Lupus and pregnancy

6 Oct

This post was originally featured on The Hibbs Lupus Trust website here

Apart from a short period of time where I promised myself and everyone around me that I’d never get married, unless he was the future King of England, I’d always assumed that one day I would grow up, get married and have a baby. When I was diagnosed at the age of 14, I still assumed that would all happen. I don’t remember exactly when it dawned on me that there might be a tiny flaw in my plan but it did. (And I’m not talking about the growing up bit!) Many of the medications I was on expressly stated that it couldn’t be taken if you were pregnant, or intending to be, and some articles I read said that these medications and lupus itself could affect your chances of even having a baby in the future.

The ‘stubborn little madam’ me was strolling around – well, coasting around in her wheelchair – flicking her hair and saying it was all so far in the future, this would all be done with by then and it wouldn’t be a problem.

Whilst the ‘thinks too much for her own good’ me was sitting quietly in the corner of the waiting room trying to rewrite her future in her head.

I told myself time and time again over the years that, when it came to it, I would deal with it.

I was so nervous walking into clinic and telling my doctor that I was ready to try for a baby but they’d seen it coming. They’d had a plan in place for ages just ready and waiting for me to come to this decision by myself. They must have a crystal ball because I’m convinced they do know me better than I know myself sometimes.

Everything happened so fast and I found out I was pregnant a lot sooner than anyone had expected. I didn’t dare believe that this was it. It couldn’t possibly have been that easy after all those years preparing myself for the fact that it was going to test my patience and our marriage to the very limit. But that easy it was.

I’m not saying pregnancy was a breeze. It really wasn’t. I coupled extreme morning sickness with starting a new job, trying to convince the whole world I was just having a bit of a flare as I threw up my lunch and stared intently at a wall in a meeting so I wasn’t sick on the visitor’s shoes. To this day, I couldn’t tell you what was said.

The hospital became my second home even more than usual and, towards the end, I needed a bit of a helping hand with some extra doses of steroids and some TLC but was it easier than I’d expected? Oh yes. One of my consultants commented that I was probably one of the only people he’d seen who was healthier pregnant than they were otherwise. I don’t know what that says about the state of my body before pregnancy, or since to be honest, but I’ll take it.

I was nervous every single day. I wouldn’t let anyone announce our pregnancy because I was terrified something would go wrong. I tried to keep it a secret from everyone at work, telling them I just looked awful because I was having a flare and my skirts didn’t fit because I’d simply eaten too many sausage rolls. I should have told them sooner as my colleagues would go out and buy me more sausage rolls to satisfy my cravings and I didn’t even make the most of it!

I was exceptionally well looked after by my medical team in Leeds and I trusted them implicitly. Every time we ventured out of the hospital’s boundaries I made my husband promise that, if anything happened, he’d get me back to Leeds rather than having to go to another hospital. It was a bit more difficult for him to agree to this when we went on holiday to Egypt – although I’d already cleared it with one of the doctors that he’d use his contacts to treat me via Skype should I need it.

I’ve never trusted my body to know what to do. It has always let me down but, when it really mattered, it pulled through and I will never fully understand why or how. From the very first moments of our baby’s existence, even before we knew she was ever going to happen, she fought against my body that sees fit to attack itself let alone anything else. She wasn’t to know the odds were stacked against her or just what it would take to get her here safe.

You don’t need to hear just how she arrived – let’s just say it took a while (!) – but seeing our little girl come into the world, calmly inspecting everything around her (just like her mother), I can categorically say that sometimes we are capable of more than we ever dare to imagine.

pregnancy

Being married: Three years (and three months)

2 Oct

Oh I’m a little bit late with this one aren’t I? In fact, I’m a little bit late with a blog post in general. Since we found out last summer that we were expecting our first baby, life has never been the same. Even writing that makes me cringe with the sheer cliche of it but I promise I wouldn’t say it if it wasn’t true.

So yes, we welcomed our first child – a little girl – in April this year. I wrote throughout my pregnancy but couldn’t bring myself to make them public, we didn’t even announce on social media to friends, because I was always a little apprehensive that things wouldn’t go as smoothly as I had hoped. Becoming pregnant with lupus is quite a feat in itself, to get through pregnancy without much of a hiccup is rather a big deal. I will write a separate post about that but those nine months of pregnancy and the six months since she was born have been responsible for both the highs and lows of our second and third year of marriage.

My last post after being married for two years was about learning how to be one of two and considering someone else’s needs. My post after three is now about becoming three and not just having to consider someone else, but having to put them above all else. (Before anyone asks, my four year post will not be about becoming four!) E isn’t a demanding baby, for that we have been exceptionally lucky, but still her needs take over. Obviously we are no longer able to dedicate as much time to being husband and wife and, when the baby is asleep and the day is over, I do miss this.

Seeing my husband with our baby girl changes everything though. The way you see your partner before they become a parent is never how you see them again afterward. She is a daddy’s girl already, saving her biggest smiles for his return from work and rewarding his silly games with the best giggles.

The little things have been what’s kept me going over the last year. The late night bar of chocolate to satisfy that pregnancy craving (Galaxy and sausage rolls – but not together). Creating a steam room in our bathroom to help treat that nasty cold you’re not allowed any medication for. An extra hour in bed. Washing the baby’s bottles. Changing a nappy.

I always said it was important to find time to be a couple even after the baby has arrived like a tiny tornado in the middle of our world. My aim for next year is for us to get better at that, even if it’s just having a takeaway and watching a film when she’s in bed. 3years

My favourite things

15 Jul

(Don’t worry, I’m not going to go all Sound Of Music on you.)

I declare that something is ‘my favourite thing’ every day, at least once. By now, I must have about 10,000 favourite things but here are just ten that never change (in no particular order)…

My family

They have always done everything for me. I’ve not been easy to take care of but they have given up so much to do so. We have our silly in-jokes and we drive each other crazy but we’re really close and I wouldn’t change that for the world. 

photo (3)

Listening to the rain whilst wrapped in a duvet

Apparently the sound of the rain on the top of a tent is one of life’s greatest sounds, but I don’t really do camping. I like hearing the wind and rain bash against the windows whilst tucked up under my duvet. Lights off, eyes closed.

Big cities

I grew up in the Kent countryside, in between the beach and London. Looking back now it was perfect because I had access to everything I needed but it was London that drew me back time after time. I spent my weekends up there as a teenager and still get a heart swell moment every time I go back for visits. New York and Paris do the same – but London will always be the most special. 

photo (4)

Chocolate 

Not all day, not every day but cosying up with a good book and a bar of chocolate is one of my happy places. 

Playing with my friends’ babies

I’ve always loved babies but there’s something special when they’re tiny versions of your favourite people in the world. With their chubby baby wrists and heart melting giggles, spending time with them always makes me feel happy. And gives my friends a break.

Ollie

New shoes

I love the feeling of slipping on a new pair of shoes for the very first time. How a perfect pair of heels can make you feel like a different person and transform an outfit. My feet never change size so I shall spoil them.

Standing up high and watching the world go by

I love heights. Some of my favourite places in the world are up high – standing at the top of the White Cliffs of Dover and looking out to sea, the top of the Eiffel Tower/Empire State Building. It helps me think. From up there you can see the whole world spread out beneath you and suddenly whatever problem you have seems rather insignificant. 

Paris

 

Lengthy, crazy text conversations with my friends

My friends and I text a lot in group messages. I can go for a shower and come back to 40 messages waiting. Coming home after a day at work having left my phone behind nearly sends it into meltdown. We talk about everything. Silly things, personal things, things we’ve never told anyone else. I’m one of those crazy people that laughs out loud to their phone. 

Football

I used to beg my dad to let me stay up on Saturdays to watch Match of the Day. I love how it brings people together from all over the world. How it means the same in any language. Liverpool FC became my team of choice early on and were my first professional football match. I love the passion and the pride of Anfield. 

photo (1)

Milkshake

I have amazing memories of visiting tea rooms with my grandma. The kind with net curtains in the windows and chequered table cloths. Tall sundae glass, full to the brim with flavouring out the bottle and milk so frothy you can see the bubbles, topped with two bendy straws. 

Tour time

From 2001 – 2012,  I spent pretty much all my spare time (and some time when I was meant to be elsewhere) travelling around the country with my friends to watch Westlife. It started when we were in our early teens and just carried on, getting bigger and bigger. It was an excuse to catch up, go dancing and act like teenagers again. I miss it but there’s so many memories that make it all worthwhile. 

photo (2)

 

Being married: Two years

7 Jul

The day of our second anniversary dawned in a fashion not unlike that of our wedding day. I woke up with a start because I’d set my alarm incorrectly, bleary eyed from last night’s medication, and pulled open the curtains to blue skies and sunshine. Unfortunately though I didn’t get to put on a pretty dress and spend time with all my favourite people in one place.

When I was little I used to say that I wanted a wedding but not a marriage. I wanted an excuse to get all dressed up, spend a fortune on a pair of shoes and dance the night away with my loved ones. I didn’t want a husband or having to consider someone else in my decisions. Now, two years in to our marriage, I know that back then I didn’t have a clue what being married was really like.

Being married is making difficult decisions. It’s thinking about how little things will affect your future together. It’s putting someone else before yourself. It’s trying your best to keep it together when it feels like everything is against you.

It’s having someone who knows exactly which buttons to push to wind you up. And exactly how to calm you down afterwards. It’s having someone pick up chocolate at 11pm. And telling them to hide it when there’s only four squares left by half past.

It’s getting frustrated when they flood the bathroom during a shower, and leave clothes strewn across the bedroom. And them getting frustrated with you because there’s shoes and earrings and hair grips everywhere. It’s sharing your time with football and computer games.

It’s having someone laugh at you when you can’t parallel park the car after six attempts and abandon it in the middle of the street. And then sulking when they do it first time. It means laughing at their impressions of people (which are always the same). It’s having someone who makes you laugh so hard when you’re on the phone ordering pizza that the restaurant thinks you’re drunk.

Above all else, being married is an adventure. And our adventure is just beginning.

2years

 

Happy Days – the result

12 May

At the beginning of the year, I blogged about 100 Happy Days. I needed a bit of a kick start to 2014 and it was just the thing.

I’m naturally optimistic and I’m often told that I’m easily excitable and smile a lot (sometime too much). I think that’s quite a positive thing and, if this is how I’m remembered by others, I’m quite alright with that. So thinking about it, 100 happy days shouldn’t have been too much of a challenge.

I tried really hard to make each day’s photo different and I more or less managed it. There were days when it was harder than others, but I think that it was on these days that the project really came into it’s own. Despite everything, there’s always a little glimmer to make you feel that life’s not all bad – even if just for a moment.

The pictures range from babies to boybands, cake to old letters and football to my friends. They make quite the collection, don’t you think?

image

 

 

World Lupus Day

10 May 20140509-202615.jpg

Fourteen years ago the 10th May didn’t mean much. Fourteen years ago the 10th May passed me by in a haze of painkillers and high temperatures.

The 10th May is World Lupus Day. Fourteen years ago I was just starting my life with Lupus.

I’ve been very lucky to have been able to build up my own Lupus support network over the years. Other people with Lupus, from all around the world, who I can turn to with questions or rant at when things aren’t quite going to plan. Events like World Lupus Day bring us together.

I am incredibly proud to be part of The Hibbs Lupus Trust. Not only have they helped me through some tough times but I see the impact their work has on raising Lupus awareness every day.

It’s in the tweets from newly-diagnosed patients who are just grateful to have found somewhere they feel they fit in. It’s in the fundraisers doing wonderful things in support, and in memory, of loved ones. And it’s in the reactions of people I meet, who now don’t always look as confused when I say ‘I have Lupus’.

World Lupus Day is about bringing people together, but it’s more than that. It’s about giving us the chance to promote a condition that is so often misunderstood. It’s about raising awareness. Not just today, but everyday.

And, one day, it will all come together.

20140509-202640.jpg

People watching

14 Apr

I love the way people gasp when they reach that bit of a book. And the way they lean forward in their seat as the movie they’re watching takes a dramatic turn. I love watching their eyes narrow and their lips purse as they try to work out what’s coming next.

I love the way people watch football matches from behind their fingers. And the way they fling their arms around the stranger next to them when their team scores a goal. I love the way people look up at their idols on stage and dance with their arms above their head like nothing else matters.

I love the way people play with their hair or bite their lip when they’re talking. And the way they twist the stem of a wine glass in between their fingers. I love the look in people’s eyes when they watch someone they love and realise that they never want to look at anyone else for the rest of their life.

I love the way people close their eyes and transport themselves to somewhere far away. The, sometimes heartbreaking, glimpse of disappointment when they wake up and realise they’re still right where they always were. I admire the strength of people when they blink away tears, take a deep breath and carry on regardless.

I fall in love with people and their lives all the time. I fall in love with their mannerisms and their character before I’ve even had chance to ask their name. Sometimes our paths cross for just seconds and we’ll never meet again but I remember them fondly anyway.

I fall in love with people’s strengths and their weaknesses. With the twinkle in their eyes or a cheeky smile that hides a million secrets. I fall in love with their daydreams, their nightmares and their ambitions. I fall in love with their resilience, their determination and the innate belief that things will work out.

There is a certain kind of wonder that only comes from watching and experiencing the world through the lives of others. People are too complex and too beautiful to ever make perfect sense.

%d bloggers like this: