endo

All posts tagged endo

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.

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!

“It’s not about you!” or being selfish when you’re chronically ill

Published February 19, 2013 by crazyinpink

I felt like screaming at him “Shut up! It’s not about you! You haven’t done anything. I don’t even care about what we’re talking about. I’m just sore! It’s nothing to do with you!!”

Moments like this, although not frequent, are familiar to those of us living with chronic pain and especially an invisible illness. Something changes inside you and you go from being normal to suddenly having pain or discomfort. If you’re in the middle of something, your whole demeanour changes.

I go quiet, I concentrate on even breathing and my posture ranges from hunched over to leaning back – anything to try and ease the pain.  When this happened on Saturday, in the middle of a day of conference organising with Best Friend, he immediately thought he had done something wrong and went on the defensive.

It’s happened before and it’ll happen again. Best Friend isn’t the most confident person in the world and, in his socially awkward ways, assumes he is to blame for any slight change in my attitude or appearance.

Last year, during the most awkward weekend of my life, I cried in front of him while we stayed in a B&B in Ireland. For months he kept on about it, asking me to tell him what he had done wrong and why he had upset me. It was only in a surge of embarrassing boldness, I finally told him that I had an abscess that weekend which was causing me considerable pain and discomfort and I couldn’t have told him that when we were there.

Sometimes, I feel so helpless about what my body does without my permission. I could be fine, working away, smiling, spending time with friends and two seconds later, my insides are spasming and it feels like a rusty hook is dragging across my pelvis. There’s no big announcement or event that precipitates the change. There are no signs. It just happens. But the timing sucks sometimes.

So it happened on Saturday, while going through a budget for our conference, a cyst that I had only noticed the day before became so angry and determined to disrupt my relative peacefulness.

Best Friend and I have a weird kind of relationship, where we’re close enough to share everything but only at certain times. If I volunteer information, he usually recoils and feels awkward. I have to keep it until he asks, only then do I know he’s ready to handle it. And he does ask, eventually.  He’s been so good during the last few weeks, phoning me every day, sending me cards. When I returned to the office for the first time on Friday, he spent all day hugging me and, for the first time ever, kissed me on the cheek. He was truly happy to see me.

Now that this cyst has reared its ugly infectious head, I know I’m more tired, more grumpy and less “me” than usual. My body is fighting an infection while its still recovering from having stuff scraped out of it.

I tried to tell him I was sick but, in his head, I’ve had an operation and so I should be better.

I know I’m being selfish but I just felt like yelling at him. His insecurities irritate me and I don’t really know why. He is only trying to help, he cares about me and wants to know what he has done to upset or annoy me. But, right now, its not about him. Its about me.

 

Of course, even saying that makes me feel worse. 100% Bitch.

Back into the swing of things

Published February 14, 2013 by crazyinpink

It’s now time to re-enter the world after my post-surgery ‘hibernation’ of the last month.

I have a lot coming up over the next few weeks and, while I should have been back at university last week, the extra week at home has really convinced me that I am recovered. With any previous operations, and particularly the one last July, I was so anxious not to miss anything that I hurried my recovery.  When will I learn that my body likes a slower pace?! So, this time, I did it properly. I had my daily salt baths, I didn’t leave the house for a full two weeks, and after that, I paced my recovery. I went to church for an hour. I visited GB for half an hour. I’ve been slowly building myself back up and I feel better than ever now.

At the weekend, I did my first outing without my mum, who has been my constant nurse, companion and chauffeur. My Toyboy drove me to the cinema to see Les Mis. I was so disappointed I couldn’t go see it the minute it came out since I’m such a musicals nerd. But Yay! I got to see it and it was amazing!! I may have fallen a little bit in love with Mr Revolutionary. Something which Toyboy, who was watching it for the second time, had predicted would happen.  But seriously, how could you not swoon with this face and that determined stare?

untitled (4)<

Anyway *recovers from swooning* I was all set to go back to the office on Monday when my car wouldn’t start. My car is literally running on wishful thinking, it’s so old and, like a grumpy old man, only does things with a lot of moaning and groaning. This time, I had to get a new battery, which took a few days. Thankfully, I have more than enough work to keep me occupied at home but I am looking forward to getting back to the big world.  And just in time too. There is much happening over the next few weeks.

This weekend is marked out for conference organising.  It seems like only yesterday I was complaining about the committee and all the politics and now, its only two weeks away. Our call for papers closes tomorrow so the weekend will be spent choosing the papers, organising panels, assigning chairs. Basically it will involve a lot of lists and hopefully, some arts and crafts. 😀

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Next week, I have a meeting of the Pain Alliance of Northern Ireland. As I’m the unofficial poster girl for chronic pain, I’m being trotted out to speak to politicians, etc. There’s free food though. Then academic obligations kick in. My research project is hosting a one-day workshop on poverty (exciting, huh?) next Friday. We’re taking the visiting speakers out for dinner on the Thursday night. Which also happens to be my birthday so I’m spending it with a bunch of historians. What a fun way to celebrate my 24th!

Hopefully, I’ll get the chance to meet up with some of my girlfriends for a wee cinema trip over that weekend and see my family. Because the next week is going to be full-on panic mode in the countdown to the conference. Which is another weekend gone. I’ll be so glad when it’s all over and, fingers crossed, all has gone as it should.

Next up in my diary, an interview for an online broadcast on endometriosis. Part of a series on chronic pain but an episode will be focussing on endo specifically and, handily, it’s being recorded during Awareness Week!

That weekend features bag packing in a local supermarket with my GB girls to fundraise and then a church concert.

I am so glad I’ve booked a little holiday to England at the end of March…I think I’ll be needing a break by then!!

untitled (3)LONDON BABY!!!