*Updated* ‘It’s all About me’

*Updated March 2018*

Hi,

I’m Victoria, I have Ehlers-Danlos Syndrome (Hypermobility type) (EDS HT).

EDS is a herededitary connective tissue disorder which pretty much affects the whole body. More on that later…

I follow a ‘low FODMAP’ diet and have more recently converted to mainly plant-based whole food way of eating. The FODMAP as I have suffered for most my life with stomach issues thanks to EDS as it causes advance weakening of the gut in many places; from swallowing (I only swallow on one side nowadays) all the way through to the very end 😦 For me it’s the same symptoms I assume most have with IBS, and with the added bonus of diverticular disease, a very slow gut, bowel prolapse regular nausea and generally all round gastric fun….gee I’m not selling it am I? Anyway – if you’re here it’s probably because you know how a lot of this already feels so i won’t get too unnecessarily graphic while we get to know each other.

So for me as my tummy problems are a functional disorder my gut can be helped by low FODMAP in the same way it helps those with IBS, crohn’s and lots of other tummy nasties. The success stories are amazing but it’s not for the feint hearted. It can end up quite a commitment given if you work out you can’t reintroduced some food successfully (in particular for me onion garlic, too much wheat, beans, nuts, some fruit and veg etc.) it can make eating out and at friends tricky. Top that with my most recent move to plant-based and you’d think I’d be a size 6! I’m definitely not although the plant based is deffo the way to go to help slim down if that’s what you’re after. For me neither of these eating changes are for my weight. It’s all about doing everything I can to feel better. I’ll do another blog on plant-based at some point!

So, FODMAP don’t get me wrong, I know it’s not a cure for me; I still have various issues most days somewhere down the gastric path, but it does help reduce the symptoms. If nothing else it’s made me make more of an effort to vary my diet and recipes and means hubby doesn’t have to sit waiting in restaurants for me between courses throwing up the starter anymore!

So a bit more on EDS – if you don’t already know about it (it’s one of my responsibilities as an EDSer to teach a few more people about it as its so badly diagnosed – only 1 in 5-10,000 diagnosed it’s believed- But there are definitely more of us fighting for a diagnosis, it took me to over 40 to get mine. If much of this rings true to you or anyone you know please research it and push for a formal referral to a rheumatologist!

So having been dismissed from my first emergency stomach issues hospital visit as having ‘bad indigestion’ after agonising pain as a young child, suspected appendicitis as ‘nothing wrong with me’

From then on I was never believed when I complained of aches pains and tiredness, my poor dad could never get me out of bed to go to school, so I suppose I was just thought of as a moaning drama queen for ever more! It’s amazing how you learn to live with things. Looking back there were loads of things that make so much sense now I have a diagnosis. Even if there is no cure it helps to know you’re not going completely mad or a complete hypochondriac. (Although there are still people even in my family who still think I am – unfortunately this is another common frustrating and painful thread in our community).

Apparently I had hip issues as a baby, needed various physio at less than 3 for ‘walking funny’, I was always falling over, as a child, things like writing using a pencil between my toes, wearing special built up heavy ugly boys shoes in the summer, I was always tired and very ‘clumsy’ thanks to dreadful proprioception (Which has got no better at my age!) In turn I was labelled lazy, always dropping things and dragging behind… My family saying for me was ‘wait for me! wait for me!’ as I fell behind everyone else. A few random asides that also make sense now were weird allergies like perfumed soaps and household dust apparently. I often struggled with stomach upsets, used to regularly dislocate my shoulders and move my knee caps about, my party trick as a teen being able to do a full loop of my body forward and backwards with my hands clasped used to get some gulps. I was ‘good’ at gymnastics at junior school as so bendy but was never really strong enough to be properly good. Then as I got older, I would get constant nose bleeds as a teen and ended up having my nose cauterized eventually. I always felt so weak, I was dreadful at and hated running with a passion. It was always so painful and tiring, my heat would burn and everything hurt within a few yards of trying to run. I just assumed that’s how it felt for everyone. Everyone hated PE right?

I would go for dental treatment and the local anastethic never worked, I would need injection after injection, my teeth crumbled when pregnant… (On and the local didn’t work for post delivery stitching either which made childbirth feel pretty easy in comparison 😬) all these things seemingly overwhelming all part of the joys of poor collagen!

As its such an invisible illness it’s a hard one for anyone to understand. I look ‘normal’ I paint on my smile, I try to stay positive and get on with life best I can and I just generally look pretty healthy, to the point where my skin for example is rather good for my age, very soft smooth and stretchy. Again the skin of EDSers is what we’re ‘famous’ for – other types of EDS such as classical were often the ‘circus freaks’ of yesteryear!

It affects pretty much everything from tired scratchy dry eyes, to wobbly jaw pain, my head feels like its a bowling ball balanced on straw. Every joint hurts at one point in the day, my back constantly screams st me if I try and walk for more than a few minutes and standing up can make me feel like I’m about to pass out as the autonomic nervous system is a mess… In the last few years everything has got worse as I stiffen up. Have needed a few procedures, have bulging discs in my back, ridiculously flat feet, a whole heap of other things but the list goes on…

Anyway I digress.

So to the non EDS / FODMAP stuff,

Despite that all sounding rather ‘woe is me’ I am actually a very lucky lady!! I am married to the gorgeous Neil. Mother to grown up beautiful amazing girls; Lauren and Annie and Step Mum to the rather handsome and loving (looks like his Dad) Jack. He met the beautiful Rosie a good few years ago and on a hot day in July 2016 they brought my gorgeous granddaughter Fifi in to the world. If anything keeps me up and smiling it’s her. She still melts my heart every time I see her 😍

I now work part time (hanging in for as long as I can) as an IT Service manager in an insurance company in the city. I enjoy any holidays – preferably in the sun, but the heat is getting a bit much nowadays so holidaying in Whitstable is my new go to! I like to write the odd poem, check out my favebook page https://m.facebook.com/PoemsbyVictoriaPayne/, I spend a fair bit of time researching support and advice for my condition to make sure I’m being a ‘good patient’, I also enjoy searching for and now cooking, taking pictures of and sharing low #FODMAP #plantbased meals.

Thanks to encouragement from my hubby I finally made a start on writing some stuff (and occasionally remembering to take pictures of my dinner which seems to be a pretty acceptable thing to do nowadays)

Hope I can help some fellow FODMAPpers and EDSers out. Looking forward to getting on with it but I do get lazy (see even I say it) so bare with me!

You’ll notice I do the digressing thing a lot (can I just blame that on the constant fatigue and woolly headed brainfog?) so anyway, not sure how well this stuff will blog as I write like I think – apols in advance if you get lost – there’s a good chance I will.

Happy for all feedback. Thanks for getting this far 🙂

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Purple plants

I just wrote a whole post, was almost ready to publish and closed the window in error.

Gutted and I have to move now before I seize up so short version…😂😳

Anyway some beetroot hummus. I’m actually coping with beetroot a bit lately, very strange…. my taste buds surprise me daily atm following this plant based way of eating. I’m loving it!

And my hubby’s rather tasty asparagus, tomato and lemon risotto (with stock from red cabbage water hence the purple!) was lush! Hubby had his with the rest of the pack of beetroot chopped in (way too much dirt flavour for me)

Tasty GF coffee and walnut cake

I didn’t think I even liked coffee and walnut cake but my husband does so thought I’d give it a go and mmmm it’s good. Low FODMAPpers probably should go easy with a recipe like this, if you’re in the early cutting out stage you should probably use lactose free alternatives for the milk. 

Nigella’s coffee and walnut cake (GF)


After the excitement of getting almost 8 hours sleep last night I celebrated today by making my first #glutenfree #coffeeandwalnut #cake today not bad even if I do say so myself!
Recipe above is a Nigella bake, and nice and easy as you only have to chuck stuff in the mixer, the hard work puts me off baking so I was sold on this!

To be fair the mixer is probably what made it a bit denser than I’d have liked but I really don’t do the science of all this malarkey, I just enjoy doing some when I can.
I clearly need something like this in my life very soon though 😜


So that was about as productive as I’ve been this weekend but it’s been a rather lovely one, I leave you with the end of my day 😂😂🙄🙄

‘Not’ following fodmap

Honestly, it really shouldn’t be that hard should it?I’ve been ‘low fodmapping’ for either 2 or  maybe 3 and half years now, I really can’t remember (Scuse the brain fog that’s another chapter) you really think I’d have learnt by now right?

Apparently not. 

I’ve been lucky I suppose. I bluffed it for a while tbh, my friend told me about FODMAP, printed me some stuff, I got confused, couldn’t understand it but read some of a book, googled a bit, downloaded the app and thought how hard can it be?  Even my Gastroenterologist (EDS specialist Prof Aziz) strongly backed low FODMAP for functional gut disorders like many of us with EDS, POTS and Chiari, oh and diverticula disease,  there’s more but you’ll start to drift off… So it’s clearly helping millions globally now so I thought I’d give it a go.

 I knew wheat was an issue when I started it but I hadn’t even thought of onion and garlic and how the hell can that much fruit and veg be BAD for you right? But at this point in my life long dodgy tummy troubles I’d started to not make it through to the main course at a Chinese restaurant without throwing up the starter or, well, lots of other stuff you really don’t wanna hear and if you’re reading this coz of the subject I’m sure you already ‘know’. So anyway, I knew I had to do something, on top of all the aches and pains and shitty symptoms of my conditions I figured this might be something I could finally maybe help to control.
 Once I got well established in the FODMAP way and felt the benefits (not spending quite so many hours leaving my poor hubby waiting at the table in restaurants so many times or having to rush back to the room on holidays so ill from all the high FODMAP goodies) I thought I could manage things.  I often had early “I JUST WANT A TAKE AWAY” blunders of “I’ll be fine I’ve got to try introducing stuff” er…hem…cue rolling around the floor of the bathroom in agony. Yay go you; you won’t do that again in a hurry will you?

You’d think huh?

Well as you can imagine being a bit stupid and forgetful, this has happened many times again since as I sometimes have an ok week where everything in there just works, maybe, I get in to a false sense of security, i think I’ve been fine. I often have sweet and sour king prawns and they do it without onion or garlic so it’s a nice but potentially risky treat… but of course it has some wheat, then I can’t have that and not have king prawn balls….

Trouble is once you’re deprived yourself of the ability to just go for dinner wherever you want it gets frustrating. I’ve always loved eating out whether just with hubby or with the kids and other family and friends it’s one of my favourite things to do. So It got me down for a while but I can work round it now I just have to be careful. Sometimes you just have to go for it and hope for the best although restaurants all get the Gluten free deal, even people with seafood allergies or lactose problems. But FODMAP? Blimey that’s a whole other story to cope with but I can usually be ok if I can ensure no onion and garlic and a little wheat is ok. Trouble is even when you ask there’s often some onion power in something or you wonder did they check the spinach has no garlic (I can usually smell it a mile off now though!) but then I might have a quick nibble of the bread then a glass of wine then you get brave with the olives that may have been in with garlic but you’ve relaxed and thought I’ll be fine…. der; you’ve got no chance. 

It really depressed me for a while the whole going out thing being a risk or knowing I’d just get so knackered half way though you wanna go home or you’ll be knackered for the next day but I’m usually gonna be physically broken from going out anyway So i mostly now just get on with it. There’s no point getting down about it. TBH eating out and being ‘difficult’ seems to bother more of the others round me as no one really gets it and I think others probably think it’s just some fad to be difficult…so I end up feeling difficult or not asking /  pushing for things to be checked. I know it sounds silly but again probably another chapter!

Fodmap can be a real life changer for many reasons. Being in control and helping me to try new things at home has been great, knowing what’s in my food is a big plus but of course it’s all so much effort some, okay a lot, of days. There are usually a number of days every week I just can’t be arsed to stand up long enough to prepare anything.

 Anyway, I’m maudlin! Just letting my bad day / week  out. It’s been one of those weeks  (funny re reading this as I actually wrote it originally months ago and didn’t get round to posting yet last week was very similar! This being one of those game changer reminders where yet again I forgot that today was the worst possible day to eat anything ‘bad’ but just when I crave it! My body’s pretty much been on a long shut down this week, two days of migraines awful debilitating neck and hip pain (see chiari / EDS) all while / because of the Mental / pre menstrual physical days from hell so many with chronic illness / EDS suffer so much from. It’s bad enough for most women without the other shit but for us spoonies it seems to tip us over the precipice of pain and tears.

So of course I thought sod it im having stuff I want but if course here I am, stomach exploding, bloated, pots symptoms going mental all week, below was just before my HR rose to 140+, my head starts immediately pounding in agony, blurry shaking feeling sick and have no choice but to sit before I fall 😦 


Arrggghh some days life’s a bitch!
Dont worry kids You don’t have to copy my way. You can be more successful with FODMAP. Listen to the advice of experts and look after your body!!

Xx