Autopilot

22 Mar

“We don’t really have a choice.” We needed to whack my medication right back up after years of slowly – oh so slowly – tapering it down.

My doctor was smiling at me, but she had also tilted her head a little bit like they do when they say something they know you’re not going to like. I sighed a little but smiled and replied, “I know.” Because I did, and I’d known that this was coming even before I’d stepped foot into the consultation room.

Clinic often feels like my second home. It might sound strange but I feel comfortable there. I always go on my own but I’ve never felt alone. I have a kind of routine that comes from so many visits over the years, and it goes something like this:

***

Pop my head round the door of the nurses room for a sample pot as I’ve forgotten mine (again). The nurses roll their eyes and hand one over saying “the day you remember, is the day I become a millionaire.”

Dig through the supplies I’ve bought for the waiting room. Usually snacks, water, notebook, pen, and reading book/magazines.

Get weighed and have blood pressure taken by nurses who greet me with a big smile and always a comment on my shoes.

Share supplies with other patients who weren’t quite prepared for the long wait.

My doctor apologises for the delay and laughs when I say it’s ok because I’m used to it.

Throw my things on the spare chair in the consultation room and when my doctor asks how I am, reply with a ‘fine thanks, and you?’. He always shakes his head at me and tells me off for giving him ‘a line’.

We chat for a while, they decide what they want to do with me and then I leave the room.

Stop off at the pharmacy to leave them my prescription whilst I have tests done. I always forget to bring spare cash.

Expertly navigate the corridors to the blood test room, choose a number and always sit on the same chair. Just outside of the waiting area, just behind the door so I can’t see what’s happening.

The nurse calls me in (I admit it, there’s only one I’ll let me near me), hands me a cup of water and counts the blood bottles as I check which arm has the best veins today. It’s always the left.

Recite my date of birth, sip my water and hum to myself as the nurse moves closer.

Clench my fists and my toes, hold my breath and keep on humming whatever is in my head.

Feel a huge sense of achievement that I’ve not cried, fainted or both.

Hand my next appointment card in to the receptionist, wave goodbye to the nurses, collect my prescription and leave the hospital.

Stop to buy a bar of chocolate from the shop in reception and head back to work.

***

But sometimes, I just get this feeling that it’s not all going to go to plan. And this time, I was physically shaking and felt sick to my stomach because I knew that something was going to happen. I’d had a bad few weeks, I’d been in for an ’emergency’ steroid injection and it hadn’t worked. It’s never not worked. Steroid injections are the only thing that do work. They’re my fail safe, my fall back plan, my comfort blanket.

And when the one thing that you have come to trust and rely on doesn’t work anymore, it’s a little bit terrifying. And really overwhelming.

I left the consultation room with everything running through my head. I was trying to keep it together, telling myself that it was all ok. I moved from the consulting rooms to pharmacy to blood testing with a lump in my throat and tears in my eyes. I couldn’t let myself break down. I couldn’t let everyone see me not coping. I was on autopilot, like so many times before. But when I got into my car, I couldn’t hold it together anymore.

Various things came together to floor me and I didn’t deal with it very well. I called D and my parents from the car, sobbing incoherent sentences down the phone at them. They couldn’t do anything to help from where they were but I just needed to let my guard down for a few minutes.

I took a deep breath, wiped away the tears, text D and my parents to say I was sorry for worrying them, reapplied my mascara and went back to work.

Despite everything. Despite knowing that I need to rest and telling everyone else off for pushing themselves.

This is my autopilot.

Advertisements

Happy Days

5 Jan

I won’t go into detail right now but 2013 didn’t end how I’d have liked it to. I found myself just putting one foot in front of the other and remembering how to breathe. It feels almost symbolic that all this happened in the last month or two of the year so I can now start 2014 with my head in the right place.

And, I am pleased to report, I have. But, you know, sometimes we all need a little help to remember that it’s not all bad. I was once asked why I am always so entertained by little things. I think that by appreciating the little things, the big things just one day fall into place right in front of your eyes. And, whilst I’ve not been the greatest advocate of that recently, I know that I really do still believe it.

A friend of mine shared this – 100 Happy Days – and I fell for it almost immediately. (I’m a sucker for yellow.)

I thought I’d give it a go to remind myself that the little things really are still the best and that there is always, always time (and reasons) to be happy.

Follow my #100happydays on Twitter or my shiny new Instagram.

Lupus in Leeds

10 Sep

In many ways, I’m very lucky living in Leeds. Since moving here in 2008 I have been looked after by the rheumatology team at Chapel Allerton Hospital and it could not be any better. I was incredibly nervous before my very first appointment. I’d been passed from pillar to post in other hospitals and was really starting to tire of explaining my life history over and over again. I didn’t see the point of registering with a new hospital when I wasn’t really planning on staying here for very long. I was fed up that nobody seemed to get me or understand Lupus. At the time, I felt like hugging anybody who had even heard of it before.

That all changed as I walked into the waiting room. There were posters on the walls explaining what Lupus was and there were leaflets available answering frequently asked questions. I gathered a pile together and stashed them in my handbag ready for reading later. I was then introduced to the specialist nurse who I clicked with instantly and given a telephone number that I could call if I ever had any questions in between appointments. I’d never had any of this before and I started to feel that perhaps I was in good hands here. I then went into an appointment with the registrar and the consultant came along later to see me. I had never felt so…well, listened to. I had never had the opportunity to just sit in front of someone and explain how I was feeling, what was going on in my head as well as my body and for them to come up with a plan to do something about it.

Don’t get me wrong, the team who looked after me around diagnosis were brilliant. However, since moving from Paediatrics and 200 miles up north, I had never found anyone who could quite compare. I could have cried tears of joy as I left Chapel Allerton Hospital after that first visit. Finally, I felt like everything was going to be ok. And since then, it has been really. I’ve had my blips of course and I’ve tried to fight their decisions at times. But there is always someone there to push me back in the right direction.

I’ve since learned that Leeds is quite the place to be for rheumatology. They’re involved in an awful lot of research which will hopefully go some way towards even better care – and dare I say, a cure? – in the future.

I have mentioned on here before that I want to continue raising awareness of Lupus to the general public. But I also think it’s incredibly important to support patients – newly diagnosed or otherwise – and their families too. Leeds seems to have such a great reputation for rheumatology medically, which is brilliant. But there’s some things you can’t rely on your medical team for and I think that’s where support groups come in.

I’m an ambassador for The Hibbs Lupus Trust and I’ve given myself the task of setting up support groups and fundraising events in Leeds and Yorkshire. I’ll be honest, I’m not entirely sure what these groups are going to involve. I’ve never been to one and I’ve certainly never organised one, which is why I need some help.

In my head, I don’t want them to be focused entirely on Lupus. I don’t want people to be put off coming along because they’re worried we’re going to sit in a circle and be forced to talk about ourselves whilst everyone else looks on. I don’t know about you, but in those situations I completely freeze up and struggle to even remember my name let alone come up with anything interesting to say. Yes, there will be things we’ll want to discuss about Lupus or questions to ask but we’re people too and I think it’s important we allow us to be so. I can guarantee you one thing…there will be cake!

So if you’re interested and you live nearby, please do get in touch. If you don’t live nearby but you’d still like to be involved, that’s fine too. Or even if you just need someone to talk to, I’m looking forward to hearing from you!

Find me on twitter @rachelbeasley or email rachel@hibbslupustrust.org

For the love of boybands

16 Aug

When I was a teenager, I fell head over heels in love with a boyband. I watched every TV show they appeared on, bought every magazine they were in and learned all the words to every song. I watched the same concert on tour more than once. I got up at stupid o’clock on Saturday mornings and took myself to London to wait at television studios. We’d drive two hours down the motorway just for five minutes. I spent hours online chatting away to other fans. We’d spend time outside hotels, in bars, sat on walls, running around to meet them – often having to make do with a wave as they got in the car.

I felt compelled to watch the Channel 4 documentary “Crazy about One Direction” last night. I’ve had some experiences with the ‘directioners’ which have been a little bit intense and I think I’d almost expected the programme to show me that they’re doing something different to what we did back in the day. But, for the most part, they’re not.

As the girls were filmed in their bedrooms adorned with posters of their favourite boys, I smiled as I remembered that my room was just like that. I had a life size poster by the door, I’d carefully line up all the others to cover all remaining wall space and the ceiling too. It got to the point where Mum commented that she didn’t like coming into my room because she felt like all the eyes were watching her.

As the girls were filmed standing outside the venues and hotels, I remembered the days where we’d spend hours doing the same thing. And the days fans have so very often been ‘moved on’ from hanging around outside.

Yes, some of the One Direction fans shown on the documentary do take it too far. But I could reel off a list of names of people who did exactly the same when we were doing it. Social media plays a huge part in it now because fans are given so much more access to the bands without even having to try. It also appears to encourage more competition because your success can be immediately beamed across the whole fan base for everyone to see. But the result of that is not really any different to how it’s always been. It’s just done differently.

Before One Direction there was Westlife and Take That. Before them, The Beatles and Bay City Rollers. The whole crazy process will soon enough start again with someone new.

Teenage girls will always fall head over heels in love with boybands. They will always lose their heads, scream at concerts and cry when they meet them. They’ll always make friends with other fans because their school friends just aren’t interested. They’ll always make excuses to miss school or use all their annual leave at work but, in the end, they’ll turn out OK. We all have!

And, years down the line, they’ll cringe a little at the insanity of it but above all else they’ll remember how bloody brilliant it all was. How going a bit bonkers over a boyband gave them the best memories and some of the best friends a girl could ever have. And when you look at it like that, how could it possibly be anything other than worth it?

Being married: One year

7 Jul

One year ago today, this happened…

20120707-DSC_4065

The one thing that everyone asks when you’re a newlywed (I can still say that a year in, right?!) is “does it feel any different?” At first, I’d be quick to reply that it didn’t but actually as the days and months have passed I’ve realised that, actually, it does.

For someone who always tries to write down her feelings and is very rarely short of words, I struggle with the words to describe what being married feels like.

Getting to grips with a new name takes some getting used to. Perhaps I should have gone all teenage girl and practiced my new signature more before the wedding. Training myself to respond when someone refers to me by my new surname is probably the hardest part of all. Especially the Mrs bit. I really don’t get that.

I think I’d always assumed that as soon as I was married, I would transform into a domestic goddess who could cook, bake and clean without so much as breaking a sweat. I’m not a natural in any of these departments and a year after donning a white dress and saying “I will” I am still no better. Before our wedding, D was given a book full of ‘notes for husbands’ and my favourite one is this:

“Don’t judge your wife’s housekeeping by how good your mother is. Your mother has been doing it since before you were born and your wife is just starting.”

So when the pile of ironing is just about to topple over, I’ve burnt the dinner or the cake doesn’t rise (again) I try to remind myself of this. Perhaps one day I’ll be able to swish through a room and feel like I have everything under control. Perhaps.

I’m still not – and wonder if I’ll ever get – used to calling D my husband. Sometimes I hear myself say it in conversation and feel like a kid playing dress up. Although every time I allow myself to believe it, I feel a butterfly or two in my stomach. I do hope that doesn’t go away.

I catch a glimpse of my rings on my finger, especially when they catch the light, and I am transported back to the days I’d slip my Grandma’s jewellery on to see what it would feel like. I do need to learn to put them somewhere safe when I take them off for a shower or to do the dishes, as I have mini heart failure thinking I’ve lost them every time.

D makes me smile all the time. Even when I really want to be mad with him. He tells me I laugh at everything and yes, I am hopeless at keeping a straight face but his ability to do this – even when things get really bad – is one of the main things I love about him.

He teases me about my cheesy taste in music. I fall asleep to his. But somewhere, right in the middle, there’s Les Mis. (I will be in so much trouble for publishing that.)

And really, I guess the main thing is that we’re just better together now. Despite all the little things that wind us up about each other. We spend a lot of time together, but also a lot of time apart. We try and have ‘date nights’ at least once a month, but they often end up being more frequent. D is ashamed by the lack of films I’ve watched and makes me watch random movies with him. I google the plot, lose interest and spend the rest of the film piping up “I knew that was going to happen.” We joke about things that could happen in the future and tease each other about our past. We create completely unrealistic life plans, round-the-world trips and, when we inevitably come crashing down to earth, order pizza.

Coming up to our first anniversary I was told, by someone approaching their 30th, that these first few years are the hardest. You’re still learning how to be together and how to make it all click. Eventually being married will become second nature and it becomes easier. Easier than breathing.

Right now, whatever our future does or doesn’t hold, or whether we’ll ever actually do one of our crazy life plans, I look forward to it. Even the ridiculous films I’ll be forced into watching.

This Week I Have…

16 Jun
  • Made the most of a photo booth with my colleagues.

20130616-185041.jpg

  • Did a LOT of writing.
  • Bought two new candles purely because I liked the jars they are in.
  • Live text my way through the Big Brother launch with Phoebe and Pops.
  • Finally took the car to the car wash. I sang the song in my head the whole way through.

20130616-185401.jpg

  • Decided I need to do some exercise and looked into Yoga and swimming classes.
  • Watched Trooping The Colour for the Queen’s birthday and fell head over heels in love with British tradition all over again.
  • Spent the day on the sofa watching catch-up TV.
  • Missed my girls.
  • Started to make some plans for Hibbs Lupus Trust awareness in Leeds.
  • Sat on our window seat reading a book and listening to the rain.

20130616-185604.jpg

This Week I Have…

9 Jun
  • Celebrated with D as he handed in his notice at work.
  • Not been able to get the ‘lighters in the air’ song out of my head after hearing it on Britain’s Got Talent.
  • Said goodbye to a colleague as he moves onto a new job. We dressed him as Psy and made him Gangnam Style. The photo kind of weirds me out a bit.
  • 20130609-212021.jpg

  • Had a very giggly evening out with work colleagues.
  • Babysat for my friend’s baby boy. He cried a lot but he’s that cute I didn’t mind.
  • Collected lots of plants ready for our garden party.
  • 20130609-212312.jpg

  • Played around with some lottery balls.
  • 20130609-212344.jpg

  • Met someone who used to be on The Apprentice. They were exactly how I thought they would be.
  • Played Robin Thicke and Pharrell ‘Blurred Lines’ over and over again. Absolutely love it.
  • Felt disheartened when I was poorly as I’ve been doing well recently.
  • Had our very first BBQ in our new house/garden.
  • Played Hook A Duck and won a One Direction keyring.
  • Sold lots of cakes at our fundraising garden party.
  • 20130609-213036.jpg

    %d bloggers like this: