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

6 changes to make 2015 healthier

Living with illness or not, everyone knows it's important to make some effort towards being healthy. Those who have experience of living with a condition  will also be aware that having good health and being in good shape can improve your outlook. Exercising much more in 2014 made a difference to my hypermobility, so in 2015 I want to continue with the positive changes. I spent ages on Sunday trawling through websites and blogs to look for some inspiration of things I can put into action, and these are my chosen 6:

1) Drinking a mug of warm water and lemon in the morning

For a long time my first drink every morning was coffee, which is not good and I have tried really hard to cut the habit out. I've heard a lot before about trying warm water first thing. It apparently helps with digestion, can be a natural way to help alleviate pain, can help with constipation and weight loss. The lemon is a good source of vitamin C, good in these winter months when there are germs a-plenty, and is also a natural anti-bacterial product. My hairdresser also swears it does wonders for your skin, which is always a big advantage.

2) Using a health app

I rarely put my iPhone down and I know I'm not alone in that. Health apps are being used more and more and I get lots of emails at work advertising new ones. They cover literally everything, but a good general one that monitors your intake of food and drink and exercise is a good place to start if you have nothing really specific to target. My Fitness Pal has long been a favourite of mine. I used it loads when I was a student and wanted to stop neglecting my diet. It basically tracks what you eat and drink against how active you are and tells you what you should be aiming for each day. It's great for weight loss if you want to slim down, but you can also use it to just make sure you aren't over or under-indulging and even to gain weight if you need to. It's free to download and really user-friendly.

3) Eating fruit before anything else

I've always been fairly good at fitting in fruit and veg in my adult life. What I do find though is that I cram it all in during the afternoon or evenings, meaning I am less likely to get the recommended 5 a day (or 7, depending on if you can handle that much!) which I would like achieve. Eating a piece of fruit first thing is actually pretty easy, especially something easy like a banana or apple. Including it in your breakfast helps too, but if you are busy and in a rush, grabbing something out of the fruit bowl is ideal.

4) Using fresh ingredients instead of jars/packets

This would depend a lot on how you feel about cooking and how much time you have. There are lots of great recipes out there for class dishes like spaghetti bolognaise, chilli con carne and curries that can be made fresh with spices and vegetables, rather than using shop-bought jars and packets. It's actually not that difficult either and you can alter things to be more to your taste. Once you have a good stock of spices in your kitchen, you don't even need to buy much each time you make a meal. Simply scratch is a really nice site that has a lot of recipes on, if you are looking for a place to start. I also want my weekly food shop to look like this more often:

5) Alcohol swapping

Okay, so if you love wine, this is a hard one. I LOVE wine, it's a complete guilty pleasure and I could could easily have a glass almost every day, which I don't, but still. It's also up there with the most fattening of all the beverages, which is sad. I'm going to attempt to switch from drinking wine to trying spirits with soda/tonic or low fat soft drinks. This may or may not go well. A couple of friends have mentioned in the past how much this has helped them lost them weight along the way, which isn't my goal, but it seems a bit healthier. Well, as healthy as it can be where alcohol is concerned. There is no way red wine can completely be banished though. No way,


6) Do more things I enjoy

Mental health is just as important as physical. Being happier overall is far more likely to make me succeed in the above, because when I am happier, I am more motivated in general. I ended last year stressed, tired, overworked and a bit fed up, which had a negative impact on my general well being. I'm going to attempt to do at least one really fun, enjoyable thing a week, even if it's something silly like watching Bridesmaids with my housemate for the 393485th time. Smiling is good for you, laughing is good for you, so it's time to do more.

I'm not looking at these as strict resolutions, because they won't all last or work out, but it's good to have things to aim for. Happy, healthy 2015!

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. 

The hypermobile Christmas wish list

The number one Christmas gift would obviously be new joints and more collagen, but I don't think Santa has that in his sleigh. If I was writing a Christmas list on behalf of my body, it would go a little something like this:

1)  Beurer cosy heat pad- When I saw this online a few weeks ago I instantly knew I wanted it. It looks big and quite odd, but I don't care. The cold makes everything worse for hypermobility. My lower back and shoulders have been aching non-stop for about a month now. This is apparently better than a hot water bottle, which is my go-to for joint pain in winter, so I would be hugely intrigued to see if it makes a difference. Let's face it, this contraption looks like the dream for hypermobile sufferers and is a world away from my general Christmas list of make up and the whole of Top Shop, but needs must.

2) Harley original supportive neck pillow- I had a lot of discussion with my last physio therapist about neck pillows. Most of my pain is my shoulders and neck, which I know is common among the bendy community. They are apparently, if you get the right one, a real treat. Also I reckon a good one would help with the waking up in the night stuck in one position because I have gone completely stiff. I've seen this recommended on a couple of blogs so when I get one, I think it this will be pillow of choice. They also come in loads of sizes, even travel. Everyone loves choice. 

3) Deep Heat products- Basically, all of the products, particularly a large stash of heat patches, would be be ideal. Deep Heat has long been a good friend to my back and shoulders. I have to keep an emergency heat patch collection in my desk at work. They stay hot for about 8 hours and sometimes in the winter it's just nice to wear one to be warm, or stuff in your pocket to defrost your fingers.

4) Reiki- This is a bit out there, and may be a massive gamble, but I really want to try Reiki. In a nut shell, its a Japanese technique for stress reduction that promotes healing. My friend, who is a holistic therapist and hypermobile, recently went and had it done as part of a training course. Her account was that she left feeling straighter than she had in years. I've tried all manner of massage, and some have helped. I know you are often warned to steer clear of this type of thing with hypermobility, but I am too curious. I am going to take the plunge in 2015, so a review will be imminent. I've been recommended a place and a guy, so it's happening (hopefully) here: http://benbarnett.co.uk/classes/m-and-b-approach/ 

5) The Sleep Book- How to sleep well every night- My sleep varies from being completely fine to completely dreadful. It's been pretty poor lately, mostly because I can't get comfortable. Sometimes it isn't down to pain though, and I've seen this book mentioned on Twitter by some sleepy heads.

Pilates and hypermobility

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

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

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

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

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

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

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

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

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

5 things invisible illness sufferers do better than anyone

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

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

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

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

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

Comfort- as told by hypermobility

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

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

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