Archive for the ‘Sick and tired of being sick and tired’ Category
One year later
Tuesday, 23rd March, 2010It’s bad enough wanting to write but coming home from work day after day brain dead, it’s really frustrating to actually try to log in and find there are major server issues preventing access to the site. So this is long overdue but it’s important to me to post it anyway.
It occurred to me the other day that it had been exactly a year since my laparoscopic surgery to remove endometriosis.
The past year could not have been more different from the three years that preceded it. I have been able to go to the office and sit at my desk every day, I have travelled to 8 countries, I have socialised and partied, I even started going to the gym — all without feeling like I was being tortured with a knife lodged in my spine. I am not completely pain-free, I have moments of dreaded stabbiness in my back or abdomen, but so far they are moments — they pass and I come out the other side, grateful. Especially when I recall the before, when I was curled up in a ball of tears for what felt like weeks on end. When the pain of sciatica was etched on my face. People who have rarely seen me since that time invariably comment on the change in my face.
There was a moment, during a levada walk down a mountain in Madeira, that I wondered aloud when I became this gym-going, snorkelling person who takes walking tours around cities and trots down the side of a mountain in the rain.
I should say that it isn’t just the surgery that has made all the difference — it’s my determination to continue taking the Pill continuously. I’m sure it isn’t an entirely good idea. But it enables me to live my life and keep my job, which wouldn’t last long if I stayed in bed for at least one week a month. Losing the previous job that enabled me to work from home every day could’ve been a disaster.
Having encountered a string of doctors just as useless as most when it comes to recognising endometriosis I will be forever thankful for the resources out on there on the web that provide sufferers with that “a-ha” moment when it all falls into place.
Endo Resolved (http://www.endo-resolved.com) is an invaluable resource. The symptoms page lays out endometriosis symptoms in relation to the location of the disease in the body. It clearly indicated to me that I had reproductive area and gastrointestinal symptoms and had sciatic endometriosis, so it was no surprise when my hospital discharge report said adhesions were removed from my pelvic cavity, uterosacral ligaments, and (the wonderfully-named) Pouch of Douglas. The diet page is a good starting point for the whole endometriosis diet odyssey, listing foods to avoid, beneficial foods, and recommended vitamin/mineral supplemens, as well as links to other articles.
The Endometriosis UK charity (http://www.endometriosis-uk.org) is great for its reassurance that you are not a melodramatic baby – there are other women out there (sadly too many) who completely understand what you’re going through. (As is the EndoStories section at http://www.endometriosis.org.uk) The message board has a “laparoscopy tips” thread that is a must-read for consulting with doctors and knowing what to expect before and after surgery.
Laparoscopy is often done as a one-day outpatient procedure, which my diagnostic surgery was, but for the second surgery to remove the adhesions, I was admitted the day before for blood tests, etc. and to take laxatives to completely clear the bowel (I was sent home the day after the surgery). I was sent a list of approved foods for a low-residue diet for the three days before. All of that makes the stomach feel particularly fragile after surgery, so the website of the The Endometriosis and Fertility Clinic (http://www.endometriosis.co.uk) has a useful page on “Recovering Digestive Health after Surgery for Endometriosis”. (The clinic is run by Dian Shepperson Mills, co-author of the book Endometriosis: a key to healing and fertility through nutrition).
It’s also worth reviewing the Wikipedia page on endometriosis, which has endoscopic photos showing what adhesions actually look like, so you can visualise the source of all that pain.
My focus now is on the challenge of sticking to the endometriosis diet — gluten-free, soya-free, dairy-free, meat-free…essentially vegan — to keep new adhesion growth at bay and minimise the irritable bowel (IBS) symptoms. It means a constant focus on what you are and are not putting in your body, whether at home eating out, or travelling. Along with the occasional recipes, I’m thinking about adding restaurant and product reviews here, but given my erratic posting I can’t promise anything…
Certain publications should carry a blood pressure warning
Friday, 26th February, 2010I usually avoid reading anything in the “Torygraph” because it’s likely to put me in a bad mood (that applies double to The Daily Mail, known in journalistic circles as “The Daily Fascist“). But occasionally something will catch my attention on Google News and without thinking I’ll click on the link.
Case in point: There was a study out today about the effectiveness of group cognitive behavioural therapy in dealing with chronic back pain. The Telegraph’s lead?
Back pain may be all in the mind, according to researchers who recommend sufferers should seek psychological counselling.
Funny that, because the Independent article on the subject says this:
Zara Hansen, a member the research team from the University of Warwick said: “We are not saying back pain is all in the mind. It is very much a physical problem but the way you understand it affects the way you manage it.
Having suffered chronic back pain that became increasingly debilitating with my periods over the years and escalated to the point of sciatica, I’ve had my share of doctors and nurses suggest there’s nothing wrong with me except my desk job, as if I had nothing better to do with my time than subject myself to humiliation.
When laparascopic surgery a year ago removed bleeding endometriosis from my uterosacral ligaments (the sacrum being the base of the spine) and relieved the pain, I wanted to go back to those so-called medical professionals and give them what for. I often wonder how many other women have needlessly been condescendingly turned away with another pack of worthless paracetemol because their GPs and physiotherapists and orthopaedic surgeons haven’t done their research.
In the last year I’ve been able to work and travel like a normal person and — almost — forget what it’s like to be brought to tears trying to walk across my tiny living room. But last night on the Tube heading back from work I was suddenly struck with pain, not so much in the lower back but in the middle of my spine. It was there again as I sat at my desk this afternoon, and tonight as I stepped out of the building and walked down the street, shoots of pain from my pelvis down my leg caught my breath with each step and I hobbled towards the station, home feeling like a million miles away. Was that in my mind, hacks?
Bending the rules
Tuesday, 30th December, 2008The scent of warm cinnamony dough wafts through the cold air, taunting and enticing me on what feels like a daily basis. In the past the arrival of a Cinnabon in my neighbourhood would’ve been met with unrestrained glee and the piling on of calories, but in the wheat-free world of an endometriosis sufferer, it almost feels like a cruel punishment. The irony that on my last trip to Toronto I was rhapsodic over the ready availability of freshly baked cinnamon rolls from the ubiquitious Tim Hortons is not lost on me. Be careful what you wish for…
I’ve been sneaking in exceptions to the wheat-free directive lately — I haven’t had the time or energy or inclination to prepare lunches to take into work — and I’ve been paying the price with stabby abdominal pains. But with each craving for stuffed-crust pepperoni pizza (a craving I’ve so far held off indulging) I’m toying with the idea of taking a temporary break from the no-wheat/meat/dairy diet.
I signed the forms today to get on the waiting list for a laser laparoscopy to remove the endometriosis. So the idea of stuffing myself silly with pizza and pasta and cheeses of every variety not long before the big day holds some appeal. Because after it is removed I don’t exactly want to encourage its return.
I’m caught up in a mixture of anticipation and trepidation at the idea of an another surgery — that it’ll work, that it won’t, that the pain of recovery will be worse than last year’s diagnostic laparoscopy. But after more than a year of putting off the follow-up to that diagnosis, I am ready for the next phase.
Regression
Monday, 14th July, 2008I feel such a huge sense of regression. I didn’t even realize it until those words came into my mind, unbidden, as I lay here working my way through my neglected Feedreader.
I was doing so well — going into the office every day, ratcheting up my productivity, having something of a social life, coming up with new vegan dishes to cook.
Then one day it all came apart.
The pain has inexorably returned, curving violently around the base of my spine to my hip bone, crawling down my leg to pull at the nerves in my toes. I lose my will get out of bed, when it’s like this. If it wasn’t for my laptop and a broadband connection, I’d have been unemployed a long time ago. Instead I’m just in exile.
I haven’t wanted to go out, talk to people, even on those days when it’s not so bad. It’s even worse when I do want to. This weekend an old friend was having a party while I lay on my mother’s settee whining like a child about the pain shooting through the right side of my body. Sitting in my fridge is a bottle of white wine I’d bought to take with me. But as the day drew on and my ability to put weight on my right foot diminished, I knew it was destined for a different story, for a night at home alone with TV and takeaway.
It’s about the only thing in my fridge right now, aside from a red pepper and some long out-of-date olive oil spread. I haven’t had the ability or the inclination to go to the supermarket and I was living on Oatibix till I ran out of oat milk. I avoided my dilemma by spending the weekend at my mother’s, where food was brought to my permanent location on the settee, but I’m home now, and feeling nauseous from a day subsisting on leftover cinema sweet popcorn and a bumper bag of Swizzels Matlow “assortment of children’s favourite sweets”. (Fizzers, oh how I’ve missed you.)
It feels so much like a defeat this time. I don’t want to deal with people because I don’t want to deal with the “how are you question” after disappearing for a couple of weeks, but I don’t want to say “I’m fine” and move on because I can’t block out the pain enough to have normal social interaction.
Last night I found a temporary solution — after a long soak in a bath so hot beads of sweat poured down my reddened skin, there was a marginal improvement and I limped off to the cinema with The Bookworm to see The Edge of Love. Watching a film in the dark doesn’t require any effort of conversation on my part and I can just be, there in the dark with a whole other story unfolding before my eyes, captivating my attention.
Of course, sitting for over two hours is likely part of the reason for the stabbing ache overwhelming me tonight. I’d down a painkiller or two if I had some food to take them with.
Today Has Been Okay
Sunday, 30th March, 2008An hour lost. A stretch of blue sky through the window. A bluebottle fly buzzing madly in circles. An unnecessary scarf stuffed in a handbag. A passerby with a coat slung over the arm. A patch of daffodils in a lush garden square. The warmth of the sun. At last.
I’ve tried not to whine about the weather because it’s dull and cliche and a fallback for when I don’t know what else to say and I do it all the time, but the endless winter has gradually been getting to me. Sleet over Easter and heavy rain yesterday afternoon had me skulking around my freezing flat wondering when it’ll ever be spring.
I need it to be spring.
I need to walk in parks, along the river, over to Little Venice, through Columbia Road flower market. I need to warm this chill out of my bones. I need to see puffy clouds floating in a bright blue sky, because, for now at least, I feel better — physically and emotionally better — than I have for months. I need to feel alive.
So today was like a gift — the sunshine warm on my back, blossoms bursting prettily on the trees, the forecast rain never materialising. I always feel slightly out of place walking around Notting Hill on a Sunday — I’m usually the only person not jogging or holding a dog lead (or both). I smiled to myself as I walked down the street, feeling silly, giddy almost at the unexpected glimpse of spring. I’m under no illusions — April Showers are fast approaching, but it gave me something to savour.
One of the songs in rotation on my (Grey’s Anatomy) playlists at the moment is Today Has Been Okay by Emiliana Torrini. Perfectly appropriate.
Consider this a very belated Photo Friday.
I’m such a slacker, practically every other post is a variation of “I’m back”… yeah so I’m exaggerating…
Monday, 10th March, 2008Things I did during my unintended hiatus from blogland:
- Watched Gone With the Wind several times (the length of that film alone accounts for most of it
)
- Started watching Grey’s Anatomy
- Obsessively followed U.S. election coverage
- Watched more Grey’s Anatomy
- Got so depressed by Hillary’s results that I stopped obsessively following U.S. election coverage
- Became addicted to Grey’s Anatomy
- Went to my mother’s for an America’s Next Top Model marathon to clear some episodes off her DVR… I don’t even live there but I’m using up close to half the space… oops…
- Went to see Rachael Sage at 12 Bar; the poor girl had the flu so the show turned into a listening party for her upcoming CD
- Finally started uploading photos to Flickr from my trip to Spain and Gibraltar last year
- Spent many an hour curled in the foetal position cursing back pain, leg pain, pelvic pain — the whole being female thing
- Finally caved and bought this fab pair of shoes I’ve been lusting after for a year — at 50% off, yay!
They were a present to myself for a good performance review and my annual pay rise; plus I used money I’ve been accumulating from cashback and survey Websites so they were basically free, yay!
- Although, after I’d bought the shoes I saw my bank statement and nearly dropped dead on the spot at the sight of all that red, so… they will be my last present to myself for a while…
I’m so annoyed at myself for not blogging when I have plenty of things I want to write about, but endometriosis has been kicking my backside for weeks and it’s taking almost all of my mental energy to try and work when all I want to do is curl up in the foetal position with an endless supply of chocolate, so by the time I finish work all I can do is lay in front of the laptop watching Grey’s Anatomy (while playing Bejeweled. Yes, still).
I watched the first episode on video on demand to finally see what Hillary keeps naming her favourite TV programme, fell instantly in love, devoured the rest of Series 1, then watched Series 2, 3, and 4 online. I’m almost wishing I hadn’t bought the shoes so I could buy the DVD box sets instead. I am addicted. “Seriously.”
Pass the hand cream
Monday, 28th January, 2008Several times over the last week I’ve opened a blank post with the intention of sharing the next installment of my Morocco adventure. Even though last month is ancient history in blog-time, I still have so much to say — I haven’t even gone into the incredible experience of our overnight stay in the desert. But because there is so much to say, the task seems to stretch out endlessly before me and require a chunk of time and effort I cannot muster — particularly when work is busy and I’m writing all day; by the evening I just want to give my brain a rest and read other people’s blogs or obliterate my high score on Bejeweled.
But today I claim a different excuse, and excuse me while I get personal here. [Don't you just love the English language? Excuse. Excuse me...I digress.] Today has been particularly unproductive because it’s been characterized by a battle of wills between my desire to stay curled up with my blanket and my laptop and get things done and the urgency to pee again and again. And again.
I’ve washed my hands so many times today the skin is flaking off my fingers (which gives the lie to the claims of my “moisturising” coconut and almond handwash).
And I’m in a vicious cycle of drinking more because I’m worried about getting dehydrated, which…you get the idea.
One of the purely annoying things I’m finding with endometriosis is that so many of the symptoms overlap with other things. The frequent trips to the toilet, the lower abdominal pain, the lower back pain are all signs of endo, but they’re also signs of a kidney infection. The difference being that I have those pains all the time and the peeing seems to have become a recurring issue — other days I don’t go at all…also a symptom of endo.
Of course, posting this will attract all kinds of random search engine results, so I will just point my visiting Dr. Google patients to Endo Resolved, which I found invaluable in connecting the dots and knowing what to bring up with my doctors.
Now that I’ve given you all TMI, I have to go relieve myself…again.
The politics of “How are you”
Friday, 23rd November, 2007“How are you?” has become a question fraught with difficulty.
Wow, that sounds melodramatic.
Seriously though, in the split second you get between being asked that question and being expected to give a response you have to gauge whether the person is asking to be polite or whether they really want to (or should) know. My standard answer has usually been some variation of “okay”, “fine”, or “not too bad”, because I don’t want to be one of those people who’s always whining on about themselves — who wants to talk to them? — and I’m basically fed up of talking about it anyway. I will however whine to my friends because they put up with me and they really do want to know (I hope). I recently realised an acquaintance had become a friend when she responded to my “okay” with “don’t say you’re okay if you’re not.”
My real difficulty is with work colleagues. On the phone with my editor the other day about an article I’m working on, he asked the dreaded question and I misjudged it as the standard kind of preface to the actual conversation. When I said “okay”, he brightly responded with an “ah, that’s good,” as if I really meant it. I’d spoken to him when I returned to work after the laparoscopy about the pain and the sore stitches and blah blah, so my “okay” to him indicated an improvement, whereas to me it was a quick way of skipping over the back and leg aches, the pelvic pain, the haze of exhaustion, to get to the point of the call.
I do that all the time — it’s become a reflex — but I’ve realized that perhaps for the sake of my job I should actually answer the question. If I keep telling colleagues I’m fine, then I worry that my bad, less than productive days become laziness rather than illness.
I’ve avoided some of the awkwardness simply by the fact that most of us work from home at least part time. I’ve been trying to show up at the office as a way to combat my tiredness — I can’t doze off if I’m at my desk — but then I’m confronted with people all “long time no see; how are you?” They don’t need to know the details of my innards, but if I was “okay” I would be in the office every day like I used to be. I suppose it bothers me that they think I don’t come in because I can’t be bothered, not because most days my body hurts just thinking about dragging my laptop onto the Underground.
I’ve also found telling the truth pays off in unexpected ways. Yesterday I had an envelope arrive in the post containing a card and a bar of chocolate from a couple I know. I guess my love of chocolate is more well-known than I realised. It was a great little pick-me-up.
Dragged off the wagon by a piece of pitta
Wednesday, 14th November, 2007I didn’t want to write yet another food post already (I have so many other things to talk about, honest. Like clothes and shoes and my sudden, absurdly unrealistic obsession with designer bags) but then I had a now-routine “crisis” over what to do for dinner.
Since the surgery, almost three weeks ago already, I’ve been tired constantly, and lazing around my mother’s place — the first time I’ve ever taken holiday time from work and not gone on holiday — has completely messed up my internal clock. I can’t seem to get to sleep before 4am, so I wake up late for work with a start and a headache and the day goes downhill from there.
I’ve spent most of today in a state of semi-consciousness, and only now am I starting to feel alert. Needless to say cooking dinner was just not going to happen tonight, despite the veggies and pulses and tins of fish sitting in my kitchen.
In the past I would invariably skulk into McDonald’s or KFC on a day like today, but I’ve been doing well lately at staying away from the wheat, dairy, and meat so I decided to go to a Lebanese restaurant for takeaway. As much as I love Middle Eastern and Indian food, I fear I might have to forgo it altogether, because the bread is my downfall. I scoured the menu for vegetarian options, and then ruled out the wraps, and settled on a baked aubergine-chick pea-tomato and rice dish I’ve been wanting to try. I left feeling good that I’d ticked all the right boxes and the portion was big enough for leftovers tomorrow… then I got home and opened the bag to find the generous people had literally given me a whole bag of pitta bread — five of them.
I have absolutely no self-control when it comes to warm pitta, especially the proper stuff you get in restaurants — not the bland imitations you find in the supermarket. And so I ate one. And now the other four are daring me to throw them away, knowing full well it would break my heart.
Evil, but oh so delicious
On the way home from the restaurant, I picked up some fresh fruit salad and one of those cute mini bottles of Chardonnay (why I didn’t just buy a regular size bottle for a few quid more I don’t know). As a rule I never buy fruit from a supermarket because it’s expensive and force-ripened, and I’m increasingly devoted to the fruit and vegetable stalls on Portobello market. But I was craving some mango for dessert and my only option was one of those measly packs of tropical fruit pieces for £2-something. I could buy two whole mangoes, two melons, and a couple of kiwi fruit on the market for that. And they would be soft and sweet and juicy. As it was, when I bit into a piece of the melon it was crunchy.
M and I are always laughing that people can be so clueless about what constitutes fresh fruit as opposed to not even ripe yet that as soon as mangoes, melons, papaya, etc. actually turn soft the shops and stalls put them on sale because people think they’re rotten. A couple of weeks ago at a market stall I was waiting behind a woman who was picking up each of the mangoes in the box and putting them back, and I was starting to feel disappointed, thinking they must all be rock hard. When she walked away I picked a few up and they were all perfectly soft, and turned out to be delicious. I’ve seen unripe mangoes for £1.50 each, and bought larger ripe ones at 3 for £1. M said she was at a local fruit and veg stall the other day and the trader was practically giving the fruit away because it was soft. He told her a woman had actually brought the fruit back and complained that it was not hard and was therefore going bad. In fact, I shouldn’t jest, because clueless shoppers = cheaper fruit for me!
Post-operative post
Wednesday, 31st October, 2007Well, it’s official. The doctors found a “moderate” amount of endometriosis.
I was expecting the post-operative pain from them cutting a hole in my abdomen and rooting around inside, but I wasn’t prepared for the sore throat. The anaesthetist spoke to me beforehand and explained I would be on a breathing tube and might have a sore throat for 3 or 4 hours afterward… I was croaking like a frog until sometime Monday. Coughing isn’t exactly conducive to the healing process.
The first night was interminable — after about 3am I was just watching the clock in a haze of pain and counting the hours until The Bookworm would arrive to keep me company and bring me food. We sat around reading and watching DVDs… nothing too funny — laughing is just as bad as coughing… so by Saturday night I was exhausted and got plenty of sleep. I’ve mostly been sleeping through the pain since.
Braids drove me to M’s on Monday night; just the act of getting dressed did me in. At least I have good timing — while I’m here getting my meals cooked for me and drinks on demand she’s getting a DVR installed next week and I can’t wait to play with the new toy.
It’s a relief in a way to have an official diagnosis after having so much unexplained pain, although every time I consult Dr. Google or endometriosis.org.uk or something similar I have a minor freakout. Getting the diagnosis though is only the beginning.
