“When you hear the sound of hooves, think horses, not zebras” … This is what medical students are advised during their training apparently. They are taught to assume the most common cause of symptoms and forget to consider that zebras DO exist. Ok so perhaps the majority of people do fit into the ‘right’ boxes but that doesn’t mean everyone does, it turns out I don’t!
Before I get carried away with any more tasty recipes I thought it was about time I explained to you exactly what all my ‘conditions’ are. Don’t get me wrong, I’m no expert and I’m still learning myself but I can share with you what I know and you can join me on my journey of learning all about them – that’s what I intend to do … Learn, understand, defeat and bake! This is a no pity party zone, yes I admit I have days where I moan a little more but deep down I know this stuff will not get the better of me because I will never allow it 🙂
Let’s start with the boss shall we, the one that appears to have caused the majority of my issues, Ehlers-Danlos Syndrome Type 3 … The hypermobile one (aka EDS3 and the reason I am The Baking ZEBRA). EDS is thought to be an inherited condition caused by a mutated gene or genes which affect the functionality of connective tissues throughout the body and possibly collagen too. At first I thought this just meant some of my joints moved more than they should but it turns out connective tissue is involved in The skin, tendons, ligaments, blood vessels, internal organs, teeth and bones, that’s a LOT of things to potentially go wrong! Apparently there is a fine line between having joint hypermobiliity syndrome and have hypermobile EDS, I’m not sure where that line lies yet but they base the diagnosis on other symptoms and issues likely to be caused by connective tissue. I had no idea half of my problems were even problems until all of this, I thought it was normal to have some super bendability, I was sure everyone had daily pain the way I did, almost daily headaches weren’t something to be concerned about and feeling nauseous after eating had become the norm. How wrong was I?! So how does EDS affect ME? Apart from having stretchy skin, bruising way to easily and having an arthritic back at the age of 27 … the fatigue is a killer, I used to think fatigue meant really tired but once you actually suffer the wrath of fatigue you realise it’s way way worse than that, the effort it takes to get up in the morning and get going is just ridiculous and it only gets worse throughout the day. The pain I am actually coping with OK these days, my parents used to joke when I was younger “Oh what’s hurting now … What’ve you done this time?”, I’ve always been clumsy but turns out the joint pain is because my joints aren’t supported in the way they should be and so are easily over bent and strained. Brain fog, you have to see the funny side of this one otherwise it has potential to really really upset you as you begin to feel you are kinda losing the plot, I walked home from my doctors last week having driven there (thankfully it’s not that far so I casually strolled back as though I hadn’t just done something so stupid!). In my case this is caused by EDS and POTS which I’ll explain later but in short due to my floppy veins and connective tissue structure in my legs being weak the blood heads to my feet and not my brain, this lack of oxygen causes the brain fog. Feeling a bit nauseous and so so tired after eating is the other annoying one because I love food, apparently when a human eats, blood is sent to the tummy to break down the food and in my case this means yet again my brain and other places it’s required isn’t getting quite as much as they need which makes me feel mega sleepy after eating and it’s suspected due to the pesky connective tissues not doing their jobs properly in the stomach may be the cause of the nausea and slow digestion.
On to POTS, aka postural orthostatic tachycardia syndrome, or ‘a stupidly fast heart rate when you stand up’ as I call it. This is most definitely due to the EDS, I only received my official diagnosis back in June so it’s all very new to me and from what I understand I’ve got away lightly so far as it can actually be a very debilitating condition. When I stand up gravity pulls blood to my feet, this is normal however my bodies automatic nervous system should tell my blood vessels to narrow and therefore push the blood back up my body but it doesn’t because it’s slightly malfunctioned (that’s the dysautonomia) and therefore my heart rate increases by at least 30bpm and usually soars over 120bpm in an attempt to get my blood back to my head. A lot of people with POTS suffer with fainting but thankfully I have escaped this for now, I get the dizziness, palpitations, hand tremors, stabbing chest pains, headaches and a bit of extra fatigue but to be honest as soon as I was diagnosed properly and I knew what was causing all these things it’s almost like I accepted them and haven’t given them much thought since. These things all make me who I am and I will just continue to find ways to manage them, it does annoyingly mean that hot baths and sunbathing are a no go anymore as the heat causes blood vessels to dilate and I can very quickly become horribly tachycardic, I figure I can happily live without those things!
Dysautonomia is the next on the list and is used as an umbrella term to cover many issues which are a result of a dysfunctional, but not failing, automatic nervous system – just think of anything your body does without you thinking so breathing, digesting, organ function, body temperature regulation, these can all be affect. I still don’t understand the connection but EDS, POTS and this are all closely linked and cause each other somehow! It’s really just the digestion and heart rate issues I struggle with here and the inability to regulate my body temperature meaning I’m usually too cold or too hot for no real reason!
Last but not least I will share with you my most hated, and in fact the reason this EDS trail was highlighted in the first place … Lipoedema. Majority of doctors still haven’t heard of this bizarrely and have an irritating habit of telling me I’ve got it wrong and it’s in fact LYMPHodema that I have. NOOOO! It’s really not! This is a tricky one as no one really seems to understand it yet and although it is not only EDS sufferers who get it they think in my case it’s a connective tissue problem. Lipoedema is an abnormal build up of fatty tissue under the surface of the skin, dieting doesn’t help as its a different form for fat and there appears to be little anyone can do to help. It is something that may continue to worsen as I get older and is something I find hard to ignore. Unfortunately baking requires long periods of standing and even with compression leggings on I usually go to bed after with very swollen and very sore legs. I am determined to find a way to stop this one, or at least prevent it getting worse and also to raise awareness to GP’s and other medics so hopefully others can find answers like I eventually did but without going through the years of torment I had to endure being told I was just overweight, or I ate too much or I should exercise more.
So here it is my health story on a plate, slightly longer than I would have hoped at 27 years old but hey we are given one body to work with and mine is just settling into its new slightly abnormal routine and then we are going to do great things together. I don’t tick many of the ‘common’ boxes and that is probably why it’s taken the best part of 12+ years to reach a diagnosis buy I’m there now and I’m happy being a zebra … I love horses anyway and they’re practically the same thing 😀 xx