*Updated March 2018*
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 🙂