Hi, I'm Annie,

Hi, I'm Annie!
I'm a bit of a hippy, a wife, a midwife and I love to make things...all kinds of things! 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). 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!

you can check out my website at www.anniemadeit.com
or keep in touch www.facebook.com/anniemadeit
instagram @anniemadeituk and @collagenisforwimps

Saturday, 29 October 2016

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

Wednesday, 19 October 2016

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!

Monday, 17 October 2016

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