What uses up your spoons the most?

This is something that for me, has only really become a problem in the last year. It hasn’t been a struggle I have dealt with since my symptoms began, like a lot of other chronic health suffers have, and I am grateful for that at least. I am more tired now than ever, but of course I am, because I now have a demanding job, work hard, have a bustling social life, a relationship and the responsibilities that come with being an adult. Add the chronic health issues into this and it is an exhausting bundle of things.

Living with chronic pain and dealing with an abundance of symptoms every day is incredible, and people who do it, no matter what the parameters of their doing it are, should be rewarded endless praise and support. Not that they need it though, spoonies know they have to live their life, we don’t ask for a medal on a daily basis, we just get on with it.

*Just in case anyone reading is this unaware (like I was until about a year ago) spoonie is a term used to describe people with chronic illness. The idea behind it being that we have a certain number of spoons each day, and these get taken up by various activities until they run out. Once they do run out, essentially the person has little left in the way of energy and tolerance.*

So this is, for me, and I would be interested to hear what others find, the list of things that use the most spoons.

-           Showering

-          Fitting in exercise

-          Commuting home from work

-          Cooking dinner

-          Going out after work

-          Chores (especially hovering, washing and changing bed sheets)

-          Engaging in long conversations, particularly those at work

-          Drying hair

-          Reading (weird, but it exhausts me!)

-          Getting ready for a day/night (hair, clothes, make up etc)

-          Shopping (food or clothes)

My list is getting longer and sometimes I sub things in and out. Showering seems to take up so much energy and the thought of it just makes me want to bury myself in my duvet. I know it is a very popular one among those who are trying to preserve spoons, and to the outside world probably sounds bizarre.

What uses up most of your spoons? 

8 signs you are living the chronic life

Being chronically ill, as I have written so many times on this blog, is a way of life. What it isn't though, is your whole life. I think most people who suffer with such conditions know that there is a lot of importance in making sure you don't let health problems consume you. I try to make sure mine don't but taking a light hearted approach where possible.

Don't get me wrong though, there are still days I want to scream. But anyway, here's something a bit light hearted to go with the chronic life hashtag I've been enjoying keeping tabs on lately.

1) You often find yourself wondering if you are on fire because yet again, you've slapped on too much Deep Heat and certain parts of your body feel like naked flames.

2) You can often be found blankly staring at people mid-conversation and struggling to remember where/who you are due to chronic fatigue. Great if you want certain people to not speak to you again, not so ideal if you're in a board meeting have 12 people staring at you.

3) You have four meals a day. Breakfast, lunch, dinner and meds.

4) You are tired. Tired is you. You are one.

5) You have been in the shower and started wondering if you could live a full life if you never got out. Getting in was effort enough, Getting out doesn't seem plausible.

6) You really enjoy small victories like taking off your bra with one swift movement because you can bend in unnatural ways. YAY HYPERMOBILE JOINTS.

7) You haven't had a good nights sleep since the 90s.

8) You have a super power where you can always be more tired than everyone else.

The hypermobile guide to dating

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




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




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




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




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




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




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




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

14 sort of useful and fun things being hypermobile is good for

1) Reaching the bottom of a Pringles tube.

2) Shaking cocktails.

3) Reaching into your rucksack while it's still on your back.

4) Freaking people out for fun on public transport.

5) Baton twirling.

6) Back scratching.

7) Fitting onto packed tubes.

8) Seeing what's going on behind you.

9) Picking things up with your feet.

10) Turning things around in your hands to be the right way up when you're carrying too much.

11) Moisturising hard to reach bits.

12) Draining Pasta. Fancy pan-to-colander work.

13) Getting out of small spaces.

14) Turning a steering wheel.

Feeling normal with a chronic illness

From the moment you wake up until the moment you fall asleep, you go through a roller coaster of emotions thanks to being chronically ill. Are any of those emotions a feeling of 'normal'? Probably not. I say probably not because it's HARD to feel like everyone else. It's hard for a number of reasons. Of course there is those of us who have chronic pain, chronic fatigue, symptoms that mean working is out of the question, symptoms that mean you are limited. With all of these comes the feeling of disappointment. 

You feel disappointed in yourself for not being able to do enough, disappointed in your body for constantly making you feel awful and disappointed in the time you spend doing nothing because it's all you can muster right now. It's of course completely fair enough to feel this way, because it's HARD to be ill constantly. Harder than you can ever truly communicate to others. It's even harder when people look at us and have no earthly idea about the pain or the tiredness or the sickness or how hard it is to even show up to life in the morning, let alone a job. 

The one thing that I have found useful of late (it's been a HARD few months) is to make sure I refer to myself as normal, despite the fact I am far from. I have been going out, balanced with spending 6 days across Easter not moving, I am going on holiday, I keep booking holidays and I try hard to attend all birthday and social events. I don't then put an immense amount of pressure on myself to go, because I know my limits. I'm having a hiatus from alcohol, which makes me even more different to my friends, but by going out and joining in, I feel normal. By going on holidays, even if I just lay down in the sun for a week while everyone else does watersports and goes snorkelling, I feel normal.

Feeling normal keeps me sane. It's when I constantly dwell on how set aside I can feel when symptoms are bad, I start to feel like I'm going mad. My normal might not be everyone else's normal, but it gets me out of bed in the morning.  

10 important things to remember when you're having a bad pain day

1) Think about how much your body hurts right now and how much you have to deal with. Really think about it. Now think about how amazing you are and remember that you fight a battle every SINGLE day but still come out the other side. Basically, you're a bloody warrior.

2) Films, TV and good books exist to give us somewhere to escape to. Use them well.

3) You might be seeing a bit more of your bed than you want to at the moment, but imagine how much you miss it when you're at work or busy with life. Just snuggle up and relax, you deserve it.

4) You can write about it. Just write down how you feel. Write down how frustrated you are. Write down a list of things you'll do when you feel better. Writing is definitely a kind of therapy.

5) It might not seem like it, but there are people who know what you're going through. You really aren't alone. It's worth trying online forums or Twitter communities.

6) There will be a better day soon. There will.

7) Fresh air makes a big difference. When you're stuck inside it can become claustrophobic and miserable quite fast, try and sit in a garden or even by an open window and take in a bit of the outside.

8) Cuddles are free.

9) Remember the next time you are out and about and feeling better to pick up some stuff to make home a little brighter. Flowers, candles, postcards, bright cushions or even giant homemade sign to remind yourself how strong you are. Having a more pleasant environment makes the pain times a little easier to put up with.

10) Just to re-iterate- YOU ARE QUITE AMAZING. It really is quite important to keep that in mind.

Genetic counselling- What to expect at your appointment

So I sent out some feelers two weeks ago on Twitter, asking for people to share their experiences of genetic counselling. I got a lot of responses but only a few people had actually been for this kind of appointment, with a lot more people asking how to get one.

So to start off, I was referred through a dermatologist for this appointment. I am being monitored for a skin condition potentially related to Ehlers Danlos, and the dermatologist decided I would benefit from finally having an official diagnosis on paper. I was lucky, in that I found a doctor who knew about the condition. I had to be referred through my GP, which took some prompting, and they tested my bloods before sending the referral. The blood tests were to check my ESR levels, which measures inflammation, a test a lot of you might have had done. Despite it coming back with normal levels, I still pushed for the referral and my GP agreed to send it.

Three weeks later (I was referred to Northwick Park in London) I received a letter and an appointment. I was told waiting lists were long, which I expected, and my appointment was booked for May, a 9 week wait in total. I was then fortunate enough a week later to be offered a cancellation, which I took.

I did a lot of research online about genetic counselling appointments and what to expect. My top suggestions to prepare for a GC appointment are:

-Check the doctors background beforehand. make sure you are seeing a doctor who has knowledge of EDS, I asked to see someone specific by looking at the consultant list of the hospital and it was so refreshing to hear her level of expertise.

- Take as much family history as you can. The doctor drew out a sort of health family tree, which meant I had to provide a lot of information, mainly about my parents, their siblings, and my grandparents. Go as prepared as possible.

- Be ready to strip off and do some bending, stretching. I had to demonstrate my hypermobility, so I could be scored using the Beighton score. Dress appropriately!

- Write a list of EVERY symptom you have experienced in your memory, no matter how related it seems to be to EDS/HMS. Also try and remember all the scans and tests you have had in the past, and if you can go with results, take them. It's useful for the doctor, who will never have met you, to be able to get some good background.

-Prepare some questions. This is the kind of appointment you go into wanting to know so much, but it's easy to get carried away by how much the doctor will tell you, so make sure you remember everything that's been playing on your mind, and try and get an answer or suggestion.

-Ask about other clinics. If you need help with joints, ask about physio, if you need help with pain, ask about pain management. Your doctor will be able to refer you on to other clinics if necessary. It's definitely worth asking.

All in all, genetic counselling gave me an official diagnosis of EDS type 3, finally written and recorded and properly communicated to my GP. However I am not being followed up, so I did get a feeling of anti-climax out of the whole thing, as I was hoping for monitoring. However, as the word counselling suggests, these are excellent appointments for advice, so get as much out of your time as possible. Also remember to ask about family members- do they need an appointment too?

You can get more info and help with deciding what to ask and what relates directly to EDS from the Ehlers Danlos UK charity website.

This blog has a dedicated Twitter feed now: @ChronicHealth1 for lots of EDS and hypermobility related tweets. And tweets about food obviously.

Please do also follow @ehlersdanlosuk if you don't already, as it's a great online support system. You can find me @laurenrellis and I recommend anyone struggling with their conditions who isn't on Twitter to sign up, as there is a great online community.

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- Part 2

A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

5 Things patients of chronic illness do...

From writing this blog, being a patient myself and immersing myself in online and hospital based communities, I have come to learn that there is much more to chronic illness than the condition itself.

1) Educating the educated

Chronic illness can be complicated, and particularly with under-diagnosed/ rare diseases, doctors will often have a gap in their knowledge. In my experience, and I know I am not alone, I often have to give a detailed description of hypermobility syndrome and the symptoms that come with it when I get referred to a new doctor. Obviously specialists will know what they're talking about (you hope) but it becomes the norm to explain your condition to doctors and for them to learn from you.

2) Adapting

You learn to be chronically ill in all situations. On the bus, at work, in the supermarket, looking after kids, having a shower. Every situation becomes adapted to you and your condition, and the adaptions aren't always good. It is however, a massive feat to carry out simple tasks while having a bad day, particularly living with chronic pain. The term 'chronically awesome' is no lie.

3) Forming communities

I didn't know that patient communities existed before I got unwell with hypermobility. Even then, it took me ages to realise there were Facebook groups, charities and forums bursting with information and support. You just type 'hypermobility' into the Facebook search bar and you're met with an abundance of groups and pages. It seems that when people have to really fight something, they fight together. It's been really interesting for me to grow a small community on Twitter off the back of this blog and my timeline is often littered with new information. You can join me on Twitter: @laurenrellis or on Instagram, where there is also a lot of unexpected 'spoonie' action! Larellis9

4) Learning and absorbing

To educate others, patients themselves have to be educated too. This is why communities and the great work done by charities like Ehlers Danlos UK and the Hypermobility Association are so important. Knowing the basis and learning about conditions is half the battle in the beginning. I was letting physios treat me for damaged rotator cuffs, even after they diagnosed me as hypermobile, because I just didn't know anything about it. It's surprising just how much patients learn about themselves and the world of medicine. Surprising in a really, really good way.

5) Generally being heroes

Ask anyone, it's bloody hard being chronically ill. It's hard having a condition that's not widely understood and without a straight forward cure or treatment plan. It takes a strong person to handle these things and they often make a strong person too.

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!

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.

Comfort- as told by hypermobility

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

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

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

What does your condition mean to you?

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

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

Lacey:

 Progressive, unknown, annoying

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

Mendy:

party tricks, pain, planning

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

Jay:

Falling apart inside

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

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

Learning to grin and bear it

Those who live with chronic pain know that it isn’t about stopping it, it’s about learning to manage it. Pain management is no easy feat. It can be a long, daily struggle that takes over life. Life is pain and pain is life. This is not exactly a mantra that anyone wants to live by. The thing with pain is that it can consume you. It’s important to remember that pain is a part of life and although at times it definitely can, it doesn’t rule you. A lesson all those with hypermobility syndrome, Ehlers Danlos, fibro and other chronic conditions learn.

Those who live with painful conditions, especially ones where treatment is difficult to receive in general, it becomes a case of how you work around it. When I first got symptoms of hypermobility syndrome, it was painful to breathe. Shallow breathing became my norm, because I just learned to deal with it. Working full time was hard, not knowing what all this pain was and being referred to people who ultimately, by no fault of their own, couldn’t help me. One thing I remember most clearly from the first year, was learning to grin and bear it.

It took a while. Lots of painkillers were consumed and injections injected and examinations carried out. It interrupted work and put me in a low mood and probably made those close to me think I was mad, or attention seeking, or a hypochondriac. You know how it is. Soon though, I stopped using my right shoulder as much as possible. No more bags, no more carrying shopping, no swimming, no running, no stretching. The less movement, the less pain. I breathed differently, typed differently, slept differently.

For some people, the pain is in more than one place. I only had to deal with one body part at a time when the pain was at its worst and I am so thankful for that. I don’t know  how others carry on when they are in pain practically all over. They do carry on though. As much as you can, you get on with it. I remember thinking of the pain as a tag-along. Obviously unwelcome, but soon it just existed. Sometimes there, sometimes (on good days) not there at all, sometimes really painful, sometimes not too bad.

I think you do learn to exist alongside it. I'm not saying you make peace entirely, but you do what you can to still be you. Some people may not be able to carry on and be as active as others, but I'm sure they do as much as possible. I'm not sure if you can actually overcome pain, maybe some people think you can. But I do believe, to some extent, sometimes, you can grin and bear it.

I worked through my worst time, not always all day and sometimes I would leave to have appointments and see doctors, but I did go in. I eventually made it to my favourite music festival (thanks to very strong friends who could lug my stuff as well as their own), went on holiday and moved on with my career. I used to wake up and get so angry about the stupid, throbbing pain in my shoulder and back that I didn't even think about normal everyday things. But you come a long way when you're up against it. The body can still support you, even when it seems to be doing all it can to go against you. Now, most  of the time, normal things like dog walking, holidays and commuting and working aren't affected by pain. The times they are, I like to just lay on the floor and make some jokes until the episode subsides. I obviously move to the bed if it lasts too long though. Comfort is king.

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. 

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.