Keep taking the pills…

….. or in my case, and many other people’s cases, maybe not.  My friend Elizabeth Milo has had a thread on her Facebook page about drug allergies alongside a photo of the legion of pills she’s tried and had a bad reaction to, and she’s not alone.  I myself have had two dozen drug reactions that have scared me to such an extend that I’m now completely phobic about trying a new tablet, supplement, topical lotion or even herb.  While I’ve thankfully never had full on anaphylaxis, I have had a Grade 3 anaphylactic reaction which lasted for every second of three entire weeks, and took me another six months to get over.  When I react to drugs it isn’t just a case of feeling rough for a couple of hours and then getting back to normal.

When I first began my journey of looking into my reactions I could find virtually nothing online about total drug allergy.  Even within the Mastocytosis population there is a list of drugs you’re supposed to react to and a list which is supposed to be safe.  I couldn’t relate, because I react to everything.  Even things I’ve been told it’s impossible to react to, like B12 supplements, hops in a herbal teabag and all the drugs used to treat anaphylaxis like steroids and antihistamines.

For me, it’s been the worst aspect of having MCAD.  The look of utter disbelief on every doctor’s face I’ve ever encountered and the, sometimes not even veiled, suggestion that it’s impossible to be allergic to all drugs therefore my symptoms are psychosomatic and I probably should be in the therapist’s office rather than the allergic clinic has been a common experience.  Even Doctor Seneviratne, the leading MCAD Consultant in the UK, told me at my appointment that Sodium Chromoglycate is one of the safest drugs around and he was certain I wouldn’t react to it, yet I knew that many of my friends had tried it and it had made them horrendously ill.

Once I finally found the MCAD population online I discovered hundreds of people like me whose bodies have a particular love of reacting badly to drugs and supplements, and it was incredibly validating to know I wasn’t alone or bonkers which is how I’d felt for the previous 15 odd years.

I don’t know why Consultants find it so hard to get their heads around multiple drug allergies.  They accept you can react to just about every food or environmental stimulant known to man, but drugs………..ah, don’t be daft!  Sitting in a doctor’s office, telling them about your last horrendous drug reaction and being offered, you guessed it, yet another drug to try is soul destroying.  I know doctors can’t ‘fix’ me, but it would be nice to simply have my reactions recognized and taken seriously – after all, one day they could kill me.

They also can’t get their heads around the reactions not being dose dependent.  It’s widely known that people with, for example, a peanut allergy don’t need to eat an entire peanut to have anaphylaxis – just the mere trace of peanut oil will do the trick.  But doctors don’t seem to understand that this applies to drug allergies too.  I can have the same reaction to putting a tiny bit of paracetomol on the end of my tongue as I do to swallowing a whole pill, but will doctors accept this?  That would be a big fat no.  The reason they don’t accept it is that they don’t accept I’m having an allergic reaction, and my multiple drug allergies are down on my file as “multiple drug sensitivities“.  I am not sensitive, I am allergic and while I accept my MCAD reactions aren’t caused by an IgE reaction my anaphylaxis is nonetheless real – my allergies are allergies, they’re just triggered differently.

The lack of care for people with multiple drug allergies is scandalous.  If you are known to have anaphylaxis and are offered a new drug to try it should be done in hospital, under medical supervision – you absolutely should not be sent home, alone, to just get on with it.

How do we get the problem with total drug allergy through to Doctors?  I wish I knew.  And are any of our reactions being reported to drug companies or the authorities?  Hell no!  There are no figures being kept of our reactions to all these medications, which is another scandal.

I accept that MCAD is a newly emerging disease, however it’s been recognized for a decade now but it’s still not accepted by the World Health Organization or our Health Department.  When is this going to change?  When is the full extent of MCAD going to be realized and treated?  I’m sick and I’m impatient and my life may just depend on some recognition.

Positive v Negative

Maybe it’s because I’m having a really rough patch, or am hormonal and grumpy, but my Facebook feed is annoying the shit out of me lately.  The Ehlers-Danlos community in particular seems to share nothing but upbeat, triumph-over-adversity posts which make me want to put my foot through my laptop screen.  While it’s great that some sufferers run marathons, get degrees, hold tea parties and sky dive some of us are too sick, and the more severe end of the EDS spectrum is woefully under-represented.  When we are mentioned it’s how, despite wheelchairs and feeding tubes, we’ve still managed to become famous actresses or sportspeople or done something amazing.  My biggest triumph yesterday was actually getting out of bed, even though it didn’t happen until 1 o’clock in the afternoon and I was back in there, ill and exhausted, at 3 o’clock.

Then this morning there was the photo of the bald headed child who wanted a million likes because he “beat cancer”.  No-one beats cancer.  Nothing you do or don’t do has any bearing on whether you live or die.  Caron Keating tried everything to beat cancer, even moving to the other side of the world, but she died anyway.  Ditto Linda McCartney.  And Lisa Lynch.  And my three aunties.  You either catch cancer early, it’s a treatable form of cancer and you have excellent care (not like my local hospital which is so bad it’s been in special measures for 3 years now) or you don’t.  It’s a crapshoot and the rhetoric surrounding it has to stop, because it makes those who aren’t going to survive feel like they’ve somehow failed or not fought quite hard enough.  Not wanted to live quite enough.  Which is bollocks.

I find a lot of the positive posts are written by younger people.  It’s much easier to focus on the happy clappy and zen when you’re not worried about money, don’t have to cook, or do laundry, or battle with the Benefits Agency or Social Services, or buy groceries, or arrange hospital appointments, or get the car serviced, or fix broken stair-lifts, or blow up your own wheelchair tyres………I wonder if their parents or partners are as permanently upbeat, or whether like me they just feel exhausted and overwhelmed by the relentless stress of looking after someone who is sick.

On the other hand, people who do nothing but moan also piss me off.  We’ve had a very long winter this year in the north of England and everyone has understandably got fed up of the biting cold, lashing rain and permanently grey skies.  This week summer has finally arrived and now everyone is moaning that it’s too hot, they can’t sleep, can’t work and they wish it would cool down.  FFS quit whinging (I refer to healthy people here, not sick people who I know are often made worse by hot weather).

One charity which seems to have the balance between positive and negative right is the ME Association, particularly their Facebook page.  I’ve been a member of the MEA for twenty years and it’s had its fair share of ups and downs.  In the early years there was little mention of the severely affected and much criticism from us about this, and rightly so.  In recent years the balance has changed and the spectrum of ME is much more widely represented, no doubt due to the fact that its chairman Neil Riley is more severely affected and writes some excellent editorials in the charity’s magazine.

We don’t all have the same illness experience.  In the north of England healthcare is poor compared to the south, which has a huge bearing on how well your disease is managed.  It would help if conferences, residentials and training events were held in the north (and by north I don’t mean Leeds), which they’re not and for which all the charities should be ashamed, but that’s a story for another day.  We don’t all have wonderful parents or carers looking afer us.  We don’t all have husbands or partners keeping us financially.  And some of us have more than one disease to contend with.  All sides and aspects of the disease spectrum should be represented and there needs to be more of a balance between the positive stories and the negative, between children’s experience and adults (particularly older adults who have had these diseases for decades and who we never hear from), between those receiving excellent health care and those receiving none.  Only then will the full extent of living with these diseases be known.

The Big D

My body never fails to amaze me, and not always in a good way.  I have been constipated my entire life due to my Ehlers-Danlos and the only time I’ve ever had diahorrea has been when I’ve had a tummy bug.  Until the past two months, when we appear to have become intimately acquainted.

Most people with Mast Cell Disease have diahorrea for reasons not fully understood and since becoming allergic to antihistamines I’ve joined their ranks.  It sucks.  You’re proper uncomfortable when you are constipated but at least you don’t have to spend your life wondering where the nearest toilet is or with your insides gurgling like a washing machine on the spin cycle.

Despite being constipated my whole life, I’ve never had a huge amount of wind either up or down.  All this has now changed and I’m farting so much I could launch a hot air balloon.

I could cope with all this, just, if it weren’t for the pain.  I hurt from my throat to my bum.  My entire insides feel inflamed and the pain is sometimes so acute I’m literally doubled over.  It’s been so bad I’ve actually been scared there is something else, something more sinister, going on but you can bet if I had every investigation under the sun they’d find nothing other than inflammation and it’s not worth months of stress and hospital appointments just to confirm something I already know.  According to research, stomach pain is in the top three symptoms for people with Ehlers-Danlos and experienced by up to 85% of sufferers.  Add MCAD to the equation and I’m basically stuffed.

I’m still having random mast cell reactions, sometimes mild, sometimes not so mild, after eating.  Palpitations, wildly fluctuating blood pressure, severe nausea, cramps, severe fatigue, anxiety, euphoria and all simply because I’ve eaten, or in some cases, drunk something.  My reflux is horrendous, ditto with the nausea, I was wide awake and watching telly at 4am last night (again) and my brain feels like its been trampled by a herd of wild elephants.  I do not have my happy head on.

I am drinking enough ginger, peppermint and camomile tea to sink a ship and wearing my TENS machine on my stomach for the pain, which is actually rather weird and uncomfortable and I’m not sure helps in any event.  I dread meal times and the only relief I have is the four hours or so I manage to sleep at night.

Over the years I’ve come to terms with my M.E. and my EDS.  My body does its best to keep the equilibrium and, as long as I stay within my limits, both conditions are manageable.  Not so with MCAD.  It feels like the enemy.  Every single thing which might help, from antihistamines to steroids, mast cell stabilizers to supplements, I react to – the disease thwarting the very things which I know would bring me relief.  No matter what I do it always has the upper hand and there are days when fighting it is just so exhausting I simply want to give up.  Enough with the never ending suffering already.


Weekly Roundup

I’ve had a strange week.  Up one minute down the next.  Not sleeping, still.  Rampant heartburn, which seriously gets me down.  Horrible stomach pains, which feels like my entire insides are on fire.  Diahorrea one minute, bunged up the next.  Weird head symptoms I haven’t had in years and a scary lack of energy.  Then there’s the usual joint pain, back pain, neck pain, head pain, nausea, floaters, brain fog, sore throat etc. etc. ad nauseum.

All out of the blue on Wednesday I started my period, which wasn’t due for another 8 days.  So, after a 6 month hiatus, it looks like the peri-menopause is on the move again, with my last 3 cycles being 25 days, 25 days and 20 days.  And now I’m wondering how much of my recent decline in health, insomnia, lack of energy and mood swings are down to that, how much is down to my mast cell disease after becoming allergic to all my antihistamines, and how much is just a general ME shitty patch.

Truth is, it’s impossible to know.  And irrelevant, when I can’t take anything for any of the symptoms whatever their cause (so, please, no advice on trying hormones, black cohosh or anything else because I can guarantee you, I’m allergic).

According to Google, 80% of healthy women going through peri-menopause will suffer increased “fatigue”, so the fact I’m feeling like I’ve been run over by a bus is probably to be expected.  It still sucks though.

I had my annual Doctor’s visit last week and asked her about my fainting episode during my last period.  She said that, although uncommon, it’s not unheard of during peri-menopause and she wasn’t concerned in the slightest.  As mine happened a few hours before bleeding began, she explained that we have a mix of hormones which trigger the bleed and during menopause the surges of these hormones can be extreme and affect all our other bodily systems.  She didn’t even take a blood test, but did say that if it became intrusive I should go back and see her (though it took me 6 weeks to get this appt, so I’d better not be in any kind of rush!).

On a change of subject, I’m still having problems in the area where I had my molar removed last September.  The tooth next to it has had a sore patch on the gum ever since which irritates the life out of me.  I thought it would eventually settle down, but it’s worse if anything and I don’t know what’s going on.  I see the dentist next month and only hope he can shed some light.

I was given a mouth guard to wear on my bottom teeth to help with my TMJ and I think it does, if only I could tolerate it in my mouth.  It makes my teeth ache like a son of a bitch and is just so uncomfortable I can barely stand to wear it.  I went back and had another, less tight, one made but still no joy.  I think a combination of my delicate EDS gums and my pressure urticaria are going to make using any kind of mouth brace impossible *big sigh*.

I dug deep into my energy bank today and went out for lunch with the Olds, as it’s Father’s Day here in the UK.  My reflux has not thanked me one little bit, and I could now cry with the pain, but my Dad enjoyed it so that was the main thing.

As you can probably tell, I’m feeling proper down in the dumps today and just sick and tired of being sick and tired.  It’s relentless.  The bloody weather isn’t helping things either.  It’s now the middle of June, the longest day, and it’s 15c and raining.  Again.  I can’t believe it’s summer and I still have my central heating on, FFS!  I do so much better in warm, sunny weather (about 21C is optimal) but the long range forecast is for another month of the same shite so it’s not looking hopeful.  I love Britain but our weather, particularly here in the North, is pants.

Having said all that, the wild flowers are out and there is nowhere prettier than the UK for the flowers that line our roads and fill our fields, so I’ll leave you with a picture of an Ox-Eye Daisy I took this morning.  Nature always makes me smile :-)

It’s the single life for me

I’ve lived on my own for 26 years.  Actually that’s not strictly true – I rented the top floor of my last house out for ten years to a long succession of strangers, and we shared the kitchen and bathroom, so technically I lived with people only we didn’t really have anything to do with each other so to all intents and purposes I lived alone.

Living alone has its downsides, which I’ve mentioned in various posts over the last two years, but what I’ve failed to mention is the upsides and they are many and varied.

When I first got ME in 1994 I was in a long term relationship with someone I thought I would eventually marry.  Three years into my illness I dumped him and the relief was enormous.  I was too ill to be in a relationship.  I could barely cope with getting myself through the day, let alone another person.  I no longer had the resources to think about someone other than myself, to expend energy on someone other than myself or to worry about someone else’s needs and feelings.  For romantic relationships to thrive and survive they need work and I was no longer up to the job.

I lost a lot in terms of companionship and practical support but here’s a list of the things I gained:

  • I have insomnia.  When you live alone you can have a bath at 2am.  You can watch TV without disturbing anyone.  You don’t have to creep about in the middle of the night to make a drink or have a snack.  I can go to bed when I like and get up when I like and no-one wakes me getting up for work when I’ve only just dropped off at 5am.
  • I try to have set mealtimes, but often I’m too nauseous to eat when I should or on the flipside am starving hungry at 4pm and decide to have an early dinner.  If I don’t want to cook I don’t have to.  I can have Cornflakes for lunch or eat the same meal two days running.  There’s no-one coming in from work expecting food I don’t have the energy to cook.  I also don’t have a cupboard full of chocolate or Pringles tempting me off my low histamine wagon.
  • I need a quiet, peaceful environment to charge my batteries.  Talking, although nice in small doses, is exhausting and I’m not capable of long daily conversations.  And, selfishly, I don’t want to waste my very precious energy listening to a run down of someone else’s boring day at work.
  • I rarely attend social events.  I wish I could say this was due to energy limitations, and it is, but I wasn’t a particularly sociable person before I got sick and have been known on many occasions to use my illness as an excuse to get out of attending events I know I’m going to hate.  If I were in a relationship I’d feel pressured into keeping my spouse company at dinner parties and work events, using precious energy which could be put to better use doing the things I enjoy.
  • I don’t have to bathe.  It’s knackering and makes me feel ill.  So I keep it to the bare minimum of washing when it’s critical, which is usually once or twice a week.  I can’t imagine being in a relationship and having to do this every day of my life – I’d get nothing else done.
  • Ditto with keeping the house clean.  I’d feel pressure to keep the house nice for my spouse and I simply don’t have the energy.  And before you all start saying “well let your partner do the housework” we all know they don’t even know where the hoover is kept, let alone how to work it, and they never empty the bag ;-)
  • I’d have to keep on top of the laundry, which currently only gets done when I’ve run out of clean undies and sometimes not even then ;-)   And before you all start saying “well let your partner do the laundry” we all know that washing machines are a technical advance too far for men to cope with. They can launch a rocket into space, they can build a tunnel under the sea, but ask them to distinguish between cottons and synthetics, whites and coloureds, and they fall apart.
  • I don’t have to worry about my spouse running off with someone else, someone healthy who can give him all the things I can’t.
  • It’s been nearly 30 years since I had an argument with someone.  I can be as grumpy, tired and hormonal as I like and I’ve no-one to take my bad mood out on.  Conversely, I don’t have to put up with anyone else’s crap.
  • I don’t have to keep a track of my spouse’s family’s birthdays or buy their Christmas gifts.  We all know that men leave it to women to do this stuff and I don’t have the energy or inclination.
  • I can watch what I like on the TV.  This may seem like a trivial thing, but when I’m too ill and exhausted to do anything the telly is my way of escaping and switching off.  I get physically wound up at the thought of having to waste my leisure time sitting through a football game or an episode of Top Gear.
  • I never have to have sex again.  It’s wildly over-rated and I’d genuinely rather be watching the telly, reading a book, walking the dog, taking photographs………in fact, I’d rather be doing just about anything other than having rumpy pumpy.  When I get horny, and I do, a 3 minute masturbation session is all that’s needed to scratch the itch.
  • I’m under no pressure to look pretty, or wear high heels or have my hair cut or shave my armpit hair.  Freeeeeedom!
  • I don’t have to compromise.  On anything.
  • I don’t have to put up with someone else’s annoying habits, like leaving their shaving hair in the sink or not putting their dirty socks in the laundry basket.
  • As I’m typing this I can hear………….absolutely nothing.  There is no-one crashing about in the kitchen (why are men so noisy?!), playing music, ‘making things’ which usually involves hammers or bench saws, or just generally disturbing my peace.  And, being so noise sensitive, I need peace to function.

I’m sure there are many other benefits to living alone when you’re ill which I just take for granted, but you get the gist.  Just the thought of living with another person in the house actually makes my stomach knot as I know I simply wouldn’t be able to cope.  I need peace and quiet.  And I need the freedom to do whatever my body dictates, which changes from day to day and even hour to hour.  My solitude isn’t a choice, it’s been forced on me by my illnesses, but it’s the only way I can get through the day and I cherish it.

New Recipes

Sorry it’s been so long since I’ve added any recipes to the site.  I feel so rotten I can barely think about food at the moment, so cooking hasn’t exactly been top of my list of priorities.  I have, however, added a new Smoothie section to the Recipe page which I’ve been meaning to do for about 18 months now ;-) .  Smoothies are a quick and easy way to consume easily digestible nutrients, particularly if like me you struggle with nausea.

Photo of a smoothie

I have two new dinner recipes for you.  The first is for a vegetable pasta bake, which unfortunately will be unsuitable for anyone on a dairy-free diet, but is really filling and nutritious (apologies for the terrible photo!).

Photo of vegetable pasta bake

The second is for a basic lentil dal, which is really cheap and easy to make if you’re having a particularly bad day and can’t cook much.  It could be tarted up with chickpeas, or vegetables, or any other spices you particularly like but I just stick with the basic version for a dinner in under 30 minutes.  Lovely served with rice, plain poppadums and some mango chutney.  Both recipes in the Main Courses section of the Recipe Page.

Photo of lentil dal

I had a very exciting moment last week.  Finding sweets (ie candies) suitable for a low histamine diet has proved almost impossible, but making your own is so fiddly and time consuming it’s just not worth the effort.  However, while in my local deli I saw the Hawkshead Relish Company do some individual Kendal Mint Cakes and all they contain is sugar and peppermint oil.  OMG they’re delish (albeit rather expensive at £2.95 for a small jar particularly if you have to add postage costs) and just the job for those days when you’re down in the dumps and need a little foodie treat.  I tell myself that peppermint oil is actually used on prescription for stomach cramps, so they’re not even naughty – in fact, they’re positively beneficial for my gut symptoms ;-)

Hawshead kendal mint cake

Weekly roundup

I’m dead chuffed with myself (that’s northern for proud/happy ;-) ).  I moved house 11 years ago, downsizing from a 3 story townhouse to a small country cottage.  Consequently I had much more stuff than I needed and many of my prized possessions have taken up room in my attic ever since.  They were far too good to be given away to charity (some of the items were brand new and never used/worn, often being unsuitable presents) so I decided I’d do a car boot sale, as I’m permanently skint and could do with the cash.  But thinking it and doing it with my dodgy health and lack of energy are two very different things.

In the end, my cleaner/gorgeous young friend Sophie took pity on me and said she’d help. She got all of the boxes down from the loft for me and said she’d bring her little van on the day and load it all up.  She’d then stay with me during the sale and bring me, and any unsold items, back home.  I could have cried at her generosity of spirit.  I think in the 22 years I’ve been ill, she’s only the second person who has ever done something for me purely out of the kindness of their heart and not because I paid them or they were getting something out of it themselves (my parents aside, obviously).

Today was the day.  I’ve been awake since 4am, because my sleep is now rubbish again after coming off the antihistamines and I’ve had horrible stomach pain all week which keeps waking me.  My Dad kindly offered to come and pick Bertie up at 9am, walk him, look after him all day and bring him back home again when I was done, which was a huge weight off my mind :-)

Sophie and I arrived at the venue at 10am and packed up again at 4pm.  It was a lonnnnng day sat on hard little chairs and surrounded by lots of visual stimulation and the noise of chatter, which I find incredibly mentally draining.  Sophie and I also talked and laughed nearly all day, either to each other, the visitors or to the next door stallholders, which was lovely for someone in my position who hardly ever sees anyone but absolutely exhausting.  The weather was also rubbish, and consequently the visitor numbers were down, but I still made £60 ($93) from selling old tat at £1 or 50p per item, so am well pleased!

I’m just delighted that I coped so well with it all, despite my health problems and two nights of barely any sleep, although I’m sure it’ll take me several days to recuperate ;-) .  I only sold about half the items I went with too, so a second car boot later on the year is a distinct possibility!