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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

 

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Thirteen years

4 May

Thirteen years ago I fell asleep in Geography class.

I still remember every bit of it so exactly. I remember emptying my entire pencil case out over my desk, getting frustrated because I just couldn’t find the pen I was after. I remember lifting my hair off the back of my neck and saying to my friend “it’s so hot in here” and she replied “it’s not really.” I remember pulling my sweatshirt off, getting my head stuck and then triumphantly throwing it over the back of my chair. I remember feeling like I was going to be sick, like I was falling, like I was never going to feel cool again. I remember putting my head down on my desk. I remember my teacher crouched down in front of me saying they needed to get me outside. And then I remember being home. But I don’t really remember how I got there.

I didn’t go back to school that term or the term after that. I spent more time in the doctor’s surgery than the GP himself. “It’s just a nasty virus” they’d say, but I knew it wasn’t. Something strange would happen, we’d go to the doctor and he’d say he didn’t really have a clue either. He called it “Rachel Syndrome”, which would put a smile on my face for just a second but I knew that still meant they had no idea and couldn’t make me better.

And then I fainted down the stairs. Dad was there to catch me but I think that was the moment we all realised that something needed to be done and I ended up in A&E.

I was put on the children’s ward, with needles stuck into me at least twice a day and bruises the length of my arms. Wearing my Westlife tour t-shirt for comfort and with a bucket of mini chocolate doughnuts by my side, I was an enigma. Nobody quite knew what to do with me. And then, months later, a student doctor quietly questioned if it could be Lupus. And yes, it could be and it was.

Whilst diagnosis was the holy grail, things didn’t just stop there. Thirteen years ago, Lupus wasn’t a thing. Nobody really knew what it was or what to do with it, especially in someone of my age.

I still felt like I was going to be sick, like I was falling and like I’d never be cool again. Stubbornly I’d try and take myself to the bathroom in the middle of the night and have to call desperately for my parents as I lay on the landing after my legs collapsed and I couldn’t move. I lost count of the amount of times my Mum and Dad found me curled up on the tiled kitchen floor because it was the only place I felt cool and like my joints weren’t going to explode. The medication made my temperature spike so high, Mum had to fight me for my duvet cover. I might have had no energy, but all the strength I did have was spent wrestling for that blanket. My bed was moved downstairs. My parents worked shifts so there was always someone with me as I was too poorly to stay with friends or relatives. Lupus changed my world beyond recognition, but it also had ripple effects on my family. Something which would make me feel guilty time after time.

But, to coin a phrase, I’ve come a long way (baby). I have been in tears writing this, remembering just how scared I was and how poorly I felt. There have been snippets of this since – fainting on the bus was a real low point – but, and I am touching all kinds of wood, it has never got quite that bad again. I will never learn and will always push my luck. I will always get sad when I feel poorly because I don’t ever want to feel that being ill is normal. But I will stop when I need to (well, sometimes). At the heart of it all, I’m still me.

Next year, my life will be exactly half and half between ‘healthy’ and ‘Lupus’. I’ve spent my entire adult life trying not to let it get me down. And yes, I kick up a fuss every now and then and feel sorry for myself. But mostly? Mostly I’ve realised that I have learnt to live with it and all it’s silly little restrictions. I’ll give up drinking alcohol but I won’t be giving up my beautiful shoes. Compromise, see?

I’m going to be working with The Hibbs Lupus Trust even more in the next year to help raise awareness of Lupus and help support other patients – newly diagnosed or otherwise.

It’s World Lupus Day on May 10th. Please help me raise awareness so that Lupus becomes more well known and patients get the support they need. Share this post or join in with the L Hand Sign Campaign, like I have here:

photo(1)

And if you’d like to help by making a donation, you can do so on my JustGiving page – www.justgiving.com/rachel-beasley.

There’s still a long way to go and I still live in hope that one day we’ll find a cure. In those early days I felt so alone and convinced myself I’d never be able to live a normal life again. I don’t want anyone feeling like I did.

This Month I Have…

10 Apr

Over the last few weeks I’ve not had chance (or the energy) to write about what I’ve been up to. I try to keep up to date with it so that I am least posting something regularly and haven’t been particularly good at it. Here’s what’s been going on in the world of Rachel in the month of March:

  • Celebrated my Nan’s 90th birthday with a party. It was good to get all the family back together – it doesn’t happen often enough.
    cousins
  • Collected the keys for our new house.
  • Took Mum for fish and chips as her Mothers Day treat.
    mothersday
  • Occupied a corner of Starbucks for a few hours with an old school friend – it was like being 15 again.
  • Mum and Dad came to visit to help us move house. I hadn’t realised just how much stuff we had.
  • Fought to get our new bed up the stairs. It had to come in through the window.
  • Spent hours cleaning.
  • Started a new course.
  • Received my Hibbs Lupus Trust hoody in the post.
    hoody
  • Went to a business conference and used it as an excuse to wear fabulous shoes.
  • Lost hours of my life on the phone to various companies changing our address.
  • Got snowed in our new house.
    snow
  • Spent hours trying to dig our car out of the road. It didn’t work.
  • Had cuddles with a friend’s five-month old baby boy. Dribble everywhere (him, not me).
  • Celebrated my lovely friend’s engagement with the girls. It’s been a long time since we were all in the same room.
    girls
  • Did karaoke for only the 3rd time ever.
  • Downloaded Candy Crush and consequently lost all my spare time.
  • Bought myself an Easter egg. Ate it far too fast and before Easter Sunday.
  • Spoke to the communications team at the hospital to start a brand new project.
  • Powered through Friday afternoons with a Starbucks latte delivery.
    coffee

To the future and “that’s it” – a wedding post

30 Apr

One of my best friends got married this weekend. We have been friends since the first year of secondary school, now 14 years ago. Despite all the excitement in the run up to my own wedding, despite having my own home and a ‘proper’ job I don’t think it ever really occurred to me how grown up we all are until I saw her walk down the aisle and say her vows to her new husband.

Everything had been planned to the last detail. The orders of service adorned beautifully with a photo of the two of them, readings chosen carefully and a marquee set up in her parents garden complete with touches of her favourite colour. There wasn’t a thing that could have been done differently for them, except banishing the incessant rain that fell all day. But in the end even that didn’t matter because we all spent the afternoon chatting and the evening dancing the night away despite being covered in mud and the very real possibility of our cars wheel spinning on the muddy field at the end. They did and we all got a bit stuck for a little while but it just added to the fun spirit of the day.

In the middle of busting out our best dance moves that we have spent 14 years perfecting, I asked my friend whether she’d had a lovely day. To which she replied, “it’s all about all our favourite people being in the same place at the same time enjoying themselves. That’s all I wanted”. And I don’t think that thought ever really occurs to you until you take a step back on your own wedding day and watch it all happening around you. It’s so easy to get caught up in the detail and the stress of the table plans, that suddenly you find yourself wishing it all away and counting down the days until it’s here – not just so you can get married, but so you don’t have to plan it anymore!

I’ll admit that over the last few weeks I’ve wished this time away and wanted it to be over, but as my friend was leaving she hugged me and said, “it’ll be you next and I look forward to it very much”. Whilst in the midst of preparing to say my vows to D and trying not to get bogged down with everyone elses opinions, it did me the world of good to go to her wedding, hear her say those things and see what it is all really about. The marriage, the future and, as my lovely friend drunkenly said at her hen party, “that’s it”.

Weekend Words: Stay Strong

3 Dec

This week has been a bit of a whirlwind. Some friends had really great news that’s going to change their lives and some received bad news that will change their lives in a completely different way. I guess you never can tell which way you’re going to be directed in next and the best way to deal with it is just to take everything as it comes and, well, just deal with it.

I’ve really learnt the importance of friendships this week. When something knocks you down and you feel massively overwhelmed, it’s your friends that will pick you up and put you back on the straight and narrow again. That’s just how it should be.

Westlife

5 Nov

October 1999, aged 13. I was on a half term caravan trip with my family and Grandma to a park on the south coast. It was absolutely throwing it down with rain and you needed swimming lessons just to get from one side of the park to the other, let alone in the pool itself. Sunday night, I walked in the dark through the puddles getting absolutely soaked just to sit in the car and listen to the Top 10 being announced at 6pm. Just to see if Westlife ‘Flying Without Wings’ was number one. It was and I remember grinning to myself and singing along at the top of my voice in the car on my own.

Ridiculous really, but already Westlife were playing an important part in my life and if you’d have told me back then that they still would be in 2011 I wouldn’t have believed you. You see, boybands have never been ‘cool’ really. They’ve never been seen as an acceptable way of spending your money, listening to music or wasting time on. I used to get teased on the school bus when listening to their album on my super-cool portable CD player and even now when they come on my iPod. As a Westlife fan since I was 12 years old it’s all now just water off a duck’s back. I tend to let people think they’re right because it’s easier than arguing.

The announcement a few weeks ago that they would be splitting up wasn’t a surprise. It was a shock but it wasn’t a surprise. For any fan who has followed them since we were essentially children we knew it was inevitable at some point over the next year or so. And the biggest thing, the thing that’s had the most impact on me, is realising the friends that I have made just because of Westlife. The friends who I used to stay up all night with chatting on forums and MSN messenger. The friends who I used to send letters too and with whom I’d swap pictures. The friends who I’d meet every single year without fail outside arenas across the country whilst on tour. These girls aren’t just ‘Westlife friends’ to me, they’re some of my best friends. And whilst we’ll still be in touch after Westlife and beyond, our tradition was always tour time.

It was always the last minute notification of a tour going on sale, which usually came from a random source rather than the official website who were always too slow. It was always the stress of trying to click the ‘buy tickets’ icon on the website faster than any other fan in the country. It was always the day of the first concert of the tour – I’d often be too excited to eat – and seeing friends you haven’t seen all year. We’re all adults now – some of us are married, some have children, we all have jobs and responsibilities – but every year, around about May, we’re teenagers again and suddenly nothing else matters.

So yes, I am a little bit sad about Westlife splitting up because it means no more albums and no more tours. I don’t care if you think less of me because I have a bit of thing for boybands or listen to their albums really loud in my car whilst driving down the motorway. I don’t care because I have some amazing memories and, best of all, some amazing friends. And if that makes me ‘not cool’, then so be it. Now go and listen to ‘Flying Without Wings’…

p.s I am loving the face that Mark is pulling on the still.

From the clinic frontline

8 Oct

I had a review with my consultant this week, which has come at the perfect time to discuss my future seeing as that’s all I seem to be thinking about recently. It’s taken a while to secure this appointment as it was originally planned for June but I went and ruined that with potential Meningitis – I know how to live!

After sitting in the waiting room for nearly two hours engrossed in my book – clinic musthave number one is always a good book – I was introduced to a new member of the Rheumatology team. We sat and had a chat about all the normal things, I explained how I was tapering my own medication which was met with a raised eyebrow or two, he told me about my blood work and everything was pretty much how it always is. Then my main consultant came into the room and, after reading the notes this new doctor had made, took one look at me and asked a question that I’ve never been asked in all my years of hospital appointments.

“Are you living a normal life?”

I didn’t really know how to answer. I knew deep down that the answer would probably be that no, I wasn’t but even after all these years, it still feels like defeat to admit that. It still feels that it would look bad on me as a patient to admit that I’m not dealing with all this well enough to live my life normally. I stumbled over my words a little bit, trying to find the right way to explain to them.

“I wouldn’t say that I’m absolutely not.”
“Well…can you go out drinking with your friends, do you go to work every day feeling on top of the world, can you make plans spontaneously like other 25-year-olds might?”

And faced with it all laid out in front of me like that, I had to admit something to myself. I can’t. I don’t. This was the kind of thing my doctor – the person who I always thought would actively discourage me from doing all those things – actually expected it of me. I could feel myself tearing up a little bit as I explained how I feel about my life.

I’ve always known I couldn’t go out drinking because of my medication, but also because I feel sick enough every morning waking up that I don’t need a hangover adding itself into the mix too. I struggle to completely let my hair down at weekends and go out dancing because I know that it can take days (or weeks) to recover and I have work to go back to on Monday morning. The thought of calling in sick just because I’ve had a good time on Saturday night feels far too embarrassing, and it’s not even like I’ve drunk too many glasses of wine!

But in that consultation room on Thursday, I did tell them how I feel Lupus affects my life. How I feel it affects that precarious balance between work, life and everything else in between. How I feel I’m missing out on my time as a 20-something embarking on exciting life-changing decisions like new careers, getting married and, eventually, having babies.

So, they said, we’re going to mix it up a bit. We’re going to add in some new medication that I’ve not even tried before – I’ve never even heard of it – and we’re going to see if it works. Because, after all, I am not my illness.

I should not be putting my twenties on hold because I have Lupus and I’m constantly worried about how that’s going to affect my day to day routine. I should not be worrying about my wedding next year and how I’m going to make sure I’m well enough to spend all day with a massive smile on my face that, for once, won’t be hiding the pain I feel inside.

I’m under no illusion that introducing a new medicine is not going to hurt and I’ve read the side effects which don’t look pretty. In fact, by the time I’ve started on these meds I’m setting myself up for some pretty intense side effects for Christmas but all that – all the sickness and the tiredness – will be worth it in the long run. I’ll be sitting myself down in front of Christmas 24 (a whole channel dedicated to Christmas films, what’s not to love?) for the entirety of the festive season and getting ready to kick Lupus’ butt.

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