I ignore medical advice….. a lot

When I was bedridden with M.E., the only way I could get out for medical appointments etc. was to use a wheelchair.  When I first discussed this with my GP she was dead against the idea.  Her exact words were “you don’t want to go down that route because you’ll go off your legs altogether”.  I was too ill to argue at the time but I should have said “in case you hadn’t noticed, I’m already ‘off my legs’ or I wouldn’t sodding need a wheelchair would I?!”.  I totally ignored her, hired a wheelchair on the occasions I needed one, and later when I was slightly stronger progressed to a mobility scooter.  I loved my scooter (still do) as it gave me the freedom to get around without having to spend a week in bed feeling like I was dying because I’d used every ounce of energy my body possessed actually walking somewhere.  Using a wheelchair didn’t hinder my recovery from M.E. in any way and my current use of a mobility scooter for walking long distances doesn’t make my Ehlers-Danlos any worse either.  What it does do is enable me to walk my dog for miles on a beautiful summer’s day, drinking in the scenery, boosting my mental and emotional health and making me glad to be alive. Without my scooter I can walk about 10 steps before my back, hips and knees starting giving me gyp.

After my Ehlers-Danlos diagnosis in 2010 I was given physiotherapy.  I tried for an entire year to do pilates to strengthen my core and all it did was give me muscle pain so severe I felt like my whole body was on fire.  M.E. and exercise simply don’t mix.  My only option to stop my ligaments over-stretching causing sprains, strains and joint sub-luxation was splints and braces.  Again, the medical profession are against them, saying they will weaken muscles and lead to further disability.  I ignored them, because to be honest I don’t really understand the argument.  My joints over extend.  Wearing braces doesn’t stop the joint from moving, it just stops the joint from moving too much.  I still have an almost full range of normal movement, I just can’t hyper-extend.  Wearing my splints and braces enables me to take part in tasks that, otherwise, would either be impossible due to ligament weakness or cause injury.  For me, it’s a no brainer.

Rest is another bone of contention within the medical profession, yet there are times when it’s absolutely crucial.  As far as M.E. is concerned, rest is the no.1 treatment.  It’s as vital to recovery as insulin is to a diabetic.  Anyone who says otherwise needs to be avoided like the plague.  As far as EDS is concerned, in 2013 I spent 3 months in agony with my SI joint, after walking over some uneven ground.  Looking at me with twinkling eyes, my physio said “it pains me to say this Jak, but you need 3 weeks of bed rest to get this joint to settle down” and what’s more, she was dead right.  Rest, regular icing and heat did wonders, then I started using an SI belt to stop my joint wobbling around so much whenever I walked anywhere outdoors and my SI joint is the best it’s been in years.

When I was diagnosed with both HIT and MCAD in 2013 I had to go on H2 anti-histamines, as my stomach was over-producing acid which was giving me horrendous GERD and causing ulcers in my oesophagus.  I read all sorts of warnings online about the use of stomach acid reducing medication but guess what?  I just ignored it ;-)  My stomach over produces acid.  Taking Cimetidine reduces my stomach acid to more normal levels.  I still have plenty of acid with which to digest my food but I’m no longer in purgatory with burned skin and a chronic cough from inhaling excess acid into my lungs.  Another no brainer.

Medical professionals don’t always know best, particularly about diseases like M.E. and EDS which don’t fit the ‘normal’ patterns of what we know about disease and disability.  Just about every other disease responds well to exercise…….apart from M.E., where exercise is the very root of the problem.  In every other disease being flexible and not stiff is considered a good thing, but in EDS the more flexible you are the more problems you’re likely to encounter.  You know your own body.  You know what works and doesn’t work for you.  And you are the one who has to live your life, not the physio or your GP.  Follow your instincts.

On a different topic, a link to a post I wrote about my hands has obviously been shared on social media somewhere and I’ve had a huge influx of visitors to my blog as a result.  So I just wanted to say a big “helloooo” to my hand visitors – I hope you’re finding the blog helpful :-)

Greater Trochanteric pain

Last Tuesday I had a physiotherapy appointment regarding my hip pain.  My physio doesn’t have a huge amount of experience with Ehlers-Danlos Syndrome (no-one in the entire north of England does) but she is a specialist senior Rheumatology physio and does have several other EDS patients.  I saw her on and off for a year in 2013 and, although we didn’t make huge progress as my ME makes any kind of exercise almost impossible, she was hugely sympathetic and understanding of my situation, listened to me and didn’t force me to do anything which would make my ME worse.  If only health professionals knew that this kind of attitude helps as much as actually treating the problem!

The pain started about 2 months ago with an ache deep in my right socket joint where my leg bone meets my hip and a distinct sub-luxing clicking sound if I moved my legs apart.  Eight weeks on it’s a constant deep pain in the joint, hot burning muscular pain down to my knee, stinging shooting nerve pain down to my knee (both of which keep me awake at night), pain in my SI joint, pain along the top of my pelvic bone and, just so’s my left hip joint doesn’t feel left out, it’s now started to hurt too.  Super!

My GP guessed, correctly, that it was Greater Trochanteric pain syndrome (formerly known as GT bursitis) and my physio agrees.  Which, in some ways is great, as it means there’s no actual problem with the hip joint, but GT pain is apparently a bitch to treat and can be very troublesome.  Tell me something I don’t know!

I can’t have many of the treatments which a ‘normal’ person would for this condition.  I can’t risk steroid injections, as I’ve reacted to oral steroids in the past due to my Mast Cell Disease.  Ditto with ultrasound treatment (weird, I know!) and acupuncture.  So it’s down to the basics:

  • Ice, 3 times a day (as I type this sitting up in my bed I’m having the equivalent of brain freeze in my butt!)
  • Ibuleve (ibuprofen) gel every 4 hours (I can tolerate topical pain relief, just not oral) to reduce the inflammation
  • Rest (for a whole month – somebody shoot me ;-) )
  • Crutches.   I’ve had to have gutter crutches which take your weight through your whole forearm, as regular crutches would totally bugger up my already weak and highlyhypermobile wrists and shoulders.

    Photo of gutter crutches

    Ignore my jumper – it’s long and usually down over the TENS machine clipped to my wasit and SI belts but I’ve hitched it up to show you the full ensemble!

  • Bracing – I’ve bought another second-hand SI belt off Ebay and am using that slung slightly lower down around my hips to stop the joint sub-luxing.
  • My trusty TENS machine, which won’t help the joint heal but does take the edge off the pain.

I have to go back in a month with my progress.  It’s been nearly a week now of not doing my usual activities and I have to say……………the pain is worse than ever :-(

The day after my physio appointment my Dad had his hernia operation.  He’s doing fantastically well and you would never know he’s had surgery, other than the fact he can’t walk far or drive for the next 2 weeks.

Due to all of the above I didn’t make the EDS conference in Birmingham.  I can barely sit, stand or lie due to my hip and pelvic pain so there’s no way I’d be able to sit for nearly 3 hours in a cramped train seat, then all day in hard conference chairs (n fact, the mere thought makes me wince), plus I didn’t feel I could leave my dog with my parents as neither of them are able to take him out (my Dad’s surgery wasn’t on the cards when I booked my conference tickets).  I’m gutted I didn’t get to meet any of the people I’d planned to but at least I won’t miss out on the lectures as EDS UK are putting them up in the member’s section of their website soon.  I’ll let you know if I discover anything new once I’ve seen them, particularly the talk from Dr Seneviratne on Mast Cell Disease in Ehlers-Danlos.

For anyone else experiencing hip pain, there are some really good slides from the Ehlers-Danlos National Foundation’s 2013 conference online here.

On a totally different topic, a group of doctors at Beth Israel Deaconess Medical Center would like to understand the bowel and stomach issues that might affect patients with inherited connective tissue disorders.  They have put together a survey which will take about 25 minutes to complete (it’s very easy) and I would encourage anyone with a confirmed diagnosis of Ehlers-Danlos Syndrome or Benign Joint Hypermobility Syndrome to take part:



Mast Cell Flares

I’m currently having a mast cell flare.  Not a mast cell reaction, which is an acute anaphylactoid event, but a gradual increase in my symptoms which, for me, results in hives (your end result may be totally different).

Looking back, this flare began about 2 months ago with insomnia.  I never sleep particularly well, but when I flare I start waking several times a night and really struggle to get back off.  Consequently my fatigue is ratched up a notch or ten.  Insomnia was my very first ME symptom (I’d always been a superb sleeper until then) and now I recognise is a sign that my histamine levels have increased.

Then my bowels get sluggish.  Instead of pooping every day after breakfast I’m down to every other day (sometimes every third day) and at random times, even the middle of the night.  Of course, having my poop backing up in my intestines leads to colicky pain, bloating and ultimately more heartburn.  Yay.

At the opposite end of the spectrum my urine output triples.  When I’m in a good patch I never have to get up in the night to pee, but during a flare I’m up and down like the proverbial bride’s nightie.

I’m either totally nauseous and unable to eat a thing, or ravenous and chomp through food like the Hungry Caterpillar.  I prefer the chomping, and am currently eating myself out of house and home.  In the past couple of months I’ve gained 4lbs and my jeans are getting uncomfortably tight.  But that’s OK.  I know for sure at some stage in the future I’ll be sick to my stomach and lose it again.

Next comes the sneezing and the annoyingly itchy prickly nose.  During a flare the first thing I do when I wake up is sneeze and I spend all day rubbing my nose until I look like Rudolph’s older-yet-better-looking-it-has-to-be-said sister ;-)

My skin also gets more prickly and itchy and tends to welt easier.  If I kiss my dog I spend the next hour feeling like my entire face is being tickled with feathers.  Trying not to kiss my dog is futile, being as though he’s the cutest dog on the planet.

And finally, 2 months on, my butt hives have appeared.  Itchy little fuckers.

I had no idea why I was flaring until I started writing this blog post and had a Eureka moment – my hip started hurting 2 months ago!  I have pain, severe inflammation and of course my body is producing an immune response to the situation, so I’m now thinking this probably has a lot to do with why my mast cells are currently behaving badly.

I don’t do anything hugely different to cope with a flare, although I make sure I’m really strict with my diet.  I use prescription steroid cream on my hives (the only thing that works) and try to keep on top of washing my bedding to get rid of Bertie’s dander (don’t always succeed!).  I also do try to rest more, as histamine for me is a potent simulator and I often feel I have waaaay more energy than I actually do.  So I tend to do more, which makes me more exhausted, and stimulates more histamine, which ramps me up, so I do more………..and a vicious cycle develops.  Got to admit, though, I find it incredibly hard to rest when I feel so energized and it still amazes me that I can be so tired, yet so wired, all at the same time!

I finally saw my physio this week (more on that in the next blog post) and am hoping in the next month or two I can get my hip bursitis to calm down, which should also calm my mast cells down.  Famous last words ;-) .



Thriving not surviving

There was a question posed on the ME Association’s Facebook page this week from someone asking how you get through the days with chronic illness and remain sane.  Good question!  There is no one size fits all answer, however, because we’re all different and motivated and made joyful by different things.  Just like any situation in life you have to find a solution that’s right for you and it may not be the solution that someone else would choose.

Six years into having ME I realized I was going to be ill for the rest of my life (I had no idea at the time I also had Ehlers-Danlos and mast cell disease).  I had a lightbulb moment and it was this: I had to stop fighting my situation.  The disease and I were now one entity and we had to learn to live together.  I finally relaxed into the illness and adapted my life around it.  I started to live again, not just exist.  I bought a computer, got in touch with other sufferers and took on some voluntary work from my bed.

Now, fourteen years later, I am happier than I’ve ever been despite a very challenging physical situation and not a huge amount of support. Here are some of my personal strategies on how to not only survive, but thrive, with chronic illness:

  • I live in the moment.  Yesterday is done.  None of us know if we’ll see a tomorrow.  The only time that exists is now.
  • I do what works for me even if it flies in the face of what works for other people.  For example, I sodding well hate meditating.  It’s BORING.  Yet when I study a flower in order to photograph it, the light, the form, the colour……….I can get lost for hours.  This is where I find my peace, my joy and my spirit, not sitting painfully cross-legged, with my back killing me, breathing through a blocked-up nose trying to not think about thinking ;-) .
  • If I’m feeling low, I ask myself the question “if a doctor today tells you you’re terminally ill and have 2 months to live, how would you feel?”.  It makes me look at the world in a totally different way.  I cherish the sunset.  I cuddle my dog more.  I truly appreciate my warm, comfy bed or a soak in a hot bath.  It’s always the little things, not the big, which give us the most pleasure and which we totally take for granted.
  • I have hobbies.  Things I feel passionate about and which bring me a sense of joy and achievement.  When I was bedridden this was designing a newsletter for an ME charity and crocheting.  As I’ve improved I’ve enjoyed gardening and photography.
  • I won’t tolerate bullshit.  I have dumped my boyfriend, close friends, family members and anyone else who either doesn’t support me or causes me grief.  It’s been totally liberating.  I won’t put up with drama or constant negativity, as it robs me of very precious energy.
  • I don’t care if someone likes me, or doesn’t like me, or is totally indifferent to me.  I really don’t give a toss whether anyone approves or disapproves. I live MY life.
  • I learned to say no.  It was life changing.  I haven’t attended a single community event in my small village since I moved here 10 years ago.  The neighbours mostly think I’m weird and anti-social but I couldn’t care less.  I hate group events like Sausage Sizzles or parties and I’m not using my extremely limited energy on things I can’t stand.  This is where having a chronic illness is a total bonus – I can just say I’m not well enough to go and people can’t argue with it ;-)
  • I have always had rescue animals during my illness.  Cats when I was very poorly and a dog now I’m well enough to cope with one.  They give me a reason to get out of bed in the mornings and their unconditional love and acceptance brings me joy every day. I have never smiled and laughed as much at anything as I have my dog.
  • I’ve physically adapted my life around my illnesses.  I struggle to read, so I bought an ipod and listen to audiobooks instead.  I can’t walk far, but love being outdoors, so I bought a 3rd hand mobility scooter.  I struggled to lift the kettle, so I bought a kettle that doesn’t need lifting.  I’m not a martyr and find the easiest way to do everything.
  • I am accepting.  I don’t fight life.  If a situation can’t be changed (like my health) or my life is affected by things beyond my control (like my best friend walking away) then I accept that and move on.  There is no other choice.  Let it all go.
  • I have a purpose for every day.  Even if the purpose is just resting so that I won’t get too sick.
  • I am happy in my skin.  My looks are fading, I’m losing my teeth and I’m going grey and I absolutely don’t care.  I am unique and I am special and so are you.

The biggest lesson I’ve learned is to live a life that works for me.  I love being amongst nature.  I love animals and watching wildlife.  I don’t care about my appearance and will probably end up like an old bag lady ;-)  Stuff isn’t important to me.  I do the housework when it’s critical (this from a person who used to be a complete control freak and perfectionist!!).  I quite like solitude and I’m really not a big people person.

It’s more difficult than you think to live your own unique life when we live in a society which constantly tells us what we should own, buy, be.  A society which celebrates youth, beauty and health and makes anyone less than physically perfect feel like they’re worthless.  I watch the Real Housewives who have everything we’re told makes us happy: botox enhanced youth, magnificent houses, pretty children, obscenely wealthy husbands and enviably flat abs.  But not a single one of them is happy.  They are not fulfilled.  They are not joyful.  They do not have inner peace.  And if it were a choice between their lives and mine I’d choose mine every time, illness or no illness.

“Strive to be happy”


Weekly roundup

My little autumnal blip seems to be stabilizing, though I’m not anywhere near as good as I was in the nice weather.  The good news is that my brain fog has lifted (I’m always foggy headed, but at least now I don’t feel like I’m drugged) and I don’t feel as fluey and achy.  My energy levels are also better, if not brilliant.  The bad news is I’ve had a run of stonking headaches/migraines, my pain levels are still high (my hip is getting much worse) and I’m still not sleeping.

Despite everything I’ve had another busy week, but at least it was self-inflicted (for the most part).  Monday I had my long-awaited appointment with the Oral Surgeon regarding my sub-luxing jaw and TMJ pain.  He’s suggested trying a mouth guard on my bottom teeth at night, which I know won’t do a shite of good.  However, I have to try it if only to tell him it’s not done a shite of good.  I go back to see him in February for a follow-up.  I know the answer is actually some kind of mouth guard, but it’s going to have to be custom made and somehow fused top and bottom to stop my jaw slipping into my earhole as I sleep!  He was actually a really nice Consultant though, and was mortified I hadn’t been under the care of a Rheumatologist since my Ehlers-Danlos was diagnosed back in 2010!  He’s going to write to my GP and strongly suggest I see someone locally.  The other thing he was horrified to discover is that I don’t have an epi-pen, despite my almost total drug allergies and history of reactions after food.  He suggested I tackle my GP about this, though I feel it should have come from Dr Seneviratne when he wrote to my GP last year.

Tuesday evening I attended a 2 hour beginners workshop run by my local camera club, and Wednesday evening was the weekly camera club meeting.  Oh boy do I struggle to do things in the evening, let alone two evenings on the trot, but I was still glad I made it even though four days on I’m still suffering the consequences.

Yesterday (Saturday) I also attended a 2 hour workshop on how to mount photographic prints.  This coming Wednesday I enter my first camera club print competition and there are strict rules on how entries can be submitted.  There are 6 competitions in all over the year and the person scoring highest in their class gets promoted to the next class up.  Here are my two entries – wish me luck!

Today my friend K is coming over and we’re going out for lunch.  She’s been chocka with cold for weeks now and it feels like forever since we’ve had a natter, so I’m looking forward to that :-)  I then really need to rest this week (well, apart from my Dad’s hernia operation on Tuesday and my physio appt on Wednesday for my hip,) so that I have enough energy to get to the EDS conference next weekend.  Who am I kidding?  My Mum can’t do a thing, and following surgery I’m fairly sure my Dad will also be laid up, so I will be on Daughter duty the entire time.  Not that I mind, because Bertie has practically lived at their house this week while I’ve been gallivanting, as well as staying there overnight if I ever do make it to Birmingham.  He loves being at his Nanna and Granda’s because they eat meat and give him all sorts of treats off their dinner plate which he never gets off his vegetarian Mum.  It’s a wonder he ever wants to come home ;-) .


Frankenfoods – Part 3

Disclaimer:  As I’ve said many times throughout my blog I’m just a patient not any kind of expert, particularly not of food or nutrition, so thoughts stated in this post are just my own observations. 

When I started my blog I put a few recipes up and just expected it to be read by half a dozen British people with histamine problems.  I had no idea the number of visitors I would have from other countries, particularly America, which has made me conscious of the differences in foods between the UK and other countries.

There have been a couple of excellent documentaries on tv here in the past couple of months.  One of which was Horizon which looked at the environmental cost of meat production and consumption.  It was difficult for me as a vegetarian to watch, and I kind’ve sneaked a peak from behind my cushion at all the dead bloody carcasses hanging up, but quite an eye opener in terms of how food is produced particularly in the States.

I’ve read about Paleo diets in the course of my health investigations and they all mention eating “grass fed beef”.  It’s always had me a bit stumped – what on earth else would you be feeding cows other than grass?!  I had no idea that on large scale American beef farms there is not a blade of grass in sight and that cows are fed on a dry diet made from corn.  In contrast, Britain is a tiny country and simply doesn’t have room for farming on this scale.  All our cows are put out to pasture for most of the year, although obviously in deep winter there is no grass production and they are fed on sileage (a grass product grown in summer and stored for feed in winter) and other dried cereal food mixes.

One argument against vegetarianism is that there isn’t enough land for us all to grow plant foods, but it’s such a load of old tosh.  Cattle and sheep take up vast areas of land for grazing, and on top of that we have to put a similar amount of land aside to grow cereal crops and grass for sileage to feed cattle in winter (and in America all year round).  Without sheep and cattle we’d have vast areas of agricultural land.   In recent years there has been a small push here in the UK to try and get people to have one meat-free day per week to try and reduce our beef consumption in particular, though I’m sad to say it hasn’t really worked.  In terms of milk and milk by-products like cheese IMHO we need to focus on goats, sheep or hardier  cattle breeds which can survive on non-agricultural land, eg. heathland and hills (or in America more desert-like conditions as goats do in Africa).

Our current large scale cattle farming methods means we have a huge problem with animal by-products (or poop to you and me).  I live next door to a dairy farm and trust me when I say they produce humongous amounts of poo.  It never crosses the average consumer’s mind where all this stuff goes to and I’m sure they’d be horrified to know that much of it ends up in our fresh water supply, along with the chemical fertilizers used to grow the grass for the cows in the first place!

I had no idea that cows were routinely given antibiotics in America which are actually banned here in Europe.  It makes me glad that, for many years, I’ve bought organic dairy products wherever possible, because the over-use of drugs in dairy herds is widespread on both sides of the pond, and although some drugs are still allowed in organic farming they’re not anywhere near on the scale of those used in non-organic.  It now makes perfect sense to me why health-conscious Americans are so careful about what kind of beef and other meats they consume.

The other thing I’ve never understood when reading about American food is “high fructose corn syrup”.  I had no clue what this was as it simply doesn’t feature on English food labels.  I discovered that in Europe HFCS is called Fructose-Glucose Syrup and, although is still doesn’t seem to feature anywhere near as highly in Britain as America, you will often see it in biscuits and cakes.

I also didn’t understand the whole “corn” debate in America as the only corn we consume here is the odd tin of Sweetcorn, until I realised that “corn” is actually what we call “maize” and is fairly widely grown (though not as widely as wheat).  We don’t think of maize as being unhealthy in any way however and the little girl my parents sponsor in Africa lives on the stuff (along with yams and goat’s meat, milk and by-products) and she’s as fit as a fiddle.  Maize has been around since pre-historic times according to Wikipedia, (which blows the paleo non-grain eating ancestor theory totally out of the window) so I guess it all boils down to what you do to it post-harvest, ie. the mixing of it with sugars to form HFCS!

However, in Britain and Europe we don’t grow genetically modified maize (corn) or any other GM crop, and I’d certainly feel differently about eating maize if we did.  America, on the other hand, is the largest GM growing country in the world.  The problem with growing GM crops is that it negates choice.  Once GM crops are grown they naturally cross-pollinate with non-GM crops resulting in contamination.  In Britain, no-one would be allowed to class their crops as “organic” if they were GM contaminated and none of us would have the choice of eating non-GM crops if we so desired.  With GM, it really is a case of once the Genie is out of the bottle there is no way of putting it back in.  Not everyone agrees, however, as this recent article in the Observer newspaper points out.

We have an ever increasing population and ever dwindling land and resources with which to feed us all.  The problem is vast and complex.  On the one hand people in certain parts of the world are starving and on the other in some western countries three quarters of the population are obese.

We in the developed world throw away obscene amounts of food, and food packaging, every day.  One thing making everything from scratch has taught me is to be less wasteful – you don’t spend hours slaving away in the kitchen to then chuck the food in the bin, and I scrape every last drop of the sauces I make out of the jar!  I personally would like to see the issue of food waste tackled rather than growing GM crops or feeding cows in ways that are so removed from their natural habit it’s grotesque.

There are solutions to our food production and consumption problems, but they’re incredibly difficult to implement.  It’s easier to just grow more food (let’s ignore the fact that half of everything we produce goes to landfill!) than to change people’s food buying and cooking habits (which for a start would mean every company which produces TV dinners would go out of business). One thing is for sure – the current state of affairs isn’t working and simply can’t carry on.





New Recipe

It’s Autumn here in England and I’m in need of warming comfort food.  Trouble is I feel like crap, so I’m barely up to cooking anything which takes longer than 15 minutes.  Fortuitous, then, that my treacle flapjack takes just that :-)  It’s lovely with a warm mug of milk and has become my afternoon treat, alongside reading a few pages of a good book (thumping headache and brain fog permitting).  Recipe in the Dessert section and scroll down.

I finally got around to doing a photo of my basil pesto, so at least you know what it’s supposed to look like.  I’m having this tossed with pasta and roasted veg for dinner tonight, mmmm :-)

And while I’m on a food theme, for anyone who is both low histamine and dairy-free finding a cheese substitute is tough as most vegan cheese products are made of soya.  However, my friend told me about Violife which is a soya-free, dairy-free, gluten-free cheese made with ingredients suitable for a low histamine diet (if you ignore the citric acid, and let’s face it a small amount of citric acid isn’t going to kill you).  If anyone tries it I’d be interested to know how it tastes.

I’ve also updated the few recipes on my site which didn’t have American conversions.  It’s really difficult to work out precise gram to cup measurements for ingredients, therefore some are approximations, but at least my visitors from the States can get a feel for the amounts involved and use a bit of trial and error to get the recipes to (hopefully) work.  Happy cooking!