My Story So Far...

Hi,  my name is Faye, I'm 27 from London, England and I was diagnosed with Lupus (and Sjogrens Syndrome) 2 and half years ago.

Lupus is an auto-immune system disease where the immune system for an unknown reason becomes over-active (and a bit mental) and attacks the bodies healthy tissues, joints and organs, causing inflammation and possible organ failure.  

The main symptoms are:

Joint pain/swelling
Fatigue
Memory Loss (or Lupus Brain Fog)
Skin rashes
Hair loss
Mouth ulcers
Fevers
These are just the main symptoms but there are pages and pages...

Sjogrens Syndrome is another auto-immune system disease whereby the immune system attacks glands that secrete fluid such as tear and saliva glands causing dry eyes and dry mouth.  This condition can also cause joint and pain and fatigue.  You can can Sjogrens on it's own or it can come together with Lupus. (Bastards)

My journey to diagnosis was a long one - sadly this is all too common.  I started experiencing Lupus Symptoms around 3 years before and looking back, it was SO obvious it was Lupus, but all I was ever told was, 'It's in your head' or, 'Perhaps you are stressed?' Or, 'I think you are depressed'.  I was none of those things.

The first symptom I experienced was fatigue.  By golly the fatigue was immense (and still is sometimes).  I remember struggling to get out of bed in the mornings (which really wasn't me) I remember feeling like I was made of lead and dragging my body around. Getting through the day was like wading through a thick swamp.  It was tough.  I went to see my doctor and he said perhaps you are coming down with something.  I went back a month or so later with the same problem.  He checked my iron levels to make sure I wasn't anemic.  I wasn't.  I just had to live like this as no doctor really seemed to care enough to investigate further.

This was pretty much me for a year...

Around 6 months after the fatigue developed, I woke up one morning with glands the size of golf balls sticking out of my neck.  Sami (my boyfriend) and I were due to go Zorbing that day (when they put you in a big ball and push you down a hill) but I felt horrendous.  My whole body was aching, my neck was hurting and I felt exhausted.  I felt too guilty to cancel so I still went along.  The next day I felt even worse and had to call in sick for work.  I went to a doctor who suggested it could be Glandular Fever.  I was sent for blood tests but the blood tests came back negative.  She explained to me that it doesn't mean I didn't have Glandular Fever as it can 'hide' and she told me she was pretty sure it was.  I was signed off work for 3 weeks.


Zorbing....

Before this, I'd never really been unwell,  I'd maybe get one or two colds a year but nothing worse than that.
So after three weeks, I returned to work and I STILL felt awful.  I was tired alllll the time and just felt sluggish.  I'd also started having night sweats.  Off I went, back to the doctors.

The doctor told me you can feel unwell for up to 6 months after having Glandular Fever.  I was told the night sweats were a symptom of Glandular Fever and sent on my way.

To cut a long story short after the Glandular Fever, I had a kidney infection and was in bed for 2 weeks, I then had an ear infection, chest infection, tooth infection (which lead to a root canal) AND another kidney infection.  It was horrendous and I had so much time off work.  In the end I went back to the doctor and I said this really isn't normal.  He looked at me in my eyes and said, 'I think some of this could be in your head'.  I said 'NO! I'm never ill, this isn't right.'

He banged on about how depression can cause physical symptoms etc etc and I told him, I am not depressed, I just need someone to take me seriously.  I have been having night sweats every night for the past 6 months, I am having infection after infection and I am ALWAYS tired. I was going to bed at 7pm most nights....at 25 that aint right.

This went on for a few months until one doctor referred me to an immunologist who carried out some blood tests.  The results came back and said I had a low white blood cell count.  He told me take vitamins and get plenty of rest and eventually I'll be back to normal.  I cried.  I was so frustrated.  I knew there was more to it.  This wasn't the right answer.

around 6 months after that, I was actually feeling a little better...almost back to my old self.  I hated my current job and wasn't getting on with my colleagues - I put all my infections I'd had down to the stress of it all and decided it was time for a new job.  I wanted a change of career.  I was working in Admin and I wanted a job that involved caring for people. I found the perfect job as an activities coordinator at a local care home and somehow I bagged the job even though I didn't have any qualifications - they even offered to pay for me to do my NVQ in health and social care! I was so excited.  I handed in my notice and prepared myself for my new job.  My dream job.  And Sami asked me to move in with him! Yey! It seemed things were finally looking up.

However, a week later I got a letter from the care home saying due to unsatisfactory references they had decided to retract the job offer.  I was so confused as I couldn't think of any reason why I would have an unsatisfactory reference - I didn't get on my some of my colleagues but my boss and I had a lovely relationship.  It turned out it was due to the amount of sick leave I'd had.  I had even explained in my interview that I'd been poorly with glandular fever and had a lot of time off....I was DEVASTATED. I'd already left my other job so now I was jobless and how could I move in with Sami with no job to pay my way?  Everything was ruined.

Looking back this was a good thing because  there is no way I would have maintained such an active (and probably quite stressful) job.

So here I was on the dole...embarrassed and sad...The Jeremy Kyle Show for company.  Sami and I decided to wait until I had a job as I didn't want to live off him.  I looked for similar roles but with my lack of experience it  proved difficult.  I found another office job within a few months (a PA role in Central London) and health-wise I was doing ok.  I seemed to be over that spell of infections.  I thought to myself maybe it was Glandular Fever.  I was still experiencing the night sweats but not as frequently.  I was tested to make sure I wasn't going through early menopause and that was negative so the doctors didn't seem too concerned.

Unfortunately I hated the job, my boss was a complete moron and the only way he could communicate was by shouting.  He said he was looking to move the office to the other side of town so I decided to leave.

I got a new job soon after which is my current job (Office Manager at a local drainage company) in September 2010 and I moved in with Sami.  Everything was fine (and back on track) until around December 2010.  I noticed I started feeling really tired again and one morning I woke up with very painful fingers.  I could barely do up the buttons on my coat, I remember being at the bus stop and nearly crying with the pain.  I got to work and found typing really difficult so I went to the doc who said it was tendonitis  told me to take ibuprofen for two weeks and see how I get on.  This made sense as most of my job was typing.  Luckily it was Christmas so we had two weeks off.  On Christmas morning I couldn't even open my presents through the pain.  I was in AGONY.  Two days later, I woke up and I couldn't move.  I was terrified. The same pain was all over my body.  I thought, 'Well this can't be tendonitis, that doesn't spread?'

The next day my knees, elbows and hands were agony.  I had to put my arm in a sling because I couldn't move my elbow.  I couldn't even touch it.  I was crying the pain was that bad.  I went back to the doctor who suggested Rheumatoid Arthritis.  Rheumatoid Arthritis?? Isn't that for old people??  I had a blood test and surprise surprise it came back negative.  I rang the surgery for the results and she said 'bloods are all ok'.  That was it? No follow up appointment? I said well I'd like to see another doctor as clearly there is something wrong! How could they just leave me in this state?

I was referred to a rheumatologist (finally).  I had to answer lots of questions and have lots of tests including one called a Schirmers Test where they put paper in my eyes to see if they watered.  Anyway so in February 2011 I rang the doctors surgery and asked for my results.  The receptionist (and I kid you not) said over the phone, 'It says here you may have SLE or Lupus for short , the doctor has a put a note to say Google it for more information and please feel free to book an appointment to discuss.'

What the hell?  So, on doctor's advice I Googled it.  I was terrified!! I'd never even heard of SLE or Lupus and now I was reading stuff about kidney transplants and 5 years to live! Ohmygod am I going to die???
I booked an appointment and swiftly asked to be referred to the Lupus Unit at St Thomas' Hospital in London.  That was the best move I ever made because they are wonderful.

So once I'd seen a doctor with any sense who explained everything to me properly I wasn't AS terrified. He also explained that as well as Lupus I had Sjogrens Syndrome.  Great, 2 diseases in 1 day! It's weird but I was actually relieved.  FINALLY a diagnosis! It wasn't all in my head! I'm not mental! Everything I'd felt over the last 2 years was due to this weird thing called Lupus.  Oh and my dry eyes weren't caused my contacts.

Once I'd read about Lupus, it seemed so obvious.  Fatigue, infections, joint pain - you don't have to be a genius to work it out. Why had it not come up before?  I'd never heard of Lupus but surely the many doctors I'd seen should have known? Or at least sent me to a rheumatologist as soon as I had the joint pain.

The BEST thing I ever did was educate myself because I found the ignorance of doctors quite shocking.

So now I was diagnosed, what next?

I was told I'd have appointments at St Thomas' every three months so they could monitor my kidneys etc (the kidneys are the most commonly affected organ in Lupus) and I was told I'd probably take medication for life.  I was put on a drug plaquinil  (which is an anti-malarial and for unknown reasons helps relieve joint pain and fatigue, it also acts an immune suppressant) and sent on my way with a leaflet.  A very crap leaflet that basically just said lupus is an auto-immune condition and you can't go out in the sun. Again for unknown reasons (bloody mysterious this lupus isn't it?) the sun can  trigger a flare up and can be very dangerous.  Not everyone with Lupus is sun sensitive (I haven't experienced any adverse affects from the sun as yet).

The first 6 months after my diagnosis were OK, I was tired and had joint pain but it wasn't too bad.  It didn't prevent me from going to work or anything like that, I just sort of got on with it really.  I just kept educating myself about it and telling others too.  I wanted to spread awareness.

I continued to have good days and bad days but the first Christmas after my diagnosis I had a bad flare up.  I was in so much pain I couldn't get out of bed.  The only way I could walk was with  crutches.  This was when it dawned on me how bad Lupus could be.

Here I am in my 'Christmas Top' complete with crutches...

I found it very scary, that one day you could be fine and the next, wake up and not be able to get out of the bed.   The thought of having organ involvement or having joint pain so bad I'd end up in a wheelchair...I tried not to think about it and I genuinely believed Lupus wouldn't get the better of me.  I just thought it would be a 'nuisance' more than anything else.

My 'flare ups' got worse and more frequent, I was in more pain and hardly able to stay awake.  I told my consultant and he decided to put me on Azathioprine which is a type of chemotherapy drug which would help to suppress my over-active immune system.  It wasn't for me (I know lots of people that get on with it fine so thought I might too) but my hair went thin and I had to have it all cut short.  I also had lots of stomach issues and ended up in hospital twice so I came off that and went back on the plaquinil and something else called mepacrine which is another anti-malarial.  He also told me to take steroids during particularly bad flares (I despise steroids. See my post titled 'Steroids' for more on those)  After a few weeks of being on the mepacrine, I felt amazing - I was back to my old energetic self! I went on holiday and sunbathed (with no probs) and I had a great time, up every night till 1am and all sorts.  I thought wow, I've kicked Lupus' butt!

This is me and my friend Tom.  Here I am with the 'azathioprine hair' - it was a long blonde bob before but I had it all cut off and dyed it dark to make it look thicker...

It all changed again by this Christmas (what is it with Christmas?) I've basically been in a flare since then....Its now April.  I've put on weight due to all the steroids, I'm constantly in a 'roid rage' and it's been shit.  I've been suffering badly with the fatigue as well.  The fatigue for me is the most distressing symptom because there is nothing you can do about it apart from give in and sleep.  The joint and muscle pain has been bad too and sadly I've had to give up my job.

I just wasn't coping.  The Lupus Brain Fog was causing me to make loads of mistakes and forget things, I was taking a lot of time off with joint pains and some mornings I was just too tired to get out of bed, which sounds bad as I'm sure many people feel like that! But for me it's intense, I literally don't even have the energy to lift a finger.  So now I am going to take some time out and hopefully look for a part time job once I feel I am able to.

Its taken me 2 and half years but I have finally 'accepted' Lupus.I now realise my limitations, I expect less of myself and of others.  You learn to live with lupus and you learn to put yourself and your health needs first.  I guess you could say you learn to become selfish.

I am fortunate in that my boyfriend has stood by me through everything and been so supportive.  When we met, I was healthy and energetic, now I spend more time indoors than out and a helluva lot more time sleeping!  Luckily for me he is very chilled out and laid back so it doesn't get to him too much!

My friends and family have been wonderful and so understanding.  Well, I have lost some friends, but they obviously weren't worth my time in the first place.  You realise quite quickly who your real friends are.
I've ditched all negative people.  I've got enough to deal with.

My lovely Ma and Pa...

Sometimes I feel guilty.  I feel bad that people worry about me and I feel bad when Sami has to look after me - he didn't sign up for this! He tells me to stop being silly and reminds me its not my fault.  And that's what I tell myself.

Lupus is tough, the illness, the side effects of the medications, the range of emotions you go through, the fight between your body and your mind, but nobody said it would be easy....You just got to deal with it the best way you can.  As Liz Taylor once said - 

I used to get angry when people weren't as understanding as I wanted them to be.  I've accepted it now.  I don't waste my time on negative people.

People ask me how do you cope?  I don't really know the answer to that question...You don't realise how strong you are until it's the only choice you have.

I like to write and recently started writing this blog.  It's like a form of therapy. I also like to talk about how I am feeling.  I like to educate others about Lupus - I hope that one day everyone will have a little knowledge about it and this will help others to be diagnosed quicker and therefore prevent lupus related deaths.

My tips for people with Lupus:

On a bad day, embrace it.  Cry and shout profanities at the world.  Why not? We are entitled to be cross with the world when we are suffering.

On a good day, I do my hair and make-up, put on a nice dress and go out and enjoy time with friends and family - you might be in bed for a week afterwards so enjoy it.

Join a lupus support group and get talking to others in your situation - and remember you are not alone (even if you feel it)

EDUCATE yourself.  You might find yourself in a room where you are the only one with any knowledge about Lupus.  Spread the word.

Talk to your friends and family and let them know how you are feeling - this is the only way  they can begin to gain some understanding.

You have Lupus, Lupus does not have you.