Day 5

First Friday night without booze for ages… Woke up naturally before my alarm today (unheard of!), feeling well-rested after 9 hours sleep, and ready to do some painting :) Amazing, this is a GOOD THING :)

Day 3

Time for an update…

Day 1 – trip to the supermarket. Considering I walked out with only 2 bags of shopping, this took an inordinate amount of time. In her book ‘What HIT Me?’, Genny Masterman describes this experience as ‘daunting and depressing’… pretty much spot on. The cycle of “Oh, I know what I can make for dinner!” with the discovery of “Nope, that’s got vinegar/yeast/wheat/tomato/arsenic in it.”  Left me feeling pretty panicky to be honest… What on earth is left?

Well it turns out there is some stuff left. Rustled up a risotto with arborio rice, yeast-free stock, butternut squash, parsley and feta… Not bad at all, and my German guinea pig was sufficiently impressed to have 2nds. (Not, I might add, an actual literal guinea pig.)

Day 2 – Having downloaded a low-histamine recipe book onto my Kindle, I decided to make shepherd’s pie… blended mash of butternut squash and sweet potato, a bunch of herbs chucked in, and a whole bunch of feta cheese sprinkled on top… Happy mouth.

I have also discovered I don’t hate green tea any more. Don’t leave the bag in too long, and get ones which are infused with something else (the two I’ve tried are jasmine and mango) and a bit of honey or stevia, and it’s actually really nice. Not as bitter as I remember it being in Asia.

Also – hoorah for fruit! (Except strawberries and pineapple, those histaminey little minxes.) Fruit is the way forward.

No booze for 3 days is no big deal, that happens anyway… But I am quite proud of myself for actually being in a pub on day 1 and sticking to diet Coke. Long may that continue!

So enough about food – I’m not going to mention specific food again because otherwise this will just end up being a verbal version of people’s dinner pics on Facebook.

What of symptoms?

Well I’ve also started on my antihistamines and Vitamin D tablets. So far, not much change in symptoms, but it’s very early days and there may not be an improvement for weeks… Yesterday was definitely a sleepy day. Today, less so… I’m keeping on top of work whilst managing to fit in a lunchtime snooze, and that’s keeping my stress levels down – also very important, as stress releases histamine.

No word from my immunologist on appointments with cardio chappy. I have become more aware of my heart rate since Monday, and upon reaching the top of the stairs at work yesterday my heart was pounding. I took my pulse and it was 120 bpm. Literally from just climbing the stairs. Okay, maybe I’m just hideously unfit? But considering I do at least 30 minutes of brisk walking every day I can’t believe I’m *so* unfit that my heart rate would skyrocket to 120 just from climbing the stairs… but we’ll see. I do remember, a few months ago when I was at the gym, I was on the cross-trainer, and the machine started beeping at me with a warning, saying my heart rate was approaching 200bpm. I felt totally normal for someone who had been on a cross-trainer for 15 minutes, so I presumed it was a malfunction in the heart rate monitor. Now… not so sure!!  Anyway, no point in worrying about that until I know more, so for now I’m just focusing on the diet, remembering to keep a food/symptom diary, and trying to get on with my life…

 

21 years later

Today, after 21 years of chronic fatigue, misdiagnoses, what must be hundreds of blood tests, CBT, psychiatry, accusations of malingering, ‘diagnoses’ of psychosomatic symptoms, bullying, accusations of laziness, years of self-flagellation and self-doubt, I was finally given some meaningful information which would explain pretty much all of it.

After an ongoing rash around my mouth worsened over Christmas/New Year, I took myself to my new London-based GP (quiet, unassuming, about 12 years old) to ask for a referral to an immunologist. The GP ummed and said he didn’t feel that “at this stage” it was appropriate to refer me to a specialist. He didn’t have any alternative suggestions, it was simply a ‘compu’ahhh sez no’ situation. I looked at him for a few seconds and told him that I’d been dealing with these symptoms for over twenty years, and that if I walked out of that room without any action being taken, I’d be extremely unhappy.  Stared at him a bit longer and he said “Okay, well let’s do a referral then.”  #me1GP0  Just to make sure he didn’t have bad dreams I then reassured him that I had private health insurance. (Maybe I should have led with that… Nah.)

So that happened. Went to see the immunologist. I’ll skip over the consultation details for now, except to say that he told me what his suspicions were and encouraged me to go off and Google it all when I got home. He wrote it all down for me so I didn’t have to remember it… He then sent me off to donate about half a pint of blood for testing, and then I had to come back in a month for the results.

Today, that month was up, and I went back to see him. Results were in… Suspicions confirmed, plus a couple of little surprises just for [figurative] shits and giggles.  I have something called Histamine Intolerance (‘HIT’) due to low levels of diamine oxydase (DAO).  Never heard of it? Neither had I…  Thought histamines were something to do with hayfever? Well sort of… It’s the chemical your body produces when you have an allergic reaction to something. In fact it’s the histamine which makes your eyes go itchy, makes your nose run and makes you sneeze when you have hayfever. But did you know that histamine is present in food? Diamine oxydase is the enzyme which our body uses to break down and eliminate histamine, so if you don’t have enough DAO in your body, you can’t break down the histamines in food, and end up having similar symptoms to an allergic reaction. This can be mild or severe, depending on your body’s make up. Want to know the details?  Go and check it out from a source which knows what it’s going on about.

I also have a severe Vitamin D deficiency (the consultant’s actual words were that my Vitamin D levels are “hopelessly low”), a possible problem with the part of my immune system which fights off respiratory infections such as pneumonia. The bonus prize today was  that the consultant also wants me to see a cardiologist, to double check that I don’t have something called postular tachycardia. I’m not worried about this, as I’m pretty sure he’s just ruling it out, but I certainly wasn’t expecting to hear that…

So… tomorrow… I will go to my rubbish GP and ask for antihistamines and Vitamin D tablets, and I will begin the low histamine diet. This involves, among other things, giving up (for 2 months at least) alcohol, chocolate, wheat, processed meats, cheese, anything with vinegar or soy sauce in it, tomatoes in all forms, fish in all forms and… well… that’s enough for now right?  Yes, I said alcohol. You heard it.

I think, to make this all more manageable, I’m going to document my thoughts, feelings and symptoms over the next couple of months. Partly for my own benefit but also partly for the benefit of other HIT sufferers… Who knows. I haven’t used this blog for ages but I don’t want it to become ‘A HIT blog’…  But still, might be useful, or might just be a handy ranting opportunity for me 😉  Either way, thanks for reading and feel free to comment or ask questions.

T.S. Eliot

I love this quote…

“We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.”

It’s so apt and beautifully evokes the personal exploration I’ve embarked upon in the last few months… :) Coming full circle to find myself back in my beloved London, looking at the city and my country with fresh eyes and a renewed sense of energy and purpose. New perspective, new challenges, new opportunities…

Homeless

I have never been homeless before… It’s an interesting experience. I can see how it can happen easily, and to anyone. Optimism becomes an enemy and enemies become friends. Sofas become homes, essentials become luxuries, roots disintegrate and the panic you thought you would feel turns into steely determination. Or at least it will do, once I’ve finished my tea and found some breakfast.

 

The Yangon housing market is a fickle mistress and the word ‘gazumped’ has elbowed its way into my daily vocabulary.

 

I am beginning to see the beauty in living with ghosts and may have to befriend a few in the next couple of weeks. There are a lot of them in Myanmar.

 

 

7th December 2012

Standing by the open kitchen window on the 6th floor of the apartment block in which I’m staying, for the first time in three weeks, I shiver.  A cool breeze embraces me, full of apologies for its lateness, greeting me as if after an epic voyage across the globe. I close my eyes, allow myself a smile and consider waking my flatmate so that she can experience this rare pleasure.

As ants crawl along the crease in my laptop, I blow them off, wondering if they realise how lucky they are that this is to be their only face-off with me. The Raid remains below the kitchen sink… for now.

An almost imperceptible scent of incense from the nearby monastery wafts into the room.  From the window, the backdrop of a hazy blue sky is cropped by a block of 4 mildewed apartment buildings, prefaced by dense greenery which lines a narrow gauge railway track.  On every floor of the apartment blocks, laundry is hung over windowsills or suspended precariously on washing lines, a long drop from the filthy ground.  Twittering birds try to make themselves heard above the persistent and unnecessary honk of a passing passenger train. The general rumble of traffic and beeping cars which had driven me crazy a few weeks ago now goes virtually unnoticed. (Another ant goes flying…) The ‘ding ding’ of a trishaw (or ‘sai-ka’) passing on other side of the building is so familiar it takes me a minute to realise how typically Burmese this moment is. And that breeze is delicious… I may never move from this spot!