Sickies and Sick Days

So last Saturday I went to a Writing Conference in Newcastle. It was interesting, and I enjoyed myself, but I noticed not long after arriving that I had that itchy, sinus-y feeling behind my nose that usually means hayfever is about to hit me with it’s puffy-faced rhythm stick. This developed into a few sneezes and sniffs over the course of the afternoon, and by the final panel had morphed into a snot-fest so impressive that total strangers in my vicinity were forcing me to take their tissues. But I already had evening plans, which I staggered through (albeit with far more snivelling and considerably less tolerance than usual) and eventually made it, gratefully, to my bed. Here is where it became apparent that this was not hayfever, but a cold. By 5.30am, when I was in the shower attempting to steam the bastard out having had no sleep whatsoever, it became apparent that this was an absolute bitch of a cold.

This pissed me off for several reasons. 1. Being ill sucks. 2. The one thing my body can be relied upon to do well and reliably is sleep, and the cold had taken even this away. 3. I have a chronic disease, which I feel should give me some sort of free pass for minor illnesses. 3. Being genuinely ill on a weekend feels like the universe is giving you the finger.

And it’s this last point I want to talk about today. That labyrinth of guilt, judgement and defiance that is The Sick Day. Now I find that people tend to fall into one of three camps when it comes to Sick Days:

  1. The person who calls in sick at least once a month for various nebulous reasons relating to headaches, dizziness and other intangible problems. Simultaneously resented and admired by colleagues, who sit around the office giving each other significant side-eye while saying things like, ‘it must have come on so sudden because Janet seemed fine yesterday…’ and wishing they’d made a bigger deal out of that sniffle they had last week.
  2. The person who will not call in sick even if they are literally dying, and feels the need to point this out at any given opportunity, whilst coughing into their tea round.
  3. The person who calls in sick only when they feel genuinely lousy, sits at home riddled with guilt all day and spends the next week apologising profusely to everyone they work with.

During school I did my damnedest to be a Type 1, and was usually thwarted by my mother’s cast-iron insistence that I should ‘see how [I] feel when [I] get there’. Real illnesses were few and far between, and padded with a gradual three-day build up to an Oscar-worthy performance of coughing and spluttering that would have put Meryl Streep to shame, but rarely convinced my mum.

These days, I’m ashamed to say, I’ve become a Type 3. Having been diagnosed with an actual disease, I’m constantly telling myself that I shouldn’t use the sick day now – because I might need it later this month. It’s a stupid attitude. The equivalent of saving your favourite part of a huge meal until the last mouthful, only to be so full you can’t actually eat it. Last year during a flare-up of my ulcerative colitis, I told work I only needed the mornings – when my colitis is at its worst – at home, and spent more than one afternoon trapped in the staff bathroom, pretty sure that getting that email sent out could have waited. But what if there had been a day where I really couldn’t leave the house – as opposed to just managing the 20 minute walk to work – and I’d already taken a sick day that week?

That smart attitude would be: well bloody take it anyway.

But it’s so hard to feel that way. During the year prior to my diagnosis, when my symptoms came and went in spectacularly unpredictable swings, I was working in a café and knew that my calling in sick would mean one of my colleagues’ day off was ruined by The Phone Call. So I didn’t do it. Even now I have an office job, and nobody directly bears the brunt of my sick day, the hangover of that guilt still plagues a Sick Day. Even the Sick Days when I’ve been unable to keep any food down, didn’t have the energy to walk to the corner shop and have to physically grit my teeth through the pain in my stomach, I felt guilty. How stupid is that?

So this week, on Monday morning, I called in sick. To be honest, I was feeling much better than I had on Sunday and probably could have staggered through the day if I’d needed to. But that’s not the point. Just because you can force yourself onwards, it doesn’t always mean you should. Sometimes, you need to power through the guilt, and take that bloody Sick Day. Sometimes you need it.

That said, I still felt guilty enough to do an extra day’s work later in the week, to make up for the heinous cheek of being ill. Baby steps.

(In a similar vein, this fantastic The Pool article sings the praises of occasionally having a skive – and I agree with every word of that, too.)

Side Effects Include…

Currently, I am on a lot of medication. Five different kinds, actually, totalling fifteen tablets a day. These medications are obviously all very important and all do various different jobs, but they also – as I’m sure you can imagine – come with a thrilling array of side effects. So here is a list of all (well, most) of the different meds I’ve been on over the last eighteen months, and their motley collection of side effects.

For my Ulcerative Colitis:

  • Prednisolone: so this is a steroid, which, for lack of a higher word count, is an anti-inflammatory. It’s prescribed during flare-ups to calm your insides right down, and for me at least is the only thing discovered so far that can do a thorough job – which is frustrating, because it’s not something you should be on long-term. This is because of its many, MANY listed side effects, the big one is that it affects your bone strength and – if taken for long enough – can lead to osteoporosis. I am not currently on steroids, as I spent most of 2016 downing several tablets a day with a token glass of milk, and this makes my nurse extremely frowny. In the shorter term, steroids also lead to a huge increase in appetite (seriously, it’s unreal – basically if something isn’t moving, you’ll eat it) and the no-seriously-this-is-actually-what-doctors-call-it ‘moonface’ chub. I’ve actually been weirdly fortunate with a lack of moonface, though on my highest dose did also get very dry skin and some quite spectacular mood swings.
  • Balsalazide: this is my highest dose of tablets (a whopping 9 per day), and I actually haven’t noticed any side effects at all. To be honest, I haven’t noticed any effects, either. This is supposed to keep my bowels chill after the steroids have done the hard part, but as previously mentioned this has not gone super well so far.
  • Azathioprine: Ulcerative colitis is actually an autoimmune disease – your own immune system attacks healthy tissue in your bowels, thinking it’s helping. (It’s not.) So azathioprine is an immunosuppressant, designed to lower your immune system and hopefully stop it beating on your (my) organs. This isn’t actually as scary as it sounds: it hasn’t meant I get ill more often, just that getting ill can be worse. Though so far I’ve only really noticed it taking me longer to get over a cold than it used to. That said, before I was put on azathioprine I was tested for all sorts of antibodies, and it turns out I’ve never had glandular fever (which, according to my doctor, is something most people in their twenties have actually had in some form, whether it was the didn’t-notice-it-just-seemed-like-a-bad-cold variety, or the literally-felt-like-I-was-dying-for-six-months kind). This probably means that there is a seriously sucky year in my future somewhere, but for right now just means that you’ll have to excuse me if I promptly leave any room containing a person who has glandular fever.

For my blood pressure:

  • Amlodopine: the newest addition to my medication roster, and actually the prompt for this whole blog post. Not because it has the worst side effects, but because they’re just so friggin irritating. Whilst it does seem to have brought my blood pressure down, and I would rather take these than beta-blockers (which were the alternative), amlodopine gives me old lady ankles. Now this may not sound like a big deal, but it is pretty damn disheartening to walk home from work and have the apparently extraordinary strenuousness of this activity lead to your ankles getting so hot, swollen and itchy as you try and stand in the kitchen to make tea, that you have to go and sit upside-down on the sofa with your legs in the air. It is annoying as hell to have freezing cold feet simultaneously with burning hot ankles that itch like you wouldn’t believe, and it is embarrassing to have the kind of fat, skin-stretched shiny ankles you have only ever seen on your grandma. I never even acknowledged that chubby ankles were a thing until I had them.

Generally:

  • The mini-pill: without getting into a contraception rant, I was put on this as a replacement for the combined pill (on which I’d never had any problems) when my blood pressure sky-rocketed, and it fucking sucks. Many women, I have been told, have a fabulous, meadow-frolicking, puppy-cuddling, sunshine-laden time on this pill. I, however, have been on my period for four months out of the last six. This one is going.
  • Vitamin tablets: hahahahaha LIKE THIS IS ACTUAL MEDICATION. No, to be fair, I take these every day in a dubious effort to try and make up for the nutrition my body isn’t always getting from food (see: buggered bowels). I particularly enjoy the expensive ones my mum gets from Holland and Barratt that taste like fossilised jelly babies, or those chewy ones that taste like regular jelly babies, but I’m poor so it’s Tesco’s best. If these have side effects, how could I possibly have noticed them in the (not literal) shitstorm caused by all of the above?

So there you are – one of the most depressing lists a 23 year old can write! But to be completely fair, I’ve generally done surprisingly well out of side effects. I’ve always been warned of the most prominent suspects before being put on the medication that causes it, and up until the ankles actually got away without many of them – or very mild versions. And, of course, many other people in the world experience many worse side effects at the cost of trying to make themselves ultimately better.

All I’m saying is please – look down, right now, and take a moment to appreciate your beautifully slender, normal-temperature ankles. You would miss them if they were gone.

“You look about twelve.”

This week we have another guest blogger, the wonderful Holly. Enjoy! 

If you haven’t gathered from the title, I am 24, I look young for my age and I HATE it.

Before I explain anything further I would like to rip off the metaphorical plaster, and address the fact that this will probably come across as nothing more than a long rant about something that is of no real relevance. And I also know that this insecurity of mine is no worse to live with than anyone else’s. We all have something we don’t like about ourselves, or a particular ‘feature’ that attracts comments from strangers or acquaintances. For some it’s comments about resting bitch face; for others it’s their uncovered tattoos or height. For me, it is how young I look. (I can hear you quietly sobbing already, before you ask, no there isn’t a crowdfunder you can donate to help my cause). For the most part, I do appreciate it is a good thing, and as countless cashiers, bus drivers and bouncers like to remind me, it is something I will probably be grateful for when I am older. But as a teen, the attention that came with looking younger than others my age was unbearable, and now as a twenty something year old, it’s just fucking annoying.

You may wonder why I am writing / complaining about my appearance on a women’s health blog with a backlog of interesting and well thought out posts about real health issues. And I have thought about that myself pretty much constantly through the drafting process. But I have stuck this out to the bitter end because, no matter how superficial an issue it may seem, how I look and how I perceive others to see me, has had a long lasting impact on my mental health and body image.

To give you an idea of what we’re dealing with here, I am 24 years old, 100 pounds and five foot and half an inch to be exact. I have brown, kind of blonde hair, pale skin and all of this hasn’t really changed since I was about 15 years old.

When I was younger my appearance never really bothered me. I’m lucky enough to have lived through a childhood where I didn’t worry about my looks, probably too busy playing with action men and sporting a bowl cut to care. But then again this was the only time in my life looking young wasn’t an issue, mainly because we all looked young and the vast majority of us had bowl cuts.

It wasn’t until puberty that I began to realise I looked a little different. Mostly because people didn’t mind telling me. From 15 onwards I have been told I look ‘like a baby’, I look ‘about 3’, ‘like 12’, ‘about 14’ (basically everything but in utero).  At school one well meaning friend genuinely turned to me in class and said, ’so…are all of your family like you?’ For the most part I take inconsiderate comments about my appearance as word vomit from people who mean no harm.

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But sometimes I find it hard to imagine how comments like these couldn’t be unkind. I have always gone by the rule of ‘if it’s not a compliment don’t say it’. Probably because I know myself that breaking past that invisible barrier can be dangerous.

At the age of 16, I began to really internalise all this, and dealt with it in the best way I knew how. I began to control my diet and restricting my calorie intake, by 17 I was in the full, not so glorious, throes of bulimia. I starved myself, I relied on coffee to function and when that didn’t work I binged and threw it all back up. I remember standing in mirrors for hours trying to make sense of what I saw. All I wanted was to disappear. Looking back now, it’s obvious that a huge part of all this was caused by comments like the ones I mentioned above. And while I maintain healthier eating habits now, I still find it hard to look at myself in the mirror and know  what I am looking at. It sounds so strange, but all of the times I have been told how I look  mean I can no longer really see what I actually look like – which can be a really scary at times.

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I have grown to accept myself overall. When I look in the mirror, I see myself at least, the 24 year old, cat enthusiast, red wine loving, Ru Paul super fan, Holly. The adult who cohabits with her boyfriend, pays bills and suffers from lower back pain and chronic anxiety (another time, for another post if I can muster the courage).

I feel like a 24 year old..because I am one. And while most of the time I live my life confident in my abilities, and perfectly happy with my life, all this can be shattered with an offhand comment. It’s then that I realise that everything I see in myself, is pretty much invisible to those people who aren’t aware of my age. Being an adult is fucking hard. And it can feel a lot harder when you are reminded that no one quite believes you are one.

And while this post got a little darker than I thought it would (sorry about that), counselling has helped me try and see some of the positives to my situation. Who knows, maybe I will appreciate it when I’m older.

Big problems, little problems, and hair problems

This week we have another corker from our Becky, discussing quite a different (yet seemingly interlinked) subject to her bowels…

I’ve lost count of how many times I’ve started, drafted, redrafted and thrown out this post. Because we’ve covered some very serious and life-altering topics on TOTM – depression, miscarriage, cancer, anxiety; I myself have written about my chronic bowel disease, and blood pressure so high it got me admitted to hospital. So I can’t help but feel a bit stupid when I try to write a blog post about my hair.

Yep, that’s right. Hair.

And what I’d like to set out at the beginning of this post, in an effort to communicate the way I feel about this and possibly at the expense of my credibility, is how weirdly bothered I am about hair. I reckon most people – but especially women – have one aspect of their appearance that matters to them more than the others. Maybe how good your makeup looks, or how slim this top makes you look, how stylish your outfit is or even just whether or not you’ve bothered to put contact lenses in. And for me, it’s my thoroughly unexceptional hair.

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That might come as a shock to anyone who knows me, as rarely does a product more advanced than conditioner make contact with my scalp, I didn’t even own a blow-dryer until I was 22 and I’m basically a patron of dry shampoo. But, surprising as it is, how my hair looks is pretty much a direct illustration of how I’m feeling about my own appearance. Recently cut, freshly washed and lightly curled = confident, cheerful Becky. I’ve always taken relatively good care of it, and always been too scared to do anything dramatic with it, because a mistaken cut or dye job would result in my being unable to leave the house until it was fixed. And I have always felt this way – the first time I watched Star Wars with my dad and brother, THE most pressing issue to my seven year old brain was whether or not I would at any point find out how long Princess Leia’s hair was (to my dad’s confusion and relief, this world-changing question was answered in Return of the Jedi).

So please bear all of that in mind, when I tell you that for the last three and a half years, my hair has been falling out.

I can tell you exactly when it started – summer 2013, whilst interrailing with my friends, in the shower of an Austrian hostel. Whilst rinsing the conditioner out of my hair, I ran my hand through it, and my hand came out coated in a layer of hair. I promptly freaked out, possibly burst into tears, and forced my two friends to listen to a day’s worth of whingeing, whilst sulkily considering their many efforts to comfort me. It was probably just the heat, they said – or I’d had my hair tied up too tightly. When this experience repeated itself every time I showered for the rest of the trip, it was probably because I hadn’t had a haircut for a few months and it needed a trim. When the problem still persisted several weeks later, my mum assured me that hair growth runs in cycles, and occasionally your body can skip a cycle – it had happened to her, but totally resolved itself after a few months. Every one of these suggestions was perfectly reasonable and perfectly possible – except it never stopped happening.

Fast forward to October 2015, when I was diagnosed with ulcerative colitis, and discovered that hair loss can be a side-effect of the disease. There’s some vague explanations online about vitamin/mineral deficiency, but I’ve never been able to find any concrete reasons or – and this is key – solutions for the problem.

Now don’t get me wrong, it’s not alopecia – my hair isn’t coming out in chunks, I’m unlikely to go completely bald and it does grow back. But it doesn’t grow back at anything like the rate it falls out, meaning the thickness of my hair has more than halved over the last few years. And you still wouldn’t look at me and think my hair was super-thin, but I know that it is. I know because these-days I have to pull at the strands of a braid to make them look thicker. I know because every single time I’m in the shower I pull out handfuls. I know because my carpet, pillow and all of my clothes are coated with a second long, brown layer. I know because hairdressers stare at the comb they’ve just pulled through my hair and ask me if this is normal. I know because the hairs that grow back – at my ripe old age of 23 – are grey.

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I’m sorry if this sounds defensive, but trust me, if you mention that your hair is falling out to someone you will inevitably get some sort of anecdote about how their hair used to fall out loads but then they started using Product X / stopped tying it up / stopped washing it / stopped dying it / stopped straightening it / just ignored it etc. and I’m afraid I am tired of hearing them. It’s been three and a half years – believe me, whatever suggestion has occurred to you in the last eighteen seconds, I have tried it. And more than one person – including, on one notably shite occasion, a GP – has listened to my ‘no trust me, it’s worse than that’ speech, looked at my head and said, “Still looks like you have plenty of hair to me.”

There have even been phases where I have almost been convinced, and have started looking at the clump of hair in my hand after a shower and wondered if this is normal – maybe it was always like this and I just didn’t pay attention? The link to my colitis diagnosis did, at least, put paid to that particular paranoia.

And I do, sadly, feel the need to apologise for writing arguably my most solemn, serious post on TOTM about my bloody hair. But with my colitis and my blood pressure, other people understand that they’re serious – that they’ve been medically proven and have made significant changes to my life. People, in my not insignificant experience, don’t tend to think that when you whinge about your hair falling out. And I do realise that – as I mentioned at the start of this post – this is not, really, a problem. This is not as serious as more or less everything else we have covered so far on TOTM – it’s not as serious as other things that are happening to me.

But for better or worse, rationally or irrationally, it upsets me more than any of my other medical issues because I am constantly being reminded of it. I only worry about my blood pressure when it’s checked – I worry about my colitis when I feel much more tired than I should, or wake up with stomach ache. But I worry about my hair falling out every time I have to pluck yet another strand from my t-shirt, or coat, or blanket, or pillow, or duvet, or boyfriend – which is probably around every 30 seconds.

So to wrap things up, I’m sorry about the whingey post today – I do generally try to find the funny side of health issues on TOTM, to try and remind myself – as much as anyone – that there is a funny side, even to serious things. But I’m afraid I’ve been failing to find a funny side to this for nearly four years. I have brought it up with my IBD nurse, and it is something (bless her heart) that she’s taken very seriously and is trying to help me find a solution for. Maybe then, I’ll be able to laugh about it. Or at least not have to resist the overpowering urge to drop-kick the next person who tells me to stop tying my hair up.

24 hours of blood pressure testing and sense of humour failing

This week’s post is another by Becky, on high blood pressure and complaining: 

So I’ve simultaneously had a very weird 24 hours, and a very normal day. From the outside, I popped to the hospital (sadly very normal these days), met a friend for some freelance work, went home and had tea, tried and failed to get an early night, got up the next morning and went to work. So far so boring.

The weird element came from having my arm squeezed to pins-and-needles every half hour, and the wire wrapped around the back of my neck.

If you remember from my last post, my blood pressure was of the worryingly high side, and nobody – myself included – could quite work out why. There was a very good chance that this was because I was getting so stressed out about having my blood pressure taken (which if you read my last post I hope you’ll agree is fair), that the very act of having it done was raising it. This apparently is one of those ‘face your fear’ situations, and thus I was booked in for a 24 hour blood pressure test.

Now, when they told me this, I’m not naïve enough to have been expecting some futuristic metal band around my arm with a teeny screen that displayed my blood pressure at all times. But like, we do live in an age of iPhone whatever-number-we’re-on’s, and self-driving cars, and frickin’ virtual reality headsets. And I get that the NHS has much better things to spend its woefully thin budget on, but you know when you go to the doctors and they velcro your entire upper arm into the blood pressure cuff? Yeah, that. Except with a nice fat wire running up my sleeve, around my neck, down my front and into my pocket, plugged into what looked to me like a cheap walkie-talkie from my 90s childhood. I wasn’t allowed to remove any of these things for 24 hours, and they ‘went off’ every half hour with a nice loud buzzing as my arm was squished into putty. Except for at night – it only went off every hour at night.

I have to say that at this point I was looking at the nurse like:

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Just to save some hefty rambling, here’s a quick summary of when my sense of humour was and was not able to cope with this day:

Found It Funny

  • When my friend pointed out that, because the wire was dark red, it looked as though I had a thick stream of blood running mysteriously up and down my body.
  • When it went off as I was on the phone at work, causing me to totally zone out of the conversation I was supposed to be leading and instead wonder whether that buzzing was audible over the phone.
  • When, in the middle of the night, I half-woke up and thought the duvet had swallowed my arm.
  • The weird clothing conundrum of trying to get out of (and the following morning, back into) my bra.

Did Not Find It Funny

  • When I was walking home and instead of gradually squeezing my arm and then releasing it, the cuff squeezed my arm and then seemed to freeze. Like, just didn’t relax. Only for about three minutes, but long enough for me to a) completely lose the feeling in my fingers and b) wonder what would happen if it never let go.
  • The concern that after this little incident it was actually broken, and failed to record any readings for the remaining 19 hours (prior to this it had been showing me the reading, and after this – despite still going off on time – showed me diddly squat).
  • The six or seven other times it woke me up in the night, and I knew exactly what was happening and was just pissed off.
  • Having an itch under the increasingly sweaty velcro strap. That is some torturous shit.

One way or another, I ripped that thing off my arm (with difficulty, being in a public toilet cubicle and wearing three layers) and gave it back to the Cardiology department like:

throw

Unfortunately I think a lot of this grumpiness stems from an instinctive and totally unfounded feeling that the result of this test will not be what I want. The hope was that it would prove that my high blood pressure is, effectively, all in my head. That I have white coat syndrome, and am made nervous enough by hospitals, doctors and medical attention that it causes my heart rate and blood pressure to sky rocket. And my problem with this is that whenever I’ve taken my blood pressure at home it’s been just as bad. Which from what I can see means that either:

  1. I’m anxious about having my blood pressure taken, full stop – regardless of the environment it’s taken in. Which would mean the 24 hour monitor would make no difference.
  2. The problem isn’t actually caused by anxiety, and something else is going on.

Either way, this test won’t have made any difference.

But grumpiness aside, this was the next step the doctors needed to take to narrow down the list of potential problems. I get that, I respect the fact that they know much more than I do, and as my high blood pressure doesn’t make me feel in any way ill, I don’t really mind if it takes longer than is ideal to get to the root of the problem. And I don’t know what this test will have shown – I could very well be wrong in my suspicions.

So for now, I’m just going with:

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And be grateful that at least that stupid cuff is in the past.

The Things You Don’t Think About: Chronic Illness and Travel

Our second blog by Becky. Please see her introductory post about ulcerative colitis for some context! 

So in my World Outside Health, things have been fairly hectic. My partner and I have decided to temporarily jack in our jobs and go travelling for a couple of months later this year. This has been a big and frankly terrifying decision on a variety of levels, not least of which related to my ulcerative colitis.

Though to be completely honest, I actually didn’t factor in my colitis at all for an inadvisably long time. Having had a flare-up at the beginning of June, by the time we were making decisions about our trip I was on a dose of steroids (think anti-inflammatory, not American high school movies) so comprehensive that my bowels were on their absolute best behaviour. This, combined with the fact that less than one of my 23 years has incorporated colitis, and I just, kind of…forgot.

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Hence why this post is titled ‘The Things You Don’t Think About’. By the time I remembered that I did actually still have colitis, there wasn’t that much time to remember all the extra preparations, expenses and concerns I now have to deal with. Frankly I still haven’t really got my head around a lot of this stuff, so please excuse my falling back on Lazy Blogging 101, and making a list.

  1. Travel insurance

Travel insurance is one of those grown-up things that probably wouldn’t have occurred to me until very late in the day anyway (or, you know…at all), but when I did remember (for which read: when my dad reminded me and sent me a link to his own insurer) I was literally holding my laptop at arm’s length and looking at the quotes like:

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And I had every reason to. Despite answering what I saw as the ‘right’ answers to the questions asked about my ulcerative colitis (that I’ve never been admitted to hospital and actually still have my colon, etc.), the cost of travel insurance quadrupled. Quadrupled. My insurance has cost almost as much as my flights. I mean, ouch.

And whilst I understand why this is necessary from the insurer’s point of view, I still felt kind of  affronted. Like, sorry about my chronic disease, Insurer People, I HOPE IT’S NOT TOO INCONVENIENT FOR YOU.

  1. Medication

So up until my last appointment with my IBD nurse (previously mentioned Bringer Of The Knee-Weakening Relief), I had gotten myself into such a state about how to sort out all the prescriptions I would need / want whilst I was away, I walked into that appointment like it was my execution. Thankfully, my nurse once again took all my problems out of my hands, banished most of them and then handed the remainder gently back to me with a couple of additional treats. Here’s one for Things You Don’t Think About more generally – up until you’re diagnosed with something that requires medication, nobody actually explains to you how prescriptions work. I like to think of myself as a relatively intelligent and knowledgeable person, but this time last year I did not know how much prescriptions cost, what the cost was for or why it was applied, how to set up a repeat prescription, how to collect a repeat prescription, what the hell a milligram was or whether you needed to see a doctor for individual prescriptions.

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I finally got my head around all of that, and then this last month has been like ‘Prescription Mysteries: The Travel Edition’. But I think I have, at last, cracked it.

I have yet to tackle the issue of fitting what I’ve just calculated to be 728 tablets into my bag.

  1. Worries

But to be honest, the biggest difference between travelling now, and travelling before my diagnosis is the worry. I’m a pretty natural worrier as it is, but now there are so many other things to lie awake thinking about; what if I have a flare-up? The cost of medication will be sky-high anywhere else (moment of thanks for the NHS), never mind if I had to be hospitalised. What if I have to come home and we’ve wasted all that money? What if I stay but am ill the whole time? A lot of our trip consists of very long bus journeys – what if they don’t have toilets on? What if they do, but someone else on the bus is in it when I need it? What if I suddenly need the loo, and I’m in a city I don’t know? What if I eat something that upsets my stomach? And on and on and on…

Now, it should be made very clear here that I’m going to Canada, not the back reaches of a South American rainforest, so there are hundreds of worries that I’ve already been spared. But the simple fact is that being anywhere other than home when you have a chronic illness is a completely different ballgame. I can’t afford not to think about things anymore – I have to think, I have to plan, I have to be as prepared as I can be, and I’m still more likely to get ill and be forced to pack in than someone with a clean bill of health. Which sucks.

But, but, but. Thankfully, we live in a modern era. The prevalence of IBD (Inflammatory Bowel Disease – a blanket term for colitis and its very close cousin, Crohn’s Disease) in the Western world means that there are loads of resources out there that have been created so that people like me can live their lives in as unrestricted a way as possible. My nurse pointed me in the direction of IBD Passport; a site that has been built with the specific purpose of giving advice and support to people with Crohn’s and colitis who want to travel, and it’s been invaluable! My nurse herself could not have been more supportive in helping me make medical arrangements for my trip. My parents – respectively a well-travelled colitis-sufferer and Ultimate Holiday Guru – have been so eager to help I think I’m actually in trouble for not having bought travel insurance yet. Everyone around me, in fact, has been as brilliant as they could possibly be.

And at the end of the day, nobody can go travelling and guarantee they won’t get ill. They just hope for the best. So now that I’m as prepared as I can be, that’s exactly what I’m doing. Fingers crossed.

 

Days in the Life with Ulcerative Colitis

Here is Becky with her first blog for TOTM!

So last October I was diagnosed with ulcerative colitis, which is defined by the NHS as: “a long-term condition, where the colon and rectum become inflamed.” That’s about as fun as it sounds.

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As this is my first post, I was really struggling with a way of outlining ulcerative colitis in a way that would explain what it is, does, how it’s treated and how serious it is to people who haven’t heard of it, to introduce my personal experience of it and also to give a concept of the scope of this illness.

But…that’s a lot to ask of a blog post. Also, I think you’ll agree, it doesn’t exactly sound like a laugh a minute. So instead what I’m going to do, is quickly (cough) summarise my history with the disease, and then give you three days in the life: a bad day, a middling day, and a good one.

So. I’d been noticing symptoms of ulcerative colitis, on and off, for two-ish years before I was diagnosed, so the diagnosis itself didn’t come as a surprise to me. My dad has had the illness since long before I was born, so I’d grown up knowing vaguely what it was and how much it affected his life – which thankfully, from an outside perspective, was not much. That said, in the ten months since I was diagnosed I have been on a learning curve so steep it’s basically been vertical. I’ve been on and off various kinds of medication, and have yet to get the condition under a more permanent kind of control; but myself, my doctor, my glorious nurse and my mother’s furious googling are onnit.

A Bad Day

We might as well start with the crap (expect a lot of toilet puns. It’s not classy or clever but you’ve got to get your kicks where you can!).

2.45am – wake up to an instant churning and cramping in my stomach and have to make a dash for the bathroom. Symptoms have been getting steadily worse for a week or two at this stage, but this is the first of recent occasions it’s gotten me up in the middle of the night. Not an encouraging sign.

3.15am – get back into bed with a still-aching stomach and try to get back to sleep.

7.45am – my alarm goes off. Feel a swell of dread as I’m waking up, because my stomach is not happy. The pain caused by colitis varies, but for me generally takes the form of abdominal cramping, with the bizarre additions of feeling as though someone is moving furniture around in my insides, or that my organs are doing Mexican waves.

8.15am – return from another trip to the bathroom. It’s not looking good – there’s basically just water and blood coming out of me and I feel like my guts are being put through a mangle. Get back into bed even though I should be getting ready for work, giving myself half an hour to make sure things aren’t improving before making the dreaded call in sick.

8.45am – make the executive decision that I can’t make it into work today. Have only had to take a few days off for my colitis since being diagnosed, but as I’m an uncontrollable people-pleaser and only work part time, it causes me a supreme amount of guilt anyway.  

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9.30am – call in sick. Have to laugh at the Britishness of automatically answering the question ‘how are you?’ with ‘I’m alright, thanks’ despite having spent the last fifteen minutes worrying if I’ll actually be able to make it through this phone call without lobbing the phone at my boyfriend and running to the bathroom.  

9.50am – I take the day’s first batch of tablets and try to get back to sleep – I’ve found that the longer I can sleep the better my stomach is when I eventually get up. Thankfully, I happen to be naturally blessed with an almost superhuman ability to sleep far more than any human being wants or needs to.

10.20am – drift awake. Assess stomach: not good. Go back to sleep.

10.55am – drift awake again. Still churny and painful. Go back to sleep.

11.50am – wake up and, finally, feel like I can actually get up. Pad cautiously around in my dressing gown, sipping a glass of milk and keeping close to the bathroom. Am experiencing enough fatigue at this point that I don’t have the energy for much more than just sitting. So I sit, and go to the bathroom, and feel variously sorry for myself. Pete (boyfriend) is working from home and periodically looks in to bring me some water, ask if I want to eat anything (I don’t) or give me a cuddle. Call my mum to whinge about how rubbish I feel (as with her I can go all-guns-blazing for the Self-Pity Oscar and she still has to love me). Am very, very lucky and grateful to have wonderful people around me who look after me.

3pm – head into town for an appointment with the IBD nurse at the hospital. Am nervous about the walk in, but haven’t eaten anything so no disasters.

3.30pm – see my absolute heroine of an IBD nurse, who spends the first five minutes of our appointment telling me that she’s a bit emotional because she’s just had a last appointment with a long-standing patient who’s moving to Dubai. I could kiss her for instantly making this feel like a conversation between two people, rather than a clinical analysis of my most recent bowel movements. I explain what’s been happening, she offers some solutions and ultimately sends me off with blood test packets and prescriptions, and the promise that I’ll call her if things don’t improve. I adore her.

4-5pm – rattle through my seventeen-zilllionth blood test of the year, head off to the pharmacy and wait around for my prescriptions.

5pm – feel able to eat something for the first time today, and for reasons best known to my guts, that thing needs to be a muffin, along with the second batch of tablets. Feel as full as if I’ve had a five-course meal after one raspberry muffin (and I speak as someone who has been known to eat an entire large Dominoes pizza in one sitting, by myself).

5-7pm – laze around whilst Pete makes tea for some friends we have coming over tonight. He’s asked me if I wanted to cancel three or four times today, but frankly I’m not sure when I’ll be feeling better, and I resent missing out on nice things because I don’t feel well. This attitude can backfire.  

7-11pm – make possibly the least sparkling conversation of my life with our friends, and experience a lot of frustration at being unable to eat one of my favourite meals. I rip a tortilla in half and construct a tragically tiny burrito, but even that’s a struggle. It’s lovely to have the distraction of friends, but it comes with the added anxieties of trying not to be noticed every time you slip out to the bathroom and make all sorts of colourful and embarrassing noises.

11.30pm – go to bed, after being as sure as I can be that I’m done with the bathroom and taking my last (and biggest) batch of tablets.

A Middling Day

5.30am – wake up; my stomach’s not terrible, but it’s definitely having a good old churn, and I still have to abandon my lovely cosy bed for the cold bathroom I’m resenting more and more.

8.45am – I’m up, dressed, ready for work and hovering anxiously. Sometimes colitis and I do this little dance where I know I’ll need to go to the bathroom in the near future, but all feels calm and well until I’m pretty much bang on halfway between home and work. There have been occasions where I’ve gone through the park at the end of my morning commute like the f***ing Flash.

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9.15am – make it to work. Not feeling great, but my colitis is always at its worst in the mornings and I take a lot of comfort in knowing I’ll feel better in an hour or two.

11.30am – I notice I’m feeling better when I realise that the bubbling, cramping sensation in my stomach has given way to good, old-fashioned hunger pangs.

1pm – I have some lunch, and though I’m a bit cautious for an hour or so afterwards, I feel fine.

5pm – head home from work, and haven’t thought about my stomach for hours. Looking forward to making and eating dinner with Pete, and continuing not to think about it for the rest of the day. I am constantly asked if and how my diet has changed in response to my illness, and I’ll write a full blog post on it at some point, but the short answer is: no, it hasn’t.

11pm – go to bed, hopefully feeling alright.

A Good Day

Pretty much like one of your days, only with a grumpier morning and more tablets.

Whoops, that was still really long. Sorry! Hopefully it gives you a sense of my ulcerative colitis at least, though this is far from a summary of the illness as a whole. I haven’t included the worst days or the best days, for the sake of fairness, but can happily say that the vast majority of my days since diagnosis have been of the Good or Middling variety.

There are many, many more aspects to ulcerative colitis and my relationship with it that I’ll go into in future; hopefully some of them will come in under 1600 words…

An Introduction

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Hello, and welcome to TOTM!

We know it’s boring to start a blog with an introductory post when you could just read our ‘About’ page, but we felt that to launch into descriptions of the large bowel or ovarian cysts might be throwing you in the deep end a bit, so please excuse our repetition .

Firstly, thanks for stopping by – the whole purpose of this blog is to build and sustain a sense of community amongst women with health issues (which, we’ve discovered, is basically all women), and we couldn’t do that without people actually reading it. So thank you!

The idea for this blog came from a Christmas Eve reunion of old school friends in their early twenties, who were sat in the pub and suddenly realised they had spent the last hour discussing their various health issues. Laughing at this, noticing how many women – of all ages – had similar problems and despising those ‘Women’s Health’ mags which basically just bang on about avocados, all combined and blossomed to form TOTM. The idea is for this to be a welcoming and open space for us to discuss our various ailments in a fresh, funny and real way.

We want anyone to feel like they can contribute, regardless of age, background, writing experience or the health issue you want to talk about – just drop us an email to timeofthemonth93@gmail.com and let us know who you are and what you want to write about. We will then let you know when you should have it ready by- all ladies are welcome!

And on that, a note for the boys – you’re welcome too! (My 20 year old brother panicked when he thought he’d liked a girls-only Facebook page, so just to reassure him and others like him…) Whilst obviously this blog is going to be written and run by women, many of the health issues we’ll be talking about will definitely not be specific to women, and we really do want this to be an open, friendly and varied community. We even have dreams of somebody one day setting up a sister (brother?) blog for men’s health issues…but for now we’ll work with what we have!

So with the admin out of the way, we should probably introduce you to our lovely selves…

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Amy: 

I was diagnosed with Polycystic Ovary Syndrome (PCOS) in my second term of my second year of university. It was also approaching my second decade, turning twenty in the May.

I had two of the main symptoms; weight issues and irregular (sometimes none-existent) periods. Luckily, although I didn’t feel it at the time, a nurse I went to see about my problems suggested I have an ultra-sound scan to see if I had PCOS and it came back that one of my ovaries was affected. Just to put this in a bit of self-context, I talked my way through science GCSE so my biological understanding was poor to say the least; as I jokingly tell people “I didn’t know I had two ovaries until I realised one of them was f***ed.”

I completed an MA in Multimedia Journalism last year, but I currently work as an Admin Assistant at an arts organisation in Rotherham. The role includes completing a myriad of tasks and working with a diverse and eccentric group of people all of whom make my job incredibly enjoyable.

I currently write three other blogs including one for work, however my primary, most long-lasting one is called The Open Face. I also write songs and am I self taught guitar/keyboard player; I dream of being in a rock band and changing the world.

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Roz:

I have Asperger’s with a sideline of God knows what going on in my digestive system (it’s under investigation), knee impingement syndrome and a psychology degree (which also sometimes feels like an ailment).

I was diagnosed Asperger’s (well Autism Spectrum Disorder) just coming up two years ago and am still figuring out what that means in my day to day life. You’ll also be getting to take part in the journey of finding out what is going on with my digestive system; it’s been two years now, will I ever find an answer?

My younger sister was diagnosed last year with ulcerative colitis and hospitalised for 12 days recently, so look out for views from the side of the hospital bed and other such beauties. I have a pretty dark sense of humour and an optimistic cynicism (or at least that’s how I see it).

I create art, which you will see around the blog and can also find on my artists page here. I also work part-time in visitors services at an interactive science centre, I volunteer in a couple of places and do various other things mainly involving how I can justify not leaving the house for a week and binging on TV shows.

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Becky:

I have ulcerative colitis, a chronic inflammatory disease of the large bowel, and a sideline in high blood pressure, wonky ankles (that’s a technical term) and a tendency to seriously overuse commas. The colitis is fairly new to me, having been diagnosed in October 2015, and it’s brought with it a variety of humiliations, stresses and side effects I could have done without. But it’s also forced me to challenge some anxieties, and made me realise what fantastic, caring people I have around me.

I live in Newcastle and work part-time in a theatre, spending my other part-time desperately pursuing writing for a living. I have another blog in which I discuss this, er, ‘gradual’ progression and various other things not related to my bowels: https://noexperienceneededsite.wordpress.com/

So if you’d like to join the team and contribute a post or twelve, give us a shout! We’re friendly and normal (…), honest. And in all seriousness, there are very few things more comforting than reading about your experiences, written by someone else who has been through the same thing. There aren’t many things as isolating to a person as illness and pain, because nobody else can feel what your body’s feeling. But if this blog does nothing but make it clear to you that whatever you’re going through, you’re not on your own, then we’ll consider that a roaring success.

So thanks for reading, give us a like on Facebook and a follow on Twitter  and watch out for our Friday postings.

Much love x