Collapsing at conferences and other adventures

Yes, I was accepted to an awesome conference, huge, important, everything you’d want really.  I arrived a day early, felt tired and sore as per usual and more-than-usually weepy. Chalked it up to nerves and my body just being my body.  I delivered my paper the next morning and that evening, collapsed at the wine reception.

Thankfully, a very lovely lady I had met on other occasions was there and, as literally the only person I knew at this conference of over 200, she sprung into action.  Aided by some very helpful security guards, she took me to a walk-in centre where I was diagnosed with a kidney infection and given some antibiotics.

I didn’t get to see much of the conference as a result of this turn of events.  I did see a lot of my small hotel room and felt sorry for myself quite a bit.  When I did manage to attend one more panel the next day, people I’d never seen before asked me how I was because I had become ‘The Girl Who Collapsed’.

Now, the fact that I am sick is not something I hide. I may not go into details over a coffee on a first date but I’d like to think I’m open about my condition.  I’m okay with people knowing I have something wrong with me.  But, as it turned out, I was not okay being ‘The Girl Who Collapsed’. Showing such a colossal sign of “weakness” at an event I had spent months preparing for made me angry.  I wasn’t angry at any one in particular, I wasn’t even angry with myself, I was just annoyed that this is what my life is like and I have no control over it.  I did everything right – booking the closest possible hotel, scheduling naps and rests, pacing myself.  And still, my body betrayed me.  As is its way.

So…

 

Two weeks later, antibiotic free, kidneys functioning like a champion, I embarked on my next conference adventure.  This one too presented challenges.  Luckily, it was at home (not in my actual home ’cause that would be weird and unprofessional), at a place 10 miles from where I live, accessible by car, familiar territory.  Awesome, right? Well…  When I turned up for the first day, wearing the most fiercely colourful dress I own, I was turned away from my usual car park. FREAKIN’ DISNEY ON ICE! Unexpectedly, I had to park a ridiculously long way away and so, it took me nearly half an hour to reach the venue.  (Note: it probably would only take 8 – 10 minutes for an able-bodied person to cover the distance but as I am the speed of a grandmother snail, I am allowed to be disgruntled.)  My mega-awesome-cool fold-up walking stick had arrived earlier that week and it made its debut helping me get to the building. Lunch was unidentifiable sandwiches which I had to forego thanks to my bowel and its tendency to spasm when I feed it things without thinking.  My paper went well and I lasted the whole afternoon AND dinner.  Although my body was tense and aching, my insides stabbing away like a nightmare serial killer, I was so proud of myself for getting through that day.  The next, and last, day I deteriorated.  My eyeballs turned red (which was a great thing to happen for the first time at an important career event), I needed the walking stick more and more, many painkillers and heat patches were necessary and at one point I had to leave for a while just so that I didn’t break down and cry with the pain in front of everyone.

But, guess what? I made it to the very end.  And, that fact alone made me inproportionately happy.  Now, the two conferences were completely different situations but I can definitely pinpoint what helped me in the second.  Firstly, I knew that my own bed and my comfortable home were waiting for me.  Secondly, although I am forever grateful that the lovely lady was there at the first conference, at the second there were multiple people I knew and trusted (including the lovely lady).  People that offered to help out or asked me how I was, who offered to do things for me, who told me to go home.  Conferences can be stressful, especially when you have a chronic illness to contend with.  But you know what?  I’m damn proud of myself for doing them.  And maybe I’ll live down ‘The Girl Who Collapsed’ thing eventually…

Getting the all clear

Almost exactly one week ago I got the news that I did not have any cancerous or abnormal cells in the cervix.  YAY!

So, that means the problem is most probably hormone-related.  A prospect I could have diagnosed myself seeing as I burst into tears while watching the local news last week and, just last night, shed a tear reading David Suchet’s autobiography about playing Poirot. (Seriously, I’m not even joking.) Now all that I can do is wait to see my consultant to talk hormone treatments.  Which shouldn’t be a problem since I’m due to see him this month anyway…oh wait, there a FOUR MONTH DELAY on his outpatient list.  It’s pretty ridiculous that this isn’t even shocking or unexpected.  Of course there’s a four month delay.  I only got to have my six month follow-up from my last surgery eleven months after the surgery happened.

I guess I’m just left riding the hormone helter-skelter till then.  Which really sucks.  In an ideal world I would focus on my hormones, not let my emotions overwhelm me, take multiple hot baths to ease my cramping and tense muscles and generally “keep calm and carry on”.  While, of course, losing more blood than advisable and subsequently having problems standing up too quickly.

But, alas, this is not an ideal world.  As that song that I don’t really know by a band I don’t know the name of says in it’s catchy way, ” L.I.F.E.G.O.E.S.O.N.”

Next week is possibly the busiest week of the year so far.  On Monday I get my lignocaine infusion from my pain clinic (hands down, my fave hospital department).  On Thursday and Friday, a conference where I am presenting a paper.  Then, to the airport to pick up my plus one for one of my dearest friend’s wedding day on Saturday.  And, not enough to be guests for the entire shindig, I’m also singing in the ceremony – two songs which will have anyone who lives with/near me tortured between now and then. Not even sorry, a girl’s gotta practise.

So, here’s to the many many spoons I’ll be needing.  To the weird things I’ll (probably) do between now and then thanks to the hormones.  And, of course, to the fact that I don’t have cancer.

 

Chronic Conferencing

As an aspiring academic with a chronic illness, conferences are a necessary evil.

Well, maybe evil is too strong a word.  I love what I do. I am a huge nerd and being together with other nerds talking about nerdy things is something I enjoy.

I’ve been speaking at conferences for years.  I did my first when I was an undergrad, the weekend of my 21st birthday (told you I was a nerd).  The most recent was last weekend, bringing my total up to six, with two more planned this summer.  But as time goes on, and I understand more about my condition and how to manage it, I’ve realised I have to do conferences differently.

At postgrad training sessions they tell you the amount of work you should be doing, extra things you should be achieving, how to optimise your PhD.  I go to these things because I have to, choosing ones vaguely relevant to my subject area (no point going to one on ethics and interviews when all the people I study are dead, likewise with science/lab things) or ones that I know I should really go to for improving my skill set.  Most of what they tell you is good and sound advice, if you’re a normal, functioning human being.  I’m not.  My body is at odds with my mind constantly and telling me what I should be doing always makes me feel slightly guilty and angry that I simply cannot do that.

Studying for a PhD is tough.  Lately, there has been a lot of articles in The Guardian and The Times regarding mental health in academia, highlighting the stressful situation a PhD puts you in.  There is wonderful awareness being raised by @phdisabled on twitter with the awesome hashtag AcademicAbleism.   Go check it out if you’re interested https://twitter.com/PhDisabled even if you’re not interested, still have a look at the conversations that are going on out there in the twittersphere.

Unwilling to give up on my academic dreams but knowing that it is incredibly difficult for me to function the same as everyone else in the room, I’ve come up with my

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COMMANDMENTS OF CHRONIC CONFERENCES

1. In the days/week leading up to conference, save spoons. 

Okay, maybe I’m still writing the paper, twiddling with my powerpoint, sorting out what I’m going to wear (all equally important, obviously) but I will generally turn into a hermit the week leading up to a conference.  I will conserve as much energy as possible, saving as many spoons as possible.  Just getting through an entire day of being “on” intellectually in public is tiring, two days even tougher.  Spoons are everything.

2. Remember comfortable clothing

As someone who uses her wardrobe to express her personality, I love clothes.  I feel at my absolute best in bright colours (it is hard to feel down when wearing bright yellow) and like to dress to keep my confidence up.  However, I also have to bear in mind what will be comfortable to wear all day.  Trousers are a no.  So a dress.  But one that is not tight, one which will not ride up if I need to squirm around when uncomfy.  Tights or leggings.  Shoes.  A bag big enough to store my pills, a drink and a heat patch if necessary.

3. Take extra caution when eating

Whether it is a sandwich lunch or conference dinner in a posh restaurant, choosing food is so important.  There are certain foods I cannot eat at all (cheese, bacon, anything battered), there are others which depend very much on how they have been prepared.  If I eat something that doesn’t agree with me I will spend the rest of the day/night in pain so, bland is best.  I will always have the roast chicken option.

4. Breaks are not bad

Sometimes, I just need a break.  To be away from other people so I can pop my pills, have a stretch, pace around.  It can be tricky to get away in the middle of a panel or when you’re doing the all-important networking over coffee but, for me, sometimes it is necessary.  Even taking a panel off to go sit in a nearby café and regroup.  When organising a conference, this is even more guilt-inducing.  But having a break does not mean I am any less than the people who can go on all day. Breaks are not bad.

5. Take it easy

Much like the first rule, even with several days’ worth of spoons saved up, conferences use so much energy.  I know that it is best for me, and everyone around me, if I make an effort to not jump into something else.  Sure, there are still things to do but at an easy pace.  I won’t go out on all-day archive visits.  I won’t immediately round up all my friends for a cinema trip.  I’ll take it easy for a few days.  Let my spoon levels readjust.