S.A.D.

I had the TV on in the background for company yesterday, when my ears pricked up as Paul O’Grady interviewed Ella, from the website ‘Deliciously Ella’, who apparently now has a cook book for sale.  I’d come across Ella’s site before as she suffered from POTS, but had to dismiss the majority of her recipes as they weren’t low histamine friendly.  Hoping things might have changed, I checked it out today and read the ‘About’ section which states the following:

“Overnight I took up a whole foods, plant-based diet and gave up all meat, dairy, sugar, gluten, anything processed and all chemicals and additives, which was a pretty drastic change. I literally never ate fruit or vegetables before, my diet instead revolved around Ben and Jerry’s ice cream, Chocolate, peanut butter and jelly eaten with a spoon, pick-n-mix and lots of cereal and pasta…..”

I find this a lot – people who were eating appalling diets, then overnight swap to some radical Paleo or plant based diet then announce to the world that it’s cured them of every ill from acne to seizures, when maybe just eating like a normal human being would have achieved the same thing.

Have you noticed that all the ‘healthy diet’ blogs are written by Westerners all of whom assume we are eating a Standard American Diet (is there a Standard British Diet?!).  It’s just so arrogant – the entire world doesn’t live on pizza and coke or eat Cocoa Pops for breakfast.  My blog has been visited by people from 188 countries, most of whom are interested in a low histamine diet (I assume because they’re having histamine-related symptoms).  I’ve had 12 visitors from the Senegal, where my parents sponsor a child.  She lives on a diet of goat meat and milk, yams and flat bread – not a McDonalds or dairy farm in sight.  And I’m fairly sure my visitors from Greenland, China, Nepal and Iran all eat totally differently to each other and none  of their food could be classed as “convenient” or “processed” – yet they’re obviously still having histamine problems.

Just to get side-tracked for a minute, I don’t even know what a “plant based” diet is.  Is wheat not a plant?  Do you not put a seed in the ground, water it, fertilize it, and out pops a plant whose seeds we eat?  Just like you’d do with a courgette plant or a tomato plant?  Yet wheat is always excluded from plant based diets.

Anyway, I digress.

When my mast cell disease finally exploded in 2013 I was eating a diet which went something like this:
Breakfast: bowl of sliced banana, 4 strawberries, handful of grapes, ¼ canteloupe melon and a handful of cashew nuts, or a smoothie made with fresh fruit, crushed omega seeds and organic probiotic yoghurt.
Lunch: tuna and cucumber, or egg salad, on a wholemeal roll, packet of crisps, glass of organic apple or orange juice with no added sugar.
Dinner:  home-made roasted vegetables with pesto, pasta and parmesan, or fresh salmon fillet with couscous and vegetable casserole.  Pint glass of freshly squeezed mixed fruit and green vegetable juice.
and in between all I drank was bottled mineral water or tea (no sugar).  My one vice for the day was either 3 biscuits or a few squares of chocolate – I’m unable to exercise and if I’d lived on Ben & Jerrys for the past 21 years you’d need a crane to lift me.  I’ve been pesco-vegetarian for over 25 years now, and have eaten as organically as possible since I developed M.E. in 1994.

As it turns out, much of the food I was eating (hard cheese, tomatoes, orange juice, strawberries, fish) are high in histamine, which for someone with a growing mast cell problem wasn’t a good idea, but my diet per se was well balanced, clean and nutritious.

The other thing assumed by these ‘healthy diet’ people is that your home is chock full of chemicals.  Make-up, toiletries, perfumes, deodorants, bleach, sprays, air freshners…..the list goes on.  Only, mine isn’t.  I’ve never done the cleanse, tone and moisturize thing on my face – it gets a lick of Simple unperfumed soap on the days I have to go out but other than that it doesn’t even get washed – the same goes for the rest of me. And because I barely leave the house, the only make-up I ever wear is some concealer to cover up my eye circles,  a slick of mascara and some tinted lip balm on the days I need to go shopping.  I absolutely can’t remember the last time I wore nail polish – there’s really not much call for bright red talons when you live amongst farmers in the middle of nowhere – and due to my false hair I don’t use hair dye, gel or hairspray.  So as it turns out, the only chemicals are in my antiperspirant, which I use because I only bathe every 4 days and without it my armpits smell like a month old cheese board.

My cleaner (who comes once a fortnight) doesn’t use polish, she damp dusts, and washes my bath and sinks with Eco washing-up liquid.  If I do a smelly poo I open the bathroom window rather than squirting air freshner.  I admit to using bleach down the toilet every now and again, because nothing else gets rid of the smelly poop stains, use non-bio liquid to wash my clothes (but no fabric softner) and I do use dishwasher powder to clean my pots.  But all in all I use the least chemicals to keep my home going as is humanly possible.  In my previous house, even the paint on the walls was chemical-free.

As far as drugs go, I became allergic to alcohol in 1994 and it was downhill from then on.  Until I started my daily H1 antihistamine in 2014 I hadn’t been on any drugs for 8 years and hadn’t taken hormones, eg the contraceptive pill, since 1997.

Despite my clean life, lack of drugs, sparse use of chemicals and fresh organic diet rich in fruit and veg my Ehlers-Danlos and mast cell disease still exploded and I still have M.E.  I wasn’t eating a Standard American Diet or living an unhealthy lifestyle and I’m sure many of the 350,000 visitors to my blog from around the globe aren’t either.  Yet we’re still sick.  This would be why I’m so cynical about ‘healthy’ diets curing all ills – it’s because they don’t.

Weekly roundup

This week seems to’ve been a tough cookie.  My mast cells are still having a field day, my butt is covered in itchy hives, I feel nauseous every second of every day, I’m not sleeping well and I’m having reactions to just about everything I put in my mouth.  I’m so angry at this disease I want to meet it in a bar and fight it til it’s lying in a bloody heap on the floor.

I’ve also been very MEish, though if my theory is correct that ME is some kind of mast cell disorder this comes as no surprise.  I have a sore throat (which these days I hardly ever get), feel weak, achy, fluey, foggy and have the energy and stamina of a new born.  Consequently, the pile of chores which has been building up all year just got a whole heap bigger and I’m feeling even more overwhelmed by it all than usual.

I had my annual eye exam yesterday, and need new reading glasses.  Two pairs, plus my eye test, cost £200 ($300).  I went for cheaper glasses last time, and the lenses on both pairs chipped in the first 6 months, so I’m not making that mistake again.  I’m already overdrawn for the whole of May, which hasn’t even started yet, so where the hell I’m supposed to find that sort of cash I have no idea.  Fuck-a-doodle-do.

Someone left a comment on my blog this week that went something like this: I’ve been ill for 4 months, but I’ve healed my gut with probiotics and various herbal supplements and now I’m cured.  You lot need to get off your antihistamines and sort your gut out and you’d all be well.”  Are you fucking serious?!  I know I should have written some diplomatic, educational reply but after 2 decades of listening to shite like this I just can’t muster up any tact.  She got the short end of my ire and I make no apologies.  I’m fed up of trying to be nice and take other people’s feelings into account, when they clearly don’t take mine into account when they write drivel like this.  Jog on.

EDS UK posted this link to a piece by the parent of a child with HEDS.  It’s wonderfully written and explains, without melodrama, what life is like for both her and her daughter.  Life as an adult with both EDS and ME is difficult enough, but to have either disease as a child is……………I can’t even think of the words.

The highlight of my week was Wednesday, which was my best friend’s 40th birthday.  Her partner works away 4 days each week so my friend was on her own, which was lucky for me as I got to spend her special day with her :-) .  We went up the Lakes, had a gorgeous lunch out, then sat for 3 hours by the water in the warm spring sunshine.  The food made me nauseous as all hell, and I felt so ill by the time I got home I thought I was going to pass out (and I’m sure so did my mate, who also has ME), but I still had a brilliant day in fabulous company and I’ll never forget the look on her face when I pulled out a cupcake, glowing with a birthday balloon candle, and my parents and I all sang her happy birthday – she was mortified ;-)

 

10 things not to say to this sick person

There are lots of lists doing the rounds on the Internet about things healthy people should never say to a sick person, and while I can agree with many of the points there are some which, to my mind, are left off.  So I thought I’d do my own top 10 list of things people say to me which makes me want to poke them in the eye:

1. You poor thing.

Fuck off.  Being reminded by you that my life is a pile of crap compared to yours make me hate you.

2. Well, you know what it’s like.

No, I really don’t.

I don’t know what it’s like to be exhausted after a 12 hour working day, have 7 hours sleep and wake up refreshed and ready for another 12 hour working day.

I don’t know what it’s like to have an aching back after I’ve spent 2 hours pressure washing my car.

I don’t know what it’s like to be tired after treking 4 miles up a fell.

I don’t know what it’s like to drive 7 hours to my holiday destination.

That’s because I can’t do any of these things, but you can.  I wish you’d be grateful instead of whinging.

3. I know how you feel, because I get migraines/backpain/tired/insomnia.

No, you really don’t know how I feel.

You get a migraine, pop a pain killer and have a kip while it takes effect.  I get a migraine and lie unmedicated for 3 days wishing I were dead.

You have a bad back, which doesn’t stop you working, or taking part in leisure activities, and doesn’t leave you unable to hoover your carpets or clean out your bath.  You pop a painkiller, or visit an osteopath, and get relief.  I have had daily back pain since the age of 11, which is so severe I use a mobility scooter and spend half my day lying down because it’s too painful to sit upright.  I am unable to take pain killers, and last time I visited an osteopath I ended up bedridden for 3 months after an anaphylactic reaction.

You do too much, get tired, have a sleep, and wake feeling raring to go.  I do too much, get tired, go to sleep, wake up feeling even more tired than I did the night before, then spend the next week in bed trying to claw my energy back.

You have the odd night where you toss and turn, then spend the next night having 2 extra hours lie-in to make up for it.  I haven’t slept a single night through, or had a lie-in, for 21 years.

And if you insist on trying to keep comparing your situation to mine I might have to kick you really hard in the shin.

4. What do you do all day?

I make effigies of insensitive individuals like you and stick pins in them.

5. I wish I looked that good when I was ill.

I am thin because I struggle to eat through daily nausea.

I have nice false hair because I have alopecia.

And I’m only standing upright with the aid of braces under my clothes.

I’m glad all this makes me look like a regular human being.

6. It’s good to see you out.

I am out because I can’t afford to pay someone to walk my dog twice a day.

I am out because I need to go to the cashpoint to get money to pay my cleaner because I can’t clean my house myself.

I am out because I’ve just been to the doctors.

I am out because I’ve just taken my Mum to the doctors.

I am out because I need to collect my special yeast-free bread because I can’t eat the normal foods you take for granted.

I am out because I have to be.  But I feel like shit and will pay for it later.

7. Be careful, you don’t want to do too much.

How have I ever managed to live with my diseases for 21 years without your advice?  No…….wait….. I managed fine.  That’s because I know more about my health than you do.  I’m not stupid and I’m not a child, stop treating me like one.

8. It’s only an hour in the car, you can manage that surely?

So, the day doesn’t involve me having to get dressed.  Walk the dog.  Make and eat breakfast and tidy the pots away.  Drive 7 miles to my parents to drop the dog off.  Meet you.  Travel an hour in the car. Lug my camera gear to our destination.  Spend 4 hours standing taking pictures.  Travel an hour back in the car.  Pick my dog up and drive 7 miles home.  Cook my tea, eat it and clear away the pots?  That sounds like a brilliant day, count me in!

9. Can’t you just push through and do a bit more?

OMG that’s where I’ve been going wrong all these years!  Thanks for the advice, I must be cured.  Or bedridden, anaphylactic and dislocated from pushing myself too much.

10. I don’t know how you cope with it all.

I wasn’t aware I had a choice, the only other option being to slit my wrists in the bath.

I know people say these things because they’re trying to care, or empathise, or relate, but actually they’re just being insensitive and if only they knew how much it doesn’t help, they might stop.

If wishes were fishes

A friend of mine posted a link on my Facebook page to this blog post written by a Lyme disease sufferer.  It’s called ‘How to deal with the fact that everyone else gets to have a life’ and outlines wonderfully the pain of living an ill and isolated life while healthy people just go about their business, leaving you behind.  It’s beautifully written and resonated with me as I spent nearly a decade virtually bedridden, in solitary confinement within the four walls of my bedroom watching as everyone I knew had careers, marriages, babies, holidays, birthday celebrations and I……….well, didn’t.

Each day was a tortuous, mind numbing mix of illness, pain, nausea, sleep deprivation, isolation, lack of stimulation, loneliness and boredom so all consuming at times I thought it would drive me insane.  Whole months went by when I could barely open my eyelids, speak, or hold my head up and I used to crawl to the loo on all fours.  I couldn’t bare strong light, watch TV, chat on the phone, have visitors and even having a hug was like being stung by a thousand needles.  I existed but it wasn’t living.

Back then I pleaded with God to just let me see some improvement.  I wasn’t greedy.  I didn’t ask for a cure, I just wanted to be able to live independently and have just a tiny morsel of quality to my life.  Please Lord let me be able to drive again.  Chat to my friends again.  Do my own shopping.  Let me not wake up every day feeling so ill I didn’t know how I’m going to get through the next hour let alone the whole day.  And I lucked out.  I did improve and, although I do still need help, I now live largely independently and can do all of the things I prayed for.  But, and I know how ungrateful this sounds, it hasn’t been quite what I expected.

I thought I’d be able to cook my dinner without consequences, but I can’t.  Making a meal is painful, exhausting, nausea generating hard work and is no fun whatsoever.  I thought I’d be able to drive my car with the joyful abandonment of old, but I can’t.  It makes me feel dizzy and sets my reflux and palpitations off, plus I’d forgotten that cars need maintenance, and washing, and filling with stupidly expensive fuel all of which is yet another exhausting, painful, stressful chore.  I didn’t realize that by the time I was able to chat to my friends I’d have hardly any left and that the sick ones would be too unwell to chat themselves, and the healthy ones would have no understanding of my life.  And that while my M.E. would improve, the time bomb that was my undiscovered Ehlers-Danlos and Mast Cell Disease would explode and I’d still be living with painful, life threatening illness just of a different variety.

I can do loads of things that I couldn’t do when I was really ill.  But none of them are easy.  None of them are joy filled.  Each small task brings with it new challenges and old consequences.  I still haven’t reached any of the milestones that ‘normal’ people do: I’m still single, I still lack a career, I still haven’t been on holiday and, while I can go out for lunch now on my birthday, I fall into bed afterwards wondering if the nausea, weakness, dizziness, migraine and exhaustion I’ll have for the next two days was worth it.  I am grateful, truly, for the life I can live now but it’s not quite what I thought it would be.

Before all this, when I was well, I’ve got to admit I wasn’t happy either.  I was a member of the rat race, up at 6.30am, spending an hour commuting to work with boring monotony, spending 9 hours a day in a stressful job I loathed, an hour commuting home again, cooking, washing, shopping, cleaning.  Pounding the treadmill at the gym terrified I’d gain 2lbs of spare tyre if I didn’t.  And none of that was joyful.  I wasn’t living any kind of authentic life and I was stressed, tired and miserable.

I’d like to think that, given the opportunity of a healthy life now, I’d do things differently.  But y’know what?  I probably wouldn’t.  I probably wouldn’t have the opportunity to.  I’d still have to take some job I hated just to pay the bills.  A husband wouldn’t just magic himself out of thin air.  I probably still couldn’t afford a holiday and even if I could I wouldn’t want to go alone.  And in between the 40 hour working week, cooking, cleaning, shopping and laundry I’d still have to walk my dog and look after my aging parents.  I’d have no more time to stop and smell the flowers than I do now and I know that, in the back of my mind, I’d live every day with the fear that my health would disappear and I’d get sick again.  I’d try not to, but the terror would always be there…..lurking.

Having such a devastating, chronic illness as M.E. has changed me forever and there’s no going back.  While my life is without doubt better than it was 10 years ago it also has new challenges and new fears.  Living a ‘healthy’ person’s life, while still being sick, is harder work than I could ever have imagined.  But it also holds a level of gratitude and wonder that I could never have experienced when I was well.

 

 

 

Evening out

It was the annual awards dinner for my Camera Club on Wednesday night.  As far as I can remember, I haven’t been out for dinner in the evening since my 40th birthday seven years ago, so I’d spent weeks being both excited and nervous about how I’d cope.

I started to get ready at 5pm, as I wanted to take my time and do things slowly.  I never wear make-up, other than a bit of mascara and the odd slick of lipgloss, so I’d had a trial run a few days before to make sure I didn’t end up itchy, blotchy or with bloodshot eyes – luckily I’m usually OK with skin products and all was fine.  What wasn’t fine is that, for no reason I could fathom, my back had been killing me all day.  I couldn’t use my TENS machine with the outfit I had on, so I just had to slather myself in Ibuleve gel and hope it would settle down and I could at least sit upright.

I left the house at 6.15pm to drive the 7 miles to town to drop my dog off at my parent’s house, before driving 7 miles back in the direction from which I’d come to the venue.  I spend my life in boots, wellies or trainers so wearing heels was tortuous and my Ehlers-Danlos related bunions protested loudly all night ;-) .

My biggest fear was having a reaction to the food, particularly as my mast cells have been so twitchy lately.  I knew the ingredients were OK, as I’d had a dry run on Easter Sunday when my parents took me to the restaurant for lunch and I ordered the same meal I knew I’d be having at the awards dinner with no reaction at all.  But it’s a different kettle of fish when I’m tired, nervous, and excited all of which are mast cell degranulators for me.  However, apart from feeling a bit buzzy all over after I’d eaten, I was fine.  You have no idea how relieved I was.  For anyone interested I had salmon in a butter sauce (strangely, although fish is a no no on low histamine diets, it’s actually one of my safest foods!), potatoes, carrots, broccoli and cauliflower followed by lemon meringue roulade – it was absolutely delish :-) .

The awards ceremony started at around 9pm.  I was expecting to receive the Millennium Trophy as I’d won an annual competition on the set theme of ‘composit images’, but what I wasn’t expecting was to also receive the Blencathra Cup for club projected digital image of the year!  Here I am with my trophies (apologies for blurring my face – I don’t want some nutter downloading my image and using it lord knows where):

By 10pm my energy was flagging so I made my excuses and left.  I was flooded with relief on the drive back to town to collect Bertie that I’d coped so well and, more than that, actually had a nice time :-) .  I was so hyper I barely slept a wink that night though.

As is usual for me, the next day I was a bit tired but good.  But on Friday I was exhausted, achy and nauseous and this morning have woken with a stonking headache – the delayed after effects of the stress, worry and activity.

Although I had a lovely evening, going out for dinner isn’t something I could ever make a habit of.  I worried for weeks beforehand that I’d wake with a migraine, or have a really bad ME day, and not be able to go or that I’d react to my meal and pass out in front of a room full of people and then be too ill to drive home.  Events like these are fun and relaxing for healthy people, but I just find the whole thing stressful.  My saving grace is that, at least for Camera Club, it only happens once a year ;-) .

 

 

 

 

Weekly roundup

Geez this week has gone quickly – I can’t believe it’s Sunday again already!

I’m starting with some good news for a change.  After 9 months of problems my hips finally seem to have settled down.  I am now able to walk without pain and even bending and twisting in the garden every day this week hasn’t bothered them – I am one happy chick :-) .  They are, and probably always will be, stiff and I’m resigned to never again being able to sit cross-legged or sleep in my usual comfortable position, but the nagging, shooting, stinging, aching pain has gone and for that I am truly thankful.

The other good news is that I’m still managing without any H2 anti-histamines for my GERD after I became allergic to the tablets I’ve been taking for the past 2 years.  The first couple of weeks were really tough, with incredibly painful rebound acid production, but this seems to have settled down to a mild/moderate pain which I’m hoping to just be able to live with.  It’s not pleasant, but it beats the anxiety of popping a pill every day and wondering if all hell is going to break loose.  The biggest downside of having reflux is the godawful taste in my mouth, which makes me self-conscious that I have bad breath when I’m talking to people :-/ .

The bad news (you knew there’d be some ;-) ) is that since my drug reaction my mast cells have been super twitchy and I’m having some mild reactions every time I eat.  Mild tachycardia, anxiety, sudden low mood and mild stomach cramps, plus pins & needles in my bum and persistent nausea.  Luckily they only last about 10 minutes (well, apart from the nausea which I sometimes have all day) so I’m coping, but it’s not fun and I hope it all settles down again soon.  I’ve found in the past that once I’ve had an anaphylactic episode my mast cells can become super alert for months, so the reactions aren’t unexpected.  I’m not reacting to any food in particular, so I’m thinking the culprit is the act of digestion itself which produces histamine and being as though my histamine bucket is obviously already full the digestive histamine is causing problems.

On the plus side my butt hive outbreak has cleared up, my sleep isn’t as disrupted and my constantly runny nose has calmed down a bit, so I’m hopeful this latest flare is on the wane (famous last words!).

I have a very exciting week ahead as Wednesday is our Camera Club’s Annual Dinner and presentation night.  I’m receiving a trophy for winning the Millennium Cup Competition, and also found out this week I won Beginner’s Digital Image of the Year with the same picture :-) .  It’s the first time I’ve been out for dinner in the evening for………actually I can’t remember the last time, maybe my 40th birthday seven years ago.  I just hope adrenalin keeps me going and I don’t react  too badly to my meal!  I’ll let you all know how it went.

 

 

New Recipes

As you can see from my last blog post, I don’t have much time to try new recipes so apologies it’s been some months since I added anything new to the site.  I’ve only been able to rustle up a few quick meals for you to try but I hope you like them, or they give you inspiration to make a variation using ingredients you can personally tolerate.

Carrot and Ginger Soup

This is a nice light soup with a delicate hint of warming ginger – see the Soup Section of the Recipe Page for details.

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Leek Tart

A portable lunch dish, or add some new potatoes and a green salad or coleslaw for a light summer supper – details in the Lunches section of the Recipe page.

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Spicey Chickpea Cakes

These are going to become a staple in my Recipe book.  They’re versatile, in as much as you can add whatever spices you like most, and easy to make.  But the best bit is that they can be individually frozen, then cooked from frozen – great when I’m having a really bad day and am simply too unwell to make anything from scratch.  Here they’re shown on a bed of noodles, with stir-fried veg (courgette, yellow peppers and green beans) and a side order of sweet chilli dipping sauce and soured cream.  A super quick and tasty supper dish which, when using frozen cakes, takes 20 minutes from start to finish – details in the Mains section of the Recipe page.

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