So I’ve never been great at putting meals together from nothing; I tend to stare in cupboards and fridges and expect a meal idea to pop out, it invariably doesn’t! But give me a recipe or see something I fancy and I might just find ways to make it different or even maybe better….!
A good friend of mine (lovely Lucy) starting talking ‘FODMAP’ at me a couple of years back, personally it all sounded a bit ‘out there’ and somewhat complicated, but the more research I did the more it made sense. And knowing the lovely Lucy I figured it was worth a try.
So it all started way further back, as a very young child I had lots of ‘issues’ from sitting, crawling to walking apparently I was clearly a bit ‘odd’ as a child, I used to fall over all the time, needed physio to aid my walking and funny feet at a young age and remember having to wear big clumpy embarrassing shoes through the summer even though I just wanted to be ‘normal’.
‘Wait for me wait for me’ was my family’s catch phrase for me; as I always fell behind. As I got older I was taken in to hospital with stomach pains (parents and hospital assumed potential appendicitis) but told it was likely just indegestion and we were sent our marching orders so I was dismissed as being an attention seeker after that…
I was ‘good’ at gymnastics as I started to grow up, being ever so stretchy, I thought finally I could be good at something but I never really had the physical strength or coordination to be great at it. Even writing was hard work for my bendy fingers but I suppose I assumed that was the same for everyone. As a teen I struggled to get out of bed every day to go to school and was dragged out with a wet flannel. I just wanted to sleep more. I hated PE and sports day, dreaded cross country and ever having to do anything too physical. I suppose there were others like me You might have looked down in at school. I guess I knew something wasn’t right but just went along with my by now ingrained lazy label and assumed it all hurt that much for everyone.
So for ever more in my family that’s how I’ve been seen and how I have continued to be be made to feel. Being made to feel somewhat ashamed of my condition is not a rare story, in fact speak to about 90% of EDSers will have a similar past, some may have even excelled at dancing, ballet etc but might be prone to injury more than most, the. Start to get pain once they reduce their exercise levels. sound familiar?
Being bendy as a teenager was more fun though, I realised I could clasp my hands together and move my arms 360 degrees around my whole body, forwards and backwards. It became a bit of a party trick where classmates and pals would baulk at the idea but still make me do it over and over for the entertainment.
When I got to about 17 I had been working hard for a couple of years, I liked earning money and not been seen as lazy anymore made me feel good, unfortunately it started to hurt more. My shoulders had taken a pasting from all those party tricks and were starting to affect me at work. A few years on the phone getting insurance quotes meant I had permanent neck and shoulder pain. I’d go out and strain a knee or sprain and ankle rather too easily… I had no idea all these things were connected, you just don’t. My GP’s definitely didn’t.
Sadly if you looked at my medical history before I was diagnosed anyone with any basic knowledge of EDS would spot it. Even when I showed my party trick to my GP and explained how painful it was, he just looked a bit grey and said ‘er you probably shouldn’t do that!’ But basically left me to live with it. I had various ailments over the years but hated going to the doctor and always felt unbelieved
Luckily I had my kids very young, while I was still realively fit and naïve to the condition. So I had terrible back pain, carpel tunnel syndrome, horrible acid indegestion, was admitted to hospital at 24 weeks while on holiday for how strong my braxton hicks were. Very quick labours both times but loads of pregnant women have similar right? Maybe someone should have suspected something when the local anastethic really didn’t work for the 30 plus internal stitches I needed after my first daughter? I still remember the pain of the stitches more than childbirth. It was quite horrific (but I’ve probably had worse migraines since.)
They didn’t believe me then either. Then when I ‘closed up’ completely 6 weeks later and had to have laser surgery while still awake was no fun. Visits to the dentists where local anastethic never worked either were horrid, I just assumed it wasn’t supposed to take all the pain away and that I was probably just weak and had a low pain thresh hold, when in fact I think it must be quite high. Chronic conditions train you to have to learn to get through each, OK MOST days with a smile on your face.
So when it came to my gut thats also gradually got worse over the years, my Dad had always had stomach issues, including hiatus hernia, diverticulitis etc, I was again labelled as having my fathers ‘weak stomach’, technically I have I guess as I clearly have his EDS gene as my half sister is also affected.
So regularly back to the doctors, in hospital a few times and a number of procedures and tests I was told ‘I just have IBS’ and to try and not be so stressed – yes, that would help. Eventually as things got worse, I changed jobs, took less responsibility, tried hard to relax, eat healthily etc. I’ve not had a ‘ready meal’ in years and we even had our own allotment at one point but nothing got better, in fact it was all getting worse. May have been something to do with the amount of onion and garlic I was devouring from our allotment very much a no no for most on low FODMAP and I loved it 😦
Every holiday I’d have additional agonising pain and awful diorreah despite being at my most relaxed. I knew it wasn’t ‘just IBS. At one point I thought I might be pregnant again I felt so regularly sick! I couldn’t understand how this could be?!
So finally after years of everything hurting more, my back in constant pain, the joint pain, headaches, the xo aren’t fatigue, generally feeling ‘odd’ from undiagnosed autonomic dysfunction getting worse etc I stood up to my GP, I told him I couldn’t go on as I was (and yes I was told I was probably depressed again it’s a regular diagnosis for people with this condition) but I knew I wasn’t. I’d been through depression a few years earlier for a year or so and knew how that felt. This was not depression. I remember him saying ”so what is the problem now, your back or being tired??” Aghast I said ”both!” It was all starting to take over way too much of my life to be normal. My back was stopping me want to do things, my all over joint pain, constant heart palpitations and severe fatigue were not ‘normal’. Luckily I had private health care so he agreed to refer me to a rheumatologist. Don’t get me wrong the local rheumatologist wasn’t amazing and dismissed all these issues being connected once I find out more but within 4 minutes of seeing him he told me I had ‘Hypermobility syndrome’ it finally gave me something to go on, he mentioned he happened to be in the army with (the rather incredible) Professor Graham and my research continued from there. As soon as read more detail on the symptoms everything fell neatly in to place. Finally I had an answer to everything. Such a relief at first, knowing you haven’t been going mad all these years… However ultimately a curse. You get on the merry go round of all the specialists and it’s draining. It’s sad learning there is no knowing cure, no super fix drug, knowing you’re stuck with it for life.
So lots more since then, I have been able to reach the best professionals under the London Hypermobility unit (Dr Kas Kas, Professor Aziz who conducting a significant number of no so fun tests confirmed definitely not just IBS but functional and indeed impacted by autonomic features too; remember small regular meals where you can with low FODMAP especially if you have POTS, many a day have had to lie down after lunch professor Mathias Dr Levi and their hydro and physio specialists) I have another neurologist for my chronic migraines who is also specialist in my specific conditions as well as a neurosurgeon to monitor my Chiari Malformation (saggy brain) now over 14 healthcare professionals keeping me going, yes it’s a full time job!) and a few not so nice procedures later I feel done and am doing all I can to help my formal diagnosis’ of EDS- HT aka Ehlers-Danlos Syndrome Hypermobility type aka EDS III, autonomic dysfunction / POTS, Chiari Malfomration, diverticular disease and a load more stuff I won’t bore u with but let’s just say it’s MULTI systemic. Connective tissue and the autonomic nervous system are pretty key features in keeping moving!
So tummy issues are just one small part of this multi systemic condition, but getting the best advice from my gastro and specialist colorectal nurse and following a significant number of not so fun tests confirmed definitely not just IBS but more functional (or rather dysfunctional!) and indeed impacted by autonomic features too; remember small regular meals where you can with low FODMAP especially if you have POTS, many a day have I had to lie down after lunch.
Its been tricky, food, well food plays such an important part of our lives, its what makes one part of the conditional ‘visible’ in people’s lives, most of the rest is invisible…For me food has always been a social and happy time that I have enjoyed with family and friends so much for years. It’s been hard to adapt; life changing in fact but I can safely say I believe the change to follow low the FODMAP diet has been worth it for me
To learn more about low FODMAP I highly recommend Googling the Monash university pages (they have a very helpful app) EDS UK have a link here http://www.ehlers-danlos.org/patient-support/management-advice/diet-and-eds/fodmap-diet/
I hope some of these ideas and recipes will help someone else. We all have a story to tell so let’s tell it around food. One of our greatest gifts in life.