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