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World Lupus Day

10 May

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.

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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.

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

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:

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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.

Lupus: Believing the hype

9 Feb

I ask a lot of questions. Always have. I was the annoying kid who’d constantly ask “why?” If someone couldn’t answer me, I’d devour book after book until I’d figured it out for myself. I also retained useless information at the drop of a hat, often coming out with some random fact that I’d read once years later. So when I was diagnosed with Lupus aged 14, I wasn’t satisfied just with a diagnosis. I had to find out everything I could.

I read somewhere that Lupus patients could expect to live ten years. That floored me. I was only 14, I had things to do. I hadn’t bought my first pair of designer shoes, or fallen head over heels in love and, most importantly at the time, I hadn’t met Westlife yet! Ten years most certainly wasn’t enough for what I had planned so I delved further into the world of medical research.

I became aware very early on that Lupus just wasn’t afforded the same detail as other medical conditions I’d heard of. In fact, very few people had even heard of it. All the information I could find seemed to be aimed at older people and/or very out of date. I’d bombard my doctors and nurses with questions and when they couldn’t answer, I started to get very disheartened. I’d rebel against blood tests and medications, partly because I was terrified of needles but also because if they didn’t know what they were looking for I couldn’t understand what good all this was going to do.

I spent the majority of my teens pretending Lupus didn’t exist and despite everything trying to maintain an air of normality. I was so independent and I absolutely hated the idea that I would simply be known as the girl who’d been off sick for months and would struggle with my school bag despite people offering to help carry it to class. But you can’t keep an inquisitive kid down for long. I decided that I had to know more and I wasn’t taking disappointing amounts of research for an answer.

We’d just got a computer and I’d spend hours browsing the Internet – do I sound old talking about the days before computers? – to find anything to satisfy my curiosity. There still wasn’t much research into “why” but I was coming across forums and communities of other Lupus patients. I knew of precisely no one with a chronic condition and although many of these people were older than me, I felt like I belonged.

I admit I became a little too obsessed with these communities and almost distanced myself from my real world because of them. I’d hardly ever post but I’d read thread after thread teaching myself how other people lived and how I was different to my friends and family because I had this illness and they didn’t. Looking back now, it was ridiculous. My friends and family would have done – and did do – everything they could to help but in my head all I could think about was how they couldn’t possibly understand.

I think that was the point when I realised I had to come to grips with having Lupus and I wasn’t about to let it get the better of me. I certainly wasn’t going to start thinking of it as ‘my destiny’ as so many posters on those forums had said it was. I’d already passed my exams and taken myself away to Uni, that letting it win now just seemed pointless. I stopped visiting the forums and I forced myself to read the real research and discovered that the whole ‘ten years’ thing wasn’t true and patients were now expected to have fairly normal life expectancies. It was the kick I needed.

I think anyone who has lived with a long term illness has asked the question “why me?” Normally the answer is as simple as “it just happens” and I’d got myself to the stage where I really started to believe that. 12 years after diagnosis, Lupus doesn’t scare me anymore. I don’t feel that it defines me, I don’t feel like I have to plan my life around it and I certainly don’t feel like I brought it upon myself due to my lifestyle.

It is for all these reasons that I feel so upset that there seems to be a new wave of nonsense coming through that Lupus is caused by the patients themselves. That it’s down to the food we eat or the drinks we consume. It breaks my heart that newly diagnosed patients will answer their own “why me” with “well, perhaps I shouldn’t have had that Diet Coke or sat in the sunshine last weekend.”

I’ve tried it all. I cut absolutely everything out of my diet and lived on nothing more than raw fruit and vegetables because I read somewhere it would cure me. Of course it’s hugely far fetched, but when you’re desperate you’ll try anything. It didn’t work for me and I actually felt worse as my medication didn’t react so well on an empty stomach! With hindsight and my sensible head back on, I can’t see how something so mainstream as diet can act as a one size fits all cure for an illness that continues to baffle many medical professionals.

I’ll still google side effects and symptoms. I’ll still devour new research and any step forward in medicine. I’m still learning but I’m still living in hope that, one day, someone will find a real life cure for chronic illnesses. And until then, I’m afraid I’ll just have to get on with it.

And honestly, those people who think I simply don’t care about the state of my health because I won’t commit to their diet plans or forego all my medical treatment for some pie in the sky idea probably don’t know what it’s really like. What it’s really like to wake up after a 12 hour sleep feeling like you’ve just run a marathon or had to deal with the sideways glances you get when you take up a disabled seat on the bus. I’d do precisely anything to make that go away and right now, my head lies with medical research. And to make the pain bearable, I’ll treat myself every now and again to something including gluten, sugar or dairy – and let’s face it, at times, all ruddy three. Just exactly what are you going to do about it?

That embarrassing moment when…

19 Dec

Living with Lupus is, at times, frustrating. It’s often painful. But the one thing I dislike more than any of these things is that it’s embarrassing. I’ve lost count of the amount of times I want to hide my head under the duvet and forget what’s happened.

I fainted on the bus once, during rush hour on the way to work. I had just enough time to inform the girl stood in front of me that I was going to faint and my medical details were in my bracelet. I came round to an empty bus with people staring at me through the windows like I was a goldfish in a bowl. I heard the bus driver on the phone telling someone I had ‘Lupo’ – I think I rolled my eyes – and then the next time I woke up I was in an ambulance winging my way to hospital.

I fell down some stairs carrying a tray full with cups of tea as my ankles gave way and I tumbled to the bottom. It was the shock more than the pain but I was sat at the bottom of the steps in tears wondering how on earth I was going to talk my way out of this one. That was nearly five years ago, and the tea stains are still on the walls.

I had to have the light bulbs taken out of the ceiling lights in the office as the glare was making me sick. I even had to sit there wearing sunglasses to ward off headaches. My colleagues said they didn’t mind, but I felt ridiculous.

I’ve been sat in a wheelchair in hospital waiting rooms after telling both the porter and the nurse that I was going to faint. They told me I’d be fine and then I blacked out right in front of everyone, pretty much falling out of my wheelchair and everything. I don’t do things by halves, that’s for sure.

Another time, I had to be carried out of the office on my chair as every time I stood upright I fainted. I was laid down in the back of my bosses car and carted off to A&E. I then spent the next few weeks hooked up to all manner of things on the ward.

I’ve missed friend’s weddings, had to leave my own graduation early and left important people waiting as I’ve had to miss meetings at the last minute.

None of it is fun. I laugh about it because if I didn’t I would never want to face the world again. I hate the thought that some people will only ever have these memories of me. For months after the whole bus incident, I deliberately got on a later service so I wouldn’t bump into the same people again. We moved house shortly after that – totally unconnected, promise.

I will always say silly things and realising after the words have come out that I probably should have engaged my brain first. I will always be the first one to demonstrate my knowledge of 90’s boyband dance moves and bop around at my desk to Christmas songs every year. But making a fool out of myself whilst having fun will always be part of who I am. It’s the making myself look ridiculous without having any control I object to.

I’ll continue to blog all my embarrassing moments in the hope it makes other people feel like they’re not the only ones fighting with a body that has a mind of it’s own. And after all, what’s life without the odd slip up to make us realise that, quite frankly, if it were easy it would just be boring.

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From the clinic frontline

3 Dec

In the days leading up to an appointment with my consultant I can feel myself getting a little bit tense. Every little niggle I start to read more into, wondering if it’s going to turn into something massive before my appointment resulting in a medicine increase or a whole heap of tests. Sometimes I’ll even dream about it and end up convincing myself it’s all going to go horribly wrong. I have no idea why. I’m usually in the ‘what will be, will be’ camp and leave it to chance, but there’s always that small chance that it’s not going to go how I’ve planned it in my head and I suppose that concerns me.

The last time I had an appointment with the consultant was before the wedding. Things weren’t great but looking back, I feel a lot of that can be put down to stress. Planning the wedding, lots going on at work and generally trying to be in too many places at once. I suppose my body was suffering and I’d kind of put my health on the back seat to make sure I got everything else done. I know, I know, when will I ever learn? They dosed me up with some steroids which put me in great shape for the wedding. And, I imagine, the adrenaline and excitement would have kept me going on the day anyway.

I’d managed to convince the team back then that I’d consider a change in medication when I returned from my honeymoon in September, bearing in mind the medication in question was the exact one I’ve been avoiding for years. Whilst we were in America, I developed a chest infection which I managed to reassure myself was just a cold from the air conditioning. If I have a skill, it’s probably all this convincing myself and others I do when it comes to my health. On our return it quickly developed and I ended up back in hospital with suspected pneumonia. I do not do things by halves it seems. But whilst all this was happening, and I was being shipped from A&E to medical assessment and back again, all I could think was that I didn’t want my consultant to find out that I was poorly as it would just give him a reason to stick me back on the dreaded medication I’ve been avoiding all these years.

Success! I don’t believe he ever really found out. I gave myself chance to recover – fueled by a double dose of antibiotics from the lovely hospital doctor – and then I was back to work and feeling back to myself again. And then, a month later, I had my scheduled clinic appointment.

So two weeks ago, it was off to the clinic with me having worried myself silly that something was wrong thanks to a niggling pain in my chest. And what do you know? It was all ok! The scans and blood results they’d taken at the hospital during the pneumonia episode were replaced with pretty normal results – well normal for me, let’s not get carried away! My consultant waltzed in with a group of student doctors to say how pleased he was with how I was doing. I could have cried with happiness. It finally felt like there was a light at the end of the tunnel. The last time I had an appointment quite so positive was years ago and the next step was remission.

We’ve reduced my steroids, which is a big deal for me. I’ve been on a similar dose for nearly 4 years so I am desperate to get off them and give my body chance to recover from some of those nasty side effects that have taken hold. And I am so excited to start living my life as a normal 26-year-old newlywed feeling like I can achieve anything.
I’ve never been down about having Lupus for long. Yes, I have my moments where I feel sorry for myself but I’ve never let it really change what I do. However, I think subconciously I sometimes plan my life around it. And just this one positive appointment has got me wondering what life would be like if I didn’t have to anymore.

There’s still a long way to go. I’m not counting my chickens just yet, because if I’ve learnt anything in these past 11 years it’s that Lupus can be unpredictable. But nothing ever went wrong with a little bit of positivity, right?

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