World Lupus Day 10 May 2021: Living with Lupus

I'm going to tell my story. It's been 20 years. 20 years with Lupus... I've lived with it for over two decades, and I'll be honest, despite it feeling like the absolute worst thing to happen at the time, I wouldn't be the person I am today if I didn't have it. It sounds funny, and maybe ridiculous to say... but it's true.

For those that don't know. This is what Lupus is.

Systemic Lupus Erythematosus (SLE), is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. To keep the description simple, if a Lupus sufferer gets a cold, their body would inadvertently attack their organs (mine is my kidneys) rather than the cold. SLE is one of several diseases known as "the great imitator" because it often mimics or is mistaken for other illnesses. Diagnosis can thus be elusive, with some people having unexplained symptoms of SLE for years.

So anyway... My story. Here goes.

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Lupus first reared its ugly head when I was about 10.

I went on holiday to La Manga, for a tennis holiday, and a few days in, my face started to blister, nasty, sore pussy blisters that cracked whenever I moved my face... It scarred my cheeks, to the point where you can still some of the scars now, even 20 odd years later, and it made a lovely holiday a bit less enjoyable. But anyway... I got these blisters for no reason. Or at least none that I understood. Because I'd been on loads of sunny holidays before this, when I was younger; we went on one every year from when I was about four or five, and yet why was this holiday any different?

I read somewhere that Lupus gene markers can remain dormant, sometimes for your whole life, and then it is 'activated' by some kind of period of high stress... which, in turn, sparks off all kinds of havoc on your insides. This is how I think mine was activated... I got really bad food poisoning on a school trip when I was about 9 or 10 - Campylo Bacter (one down from E-coli) - and I think the stress on my body of having nasty food poisoning for a week caused my Lupus to activate... manifesting in a nasty, blistering butterfly rash on my face.

Dad took me to the doctor in Spain, and as you know what he said? 'No sol.' No sun. So that's what Mum did - it's what any parent would do. She kept me inside for the remaining days of the holiday, as much as possible. I was put in a big shirts with collars, I had to wear hats, I was put under an umbrella, smothered in factor 100 suncream, I wasn't allowed in the pool in the day - then no one wanted to go in the pool later - and it pretty much made the best holiday ever turn into the worst holiday I'd ever experienced. (That said, blisters aside, I did still have fun.)

Anyway, so when we got back, we explained to the doctors at Whipps Cross what the doctor had said - no sol - and how it had actually helped. So, next thing was the doctor took a biopsy of the nasty rash that had now appeared on both of my arms, and sent it off for testing. A few weeks later, I was diagnosed.

Now, I was lucky my diagnosis actually came relatively quickly - in only a few months. Sometimes, because of the number of symptoms Lupus has, it can be incredibly difficult to diagnose. I've spoken to people who had three-year periods where their Lupus went undiagnosed, which caused health problems to worsen as the body keeps attacking the wrong thing, as the Lupus is left unchecked. Each patient is different, and with there being 2 types - Discoid (which affects skin) and Systemic (which affects skin and internal organs) - it can manifest in so many different symptoms for different people... with some not even showing any signs other than intense tiredness.

Anyway... back to the awkward tennis-loving 10 year old who had just been told she must avoid the sun as much as possible, wear long sleeve shirts and wear suncream every day of the year (even in winter)... Well, to put it bluntly... I thought my life was officially over, and that this diagnosis was essentially a death sentence. The word 'incurable' and 'terminal' were thrown around, and at 10 or 11 years old, that isn't what you want to hear. Sure, I was young, but I was old enough to understand what it meant.

At a young age, I was put on steroids to help with the immunosuppressants, and I went through quite a few other medications before I thought I found the right medication. To name a few: Hydroxichloroquine (which I am technically still on, even after like 20 years), Thalidomide, Mycophenalate Mofeteil, Omeprazole, Prednisolone, Azathioprine, and finally Retuximab.

You might recognise some of these. Thalidomide did well for me until doctors noticed it was affecting nerves in my legs. Thalidomide has left me with random twitching when I sit still for too long, some of which can be quite painful at times. Prednisolone, which is a steroid, was the worst. Steroids in general are the worst. In both boys and girls, steroid use can halt puberty, which can mean that you don't grow any taller, and for girls it can delay when you get your period... if you get it at all. (Incidentally, though, they can also make a girls' voice lower... which would actually help me out later when I started singing :p - silver lining and all that I suppose.) But Steroids also essentially make you pack on weight without realising, and going from a very active tennis-playing 10 year old to an inside-dweller, plus eating more, I went up a couple of dress sizes, so my already-low self esteem dropped even lower. But the worst part was that, with this diagnosis basically coming at the start of secondary school, and with the body of a teenager always changing, even for the best of us, it seems I was in for a bit of a rough ride.

At school I had to wear trousers in PE, even in the summer - although it was a godsend in the winter - I got burning face pain (the only way I can describe it as if thousands of people are poking tiny needles into my cheeks) even in the dead of winter with the sun behind the mist... and that's just skin. When I was 12/13 I had such bad rheumatism in my joints. I remember a 2-day period where any kind of movement was absolute pure agony. Mum had to help me get dressed because she could force my arms and my legs to move. I was basically crying for 2 days. I got a nasty, itchy rash on my face, my stomach, my thighs, my arms... literally all over, and nothing seemed to be working. Prednisolone wasn't working. All it was doing was making me hungry, making me pack on weight, and making me less active than I'd ever been when I was a kid... not to mention my hair started falling out by the brush full, and I genuinely thought I'd end up looking like Gollum. But what really was the worst part was that I went from loving the outdoors to basically fearing it... something which had never happened.

I ended up in hospital when I was 12 with my first flare up. Anyone who has not experienced a hospital stay will never understand how scary it is, especially for a child. I was in a teen ward, even though I was barely 12, and I had kids that were screaming into the night, and I had never felt more alone. I'd never really spent more than a night away from my parents and my family at that point either, and then all of a sudden I was then away for a week - you can imagine I was terrified. My dad stayed the first night, but the bed was so uncomfortable, his back was bad the next day, so the next night I was on my own. Mum came every day, but couldn't stay forever, and I remember I nearly cried when other people - my friends Abi and George, and their mum Maggie - came to see me. I hadn't been expecting it either. Now that I'm thinking about it, I did cry.

But then, fast forward a few years... let's say from Age 13-18. I try to get on with my life, and enjoy it. I had a few set backs... I had a spot that got infected and spread a nasty, crusty rash up my face, up towards my eye. It took a chunk out of my nose and left a scar under my eye, with the doctor saying it could have caused blindness if it had spread any higher. I've had a few nasty stomach bugs which I couldn't shake - the joy of immunosuppressant medication is that when you do get sick, you have no immune system to fight it - along with relentless coughs, and my fair share of colds. But I got through it. I finally got on the right medication, mostly, and it seemed to be doing the trick... and for years I thought that maybe I had beaten it. That I was in remission.

Anyway... fast forward a few more years. Age 18. And I got my first taste of the wonder drug, Retuximab.

Because of how much my symptoms weren't physically representing themselves - I would have no rash but yet blood tests would show up that the Lupus was well and truly active - I was put on a Retuximab trial. Quite exciting. And I had my first round of Retuximab in my Easter term at of first year at uni (so Mar 2011) which mercifully allowed my uni years to be full of fun... I went to America, I met some amazing people, I travelled quite a bit and I had fun with my friends in Hull because I finally felt like I didn't need to worry about my health. Sure, I still had the check-ups every 4-6 months, but each subsequent 'normal' result on my blood tests filled me with confidence. BUT (and there is always a but) as Retuximab is an infusion, not tablets, you have no idea when it's going to - for lack of a better phrase - 'run out'.

And I think you can sense where I'm going with this can't you.

2015, I had another flare up. A pretty nasty one.

I'd started my new job at ABP barely 3 months before it happened, so I was still on probation, and I began feeling horrendously tired, like, ALL the time. When it first started happening, I thought it might be because my body just wasn't used to being 'on' all day in a job... but then the tiredness got worse. I could barely go an hour without needing tea, or coffee - which never happened before - and I would fall asleep on the train home. On the weekend I would then sleep for hours, and it still didn't feel like enough. A few days later, I got a rash (picture bottom left below) - a really itchy rash on my face and on my stomach, and then big blister-like spots on my hands, which I knew was a sign of my Lupus being active.

I sent an email to my doctor and thankfully I had my check-up a few weeks later, so I hung on until then, just drinking as much caffeine as I could to stay awake during the day. And at the doctors appointment, it showed the worst. My Lupus was active again. In the most horrendous way.

I went for an emergency blood test the next day and it confirmed that my platelet count in my blood was so low that, if I did cut myself, I wouldn't clot, and I would essentially bleed to death. Not very fun to hear. A normal platelet count for a healthy adult is around 140-400. A low platelet count was anything between 30-50. Mine was at 12. Which is dangerously low. Thankfully, I'm not accident prone and I have good coordination, but still... when someone says to head straight to A&E for any cut, even a paper cut, you can't help but be a little freaked out.

So I was booked in for round 2 of Retuximab, as it had worked so well last time. I had 2 lots infusions this time, one in February 2015 and then other in June 2015... and *TOUCH WOOD* I've been okay since then, with the Retuximab doing its job for now. But I am always mindful, and I'm always as careful as I can be.

But after all those things have happened to me, and I've pulled through, I've decided not to take my life for granted. I'll never know if I won't have a flare up ever again, or if it'll be next week... I just don't know, but I'm not going to live in fear of it coming back. I know what to do if I have a flare up, so there isn't any need to be overly cautious about it, other than obviously taking medication or being careful in the sunny weather, wearing sunscreen and a hat if it's really sunny. You learn to live with things, and I've learned to live with Lupus. I win some days, sometimes I feel like Lupus wins, but what matters most to me is that I keep smiling, I stay positive and I keep my head up high, not letting it get me down, and I live my life how I want to live it.

Below are some pictures... I don't actually take many - and the ones when I was younger are all physical photographs - but I do try and spread the positivity when I can, and spreading awareness about Lupus.

1 - me age 8/9... pre Lupus. I am brown, happy, thin, not worrying about buttloads of peanut butter on my toast, fresh back from a holiday in Florida with no skin issues.

2 - me age 12/13 - post Lupus diagnosis. You can see the nasty rashes it left on my hands, and I was always put in long sleeve t-shirts.

3 - me age 12/13 - after a tennis match with Dad on holiday in Normandy. You can see the full extent of the rash on my arms here, and you can see my puffy cheeks from the steroids I'd been on... The. rash was so itchy. I used to scratch it till it bled sometimes.

4 - me age 22/23 - just prior to Lupus flare up 3 and hospital stay for Retuximab dose 2. The rash on my face itchy as hell, if I remember correctly; still smiling though!

5 - what a vaguely 'kind' rash looks like on my arm. This is usually the first sign I get, a warning my body is telling me to get out of the sun... If the rash persists, it usually means my Lupus is flaring.

6 - what an IV infusion looks like. It's not as scary as it looks. It entails you sitting in a chair all day, and it EXHAUSTS you. On both doses, I slept all the way through and most of the next day. You feel a bit groggy afterwards, but given I haven't had a flare up in nearly 6 years, it can sometimes work wonders.

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So, that's my story. Or rather that's what's happened so far...

This is an Instagram post I put out on Monday, which was World Lupus Day 2021. Spread the word!

Stay positive Lupus warriors. Big love to everyone!