Lessons

Learnt some things over the past couple of weeks:

1  Despite appearances I do not, in fact, source my powers from alcohol. Neither does the ground open up and swallow me if I don’t drink it. In fact, nothing happens at all other than the occasional ‘I really fancy a glass of wine. Oh I can’t have one. Oh well, where’s the slimline tonic?’  Who’da thunkit?

2  The most difficult thing in the world is managing clinical depression. The second most difficult thing in the world is caring about somebody else who is suffering from clinical depression, especially when they don’t want help.

3  If you eat enough carrot sticks, you eventually turn orange. Okay, this isn’t necessarily true but the jury is still out.

4  You WILL lose weight on the low histamine elimination diet. Like, immediately.

5  There is no point ever buying music from HMV. Does everyone else already know this?

6  Home is where your cat is.

7  If something isn’t working, it’s okay to say “this isn’t working” and go back to square 1. At least I hope this is true… It happened when I went back to Burma… It’s happened pretty quickly after moving to London. Who knows if it’s timing, if it’s the season, if it’s the situation, or if it’s just my state of mind, but my priorities from here on are my health and my happiness, and for me this means ‘retreating’ to the least stressful environment I can find and putting my energy into my job, friendships, health and making positive plans.  Stress releases histamine, so no surprise that the past 2-3 months have taken their toll on my physical well-being. I’m taking next week off work to catch up with my lovely friends in Dorset and do some de-cluttering at home and I’m [hopefully] going to book a trip to Sri Lanka to visit another lovely friend later this year. All Good Things {TM}.

And one observation too… Since changing my diet, I’ve started having ‘nice’ (or at least ‘neutral’) dreams. For as long as I can remember, I have only ever had bad dreams. Not necessarily nightmares, but dreams with a sort of gloom about them – a sense of foreboding, panic or sadness. One morning last week I woke up and realised with no small measure of surprise that I’d just had a dream that was actually quite pleasant. Can’t remember anything about it now of course…

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.