chronic pain

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What if?

Published June 15, 2013 by crazyinpink

I sat listening to these strangers reading their poems, their personal thoughts and feelings on show, expressing what was going on inside them.  Some shook visibly.  Others wore a mask of confidence which faltered slightly on their walk back off the stage.  Some pretentiously assumed they were better than everyone else; nerves probably weren’t featured in their extensive, over-articulate vocabulary.

My mind wandered back to the course I took on creative writing and the poems I wrote then.  Forgetting the fact that they were nowhere near as good as the standard before me, I wondered whether I’d ever have the courage to stand up and read something I’d written to a room full of strangers.  What if I had stuck with my English degree?  Would I be attending events like this poetry slam to participate, instead of sitting at the back with some friends and giggling at the various displays of awkward pretension?

Continuing this counterfactual exercise, during one particularly complicated philosophical poem I couldn’t quite follow, I considered what my life could have become.

What if I had followed my first plan to be a journalist?  What if I followed the more serious and thought-out idea of becoming a teacher?  Would I be here encouraging a student or looking for ideas for class on Monday?

What if I’d never got sick?  Would my life be a blur of activity, eating pizza without a care, wearing jeans everyday, fitting into the size 12 clothes that now hang abandoned in my wardrobe? Would I know that my friends were true and would stand by me no matter what?  Would I have found that inner strength being chronically ill has given me?

What if I never had to choose between different parts of my life?  Would my education have suffered because my time was stretched between so many different pursuits?  Would my relationships have failed if I had been perfectly healthy?  Might I be sitting here with a proper grown up job, my hand entwined in someone else’s?

The room applauded the deep and no doubt tortured soul of the poet as he stepped down.  The sound brought me out of my own soul-searching.

I looked down at my loose fitting size 16 dress smoothing it over my leggings and folded my legs under my chair, kicking over my handbag full of pills and my notebook full of scribbles lest I forget anything important.  On my left sat a friend who had talked me into coming.  She had her own on-going fight with depression but never failed to try to understand what everyday was like for me.  I felt such warmth towards her and all my true friends who had accepted the different me that had come from being sick.  I wouldn’t have appreciated these friends so much, my time would still be filled with superfluous people who didn’t care that much.

A breath came on my neck with whispered words of sarcasm in my ear.  On my right sat a man I’d known for years but in recent weeks had gotten to know so well.  As I smiled in response to his witty remark and our eyes met, I realised that the person I used to be might have flirted aggressively with him until I scared him off or, more probably, completely disregarded him as too shy or too…something else.  I wouldn’t have gotten to know someone so lovely who seemed to get me so fully.

The next poet steps up to the microphone.  I shift in my seat to find a more comfortable position.  My hip bumps into my great friend on my left.  I see the stage past the profile of the guy on my right, his long eyelashes bringing themselves to my attention; I’d never noticed them before.

Actually, I’m pretty content with how things have turned out, I think.

OCD PhD

Published June 9, 2013 by crazyinpink

Haven’t been able to post as much as I’d like recently. With only a few months until my differentiation, my supervisor wants a draft version of my first chapter by the end of June. And even though I knew this and knew the amount of work I had to do to get this done, I still went ahead and booked a trip to England.

I found out that there was a Sherlock Holmes conference in London and the obsessive side of my personality knew I couldn’t miss this opportunity.

A two-day geekfest all about my favourite fictional hero? Sign me up!untitled (18)

 

An outpouring of excitement on facebook followed this discovery and a friend offered to accompany me on the condition that we went to see Les Mis in the West End while we were there.

 

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A week or so later we ironed out all the details, squealed our combined excitement down the phone and booked our flights, hotel and tickets.  Looks like I’m heading back to London baby!!

Since I’ll be in England anyway, I figured I’d make another little trip to Bristol to see Bristol Boy.  Taking my impromptu trip up to a total of six days.

Losing those six days meant I had to get super-organised to get my work done in time.  I love doing my PhD but I also love having a life.  The relief I got out of my operation means I have a much better quality of life now and I am determined not to waste it.   So I applied the same obsessive tendencies I use to pursue my hobbies (currently trying to finish reading all the Sherlock Holmes stories before I go away) to my research.  I made exhaustive lists of all the materials I need to read and broke them down by archive.  I ranked them in order of most to least important and compared them to my long list of secondary literature to read.   I made a timetable of each day between now and my trip.  I figured that if I get all the research done before I leave, then when I get home I can spend a couple of days writing it all up and hopefully get it off to my supervisor by the 30th.

But all work and no play makes life completely dull so my schedule has also allowed some time for recreation.  I’m going out with friends, seeing shows, going on day trips, catching up on the fun I missed out on all those years I was stuck on the sofa clutching a hot water bottle.  I still get tired and still have trouble with my tummy on occasion but I pace myself and save my spoons for when I know I’ll need them.

Being so obsessive does have its perks at times. 🙂

Conference adventures

Published May 9, 2013 by crazyinpink

As a PhD student, the weeks blend into each other. I sink lower and lower behind piles of books I need to read and lists of sources I need to find grow longer. It is a strange thing, a PhD. You lose any concept of time passing. You only figure out it’s no longer term time when you venture into the library and there is a conspicuous absence of undergrads. There are no weekly duties like lectures, there are no monthly goals like essays, there is little face-to-face time with your supervisor or, indeed, any other human being if you’re not careful.

I don’t cope well without something to work towards. I know I have differentiation at the end of the summer but that’s months away.

So I set myself short-term goals. Within one month I wrote a 7000 word lit review, created a poster about my research and presented it with a little talk and wrote a paper for a conference. In hindsight, that was probably too much in such a short period of time.

Presenting my PhD research for the first time at a conference was scary. With all the setbacks, taking a month off for my op, organising my own conference, I felt I needed a push to get something down on paper. It forced me to do some research and think about it properly so it made sense. My title for the paper was the vaguest one I could think of so I could do anything with the paper within that vague area. The conference programme showed that mine was definitely the vaguest title. *proud*
I wrote the paper based on what I know so far. That’s not much, it must be said. I haven’t done that much archival research yet. But I was kind of pleased that at least I understand what I’ve done so far. I found it relatively pain-free to write the paper, though it ended up veering into the realm of intellectual history which I’ve never ventured into before. Intellectual history is concerned with ideas, how they filter through society and what motivates and cultivates these ideas into action. When I sent it to Best Friend to read over, he pointed out the intellectual history nature of it. I nervously asked if he thought it was okay. I didn’t want to embarrass myself talking about these big ideas if I couldn’t fully express them properly.

Paper written, we set off for the conference. Of course, both Best Friend and I were presenting at the conference since we can’t seem to do anything independently these days. We arrived a day early to do some sight-seeing. Early morning flights are not my friends and I was flailing by mid-afternoon even with all the random touristy things we were doing. On that day we visited a monument (up a stupidly steep hill), a graveyard, a castle (at the top of another hill), a cathedral and an art gallery. Not too shabby. Then we checked into our hotel and I had a nap while Best Friend practised his paper for the next day. We met up with another student from our uni for dinner and eventually, finally got to go to sleep.

The conference itself was grand. Only a nine to five affair, all postgrads so a sympathetic audience and only about thirty or so people. My paper went well and I got some really interesting questions that I was able to provide at least some kind of answers to.

My bladder, which is causing me problems at the mo, started to protest by the end of the afternoon and I ended up sitting awkwardly trying hard not to make it look like I was in pain from out-of-control bladder spasms. A lovely middle-aged man was talking to Best Friend beside me. He noticed my yellow ribbon I had pinned to my dress and asked me what it was for. I told him it was for endometriosis and then, seeing the blank look on his face, explained that it was an incurable medical condition which caused chronic pain. He asked if I knew someone who suffered from it and I said that I did. Best Friend was throwing me telepathic messages of ‘Please do not start talking about your ovaries.’ I was too uncomfortable to really keep the conversation going but at least he has heard of it now.

We wandered around the city, popping into the library (of course) and then back for dinner again. It was an intensely academic trip, even our dinners were spent with the two boys talking about history or theory (or football) and me absent-mindedly checking my phone or sipping juice, thinking longingly of sleep. But it was nice to have a little break from the routine for a few days.

Best Friend was on his best behaviour too. I was slightly anxious about us going away together again, especially since we couldn’t afford separate rooms. (Or, really, I couldn’t afford) But I needn’t have worried. He was a perfect gentleman and seemed to be looking out for me when he could tell I was getting sore or tired. He kept mentioning Bristol Boy as he isn’t entirely sure about what’s going on there. Neither am I really but Best Friend has a very basic understanding of relationships and in his head, I’m taken now so there are much clearer boundaries in our friendship than there were before. All in all, the trip went well, even though it did involve incredibly early mornings and a lot of walking.

But now…back to the books.

Uh…shouldn’t I be completely pain-free and saving the world by now? Or, what it’s really like adjusting to post-surgery life

Published April 29, 2013 by crazyinpink

When I had my op in January and my doc removed 99% of the nasty endo monsters inside, I figured it’d take me a while to recover and then I’d be the new and improved me. I’d be wearing jeans every day, eating whatever I wanted, able to do a million things a day, maybe I’d even save the planet.

untitled (13)It would be AMAZING being pain-free, right?

 

 

Well…it hasn’t exactly turned out like that. For one thing, I’m nowhere near saving the world. I still haven’t had even a single slice of pizza. I certainly cannot wear jeans every day.

In reality, I can’t even say that I am pain-free.  Don’t get me wrong, I am not in pain the way I was before, nowhere near that in fact. If my previous pain levels were around 9 or 10 (which they were towards the end of 2012) my current levels average around 3 or 4.  I’m not saying I don’t appreciate the dramatic reduction of pain in my life because I do. So much.  Pain doesn’t consume my every waking thought now.  It’s more like an annoying half-remembered task in the back of my mind that I have to get around to eventually.  Since my surgery I’ve had complications which are probably stopping me from being the kick-ass superhero I want to be.  My triumphant return to the world post-recovery was marred by a Bartholin’s cyst.  The antibiotics gave me thrush and made me sick.  Returning to my studies brought consistent back pain.  The last month or so I’ve been having problems with my bladder which I’m starting new antibiotics for today.

So yeah.  I haven’t really progressed as much as I’d have hoped.  Perhaps it was naïve of me to hope at all.  I know endo is an incurable condition yet still I prayed that my op would bring relief.  I dreamed of living like other 20-somethings, having spontaneous fun, wearing jeans that actually fitted me, being able to do things all day without the need for a nap or rest, not having my schedule dictated by my medication. I’m an optimist I guess.

I’m not complaining though. My op has dramatically improved my quality of life. I don’t need as many painkillers now so my head isn’t as fuzzy as once it was. I’m able to do things that would have proved impossible before Christmas. I was able to go and have my little English adventure. Since February I’ve only had 2 days when I literally couldn’t get out of bed.  I’ve dusted off jeans my size and worn them cautiously for a few hours at a time.

I’m not exactly Superwoman yet. And maybe I never will be. Being perfectly healthy doesn’t sound like something that will ever happen to me. I know that. I know that my future health is uncertain. I know I’ll worry about having sex and how much pain it’ll cause. I know it will probably be difficult for me to conceive naturally. I know that more treatments and procedures are in my future. I know that I’ll need a Dish to understand what my spoonie life is life.  I know I’ll keep trying to raise awareness of this condition that changes so many women’s lives.

Maybe that’s all I can hope for.  A life not perfect or pain-free but having the strength and the right tools to face whatever life throws at me.

Getting cocky

Published March 21, 2013 by crazyinpink

After my last post about wearing jeans, I got a little bit too cocky with my rediscovered denim abilities.

I spent Saturday morning at a dorky history thing (which was actually pretty interesting) and topped and tailed it with a bit of retail therapy and lunch with a friend.  I wore jeans all day.

By the time I got home, in the snow I might add, I was feeling the pressure. I immediately had to change into pyjama bottoms as soon as I got into the house. I then spent about an hour curled up on the sofa watching some Barbra Streisand movie about two professors who get married for companionship, then she falls for him but he isn’t attracted to her.  I have no idea what the movie was called or how it ended cause I had to force myself upstairs to make a fancy dress costume.

My friend had a Middle Earth themed birthday party. As someone who has never read or even watched the Hobbit or any Lord of the Rings, I was pretty clueless. I decided to go with Legolas so I googled a picture, borrowed a bow and arrow from a friend and tried to recreate Orlando Bloom.  It didn’t actually go too badly, I put in more effort than some people.  It was definitely fun traipsing down to my friend’s house in the snow holding a bow and arrow!

Having just walked with nothing but my phone and keys (and bow and arrow) I didn’t have my pills on me and thought I could do without them.  It had slipped my mind that I’d thought the exact same thing the night before.

On Sunday morning, my body was not amused. The jeans and the no drugs brought back pain I hadn’t felt in weeks. I spend Sunday and Monday in bed, unable to do much.

I’ve learnt my lesson and have been diligently taking all my drugs at the right time. I haven’t gone back into jeans, I’ll leave them for shorter outings and not try to wear them all day for a while. I don’t want to jeopardise recovery by being stupid and getting cocky…

Wardrobes and wearing jeans

Published March 15, 2013 by crazyinpink

I’m writing this while wearing jeans that actually fit me!  In the grand scheme of things, I know that it isn’t such a big deal, people wear jeans all the time.  But I haven’t worn jeans in four years. Jeans that actually fit me and aren’t my old ‘fat’ jeans which are two sizes too big and just hang around my hips. Every time I walk past the mirror, I stop to look at myself. I’m nothing special to look at but wearing clothes that fit me properly makes me look totally different from my usual wardrobe of loose, comfortable skirts and dresses. I can’t help but smile.

I ventured into a clothes shop the other day after picking up a mouth guard from the dentist at a ridiculously early time (turns out I’m a teeth grinder, who knew?).  Not surprisingly, there are few people in shops at 9.15am. I didn’t go in for anything in particular, I just figured that I’d got up and dressed so early, I may as well do something else before going home again. Immediately I found myself looking at long, floaty dresses, automatically testing the fabric to see how giving it was.

Then I stopped myself. Maybe I didn’t need to continue to buy the same kind of clothes. I’m not in as much pain now after the op, I even wore jeans for eight hours straight last week. I ventured into a section of the shop I don’t think I’d ever visited before. Shirts, tops, even *gasp* trousers!! Having lived with pelvic and abdominal pain for so long, I had forgotten that these clothes were an option. Most of my wardrobe, about 90%, consists of dresses of varying styles and fabrics which I wear with ever-forgiving leggings. Last week when I decided to give the jeans a whirl, jeans which I bought in a mad bought of optimism before last July’s operation, I realised how few tops I own. I have t-shirts, mostly novelty ones I wear around the house or with the afore-mentioned ‘fat’ jeans. I had two nice tops which come out about twice a year or so for special occasions.

Don’t get me wrong, my wardrobe is far from boring.  It might be restrictive compared to normal people but I still use clothes to express myself. I wear impossibly bright colours and quirky prints.  I accessorize like Gok Wan and have a shoe collection that would rival Carrie Bradshaw’s. But walking around that shop the other day, I felt a little thrill I haven’t felt in a long time. I could buy clothes based on how they looked on me, I didn’t need to obsess as much about how clingy the fabric was, how loose it would be around my tummy, whether it would be comfortable enough for long days working in libraries. It was oddly freeing. And terrifying. Would I be tempting fate if I bought myself a new, healthy wardrobe instead of the chronic one I’ve been sporting for years?

In the end, I compromised. I bought a dress which had a 1920s vibe with a gorgeous flowing skirt and a pink and orange check fitted shirt. I can’t wait for the weather to get a little warmer so I can wear it with my jeans and shock everyone with clothes that actually show my shape!

Conference Craziness

Published March 4, 2013 by crazyinpink

Regular readers will know that I’ve had a lot of stress planning a conference lately.  The conference is now over (Hallelujah) and now, in the post-apocalyptic world left behind, I’d like to tell you about it.

A lot has happened, particularly between Best Friend and me, so I think I’ll spread it out a bit. This post will cover the conference and my next will tell the story of me and BF…

Months of planning and organising culminated in possibly the most stressful weekend of my life.  Friday kicked things off with a welcome wine reception. We had around 80 delegates, most doing a fair bit of travelling to get here. I had mentioned to BF that I would quite like to do the opening speech. It sounds selfish and awful but, of the two of us, I am the better public speaker and I thought I’d probably be the better choice to welcome since I am the friendly, outgoing one.

Everything went well, aside from the fact that BF kept going awol and disappearing for forty minutes. There was a minor issue with security that I had to sort out and generally keep things moving and make sure everything was going well. The speech was only about two minutes to kick everything off. After the special guests had made their speeches, I invited everyone to continue to drink up the wine and eat the cheese and felt free to go chat to my friend Caroline.

BF pulled me aside and criticised my speech for not mentioning everyone on the committee. The only names I had mentioned were mine and BF’s as we had been sending all the emails and were meant to be the two organisers so everyone had already heard our names. After I walked away from him with a feeling that I would never be able to win, he dragged me outside to chat. I refused to apologise and he in turn saw how stressed I was and gave me a quick cuddle until someone appeared in the stairway.

Saturday was the main event – a full day of papers with coffee breaks, lunch, a workshop and then the conference dinner. I had made up a comprehensive rota of everything that needed to be done and had handed it out at our last committee meeting. Everyone left them sitting on the table and ignored my careful plans. I had a clipboard (decorated with pink flower stickers) with all the signs and info needed throughout the day. I left it down for two minutes and the committee witch had stolen it. I got it back and left her with the registration lists…boy, was that a mistake.

Everything went smoothly until after lunch. Everything that needed done had been done, mostly by me while the others sat around looking important. I made time to pop into papers relevant to my research and had my own phone as well as BF’s for emergency calls. At lunch, I was looking forward to a break and a wee chat with Caroline but, on venturing to my handbag for pills, discovered the registration desk was unmanned with our float left sitting open, so ended up minding it. After lunch, I went to a panel only to be called out by BF. Committee Witch had decided that my numbers for the conference dinner were incorrect.  I had only been working on the registration lists and payments for weeks, she’d first seen a version of them that morning, so obviously she knew more than me about it all. Convinced we needed to order more dinners, they started going through why I was wrong and they were right. No matter what I tried to say, they did not want to hear it. I took the lists and shut myself in a room with a computer to work at the spreadsheets. After going through everything twice, I arrived at the exact number I had given them earlier. I tried to calmly explain it to them but, once more, they refused to accept my word for it and needed BF to confirm. He knew absolutely nothing about them but came and stood beside me while I restated my case yet again. After listening to me, they decided they were right anyway. Satisfied that a decision had been reached, BF disappeared once more. I went to the toilets and cried. Caroline was in a panel listening to papers, I couldn’t go in and listen myself while so emotional nor could I loiter in the foyer with the rest of the committee.

A friend happened to text to see how it was going and I spilled it all to her. Within twenty minutes, she had arrived at the university to give me a hug and hold my hand. We waited til Caroline got out and I did my last round of room checks, putting up signs, etc and we escaped. I had said from the beginning that I wouldn’t be around all day and I would need a break in the afternoon. Of course, no one had listened. BF was texting to find out where I was… I was in a cafe with my two friends and a lovely girl we had picked up at the wine reception. Asking for the largest hot chocolate they had with whatever crap they offered with a hot chocolate. the waiter asked if I’d had a bad day. When I said yes, he returned with the most massive hot chocolate known to mankind with double flakes, marshmallows and a mountain of whipped cream.  It was pretty awesome.

I felt oodles better after that. Went along to the AGM to support BF and then had a little rest in the office with BF and Caroline before heading out for the dinner.  Right from the moment we entered the room the dinner was in, I felt close to tears.  I don’t know why, I was just incredibly emotional.  I sat with Caroline, the rest of the committee sat at a table on the other side of the room.  I waited for BF to invite me over but he never did.  He did the thank you speech.  He did really well but by the end, the tears had spilled. In his list of thanks, he kept the committee to the end and me to the very last. He thanked me for doing a little bit of everything and writing everything down in my notebook to keep him right.

I know that he meant well and what he said was true but it didn’t do justice to all the time and energy I had spent on everything.  Everything caught up on me, the exhaustion, the pain, the hormones, my feelings, everything.

The conference is over now and it all went smoothly.  There were no major crises and we were commended by everyone for our organising.  But now, afterwards, I feel like something has changed.  I feel like things might never go back to the way they were.