Hi I’m Jak and I live in the north west of England. In 1994, following an allergic reaction to an anti-sickness drug, and catching several viral infections one after the other, I developed Myalgic Encephalomyelitis (M.E.). 2 years later I contracted meningitis following a meningitis vaccination for travel abroad and was bedridden, and at times critically ill, for the following 10 years – you can read about my journey with ME here. I still have M.E. but am now largely housebound but no longer bedbound.
As my M.E. improved, and my activity levels increased, my pain levels went berserk. Following a chance remark by my M.E. Immunologist that my pain was probably due to the fact that my joints were hypermobile, I researched “joint hypermobility” online and realised I had almost certainly been born with the genetic disease Ehlers-Danlos Syndrome (hypermobile type) – see my EDS journey here. I asked for a referral to a specialist Rheumatologist in 2010 and was diagnosed with H-EDS, scoring 8/9 on the Beighton Scale.
Unfortunately, that wasn’t to be the end of my medical journey. After joining some Ehlers-Danlos Syndrome forums online, searching for answers to the weird and frightening reactions I had to food and medications, I came across Mast Cell Activation Disorder and realised that I had all the hallmark symptoms (see my MCAD post here). For some, as yet, unknown reason MCAD is more common in people with either Ehlers-Danlos Syndrome and/or M.E.. I asked my GP for a referral to an Immunologist with a special interest in mast cell disease (I had to pay privately) and was diagnosed with “probable” Mast Cell Activation Disorder and definite Histamine Intolerance (due to low DAO levels).
In 2015, following an MRI scan for pelvic pain, it was discovered I had extensive endometriosis, adenomyosis, uterine fibroids and polysistic ovaries. I’ve had excruciating period pain and other menstrual symptoms since I was a teenager and can’t believe it’s taken nearly 40 years for these diseases to be identified. Unfortunately, I’ve reacted badly to hormones in the past so using drugs to control my periods wasn’t an option and although I badly needed a hysterectomy I’m allergic to both anaesthetic and pain relief so that was considered too risky. I am in peri-menopause, though, so I’m hoping that once my periods stop the pain might become more bearable (though it’s doubtful it will stop completely due to the extent of the endo and adeno).
I’m going to stop seeing any more doctors in case they diagnose me with something else! 😉
This site is my personal blog following my personal journey. It’s not an information website though I hope some of my posts are useful to others in the same position as me. I’m not a doctor, nutritionist or any kind of expert, so the best I can do is to answer any questions (which I’m always happy to do) based on my own experience – I don’t give advice because I’m not qualified to, plus I don’t know you.
I live in the middle of nowhere surrounded by sheep and farmers. I am northern and I can be blunt – I don’t mean to be harsh, it’s cultural and I can only be who I am. I swear too much, have a sarcastic sense of humour and I just tell it like it is with no frills. I do not count my blessings – there is nothing good about being sick, alone, skint and receiving zero medical support for the better part of 2 decades, so if you’re looking for a happy clappy zen-inspired blog this probably isn’t it. Having said all that I rarely do whinging – life’s too short to be miserable and I live with as much joy and gusto as my knackered body will allow. I have good days and I have bad days just like everyone else and these ups and downs are reflected in my posts.
When I was first diagnosed with both EDS and MCAD I could find little information from a patient’s perspective online, so I started blogging in the hopes that other people with my rare set of diseases wouldn’t feel as lost and adrift as I did in those early days. My blog now staggeringly has over 400 visitors a day from 188 countries – we have vastly differing personalities and cultures and I cannot please all of the people all of the time (I even get on my own Mum’s nerves some days 😉 ). If you don’t like my personality, viewpoint or style of writing feel free to jog on rather than attacking me or leaving an argumentative comment, because it’s unlikely I will change my personality and stress brings me out in hives – we’re all struggling and need lifting up much more than we need bringing down 🙂 .