Self doubt

I spent the whole of yesterday questioning myself.  It started off early morning by reading a comment whereby someone was analysing my personality and how I deal with situations.  I hadn’t asked for the analysis and found it intrusive, but out of respect to the person I thought about the comment, gave it due consideration, questioned my reaction to it, then put it out of my head.  Whilst I know the person has a good heart and is well meaning I find it strange they think it’s their role to put me on the metaphorical therapist’s couch.  I then questioned whether or not to include the incident in this blog post, and decided it isn’t written out of any kind of malice and just happened to be part of a day with self doubt as its theme.

I then did some research online and wound up on a very popular low histamine website.  As I read about the evils of dairy products, grains and sugar and the advice that those who eat them will never be well, I started questioning my own diet.  Even though I’ve cut out dairy and grains before to absolutely no avail, I started wondering whether or not I should have another bash.  And then I thought: but the person who writes this advice doesn’t have Ehlers-Danlos.  And it’s the EDS that’s causing the mast cells to be over-active.  So how would not eating dairy or grains alter my genetic make-up?  And the answer came that it wouldn’t.  Nothing I eat, or don’t eat, will cure my mast cell disease – it’s not curable, any more than my EDS is curable.  I manage it pretty well, considering that just a year ago I was passing out or having anaphylaxis after every meal and I now haven’t had a bad mast cell reaction since……..I think sometime in 2013……..and managing it is all I can do. I still have bad times where I’m quite reactive, but then the looming menopause isn’t helping the situation one iota.   And there’s not much I can do to stop that train from travelling either.

My recent post on Chronic Fatigue and M.E. has been one of my most popular to date.  If I’d known how many people were going to read it I might have spent more than 30 minutes whipping it up in a sleep-deprived stupor ;-)  So then I started to question whether I’d included all the relevant information.  Eeek, I hadn’t mentioned muscle weakness which is a very important M.E. symptom and vital to diagnosis.  Should I go back and put it in?  But by now everyone’s read it so they wouldn’t see it. Did my readers think it was a rubbish post because I’d left it out?  And on and on the questioning went.

Take a breath Jak, take a breath.

I live in the middle of nowhere surrounded by sheep and farmers.  Rush hour where I live consists of 2 tractors and a man on a bike, so my 200,000+ blog visitors from over 40 countries has been a bit of a culture shock. I’m not worldly wise, particularly after being virtually housebound for 20 years, and I probably take too much of what is said online to heart.  But I like to think I have a big heart, so it’s hard not to ;-)

I’m sure other bloggers will agree that putting yourself ‘out there’ can be really quite stressful.  You agonise over everything you say: have I said too much; been too personal; are my facts correct; will I offend anyone (do I care if I offend anyone?). It’s hard to stay true to myself on the days I’m evil with hormones, or grumpy with pain, or foggy with sleep deprivation, or simply overwhelmed by life – I know in these situations I’m sometimes snappy and irritable and really should step away from the keyboard.  But as my life is currently made up of hormones, pain, sleep deprivation and feeling overwhelmed if I did that I probably wouldn’t blog at all ;-)  And despite extensive reading and re-reading I always, always make some kind of typo which is mortifying when it’s emailed out to a couple hundred people.

It’s not easy this blogging malarkey.  It’s hard to steer a straight course through chronic illness when you don’t really know what you’re doing and every man and his dog are telling you their way is the right way, the only way.  When, on a bad day, you reach out for comfort or advice and are picked over or criticized instead.  It’s difficult to take on board so many differing people’s opinions, some of which are truly valuable, and decide which to keep and which to set aside.

Questioning yourself is something we should all do from time to time: it keeps our ego in check, it helps us grow and change, or reminds us we’re actually doing OK as we are.  But there’s a fine line between questioning every single thought or action and as a result becoming paralyzed to do or say anything at all, and allowing yourself to just be who you are, trusting your own judgements and remaining happy in your own skin.  Some days I get the balance right, others not so much.  I’m OK with that :-)

 

 

 

Parallel Universe

I live in two parallel worlds.  There’s the ‘healthy’ world, and the ‘sick’ world.  For my first 23 years of life I lived predominantly in the healthy world.  The next ten were spent exclusively in the sick world.  And now I straddle the two – one leg in each camp (maybe the strain is what’s causing my hip to play up ;-) ).

    I have a Facebook account which contains my:

  • extended family members
  • my close friends
  • my friends-who-aren’t-friends-but-it-would-be-rude-to-defriend friends
  • my haven’t-seen-them-since-I-was-seven friends
  • my never-spoke-a-word-to-me-in-highschool-but-have-strangely-added-me-as-a-friend friends
  • my sick friends
  • my sick friends’ sick friends
  • and the odd straggler (my Tesco delivery man, my local environmental health officer, the chap who built my fireplace and then hit on me).

It’s an eclectic mix and they all want different things from me.  I made a conscious decision when I opened my Facebook account not to discuss health-related issues on there.  It’s not a support group.  It’s not the complaints section of the Department for Work & Pensions.  It’s not the Samaritans.  There are people on there who I don’t want to share my personal business with as they would gossip about it all over town (and that includes some of my relatives!).  It’s just a light-hearted place to have a moan, have a laugh, discuss what I’ve seen on the telly or what I’ve read in the paper.  To share birthdays and events with.  And to read about what other people are up to or moaning about.  For me, it’s my version of going down the pub for a drink and a natter and to see who’s wearing the worst outfit ;-) .

I do post the occasional status update about something health-related, but choose my audience for that particular post wisely, basically excluding anyone healthy from reading it.  But on the whole I choose this Blog to discuss my ‘sick’ world, and Facebook to discuss my ‘healthy’ world.  It’s a tricky balance and some days I forget who’s who and which world I’m supposed to be living in!

When I first became severely ill with ME I lived solely in the sick world.  I was down to one healthy friend as the rest left in droves and I couldn’t even get dressed let alone do any of the things healthy people take for granted, like go out for dinner, or watch a DVD, or have a long girlie chat about nothing in particular.  Over the years I made new friends but they were all, without exception, ill. My whole day was about survival and it was so easy to become immersed in the world of the sick, in the fight, in the struggle.  Many of my friends are still there, consciously oblivious to the healthy world as if it doesn’t exist.

But my diseases are only a part of who I am.  I may have a body that’s falling to bits but my inner-self, the bit that makes me me, is still intact.  I still have interests outside of being ill.  I still love the world around me.  I still have a sense of humour (most of the time!).  I still have dreams of being a published writer.  Of visiting Rome.  Of having a Spa day.  Of finding love.  Of getting really quite drunk.  Knowing all the while that these things will never happen but dreaming of them anyway.

It’s a fine line to walk.  The two worlds co-exist but never mingle.  Healthy people can’t cope with the sick world, because it’s too painful to watch someone else’s struggle and to face their own vulnerabilities.  And it’s too painful for the sick world to see the healthy life they’re missing out on: the holiday tan, the new baby scan, the birthday parties and the Christmas dinner selfies.  There are times now when I’m really ill and can’t even think about the healthy world, and other times I’ve had a lovely day out and for a short while forget I’m sick at all.  There are times my sick friends are relentlessly earnest and serious and depress the hell out of me talking endlessly about nothing but illness, and there are times my healthy friends are relentlessly shallow and self-absorbed and bore the hell out of me sharing their latest drunken adventures.

I feel a bit lost and like I don’t belong anywhere.  There needs to be a third world for the walking wounded.

On a totally different topic, I noticed some of my readers have given the page which lists my symptoms a score of 3/5.  It tickled me no end.  How on earth do you get a list of symptoms wrong?  Do I have too many symptoms?  Too few symptoms?  Or maybe I don’t have the right symptoms?!  Just goes to show you can’t please all of the people all of the time ;-) .

Ear ear

My Dad is hard of hearing and wears a hearing aid in both ears. In the past few years my Mum has also struggled to hear, not that she’d ever admit it. When asked, she insisted she could hear perfectly well thank you very much, despite the fact the telly volume was so high they could hear it in Blackpool. In the end I frog-marched her to the Audiology department at the hospital who fitted her with a hearing aid in her right ear.

She’d had it a matter of weeks when she came home one day and it was gone. 3 months later it turned up under the radiator in the Conservatory at my Uncle’s house – we still have no clue to this day how it got there.

From day one the “damned thing” whistled constantly but instead of getting it fixed she just didn’t wear it. Then she had her heart attack and it wasn’t exactly high on our list of priorities. But now she’s stable, and to save both my sanity and my vocal chords, this week I drag her kicking and screaming back to Audiology to have it looked at.

The receptionist stares at us through the glass barrier with a sigh and a “Yeah?” I’ve seen more cheerful looking Undertakers.

“My hearing aid is buzzing all the time and I wonder if someone could take a look at it please?” Mum places the box on the counter.

“Take a seat” we both wait for Miss Frosty Knickers to smile politely and are sorely disappointed.

“My, wasn’t she a happy chappy!” declares Mum just loud enough for the receptionist, and the entire waiting room, to hear who all try not to stare at us as we sit down.  

Eventually we’re ushered into a room smaller than my under-stairs cupboard and the technician, who doesn’t look old enough to’ve left school and is sporting a beard which looks like it’s stuck on, asks: “What seems to be the problem Mrs H?”

“My hearing aid whistles all the time and it drives me nuts”

Me: “Even the dog can hear it, and gets confused.com when I’m whistling for him to come in one direction and he thinks his Nanna is whistling him to come in the other”. Mum and I catch eyes and start to giggle.

“You first had it fitted a year ago, has it just started whistling?”

“No. I lost it and didn’t dare tell you” she blushes and looks about 5 years old.

“Well, it looks brand new”.

Me: “Yes, that’s because she’s worn it for all of a week. Between her “ehhhh?”s and my Dad’s “yer what?”s I feel like I’m stuck in a Fred Elliot sketch. Ah saaaay, ah feels like ah’s stuck in a Fred Elliot sketch” (said in my best Lancashire accent). Mum and I burst out laughing. The technician is stony faced – he’s clearly not a Coronation Street fan.

“It’s not fitting properly. We’ll take an impression and make one that’s unique to you – that should help. First I’ll pop some cotton wool in your ear canal to stop the mould getting to places it shouldn’t then we’ll take an impression.

“Maybe that’s what happened to your Dad – they forgot to put the cotton wool in and the stuff went right into his head”.

Me: “Not that we’d notice even if it had”.

“You’re not wrong”.

The technician­ proceeds to stick bright blue wax in Mum’s ear, which hangs out the end in a ginormous fat pointy blob.

Me: “You look like a Smurf”. We crack up, tears rolling down our faces, and even get a grin out of the technician.

“This should definitely help and improve your range of sound”.

Me: “Damn, does that mean I can’t swear at her anymore cos she’ll be able to hear every word I say?”

“Do you swear at me?” asks Mum feigning surprise.

Me: “Er, yes, you’re annoying as all hell”.

She turns to the technician: “See, this is what I have to put up with. I demand a new daughter”. The technician looks like a rabbit caught in headlights. Mum tries to look stern but her eyes are twinkling.

Me: “Oh shut up you old trout – you couldn’t find anyone but me who’d put up with you”.

Mum turns to the mortified technician: “Actually she’s right” and grins.

We get up to leave, Mum turning left out of the doorway.

Me: “It’s this way” tugging on her arm.

“Are you sure?” She stands there looking uncertain.

“Yes. Either that or the big red pointy Exit sign is lying”.

“Oh, OK, we’ll go that way then shall we?” and we trundle down the corridor. As we turn the corner I see the technician still stood in the doorway looking stunned. We often seem to have this effect on medical staff – I can’t for the life of me work out why ;-)

New Recipes

Apologies for not doing a food post for a while – life has conspired against me trying out any new recipes and then during my stay-cation I was a lazy mare and did naff all ;-)

In terms of recipes, I’m learning as I go along.  So this week I’ve re-visited some of the recipes I’ve already put online and made a few tweeks.

For anyone who makes the Leek Puffs, instead of making bechamel sauce I’ve found using 2 dessert spoons of ricotta cheese also works really well and is less time consuming (and uses one less pan so less washing up, bonus!).

I’ve also changed the mayonnaise recipe to use 2 egg yolks and 250ml olive oil, instead of 3 egg yolks and 300ml of olive oil as per Gordon Ramsey’s recipe.  Using fewer eggs and oil still give one large jar of mayo, which is enough for me, especially as it only lasts a few days in the fridge and can’t be frozen.

I’ve added a new recipe for tomato-less Salsa, which is never going to be a tomato salsa but is still nice to accompany main dishes or as a dip for tortilla chips or crunchy vegetable sticks.  You can make it stronger or milder by using more or less onion & chilli.  See the Miscellaneous Section of the Recipe page.

I’ve also added a new recipe for basil pesto which adds ooomph to pasta dishes and wraps.  Don’t try tasting it in its raw state – it’s vile and tastes of nothing but garlic!  But once you add it to other dishes it’s fine – you’ll just have to trust me ;-)  Details in the Miscelleneous section of the Recipe page (photo to follow – I ate all the pesto before I remembered to take one!).

Being as though I’ve now concocted a pesto recipe I’m happy(ish) with, I’m able to make a dish I used to do frequently pre-low histamine diet: pesto pasta with roasted veg (though I still miss topping it off with lashings of parmesan cheese and it’s sadly never going to taste anywhere near as nice as it used to).  Recipe now up in the Main Courses section of the Recipe page.

And I’ve used my new salsa recipe to make some Sweet Potato Nachos – also in the Main Course section of the Recipe page.

I’m always really happy to add a new lunch dish to the site, as even now I struggle for portable snacks. These are Quorn Cornish pasties (though if you eat meat you could substitute any cooked mince), which have taken me a couple of weeks to perfect – they’re great and easily packed into a lunch-box when you’re on the go.  See the lunch section of the Recipe page.

And finally a bit of sweet indulgence.  We’ve had a heat wave here in the UK this summer (sadly now over, but it was nice while it lasted!) so I had a bash at making some super quick creamy fruity iced lollies – recipe in the Dessert section of the Recipe page and scroll down.

I must admit that even now when I adapt a recipe I’ve made a hundred times in the past I still expect it to taste like it used to, and of course it never will.  I never thought I’d miss a humble tin of chopped tomatoes quite so much, and although my red pepper and tomato-less sauces are good substitutes they are still just that……substitues, and are never going to taste like the real thing.  I also miss cheese dreadfully and used to use loads of organic Cheddar and vegetarian Parmesan in my meals.  There really is no substitute for these and I’m just having to train my taste-buds to do without.  What I’m trying to say is don’t expect these dishes to taste like you imagine – tomato-less salsa is never going to be salsa, and pesto without parmesan is always going to be lacking in flavour.  However, I hope you can either try these recipes as they stand, or use them as a spring-board to make something similar using ingredients you can tolerate or enjoy.  We all react to different foods and I just make things which I personally like and cope with OK, for example you’ll never see a recipe on here containing celery because it’s the Devil’s own vegetable but if you want to use celery be my guest ;-) .  Then of course, being vegetarian, none of my meals contain meat but again if you’re a carnivore (murderer! *grin*) you could swap any of the Quorn in recipes for fresh mince.  I know you’ll all just use your imagination and common sense – enjoy :-)

 

 

Weekly roundup

I am hormonal, as grumpy as a bear with a thorn up its backside and I think I had my third hot flush in a cafe yesterday – at any rate I was stripped off to my vest, dripping sweat and with a face like a Belisha Beacon while everyone else sat in their anoraks staring at me ;-)  Although they could have been staring at me because I was sat there laughing like a raving lunatic.  I couldn’t help myself.  I am reading one of the funniest books ever and virtually every page makes me chuckle.  It’s 20 years old, but being as though I can’t remember books I read last week I obviously can’t remember reading it first time round so am having another bash.  It’s called ‘Lost for words’ by Deric Longden (you can only buy it 2nd hand in print, but it’s available for download on Kindle from Amazon) and is Deric’s true story about the aftermath of his wife’s death, his dotty mother and finding the new love of his life.

I read Deric’s first book, ‘Diana’s Story’ before I ever got M.E..  I absolutely loved it and had no clue how it would eventually resonate with my own life.  Diana had a crippling, exhausting, painful disease which had no name but everyone, including Deric, now thinks was M.E.  It was made into a brilliant TV drama called ‘Wide Eyed & Legless’ which I still remember watching.  Anyone with a Kindle absolutely must download and read this book, even if they don’t have M.E. – it’s a gem.

Other than that I’ve had a very frustrating week of technical hell.  3 weeks ago my internet stopped working properly.  I thought it was just me until I found an 11 page thread online full of people with exactly the same issues.  After much grumbling, increasing frustration and threats to demand a refund on our monthly subscriptions, BT finally agreed there is a problem but have no clue what’s causing it or how to fix it.  On top of all that my printer died.  Again, there is a known “dreaded ink system failure” issue with certain HP printers which HP don’t even acknowledge or want to fix.  Type HP “ink system failure” into Google and you get about 370,000 results.  Having tried all the solutions my printer is still lying there with its tongue hanging out, obviously terminally ill (although, to give it its due it is about 8 years old).  So I’ve reserved a new one at Argos and am off to collect it this morning, en route to having lunch with one of my best mates K who has taken pity on me and my grumpy arse and is getting me out of the house.

Before I go I’m just letting you know that I have a food post, with several new recipes, waiting in the wings which I promise I’ll publish some time this week.  I’m just tweeking the recipe for Cornish pasties, and am waiting to see how my berry iced lollies, currently setting in the freezer, turn out first.

Clickety-click

In my last post I mentioned I’ve been having a problem with my right hip for 3 or 4 weeks now.  I have no idea what set it off, I joke woke up one morning with shooting pains every time I rotated it and an ominous and very loud clicking noise.  I’ve never had a problem with this hip before and just carried on as normal and hoped it would go away.  No such luck.

It’s now clicking several times a day and is really painful when I turn over in bed.  It’s stiff as a board first thing in a morning and the rest of the day there’s a dull ache deep in the joint which radiates down my front thigh to my knee.  It’s painful to walk or rotate my leg and hurts just sitting upright in bed.  After 3 weeks the Sacro-illiac joint at the bottom of my spine is now also really painful and my left hip is starting to click.  My entire pelvic region is seriously out of whack.

Usually when I sprain or strain a ligament I rest up, slather on some Ibuleve gel, and either buddy tape the joint or use a splint or brace to immobilize the area until it’s starting to heal.  But I’ve never had a large joint injury before (well, apart from my SI joint when my physio ordered 3 weeks of total bed-rest and the wearing of an SI belt, which thankfully did the trick), and have no idea how to manage it.

I haven’t been doing much as I’ve been on stay-cation for a week and in any event I have M.E. and spend most of my day in bed.  The only time I’ll be resting more is when I’m dead.

I was discharged from Physiotherapy last year as they’d done all they could for me, but the Physio was really nice so I thought it was worth a call to ask if she could offer me any advice.  Sod’s Law, she was on holiday.  The receptionist said she’d try to get one of the other physios to ring me, but that they were short staffed and really busy.  Good job I didn’t hold my breath or I’d’ve died of oxygen deprivation.

My next port of call was my GP.  The first appointment I could get was with some doctor I’d never heard of on 28th August (my own GP is also on holiday and then has a back-log so huge I probably won’t get to see her until 2015).  So I thought “sod it” and made an emergency appointment, even though it’s not an emergency.  But when I told my Mum she said the Doctor is really nasty if you see them for an emergency appointment and it’s not an emergency, and as I’m already feeling fragile and a bit tearful, I cancelled it.

I sat and cried for half an hour, then got my oomph back and rang and asked to speak to the Practice Manger.  I told her the story and that I was worried I might actually dislocate the hip if it was left un-managed until I could see a GP in 3 weeks time and asked her what I should do.  She agreed I needed some advice and said she’d get the Duty Doctor to call me this afternoon.  Which, to give him his due, he did.  This was the ensuing conversation:

“So, what’s the problem?”
I explain, saying I’d never had hip problems before, it was getting worse and I was concerned it would dislocate.
“Can you walk?”
“Yes, though it’s painful”
“Can you rotate it?”
“Yes, but it’s painful”
“Well the good news is it’s not dislocated”.  Shit, this guy’s good.
“My concern is that as it’s getting worse it will dislocate”.
“It’s a large, stable joint and it would take considerable force to dislocate it, so I wouldn’t worry.”  Which any EDSer knows is a blatant pile of crap.  I have sub-luxed my shoulder and torn the ligaments just stretching too far across the bed for the TV remote.  I have sub-luxed the most stable joint in the entire spine, and torn the ligaments, just by walking on some uneven ground.  And I sub-lux my jaw in my sleep every night of my life.
“You need to take some painkillers”
“I’m allergic”  This always stops them dead in their tracks, and you can physically hear their brain clogs whiring as they wonder what to suggest next.
“What do you usually do?”  So, he’s asking me for advice.  If I knew what to do you eejit, I wouldn’t be needing to speak to a Doctor.
“RICE (Rest, Ice, Compression, Elevation)”
“Well, I’d definitely try some ice and you need to rest more”  Now why didn’t I think of that?  No…….wait……. I already did and it isn’t bloody working.  And I’m not sure it’s even physically possible to compress a hip-joint, especially not with a 1″ strip of Kinesio tape.  And when I elevate my leg my hip hurts like a son-of-a-bitch.
“If it’s no better I’d be happy to see you at the surgery”  If I could get a shagging appointment we wouldn’t be chatting on the phone mate.
“Super.  Well, thanks for ringing Doctor”.  Bye, you useless fuck-wit.  And if, at any time in the future, my hip actually does dislocate I will sue your arse from here to outer-fucking-space!  Not that I’m bitter about the day’s events in any way.  Noooooooo ;-)

Continuity of Care

When I first developed ME in 1994 it was only just starting to be recognized.  Despite 10 years of horrendous symptoms I was basically just left to get on with it and the only care I received was from my GP, who to give her kudos was sympathetic but was at a total loss to know what to do with someone as ill as me, particularly when I couldn’t tolerate drugs.  I know this experience is shared by many other patients.

I’d hoped things would improve in the last decade, when the Chief Medical Officer in the UK finally announced that “ME was real” and could be “very disabling”, and the Government committed funds to set up ME/CFS clinics all over the country.  My hopes were dashed, however, when the Clinics focussed on people with CFS and the ‘treatment’ offered boiled down to some mindfulness meditation (to help cope with changes in lifestyle) plus advice on pacing and gradually increasing activity (which isn’t relevant if you’re bedridden) and in any event were only open to those with CFS well enough to get to them.  Domiciliary (ie home-care) services for bedridden or housebound patients were supposed to be part of the package, but in reality rarely were.  The medical profession still don’t know how to manage people with severe M.E. and the majority of patients are left with no care whatsoever.

When I received my Ehlers-Danlos diagnosis I knew it was considered a rare disease, so thought I’d have to travel for diagnosis (which I did – 100 miles to see the Consultant) but naively thought that once diagnosed I’d be able to receive continuing care closer to home.  I was wrong.  EDS is a complex illness affecting many bodily systems and areas of medical care: rheumatology for diagnosis and possible ensuing arthritis; gastroenterology for the many and varied GI issues; physiotherapy to keep muscles strong (which, due to my M.E., I couldn’t do no matter how gentle the exercises); regular eye and dental checks; neurologist for migraines, dysautonomia (POTS) and spinal issues; occupational therapy for hand splints and home adaptations; orthotics for other splints and braces; podiatry for feet/ankle issues and insoles; possibly dermatology for skin issues and genetics to determine the type of EDS you have.  And whilst I’ve visited many of these medical departments I’ve done so because I specifically asked my GP for referral and found out who best to see – yet again managing my own care. With the exception of the physio and OT, all the appointments have been soul-destroyingly disappointing, as none of the consultants had any clue about EDS and could offer me no advice.

The thing I’ve found most frustrating is that no-one is co-ordinating my care.  EDS is a progressive disease (despite what you might read online!) particularly as you age and I’m going to need ongoing care for the rest of my life.  I’m currently suffering from a hip issue which is causing me no end of grief, makes walking painful and is affecting my sleep.  I just want to be able to ring someone up to ask what I should be doing – should I be exercising more to stop it being so stiff, resting to let the ligaments heal, splinting it in some way for stability, or having an x-ray or scan to see if there is an actual problem with the ball & socket joint?  Yet there is no-one to ask.  If I go to see my GP there is a 4 week waiting list, then all she’ll do is refer me to rheumatology at the hospital where there is a 4 month waiting list.  By then my hip will either be better or could be beyond repair and I will have spent months in pain, when possibly the only thing I need to do is have bed-rest for a month because I have a ligament tear.

Many other diseases have specialist nurses you can ring for advice.  My Mum has both a heart nurse and a lung nurse.  At my GP’s practice there is a diabetic nurse, a stroke nurse, a Multiple Sclerosis nurse and a Parkinsons Disease nurse (and probably other nurses I don’t know about).  Needless to say there is no EDS nurse :-/  Again, this is a common complaint amongst sufferers.  There is one specialist EDS centre in the whole of the UK and it’s in London………300 miles away from me which really is a national scandal.  If you live in the south east of England you really do receive excellent health-care, while the rest of the country receives virtually none particularly if you live in the north, Scotland or Northern Ireland.

The situation for people with Mast Cell Activation Disorder or Histamine Intolerance is even worse.  It’s exceptionally rare to receive a diagnosis on the NHS, so most people only get diagnosed if they’re lucky enough to be able to afford to see the one private consultant in the whole of the UK who’s clued up on these diseases.  Yet again he’s in London………..300 miles away.  Any kind of ongoing specialist care is not only geographically unfeasible it’s financially impossible, at least for me.  My GP has never heard of the disease and I know 100 times more about it than she does.  Once again I’m self-caring, yet I’m not in a position to do things like prescribe myself an epi-pen and my GP won’t do it unless she’s been told to by a Consultant.

Lucky for me I’m well educated and intelligent enough to research the illnesses from which I suffer, confident enough to ask my GP for referrals and to know my legal rights if she refuses, and lucky enough to have parents who will fund private appointments so that I could at least be diagnosed and help out with buying the aids I need to be able to live independently (eg. they bought my mobility scooter for me, as well as my robotic hoover and push button kettle) – not everyone is as fortunate. There needs to be a specialist nurse or point of contact in every GP’s surgery for those with rare or chronic illnesses, who can monitor and co-ordinate care, make urgent GP or Consultant appointments, and authorize blood tests, x-rays or scans if needed.  Sadly, I can’t see it happening any time soon so I’ll just crack on alone, as I always have.