of this complex condition.

The Ehlers-Danlos syndrome Association website has lots of useful information and links: https://www.ehlers-danlos.org/

The beauty of tea

There are few things in life more comforting than a cuppa. There are few things in life less comforting than painful, stiff joints. So it isn’t it relieving to know that a nice cup of tea can help out with the latter? Since working in an office of dedicated tea lovers I have become a lot more experimental with my choice. I never used to stray from a traditional cup with milk and a sugar (about ten cups a day), but now that has taken a firm back seat. There are SO many flavours of tea, it’s almost overwhelming. I have tried hard to get into green tea for ages because of how many people rave about its health benefits. Once used to the taste, it really isn’t bad at all. You can also go for infused green tea in pretty little boxes. Raspberry is particularly lovely.

For those who suffer from bad joint pain, be it with hypermobility or arthritis, green tea should be considered. There is of course no guarantee that it will instantly wade in and evict pain from sore joints, but there is a large amount written about it that suggests it can lend a hand. As do most things associated with joint pain relief, it is a lot to do with anti-inflammatory properties. Green tea can reduce the production of chemokine in the body, which are proteins that promote inflammation.

Another regular on the joint pain circuit is ginger. Ginger tea has become increasingly popular lately. Used to combat colds and boost the immune system, it can also pack a punch when it comes to inflammation. Ginger features in loads of flavours of tea and is particularly taste bud-friendly when paired with lemon. You can of course make your own if you are that way inclined. Tea is consumed so widely in the UK, that a simple swap to one of these for the many sufferers of joint pain could make a difference. Of course if you feel married to and uneasy about betraying your standard Tetley, swapping one cup a day to start with is fine.

There is a short post about a research study into ginger and joints on the Arthritis Foundation website: http://www.arthritistoday.org/what-you-can-do/eating-well/arthritis-diet/ginger-benefits.php 

I’ve also discovered that apparently rubbing green tea on your face makes you look healthy. But that is another road to go down later.

5 normal things that make you realise how hypermobile you are:

1.       Your morning stretch. There are few greater things in life than waking up and stretching out in bed. However, the joy is slightly hampered when you feel your shoulders moving around in ways they definitely shouldn't be and hear about 35 cracks and clicks that could be coming from anywhere. Hips, toes, knees, they’re all at it. Hypermobile joints can definitely give Rice Crispies a run for their money in the snap, crackle and pop stakes over breakfast.

2.       Hair washing. I have long hair and whenever I reach up to the back of my head to go to work with some shampoo the clicking in my arms and shoulders goes wild. I also start to ache after about 30 seconds of head massaging. The one good thing about this situation is standing under the hot shower and letting it massage your joints a bit (until it goes arctic without warning, which mines really enjoys doing). The downside is once you have recovered, you have conditioner to contend with. Being clean and tangle free is hard.

3.       Cooking. This must apply to lots more people than just me. Chopping, peeling, mixing, grating and rolling cause my already grumpy shoulders to go into full strop-mode. They hate it. I hate it. We all hate it. Last week making fairy cake mixture turned into something not dissimilar to a physio appointment. My shoulders came in and out and cracked and clicked and that was only mixing butter and sugar. Dinner time hypermobility flare ups are not ideal. 

4.       Photos. My sister’s birthday at the weekend provided a wide selection of drunken and ridiculous photos and in most of them my arms look a bit like they have been taken off and sewed back on the wrong way round. Holiday photos where everyone is half naked and looking really pleased on a beach are also often joint shots of shame. It’s a bit like the daily mail side bar of cellulite and things that could be spots but probably aren’t, but for hypermobile people.

5.       Any kind of travel. My morning journey to work in central London involves being squashed into a tube carriage with bits of coat and rucksack in my face. It also often involves holding onto the bars above my head, which my wrists and shoulders love (they don’t) and is always followed by pain. Also the obscene amount of escalators that you have to traipse up and down do absolutely nothing to please hips. Planes are also quite an ordeal. Sitting in small seats with no leg room usually ends in limping off of the plane and being stiff for a few days. Dragging suitcases gets harder every time, but it’s quite nice also being able to off load your luggage on a lovely friend while you float around departures with your YAY holiday face on. 

I’m getting ready to go around southern Thailand in 7 weeks. With a backpack. A large backpack. We shall see.

Liquid Sunshine- A smoothie for your joints

Joint inflammation in a nut shell: It’s not fun. Exercise is an important part of looking after yourself when you have hypermobility syndrome. Inflamed joints often show up uninvited after doing physical activity, which is a shame as the pain often overrides the feeling of ‘yes I can eat another dinner because of all the calories I have burned.’ I find anti-inflammatory creams often don’t cut it, especially after running or lots of swimming. I was told by my last physiotherapist that most people crave something sweet after exercising (or all the time!?), which is where the anti-inflammatory smoothie comes in. Sweetness in a cup that is a pretty colour and good for you. BRILLIANT.

The first one I have tried is pineapple and ginger. Pineapple is not loved by all, whether or not that is the extremely tangy taste, or the fact that is SO yellow I am not sure, but it does have good anti-inflammatory properties. Prepare for science:

 Pineapples come from the bromeliad family of plant, which rarely produce edible fruit, not entirely surprising as pineapples don’t look particularly mouth-friendly, but they are the exception. Bromelain is an enzyme which is used to help clear up all sorts of health issues. Included in this is asthma, breathing problems, a boost to the immune system and reducing inflammation. It is also famed for its pain relieving element.

Ginger is pretty much as super a food as you can get. In terms of anti-inflammation, it contains gingerols, substances which are believed to be behind the reduction in pain for sufferers of arthritis who regularly consume ginger. It is also, in my opinion, absolutely delicious.

With smoothies I often just use enough fruit to make myself one large glass, because I think they taste best when they are fresh. For this yellow delight chuck in:

-          3-4 rings of fresh pineapple

-          A handful of chopped mango

-          A medium piece of ginger, about 2 inches long

-          A few blueberries (because they are just generally SO good for you)

-          1/4 pint of coconut water (or more or less depending on your stance on coconut)

-          About a tsp. of fresh vanilla

Warning: results may look a bit like liquid sunshine, don’t be alarmed.

Eating for your joints

I stare at a pot of cod liver oil capsules on my desk at work every day. Not the most pleasant of views. Even the use of the words ‘liver’ and ‘oil’ upset me slightly. Of course they are extremely important for good joint care, as physios and doctors have told me time and time again, meaning I have a daily ten second meeting with Seven Seas. Cod liver oil capsules aren’t the only thing you can do to give your joints a helping hand. Hypermobility sufferers should take extra care in looking after joints. One way to do this is through one of life’s greatest pleasures- food.

Glucosamine is a good place to start with eating your joints healthy. It is a compound that is found naturally in the body and produces glycosaminoglycan, which is a cartilage repairing molecule. Oooh science. Your body will do its best to repair your joints should cartilage damage happen, but it will do an even better job if you have a rich supply of glucosamine.

Shrimp shells, lobster shells and crab shells all contain glucosamine. This may not sound like the most appetising collection of snacks, as the shells are often considered difficult to digest and are often discarded. However, if you are a budding chef and have an experimental streak in the kitchen, the shells can be ground down and added to soups and casseroles.

If this is all a bit much on the effort front, try sports drinks. While some are very sugary and calorific, there are lots of lower sugar and less calorie options around too. People with hypermobility, when they are able, should be doing exercise anyway, so having a sports drink when you are being a good person and working out makes perfect sense. It’s important to try and be helpful to your body with glucosamine, as the body makes less as we age.

Manganese is a helping co-factor in building cartilage and is much easier to add into your diet. The manganese will aid the glucosamine to keep your joints in good shape. Simply eating more beans, nuts, whole grains such as bread and cereal, seafood and leafy vegetables can give you a good dose of manganese. Drinking milk is helpful too.

Seafood is a bit of an emerging pattern here and it is a champion when it comes to omega 3 fatty acids. You can only get this from including it in your diet or taking supplements. Your body factory won’t be whipping any up on the production line, so it’s important to throw some in. The anti-inflammatory assistance from omega 3 helps to calm down pain and swelling in joints, something hypermobility sufferers know plenty about. Eating fish like cod, salmon, sardines and trout are ideal, as are walnuts and eggs. Flax seeds are also very good for omega 3, and can be found in some breads, or can be sprinkled on cereal or in yogurts.

Stepping away from fish, vitamins C and E should be featuring in food diaries. They help to produce collagen, which is a key factor for hypermobility.  http://bend-trend-hms.blogspot.co.uk/2013/11/science-and-no-more-silence.html

Corn, nuts, potatoes, oats, papayas, broccoli, tomatoes, strawberries and of course all citrus and zingy fruits are a good place to start.

A lot of activities that come with hypermobility are unpleasant and painful, so eating to be helpful is definitely a nice change from the clicking, cracking and aching of physical therapy and exercise.