Nuts, Allergies & A New Perspective – An Anaphylactic Adventure

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Allergies. Always a fun thing, and something which I have lived with all my life. I mean I am allergic to pretty much everything: apart from having bad asthma and being lactose intolerant I am also allergic to tree pollen, grass pollen, dust mites, strawberries, kiwis, pineapple, cats, dogs, horses, rabbits etc etc…..and NUTS.

Up until fairly recently I’ve always been pretty ‘lax about it all. I mean, sure, it’s annoying having to chug down antihistamines by the bucket load all year round, and being all itchy and stuff is not much fun, but all in all I have been pretty unconcerned about it. In spite of having been rushed to hospital a number of times, I’ve just never really taken any of my allergies particularly seriously, never thought of them as something potentially life-threatening. That is until a little while ago, when, having inadvertently eaten something which contained nuts at a seder meal, I went into anaphylaxis.

It was a delayed reaction, so I was already on the bus on the way home, when it struck, and when it did, boy did it strike hard and fast. Even though I could instantly feel that this was very different to an ordinary reaction or to an asthma attack, I of course got my inhaler out and started puffing away. Only it wasn’t helping. At all. And this is when I got really scared. My tongue was swelling up and my throat was closing, and I really didn’t know what to do. Thankfully the guy who was sitting next to me [who didn’t know me at all] must have also realised that something was very seriously wrong, because – without even asking me if I needed help – he got his phone out and called 999 while at the same time [incredibly impressively] had the presence of mind to call out to the driver to stop the bus so he could tell the emergency service where we were. Within only a few minutes the paramedics arrived [one of the definite advantages of living in a big city], gave me a shot of adrenaline, transferred me to the ambulance, hooked me up to an IV drip and took me to the hospital. They gave me another shot of adrenaline and added some sort of steroid – I think – to the drip. To be honest, even though they told me exactly what they were doing, I wasn’t really with it enough to properly take it in. All I know is that by the time I got to the hospital I was breathing fine, and so as soon as the doc came to see me I was like “Can I go now?”

Not knowing all that much about anaphylaxis I figured that all was fine and well; the adventure was over, I was exhausted and just wanted to get home and to bed. But the doctor insisted on me hanging around. By the time I finally got discharged it was just gone 2 a.m. Had I known at the time about the high risk of anaphylactic relapse once the adrenaline stops working, I probably would not have badgered the doc to discharge me ASAP.

I was clearly in shock, because while waiting for the doctor to agree to discharge me I updated my Facebook status with a comment about being at A&E of Hospital X, when in fact, it later turned out I was actually at Hospital Y. Just as well that I turned down my friends’ very kind offers of coming out to see me, ‘cause I would have sent them to the wrong hospital.

The day after, I was still pretty blasé about the whole thing, joking about it with some friends I was meeting up with. Even their telling me off for not ringing them had much of an effect. It wasn’t until later that evening that it finally hit home: I could have died. In fact, had the stranger on the bus not acted as quickly as he did, I most likely would have.

As a consequence I have now been to see my GP and have been issued with an EpiPen and strict instructions to never ever take any risks with nuts. I have trained friends and house mates alike on how to administer the injection, should I be unable to do so myself, and I read food labels religiously.

This experience really has jolted me into action, into taking my allergies seriously. And it has also highlighted something quite important: that although I in an odd way feel almost OK with the idea of suicide, should life get me to that point, I would not want to die without feeling that I was ready for it.

I’ve spent a number of sessions with A. talking about this. About the difference between choosing to die and just dying. I know it’s a bit of an odd concept, but in many ways it makes sense. It’s not the dying I’m necessarily afraid of, it’s the not being ready, the fear of not being given the chance to say goodbye to those I love.

This, by the way, should not be interpreted as me saying that I am going to kill myself tomorrow, or even the day after that; it’s just a way for me to explain why, suddenly, I feel almost paranoid about eating things. It’s that unpredictability factor, the inability to control things. I can check and double-check food labels, but there are no guarantees. And it really scares me.

So, from now on, my EpiPen and I are joint at the hip.

xx

PS. Why oh why is word check telling me I mean ‘profylaxis’ every time I type anaphylaxis..?

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When You Have No Voice – Making A Decision To Communicate

It’s been a long time, I know, but I’ll try to put you all back in the picture, as I know you will have all been eagerly awaiting my next update. [What? No?]

In the last few weeks I have been dealing with one of those much dreaded periods of flashbacks, and things have often felt completely and utterly hopeless. The flashbacks have by no means gone, but there have been a few days every once in a while when there have been fewer, and I’ve been able to find at least a little breathing space in between. When things are bad, that’s the time to focus on small blessings.

At the beginning of last week I had to go into hospital for a whole battery of tests and examinations. Part of these was a gynaecological exam, which for me is essentially an equivalent to psychological torture through physical means. I always try to prepare whoever is doing the exam by explaining that I come from a background of having been sexually abused as a child, and that these exams are pretty much garanteed to trigger off flashbacks; in short that they may need to brace themselves for my emotional response. They then usually say something along the lines of “Don’t worry, darling, I’ve seen it all before”, which is of course very kind and much appreciated, but it generally tends to become apparent that this is not really the case. When they’re faced with the sobbing heap these exams turn me into, it’s often clear that I react worse than most people they’ve examined. This then spirals into this odd cycle of them feeling sorry for me, and me feeling sorry for them having to carry out the exam on me..

So, not nice at all.

This particular nurse was absolutely fantastic, though, I have to say. It was very obvious that she was affected by my reaction to what she was doing, but because she was very open about that, I found that somehow reassuring and it in many ways it helped bring me out of the flashbacks and back into the here and now where we both were.

Concurrent with the flashbacks and general depression I have this week come down with some seriously nasty bug. This bug, by the way, is completely unrelated to the hospital thing, unless I have really lucked out and managed to contract MRSA while I was there..

At first I thought it was just hay fever, as this is the season when I usually have to stay indoors with my inhaler close to hand at all times. Had a very painful throat – not sore – painful, something I don’t usually get with my hay fever, but initially I just assumed that my body had decided to take my allergies to the next level. As it turns out this wasn’t it. Came down with a 39C temperature [that’s 102F, if you’re so inclined] in the middle of the week, and it’s been going ever since. So, what with the painful throat and the fever I’ve essentially had to be on paracetamol non-stop. It’s not great, Ibuprofen tends to be more effective, but for various reasons I am currently banned from taking that particular pain reliever, so there you go.

Feeling miserable on all levels is not a great place to exist and things have been unbelievably difficult. I know my last entry was pretty dire, and from there I suppose you could say things went south. Having no therapy has been really challenging, it feels like years until A. returns from maternity leave. But, I am still around, still fighting – even if the evidence of this has not been posted on my blog.

This Friday I had been invited to two sedarim – the special meal eaten by Jews on the first night of Pesach, but instead I spent the evening in bed, fighting flashbacks and this blasted bug. Last night I had booked a place at the communal 2nd night seder at my shul together with many of my friends. I did make it there, in fact even went for a pre-seder drink with one of my friends, but didn’t make it through the meal. Was feeling incredibly rough and then began having flashbacks, and I had to make the decision that I needed to make sure I could make it home safely before things got even worse. Hated having to leave, but as it turns out it was probably a wise choice.

This morning I woke up having absolutely no voice.

I have lost my voice in the past, but never quite this completely, and it’s kind of an interesting thing; the second you discover you have no voice [in my case when I began recording a voice message for my sister] you realise how much you rely on it.

I don’t usually use my phone or computer on Shabbat or during religious festivals. This is not so much because it’s biblically and/or rabbinically decreed that one should not use iPads or Blackberrys during festivals, as much as – being a modern reform Jew – I’ve made the informed decision that for me stepping away from all my techie gadgets and disconnecting for a bit makes those times different to other times. I am normally contactable at any given moment, day or night, be it through texts, Facebook updates or tweets, and so I like to make Shabbat and festivals different and special to other days, through unplugging in this way. Admittedly, most of my friends think this is completely bonkers, but hey, it’s just the way I roll.

However, since that accidental-on-purpose over-dose the other week, I decided that it’s actually a lot more life-embracing to temporarily break that self-imposed rule than to keep it. Which is why you are seeing this update today, during a week I would normally steer clear of modern technology.

To help me through particularly rough patches over these past few weeks I have often sought support over the telephone from my sisters, my friends and the Samaritans, regardless of whether or not this has been on Shabbat. Being able to talk about what’s going on, both physically and psychologically, makes me feel less like I’m on my own in this.

So, as you can imagine, waking up this morning, with no voice at all, has come as a bit of a shock, and has left me feeling very vulnerable. Which is why I’m sitting here now, writing this..

I guess that even when you haven’t got an audible voice, you can still find ways of making yourself heard.

Do be kind to yourselves,

xx