health

All posts tagged health

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. 🙂

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.

Birthdays and Sad Times

Published February 24, 2013 by crazyinpink

My re-launch into the world has not gone exactly to plan.  The infection I mentioned in my last post is ugly and the two strong antibiotics I’m on have been messing me about with all kinds of side effects.

Thursday was my birthday and I spent it conference organising and then dining with a bunch of academics.  Then Friday was taken up with a workshop all day and a cinema trip with two of my girlfriends.  I arrived home after midnight to find my mum still awake in the living room.

I instantly knew something was wrong. My mum is always in bed by 11pm at the latest.

I unlocked the front door nervously, fear building up behind my eyes and nose. Tears were already threatening to escape. Seeing the look on my face, she immediately assured me that my grandparents were fine. I am very close to my granny and granddad. She then sat me down to tell me that Gus, our guinea-pig, was gone.

We got Gus, or Gustav, five years ago. I was in my first year of university, my brother was finding it rough being a teenager minus a father. He wanted a pet and my mum agreed that he could have a small one. And so came Gus.

I didn’t really take to him for a while. I’m not a big animal person but his wee personality won me over. He loved music and would squeak and leap about to songs he liked. Anything with a heavy bass beat, however, drove him to burrow into his hay. He became my companion as I am the one at home the most. I would chat away to him, practice my presentations to him, even turning my laptop towards his cage so he could see my powerpoint.

Because we’ve never had a pet before, we didn’t expect it to be so sad when he was gone. He was getting old and we had given him a life full of love and spoilt him rotten. 

He was put own early on Friday morning and, stuck in a workshop, I had no knowledge of him even being sick. Mum considered contacting Best Friend and telling him to look after me but then decided against it. She wanted me to enjoy my time with the girls that night.

Then came the sad news that our past minister’s wife had also passed away. While we aren’t particularly fond of our last minister, seeing how he ignored us after my dad walked out and turned the church against us when divorce was mentioned, his wife was a big part of my teenage years. She taught me how to knit, how to sew, how to do things like make trifle for hundreds of people and arrange flowers as centrepieces. She was practical and motherly in that country farmyard kind of way.

My heart feels full.  My lack of sleep since on the medication isn’t helping matters. I just feel so sad and helpless. Best Friend is continuing to amaze me with his support, understanding why I’m foregoing tomorrow’s meeting to go to the funeral.  With so much happening this week in the run up to our big conference, I’ll be kept busy at least. In the meantime, I’m just clinging on to my faith.

“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.

I have confidence in confidence alone…

Published February 4, 2013 by crazyinpink

 

Once upon a time, I was convinced that it was my calling in life to teach.  This started in school, after the time I was convinced that I would be a journalist.  I loved writing and reading and had a very inspirational GCSE English teacher.  When I progressed to A Level, I had a younger, trendier teacher who was a waste of space.  She was by far more interested in her love life than in imparting wisdom. Our lessons were hugely dictated by what was happening to her personally. One week we’d be studying love poetry, analysing the relationships in Wuthering Heights and the next, after a break-up, we’d be looking at poems about death and questioning the notion of love in King Lear. Regardless, I still maintained my dream of being an English teacher.

I went to uni to study English and History as I thought the two subjects would offer twice the experience and I’d always had a soft spot for history. My A level results were slightly disappointing as English was my worst, earning a B. Still, I ploughed on with my ‘five year plan’ to finish a degree, do a PCGE (teacher training) and start working as a substitute teacher until I could get a job. This continued for two years of my degree until, after a semester of living hell in my Creative Writing class, I began to see sense. English in first year had been horrible, reading a book a week (usually a very boring one) and expected to understand complex -isms which had never been fully explained. I did well, gaining marks worthy of a 2:1. On the other hand, my first year of History was a revelation. I got to choose what topics I wanted to study from a range of first year courses. First semester had been fascinating but the second had awakened the historian in me. My performance in that class won me a prize at the end of my first year and a glowing reputation among the staff.

I started my second year with optimism, knowing that I could now choose what English modules I wanted. I went with one on language and power, one on medieval literature and creative writing. While my marks remained the same, my heart wasn’t in it. I rarely did all of the preparation required and would only read the things I knew I was going to write an essay on. I made more of an effort in creative writing but it quickly became clear that my tutor only appreciated sinister fiction that involved mutilation and, preferably, the death of several children. She told me that the only way I could be a writer was if I went into ‘chick lit’, in a very condescending tone. That semester also featured my collapse and subsequent adjustment to life with chronic pain, something which was extremely challenging. I think it was this that made me stop and take stock of what I was doing.

I realised that I attended my English classes out of duty more than anything else. The passion had long gone and only mild, wavering interest remained. Whereas in History, I was steadily becoming something of a teacher’s pet. I worked hard because every new thing I learnt seemed wonderful and inspiring. I looked forward to my classes and was eager to answer questions or engage in debate. My reputation was soon heightened and I realised that I really wanted to be as good as people believed me to be. Consequently, my average marks in English were eclipsed by those in History. I had to leave my old dream behind me, there was no point continuing in something which I no longer held in any esteem.

Making the decision to switch my degree to single History was difficult. It meant staying an extra semester at uni to complete the requirements but it was something I knew I had to do. The following year was confusing to everyone as I simultaneously attended second and third year classes. My new second year classmates, a year younger, had no idea who I was or where I had come from.  I later discovered that they assumed I had failed a year and had to re-take it. It didn’t matter much to me, I had few real friends in History. Most of my buddies I had met at uni studied other subjects and we’d bonded over the most bizarre coincidences.

For example, I met one friend Bella at a music society Halloween film screening of The Omen. I hate scary movies and had only gone because I fancied the conductor of the university choir at the time and he’d invited me. I went as a pirate wench and, not being a music student, knew nobody so started a random conversation with another pirate wench who seemed similarly lonely. She turned out to be studying for a Masters in English. Over five years later, we’re still very good friends. 

Anyway, I completed my odd year of being in two year groups and then progressed to my dissertation. Because I had mixed things up, I did mine in Autumn while everyone else did theirs in Spring. Finishing my degree in January meant I had the opportunity to work full time for six months before graduating with a scholarship for a Masters, something I definitely wouldn’t have earned had I stuck with English.

I sometimes think about what would have happened had I not changed my degree. A friend of mine is currently studying for her teaching qualification, not out of any real passion herself, more to appease her parents. The pace and intensity of the course seems like it would never have been compatible with my health. I consider myself very fortunate to have realised in time and chosen a different route.  I’m very glad I had the confidence to change things since now, looking back, it was definitely the right choice.

Get well cards, too much chocolate and male strippers

Published January 29, 2013 by crazyinpink

I’ve officially been recovering from my operation and resting. Unofficially, I’ve been watching a lot of Sex and the City and eating chocolate.

The first week I could barely do anything for myself. My mum, officially awesome, took some time off from work to help me out for the first few days then worked half days so she could be here in the afternoon.

She went back to work last week and I had to fend for myself. My meals were all pre-prepared (seriously, how awesome my mum is), I was now able to run a bath by myself and potter around the place.

Here are some things I have learned during my recovery:

1) Daytime tv is both awful and incredible. I became ridiculously addicted to a show about a priest who solves crime in 1940s England. It was so bad and cheesy, I absolutely loved it! I even tweeted about it one day and ended up having a weird conversation with one of the actors. Which I loved, obviously.

2) Get Well cards are so sweet. Especially when Best Friend, a boy and therefore genetically rubbish at card-giving, sends one in his atrocious handwriting having facebooked my brother to find out what my address is.

3) I have eaten more grapes during the past three weeks than all of 2012.

4) Trashy magazines are perfect reading for daily salt baths.

5) People who visit will bring you the weirdest assortment of gifts ever. In total I’ve received 5 bunches of grapes, 6 large bars of chocolate, a box of chocolates, magazines, a body polisher, a bunch of flowers, a decorative pillow, a two-handled mug, a bag of personalised coffee, a batch of homemade cookies, a Disney Princess egg and Stuart Little on dvd.

6) I love the people who visit. It’s been tricky since we had a bout of snow which screwed up traffic and particularly caused problems since I live at the top of a hill. But people from church have been very good coming to visit and some of my friends have popped over to see how I am. My Toyboy was nice enough to help me eat my chocolate while watching the show about the priest and looking up endometriosis on my new laptop. Two friends from uni, scuppered a week ago by the weather, finally made it up on Sunday and we ate a lot of cake and analysed the many philosophical themes in the movie Magic Mike.

7) I am in danger of getting far too involved in Sex and the City. I got the boxset for Christmas and, although I’ve seen them all before, I am now finding myself yelling at Carrie on a frequent basis.

8) A guy who started pursuing me before Christmas has dropped off the face of the earth. After bumping into him at graduation, he then started commenting on facebook and kept sending me messages until we swapped numbers. Then relentless texting followed. Then he asked me out for coffee. Three times he cancelled our plans at the last minute and the last time didn’t even bother to reschedule. He hasn’t been in touch since before I went into hospital. So not worth it.

9) A friend has really disappointed me…but that’s a whole other story for another time.

10) I’ve been busy tapping away at my keyboard lately, telling my endo story to others and hopefully appearing on other blogs. In my role as the face of chronic pain, I’ve also been asked to be interviewed for a broadcast series on chronic pain sufferers and their experiences! I don’t know many details at the mo, but it’s really quite exciting to be involved raising awareness!!

The Surgery Saga

Published January 22, 2013 by crazyinpink

Okay, saga is perhaps too dramatic but I do want to talk about my recent operation.
I went into hospital on the 9th January for all my prep (injections, drips, yucky stuff that clears out your bowel) and went to theatre the next afternoon for ‘radical excision of endometriosis’.

The op was a success, I am very pleased to say! That night, still under the influence of morphine, I had (or rather my mother had asked someone) been told that the surgery went as planned but until my doctor came, I had no more details. Happy enough that nothing had gone wrong and they had obviously done what they had intended, I settled down for the night in my surgical stockings with random things around my legs that inflated alternately and my many drips and oxygen.

Two hours later, I was woken up by a nurse who had to take my blood pressure, etc. She noticed that my pelvic drain wasn’t working properly. My catheter seemed to be working fine but hardly anything was coming through the much thicker tube coming out of me. She bustled off to find a new container for the end of the tube and clamped it so she could change them around. Once she had the new container in place, she warned me that I might feel a ‘tug’ when she unclamped and the suction started working. The ‘tug’ was without a doubt, the worst pain I have ever felt. I wasn’t even totally aware of where the drain was coming from until then but it was inserted in one of my wounds, inches below my belly button. I instantly started crying with the pain. The nurse, sympathetic, told me it was a sign that it was working properly and held up the new container to show me the amount of blood that was already pouring into it. Better out than in. After an hour, she gave me some tramadol to help with the pain. Tramadol is good but as I am on it daily, it didn’t even touch this excruciating pain in my pelvis. A few hours later, I started throwing up with the pain, something which has never happened to me before. After that, I got an injection for the sickness and IV paracetamol. Again, it didn’t even touch the pain. By the time a doctor appeared in the morning, I hadn’t slept and the pain was still as intense as it had been at first. I was hoping I would pass out from it so I wouldn’t have to feel it anymore. When the doctor came to check on me, I instantly begged to have the drain removed. He noted how distressed I was and asked a nurse to remove it asap. Around an hour or so later, the nurses clamped the drain. I felt instant relief. It was another 15 minutes before they actually took it out but as soon as the suction stopped, the pain vanished. Having it removed wasn’t a picnic but I was just so glad it was being removed, I didn’t even care. I watched as the nurse gently pulled out over 6 inches of tube covered in blood.

By the time my consultant came to see me that afternoon, I was a different person. I was washed, changed out of my gown into pyjamas and although I still had my catheter in, I felt amazing compared to the night before. He told me the details of the operation.
More endometriosis had grown since my last lap in July. Back then, he had found it on the outside of my uterus, vagina and lining the pelvic wall. This time, it had spread to both sides of the vagina, both sides of the rectum, along the back of the pelvic wall and onto my bowel. He showed me roughly how much they had cut out – around the size of a side plate. There was a small amount on my bowel that was in too dangerous a position to try to cut out so he had left it alone. Answering my questions about this remaining bit, he said that it was miniscule compared to the amount he cut out, only about 1% of the entire diseased tissue. He warned that because he had to cut quite deeply into good tissue, especially around the pelvic wall, my insides were raw and would take a few months to heal. I might not feel the benefits of the removal until they all heal completely but he was very confident that I would see a massive reduction in my symptoms.

As he did in July, he said well done and squeezed my knee. Technically, it should have been the other way around…I just slept there while he did the complex surgery but I knew what he meant. Along with practically every other doctor I’ve seen, he had argued with me that I couldn’t possibly have endometriosis and only agreed to do a laparoscopy because I insisted and fought him to get it. I was right all along. No one knows my body as well as I do and while I might not be a doctor or a specialist, I knew that what I was going through wasn’t normal. I knew it wasn’t in my head though countless people insisted it must be.

The surgery itself wasn’t really a saga. But my journey to get here was. If I accepted the doctors and everyone else when they told me there was nothing wrong with me, I would never have been given a positive diagnosis. I would be on anti-depressants for this phantom pain that they thought I was making up. I would still be in pain from the aggressive disease that would still be inside me.

But I’m not. Now nobody can say it’s all in my head. I have proof that I was so riddled with a disease that it grew so aggressively even within six months. The war might not be over but I’ve won this battle. And now I’m recovering in relief.