Familiarise to normalise! adults, please allow kids to ask about disability

Yesterday I went to collect a desk for my craft room. A little girl of about seven was looking at me with my hand splints and waking stick. As she was looking, I smiled at her and she smiled back. No big deal, I wasn't bothered by this. It happens all the time, after all i'm in my late 20's, but look younger. I'm definitely not an old lady, but I certainly walk like one. What upset me about this encounter was her mum (I am assuming it was her mum), she pulled the little girl away and told her off for staring. Now, I accept that it is, in fact, rude to stare at other people and we should teach children not to do it. But when it comes to small children and people with disabilities maybe we should do things a little differently. 

I am someone different to who she might have encountered before, she might not know anyone who uses a waking stick, wheelchair or has splints. To this little girl I could have been as different from her as another species of animal all together, which is interesting when we consider that its normal to take children to the zoo, specifically to look at animals of other species. In life we encourage children to be inquisitive, to notice and to absorb things around them which are different from themselves. We encourage children to question and find out about the world around them, we encourage them to learn . But when it comes to other people who are different (perhaps with disabilities, perhaps different in  other ways) we tell them not to look, not to ask and to stay away... perhaps we are sending mixed messages! maybe we are teaching them that people with disabilities are strange and to be avoided, possibly even scary or dangerous. 

Maybe if something remains mysterious to a child he/she will find it hard  to be understanding and compassionate,as they grow up. They might grow to become fearful of difference. After all, our brains are hardwired to fear the unknown. If they're not given the opportunity to ask questions, kids can't learn that people with disabilities are just the same as them underneath the mobility aids. They may remain too uncomfortable to be able to have an open discussion about a persons limitations and what help they need, or if they even need any help at all. We might never move forward with accessibility, as the next generation find themselves unsure how to interact with people with disabilities. Not knowing weather to approach and offer help to that person struggling to get through the door, or leave them to it. 

Most importantly, children who have not had the opportunity to discuss, understand and to accept those around them with, may grow up to become one of the many adults who continue to stare at me with my walking stick/wheelchair. Like they have never seen anything so absurd as a young person with mobility difficulties. An adult who continues to speak over me when I am in my chair, not acknowledging me, or that I am the person making that transaction in a shop. They will become the adults who ask inappropriate questions or use offensive language. Yes, kids, its rude to stare...but its even ruder when its the adults doing it!

Before I was aware of my condition, aged 12 my mum took me to volunteer at a sport session for people with disabilities, it was a valuable learning experience for me. I learned a lot about the vast spectrum of health needs. It normlised disability for me. I realised disability as just another strand of diversity in the human race. Just like some people are female and some are male, some are heterosexual and some are homosexual. Its part of what weaves the fabric of humanity. Some people are different...that's OK, get over it.  

Now I am on the other side,  I would much rather hear a child ask their carer why I have a stick and hear them respond with an explanation, "some people have health problems and need a stick to help them walk". I'd rather have that kid in the restaurant come over and ask me about my condition, or just have a little chat. Then next time they meet a person with a disability it wont be alien, It will be another kind of normal. 

The little lady in the picture is my niece. she is 4, she knows auntie Annie needs a stick or chair to get about, that's my normal. She knows I can't dance, but I can draw and sing and read. She understands my limitations. She doesn't worry about it, She just accepts me for who I am. Children are mouldable, their world views are easily shaped. So please, shape them to be understanding, compassionate and tolerant.

We need to familiarise children with disability to make it normal. That way the next generation can grow to to become more accepting than the last. Please, familiarse to normalise 

I am grateful to my chronic illness for .... (ehlers-danlos syndrome)

Some things I am grateful for since being diagnosed with ehlers-danlos syndrome.

When I was first diagnosed I had a small meltdown...OK a big melt down. Now, two years on, I am learning to adjust. I am proud of the way I have adjusted. I have my ups and downs but I am grateful for the little things in life. I'm even grateful for some things I've got because of my illness. I wanted to share some of them with you. After all we could all do with a little bit more self appreciation.

1.Knowing I am not crazy! This is a big one for me. Since I was a child I knew there was something different about me. I knew I wasn't like all the other kids. I remember being quite a small child comparing myself to other kids and knowing I was not like them. I had aches and pains. I was more tired than other kids. I took longer to recover from simple medical procedures. For me getting a diagnosis was bitter sweet. I felt vindicated, like I wand to shout “IN YOUR FACE!!” at anyone who had ever doubted me. But at the same time I still wasn't happy. The realization dawned on me that by being right I actually have to live with a medical condition for the rest of my life. But one thing I knew was I wasn't a hypochondriac, I hadn't been making it up and I am not a drama queen. After the initial shock wore off I was super grateful for that.

2.I learned a lot about friendship. Some people simply don't know how to cope with your illness; you have to learn to be OK with that. Some people can't figure out a way to be supportive when there is no solution. You might drift from friends you'd have least expected, but you might find that others become your besties. Remember the people you love the most are worst effected by your situation. They are fighting their own battle coming to terms with what you're fighting. So cut them some slack. I believe they're doing the best they can. If they're not giving what you need, you cant change that. You just have to accept it. Sometimes you get the best support from the least likely places, friends that you didn't consider to be your nearest and dearest step up to the plate and are there when you need them the most. Be brave, share how you feel and your struggles, you never know who might surprise you. Maybe those further from your heart are able to look more subjectively at your struggle and offer the best advice. Who knows, all I know is my buddies are the best and I love them!

3.I learned what I love. When you have a limited reserve of energy you learn to prioritise your day. You learn to allocate a portion of your energy for things you want to do. I've learned to care less about the little things. At first I was always frustrated that there was stuff out of place or the dishwasher needed emptying, but after a while I realised these things can wait until the energy comes. They don't really matter in the grand scheme of life. Nothing bad will happen if you don't make your bed. What matters is how you choose to feed your soul. I learned to save my leftover energy for the things I love, like being creative, cooking, date night and visiting the amazing people I love. Become resourceful, you got this! You can find other ways of doing what you love

4.I have learned how strong I can be. Granted I have no choice. My options are fight like a wildcat or not, and become owned by my condition. Its up to me. Its Hobsons choice, neither option sounds that appealing, but faced with the two choices fight and be strong is the obvious one. Its not always the easy one. Its OK to get mad and shout and feel like rebelling against your treatment. Sometimes you've just got to let that crap out. Then dust yourself off and carry on fighting. When people say things like “you're so strong, I wouldn't be able to keep going like that” I often want to shout “of course you would, you dumb ass, you'd have no choice!” , But instead I hold it in and smile. Then, once I've calmed down a bit, I think damn! Maybe I am strong and maybe its OK to be proud of how strong I am

5.I'm grateful for the realisation that I was grieving. It took me a long time to realise I was grieving for my old life and the old me. I couldn't describe how I was feeling. I was sad about what I lost and angry about what my body was doing to me. I missed the carefree person I was and resented the wreck I had become. When I realised what I was feeling was grief I could start to process it and let go of the old me. I Allowed myself to begin repairing the broken bits. I stopped being so sad and eventually things started to make sense again. I felt that the colour came back to my life and I could start to enjoy the little things again. Its OK to grieve, just not forever. Its a process you have to complete, almost a right of passive for the chronically ill. You can make it to the other side. 

6.You can use your illness as an excuse to get out of stuff you don't want to do! Its great! Of course its really annoying when you actually can't do something you wanted to do because of your illness, but every now and then you get a little bit of payback in the form of a ready made excuse. Its OK to say I cant do it. I have been really bad at this, my mind is fiercely independent and stubborn (my body isn't). Admitting I cant do something doesn't sit very well with me. But sometimes I have to hold up my tremouring hand and say 'I'm out'. Sometimes it isn't that you have to miss out, sometimes its adapting and finding a different way of doing it. Admitting you need help is the first step to finding a solution.

7.I'm grateful for not caring what others think. Truth be told I've never really cared too much about what others think of my appearance. I wear what I want, I have odd hobbies. I'm comfortable with myself. Now I have mobility aids and splints and that's something I cant change. I can change how I feel about them though. When I first got my glasses (before geek chic was a thing) I picked a pair of big purple ones, my husband said “ if you gotta wear them you might as well own it!”. So I own it! I've adopted the same approach to my medical aids. I've glittered my walking stick, I've painted my splints and I tie dyed my tubigrips. I'm wearing them, they're not wearing me! People can see them anyway so I might as well make then fit my style. Get the flashing lights on you wheelchair wheels. Get the pink chair. Stick rhinestones on your walking stick or frame. Customise your splints. If it makes you smile, do it! You're still you!

My mate Sid; my walking stick and my Ehlers-Danlos syndrome

Sid the stick, he's my buddy old pal!

I got Sid after I first met my occupational therapist. I had never really been clear about what occupational therapists actually do, but when I had one visit me at home I realised they probably have one of the best Jobs. She explained to me that her job was to help me do the things I HAVE to do more easily so I have more energy left over to do the things I WANT to do...OMG...there is someone out there whose job it is to make sure people like me have a quality of life, not just that we can get dressed and have eaten.

Wow! Up until this point I had just been struggling on and not using a stick. My POTS symptoms and joint pain were making it very hard to get out and about. I was always looking out for the next opportunity to sit down every time we went anywhere. If there was no place to sit, I just wouldn't go. Which in hindsight, was clearly, a recipe for misery. My OT basically told me to stop being a stubborn Twat, suck it up and use the damn stick (I'm paraphrasing- she was definitely much more professional!)... once again she was right.

I remember musing aloud “I want a stick that I can fold up and put in my bag, but also has a little seat on the top. Wouldn't it be great if some genius has invented that”

by jove, they have....enter Sid the stick!

After weeks of trolling the internet I eventually found the Flipstick website. Dudes....seriously. I am not on a commission, I swear. But this has to be some of the best money I have ever spent! get yours here

Sid folds up into my bag. Which is amazing, because if get him out my bag in just the right way, Sid unfolds as I pull him out my bag and I can do a very respectable Mary Poppins magic bag impression! Flipstick also comes with a handy travel bag if you would prefer, I don't bother with mine though.

I'd like to use this junction to say, Yes, I've named my stick because I love him so much! No, I don't think its a real person. I joked about my mate Sid once in a session with a pain psychologist, this was a mistake. This is how I learned that mental health professionals lack a sense of humor, they take everything you say as gospel (in case you are suffering from delusions I guess). The more I tried to reassure her that I didn't believe my walking stick is a person called Sid, the more convinced she was that I in fact did. I gave up. She won that battle.

The top of Sid the flipstick folds down to become a little seat which I can perch on if I'm waiting in queues. I can become a little human tripod. Now Sid is black and white (they come in a lot of other colours), the brilliant thing about this is that in semi darkness you can't see the actual stick. So when I'm sitting on it, I look as though I'm doing some kind of insane floating squat! I get all kinds of double takes and then people laughing as they realise what I'm doing.

Our relationship has not been all sunshine and roses. For one thing Sid and the beach do not mix! Last year on holiday, my husband and I ventured to the beach, I settled on my lounger and folded up my lanky friend and chillaxed to the max. When the time came to head back to the hotel I found, to my horror, that sand had found its way into the folding mechanism on the top and I couldn't put the seat back up into handle mode. Needless to say meltdown ensued! But...thankfully my lovely husband saved the day and managed to get the sand out! Phew. No lasting damage.

But it gets worse...recently I had a little incident at a wedding. I wasn't even drunk, I swear! I was perching on the dance floor, doing my own version of rocking out (tentatively wobbling in a circle). When I managed fall off Sid, straight down onto my ass! The worst of it is that, because I was sitting on Sid, I landed on the hard plastic seat...lets just say me and Sid got a little too close for comfort and resulting bruise to my pride was as spectacular as the bruise on my ass! And who knows how many people saw my pants in the process.

Thankfully my buddies helped me up and I noticed that I had put my stick on a stray hair clip which caused my stick to slip out from underneath me. I cursed the day the bobby pin was been invented then sulked on a chair for the rest of the night! I felt so sorry for myself that I allowed myself a cheat on my diet and ate some chocolate cake, I decided I deserved it.

Generally though Sid and I get about well. I've been to gigs, albeit, with a human shield of my husband and sister in law either side of me to stop unsuspecting drunkards moshing me off my perch. We've been to the harry potter studio tour, where I considered getting on the green screen and pretending to ride Sid like a broom stick, but the queue was long and after a while sitting on Sid my coccyx starts to move. here me ans Sid rocking out at a fancy dress party last year..

To some people it seemed like a sign of me giving up, like I wasn't prepared to fight any more. But to me it was a way of adapting to my condition's limitations and allowing me to be able to do more of the things I want to do. I saw it as a means of finding balance and pacing myself. Just like my OT said, use less energy doing things I HAVE to do. Give myself more opportunity for fun.

I think understanding and acceptance towards people with disabilities and illnesses has undoubtedly improved, those of us with an invisible illness/ disability will know that there is still a way to go. There are still a lot of people who cant compute that a condition exists if you cant see it. Its not the way It SHOULD be, but at the moment it is the way of the world.

People who know me are fully aware of my condition and don't need me to use a stick to see and know how I struggle. I am able to explain to them what I need. But I found that as soon as I started using Sid, the general public had a visual queue to realise I was struggling. I found that more people begun to make allowances for my condition, They started opening doors for me, giving up seats on trains and in pubs. Suddenly no-one got impatient with my slow walking or when I had to stop and rest.  I  shouldn't have to carry a walking aid to alert other people of my situation, but I guess how else are people supposed to know that I need that seat?

I guess what i'm trying to say is, if you've been undecided if a walking stick might help you, it probably will. in more ways than you can imagine

Annie x

how i eat to manage the symptoms of my chronic illness, ehlers- danlos syndrome

This week I have mostly been having the cold of doom. Like serious doom. Its on its way out, but has left behind a lingering flare up of chronic fatigue. My spoons are far and few between... in fact most of them have buggered off all together and left me with a solitary knife. Needless to say the delicate house of cards that is my work/health/life/dietary/ physio balance, which is ordinarily teetering on the cusp of collapse at the best of times, has collapsed in spectacular style.

I am off work, but I dragged myself to physio (because missing physio is a sin of the highest degree!) only to be told off for not taking the day off. To my credit, I did a bit.....well...I cycled at the pace of a snail, I fell off a bosu board, I stood on 1 leg a few times and managed to row with such slovenliness that the rowing machine stopped timing me because it actually thought I had got off it! Sigh! So I went home, ill try again next week.

Anyway, rant over! I wanted to write about diet today. I have been advised a high protein diet. It makes sense, I'm trying to build muscle, for muscle you need protein....I am vegetarian. Every time I make a meal I have the voice of my specialist in my head shouting “protein” at me.

Now I'm sure each and every person with a chronic illness has had a barrage of “ you should try eating.....” advice, all of which I am willing to bet my walking stick on being unsolicited; and had little relevance to the condition that you are actually blessed to be the owner of. I.e. “my sisters friend has gout, she found apple cyder vinegar useful, you should try that”......oh thanks.....I HAVENT GOT GOUT!!!

But about a year ago, I was told about a book, about a girl, that was chronically ill, but had cured herself by changing her diet. Of course having heard a million “you should try drinking the blood of a virgin sacrificed by the light of a full moon” style helpful hints, I was quick to dismiss this one too.

But, then on my birthday a friend bought me a Deliciously Ella book, it was the very book she had been trying to recommend me for the last few months. I graciously thanked her and had a flick through. As I glanced at the very first page to my disbelief I saw the words “postural orthostatic tachycardia syndrome”....could this really be! Actually advice relevant to (one of) the actual conditions I have! My eyes did not deceive me. It was true. I didn't get my hopes up too much though, Ella has POTS as a primary condition and I have is secondary to Ehlers-Danlos. But I though, hey maybe its worth a shot.

So I started after my birthday (one last binge!), I decided to follow the dietary advice. This diet is not for faint hearted! Its is a vegan, gluten free, refined sugar free, preservative and other artificial ingredient free diet. It involves making everything form scratch all of the time, which can be extremely tiring if you're having a tough couple of days.

I managed to stick to it entirely for 6 weeks....then we had a holiday! …needless to say SHIT WENT DOWN..I'm not proud of myself, but I ate and drank everything in sight (except food with a face). Now up until this point I had noticed a few benefits form my new diet, but what really convinced me of its prowess was that holiday!...by the time that week was up I feel like dog poop!! I really noticed the difference, I felt tired, bloated and irritable...basically I was a hippo!

So now I'm back home, back on the diet it is! Now I never followed it to the letter, I kept hold of eggs! D's (specialist physio) voice kept running in my ears shouting “HIGH PROTEIN”. On my return from holiday I also decided to add Quorn pieces and mince back in as well. To relive the pressure to ensure a high protein diet.

The basic idea of the diet it to remove substances which might be a irritant to your endocrine and immune system. There is research that suggests that symptoms of many illnesses can be alleviated by removing synthetic preservatives and chemicals from your diet. E.G. synthetic sweeteners, trick your body into thinking its getting sugar so your endocrine system reacts accordingly and releases insulin. When the sugar doesn't show up, you get a low blood sugar. Voila... makes sense.

I have always had a * ahem * 'difficult' relationship with dairy, especially following an apocalypitc vomiting bug I caught a few years back in Bangladesh from some very suspicious cheese! But I had never really considered the effects this might be having on my immune system, if I have a mild intolerance to something, it makes sense that when I eat it, my body identifies it as a threat and sets of an inflammatory response to fight the malevolent creamy molecules off....I DONT NEED ANY EXTRA INFLAMATION!! so cut it out, cut out irritants, cut down on inflammation.

The same can be said for gluten, gluten free pasta is alright! gluten free bread not so much- several failed home baking attempts have taught me not to bother. Especially after mixing up a batter and putting it on the oven, only to discover I had added the dregs of my tea to the mix instead of the yeast solution ( I'd had it in a mug next to my tea)......TWAT!

As for sugar..well! Sweet tooth is my middle name ( not really..its Margaret). I love sugar, I love sweets, cakes (especially with ICE CREAM!), chocolate, sticks of rock, biscuits, ice cream. You name it, if it sugary I will eat it! Quitting sugar was the single most difficult thing about this, but thankfully, Ella is the same. She was a sugar monster too. So she has supplied a whole bunch of tasty sweet pudding and snack ideas, sans sugar! Hurrah! Honey, maple syrup and dates are my friends now. There are some seriously good recipes, my favourites are the banoffee pies, sweet potato brownies and scones with jam. I have been guzzling like a beast! I feel like Augustus Gloop in Willy Wonkas chocolate factory, but in reality there is nutritional value in them and I've actually lost weight eating like a pig! WINNNNNNNNINNNNNG!

What's more, we went to the cinema last week and I 'allowed' myself 10 whole pic'n'mix sweets....bugger me did my heart go mad! It was racing along so fast I was sure my husband could hear it (although the sweets can't take all the credit – we were watching a thriller!) I have decided to replace sweets with NAKD bars, made entirely form fruit and nuts; they're delicious and nutritious!

Obviously the key to success lies with Tupperware! Bulk preparations of meals and freezing them. Other wise you would spend significant spoons each day cooking. Ain't nobody got spoons for that! Then you get to enjoy the spectacle of 'mystery dinner from the freezer'. Is it lentil bolognaise, or is it bean chilli...who knows!!

Anyway, I've had a significant environment in my energy levels (pre cold virus!) and my POTS has calmed down a bit too. Also I am trying out new recipes and eating real food, instead of processed food like substances, which fill you up but leave your body craving nutrients. Everyone's a winner! i figure that eating crap and the expecting my body to be as well as it can be isnt going to work. it would be like trying to polish a turd! if i dont give my body the nutrients it needs it isn'

t going to be well.

I've learned to be a bit flexible with it though. Eating out can be a bitch otherwise...and I love eating out! So now every couple of weeks I will allow myself a cheat meal! I will have the pizza and ice cream (not together...I'm not a heathen!) I'll have the glass of wine ( if I have too!* sigh *) and I'll probably enjoy it even more because of the wait!

You can follow Ella @deliciouslyella for free recipes!and if you facny a laugh @deliciouslystella is a brilliant spoof (both instagram)!

Annie X

PS.. tequila is gluten free and made of agave ( usually sugar free) too! Oh tequila...you make me happy!!!!

PSS. I'm not a dietician, just someone who feels a bit better from doing this. If you're not sure if its a good idea or have been advised against dietary changes please speak to your medical team before trying it xx

A love affair with my bed (ehlers-danlos and chronic fatigue)

Today I'm writing from my bed, because, Yesterday I had to go to work (the injustice of it). My lovely husband has got up and fed our feline friends and bought me a cup of tea, so I can lounge about here in my happy place!

I love my job, they have been super supportive and accommodating and I have found the role that best fits my capabilities and I'm lucky enough to enjoy it. But, bugger me sideways, I am always knackered the next day.

Chronic fatigue has been an unwelcome visitor to my life on and off since I was about 16. The energy sucking beast. It steals all your energy and leaves you feeling like a snail that's been trodden on and then scraped from the sole of a school kids shoe. It's like wading uphill through a vat of custard. Fighting it's is about as useful as trying to polish a turd!

It was then that I started my love affair with my bed. Since then I have loved nothing more than diving into its cotton covered caress. Obvs...not literally diving, or I might do myself some damage.

 I love nothing more than snuggling up and slipping off to dreamsville. It's taken me quite a while to formulate the perfect mixture of pillows, duvet and memory foam mattress. But I've cracked it and now I'm cozier than a butterfly in a coccon.

My personal recipe for nocturnal bliss is:

1. Memory foam mattress topper. The best money I've ever spent. It seriously takes masses of pressure off my joints and has really reduced pain. I miss it so much whenever I go away. You marshmallowy marvel!

2.leg pillows. Ahh leg pillows, you fantastic beasts! I have 3, I sleep with them under my legs to ease the pressure on my back. However, my lovely manface seems to be able steal my leg pillows in his sleep....Erm...GIVE THEM BACK!! I wake up, and somehow...they're under his legs!

3. My bed handle. The most hated of aids. Bought to me by the lovely occupational therapist that came to see me. It sits there (ugly little prick!) looking at me whilst I sleep. Ruining the romance in my bedroom. But even I, hater of the handle, have to admit that it does help me get up in the morning *sigh*

It's now midday and today I've planned to visit my beautiful supportive buddy. So now I begin hauling myself from the folds of the linen, have a stretch and listen to the symphony of my joints waking up. All whilst wondering if she'll mind if I don't shower.....

.....oh wait....I've got cats on me....and everyone knows you can't get up if your cats are on you! It's the law!

So.... namast'ay in bed!

POTS (postural orthostatic tachycardia syndrome) is a bitch...and and unwelcome side effect of ehlers-danlos!

Today,my POTS is being an ass. Hole. Granted, I don't have it as bad as some of my compardres. To me it is like an annoying little wasp flying around my head and getting in the way. Threatening to strike me down when I least expect it. Or at least to give me palpitations and make me feel like ive had one too many when I fail to drink 4 litres of water a day.

 I used to suffer much worse, before I discovered drinking excessive volumes of water actually helped...who knew keeping hydrated was a good thing! It can feel like a full time job, but I totally notice if I don't keep on top of it.

 I also cut out all caffeine, it was quite hard. As everyone knows, all nhs employees exist on a diet of custard cremes and caffeinated drinks. Owing mainly to the fact that we're all too busy to stop for lunch! Cutting out the caffeine just left me with custard cremes...hard life! And a caffeine withdrawal headache worse than any hangover I've ever had EVER! But after about 3 days, the silver lining broke though and I felt better for it. 

 In other news, drinking this much is sure fire way to test the capabilities of your pelvic floor muscles....it'll make you pee like sea biscuit! Wow! I've also found increasing my salt intake helps my body to hang onto the water a bit better. Now I get salt cravings. Like I need a litre of water and some peanuts STAT! 

This meme made me chuckle, it's too true! (Sorry I couldn't find the source to credit on Google Images) I'd love to hear what anyone else has found useful?

Off to find some peanuts

Hi, I'm Annie :-)

I'm Annie.

I am a bit of a hippy, a wife, a midwife and I love to make things...all kinds of things! (Www.anniemadeit.com if you want to take a peep) one thing I am not, is a writer. I have no writing experience (except essay writing at uni) and I don't know my nouns from my pronouns. Nonetheless I want to share my experiences of living with Ehlers-Danlos syndrome ( hypermobile type) and meet others doing the same. That's me, in the picture on a good day, I'm looking very happy and the inner me is shining out. I was getting blown around by wind just before a storm.

Like many people its taken me a long time to get diagnosed, I managed to make it to the grand age of 27, having completed a midwifery degree ( in hindsight perhaps a poor choice!) and done considerably too much DIY for my collagen to handle, before I received a diagnosis.

All my life I have had loads of symptoms of EDS, but like many others, the dots weren't joined. I'd had talipes as a child, numerous trips to a&e with unexplained sudden joint pains, chronic fatigue syndrome that left me falling asleep standing up at a live music venues, hip pain that felt like I had a cheese grater stuck between the ball and socket, reynaud's phenomenon in my hands, feet and weirdly...nose! (which regularly leaves my patients begging me not to touch them!...with my hands that is ..not nose...that would be weird), Postural Orthostatic Tachycardia Syndrome (hence forth known at POTS), regular unexplained bruises and cuts, terrible global joint pain, carpel tunnel syndrome, hand tremors and the least said about my digestive system the better!

Anywho, eventually, having undiagnosed EDS and trying to work full time as a community midwife took its toll. It all came crashing down around me, I got degenerative disk disease in my lumber spine, my hip pain became unbearable and my sacroiliac joints (the bit that attaches your pelvic to your spine) gave up... oh and other joints decided to jump on the band wagon too...thanks!

I found myself in a lot of pain in a lot of places, so off I went to see the rheumatologist. My pain and other symptoms had gotten so bad I couldn't walk for more that a couple of minutes, I now use a walking stick and often feel very trapped inside my body. I had to give up my job as a community midwife and find an alternative role I could do with my condition. I had to give up a lot of my hobbies, including knitting, paining and sewing. I had to give up yoga. I was unable to manage the housework and cooking, I found taking care of myself hard work. You could say things got a bit messy!

When I look back, it was glaringly obvious that I had EDS-HT...but hindsight is a wondrous thing. I have a diagnosis that fits. One of my lovely buddies said...”oh I though you moved like that because you were being quirky”..haha, I love her! The support I have received from my friend and family has been brilliant. They rock! Especially Mr H, who always know what to do to help, exactly when I and how I need it (smug!)

I have great support from the many medical professionals I have encountered along the way so far. I am incredibly lucky where I live, I have the most knowledgeable extended practice physiotherapist who works with my rheumatologist and specialises in EDS! How fabulous! She pretty much coordinates my care. I went to see her first shortly after my diagnosis, I was a right mess at the time ( physically and mentally). To meet someone who understands you, and your condition was the most incredible feeling. The relief I felt knowing that she knew about what was wrong with me and how to help was indescribable, overwhelming joy!

She was very honest with me, she gave me a choice. She said “its up to you, you can stay as you are. Get worse as you de-condition. End up in a wheelchair. or...you can fight!” she offered me a weekly physiotherapy for as long as it takes for my body to build the strength it needs; for my muscles to start doing the job that my ligaments aren't. She told me, it would hurt, It would take years but she believed I could do it. But I had to make a massive commitment. I would have to do my physio every day, without fail, no excuses! Even on the days I feel like I might ACTUALLY die,I still have to do it! I thought I have nothing to loose. I am in pain and I'm tired everyday and if I looked back years form now and I hadn't seized the opportunity, I might have always wondered if my life could have been better if i'd given it a go! So why not make a change.

So, I CHOSE FIGHT! And a full year on from first seeing her in her clinic I am just starting to see some improvement, she was right! When I first saw her I cant say that I believed her. I thought she was one crazy lady, but it turns out that with her 20 years experience, she turned out to be right! Who'd of thought it! So now I do around 90 minutes of physiotherapy exercises each day. I had to work up very slowly from almost nothing to where I am today. There have been tears. There have been tantrums. There have been 'FUCK THIS SHIT' days! But I have persisted. I now have a love/hate relationship with my physio's!! I am so unbelievably grateful for the NHS, without it I would be jobless and my condition would be significantly worse right now!

I have absolute miles to go, but I am starting to see a small flicker of a glimmer of the light at the end of the tunnel. I know that I will have to do physio for the rest of my life to keep the light burning.

I wanted to share my story and some of the things I have learned with others. I'm not an expert, but I want to share what I've learned; and learn about what other people find works. But most of all, I want to be positive and to laugh at myself in all my weird bendy glory! and I love to meet some of you bendy weirdo's out there,

so...hi! I'm Annie x