On the 20th July 2012 my 14th birthday I started to get really bad pains when I breathed/sneezed/yawned/laughed. I was away with my nan on one of her Bowls holidays and I a go at playing. It was on the final night of the holiday that I started getting these pains when I breathed in and me being a young just turned 14 healthy child surrounded by all these older people who had aches and pains of their own, I bit my tongue and smiled my way through the night. Fast forward a couple of weeks and I’ve told my mum and dad about these pains at this point, so mums booked me a drs appointment and dad has told me there’s nothing wrong I’ve just pulled a muscle from playing bowls. At this point the pain has increased I’m only taking short breathes, I learnt how to not sneeze, yawn and definitely not laugh. I went to the doctors and one of the first things they said to me was “it could be lupus, but then again you’re too young for that. So we won’t test for it”. I would just like to point out in this moment that Lupus can effect anyone of any age. However It mainly effects women of child bearing ages from 15+. I was one year younger than that age. Anyway carrying on, when I went to bed I had to find a comfy position so I could breathe normally and every night I would wake up and not be able to get comfy again so I’d wander the landing whimpering and crying about being in so much pain but not wanting to disturb anyone but also wanting everyone to wake up and take this pain seriously, I ended up having to sleep sitting up in a corner leaning against a pillow, it was the only way I could fall back asleep. Fast forward again a couple of months to end of October, I think I’d been tested for pretty much everything possible except for lupus. They finally after almost 4 months decided to scan my lungs. To which they found multiple blood clots on my lungs and it was extremely serious. It was then that they did the lupus test and found that I had SLE and APS. I would just like to say at this point I was only aware of the SLE. I was immediately referred to see a rheumatology dr and the haematology dr, I was but on Hydroxychloroquine by my rheumatology dr and Warfarin and Fragmin injections by the haematology clinic. For a good few weeks I was making daily trips to the haematology clinic to check my INR it then turned to weekly when my INR was put in a range of 2-3 and I was taken off of the Fragmin injections. The clots had finally gone away. And I was back to full health but left with an illness that no one knew about and so I felt very isolated and alone. I would play down the symptoms I was experiencing daily as no one around me knew what it was like to live with a chronic illness. So it was a very lonely period of my life.
In between 2012 and 2015 I started to fully get symptoms of lupus. I started to get really bad joint pain the worst of this was when I woke up one morning before school and I couldn’t move cos my hip was in so much pain. This does still happen occasionally but I just need to take pain killers and it can usually help.
Moving on to the end 2015, I’d left secondary school and I was working as a horticultural apprentice at a garden centre. I had been put onto Rivaroxaban in replacement of Warfarin. I started to get twitching movements in my right arm, I thought nothing of it at first I carried on with my life as usually over the next few months and into 2016 the movement I was getting in my right arm was worse than ever I had no control over it and my speech started slurring and my right leg had started moving involuntarily. I was signed off work and was undergoing tests left right and centre to try and figure out what was wrong with me, at first they thought it was a stroke so I was referred to a neurologist where I underwent numerous MRI scans and CAT scans but everything was coming back clear. I went back to my rheumatology dr and was told that I had something called the Chorea movement. This is a flare up of lupus, I was put on Quetiapine which is an antipsychotic drug and this suppressed the part of my brain that was telling my body parts to move and my speech to slur. By June 2016, I was back to full health and back working again and was taken off of the Quetiapine.
In this time also I was having double vision with my eyes. We think it was part of the chorea and I went to plenty of eye drs but nothing. I still occasionally feel the pressure of it on my eyes but it did slowly fade away in the end. But I’m still not 100% sure what that was as it was never confirmed.
Moving on to 2017, now this next part I literally just don’t talk about because I find it very embarrassing but to be honest it was one of the scariest months of my life. In July I had been put on Sertraline, the Antidepressant. I was at a very low time in my life, and this was helping. Moving on to September of that year, being completely honest I also have PCOS (polycystic ovaries syndrome) so I never know when my periods are gonna come and I usually go 2 months between them. So basically I started my first period since going onto Sertraline at the beginning of September. To cut a long story short, I bled for 4 weeks constantly and extremely heavily. I remember my mum and dad were away for the 1st 2 weeks and it was when my mum came back that I told her that I was worried because it just didn’t seem to be stopping, at this point I was very tired and had very little energy. A week later it was still going on but me and my mum had way before planned to go pick my brother Stanley up from Paris where he had spent a year as a cast member in Disneyland. 2 days before this trip I was sent home from work as I just wasn’t ok and my manager (who is luckily my bestie Lucy) saw this. However this didn’t stop me from going on this trip with my mum. On Thursday 28th September me and mum travelled to Paris by car I pretty much slept the whole way, we got there late at night so I basically just got out the car and then got into bed at the hotel and slept the whole night through. The next morning me and mum went off to spend the day at Disneyland Paris as Stanley could get us in for free, we went to Hollywood Studios where Stanley was and when he was on his break we went to queue to go on Crush’s Costa, we went through the backstage area and as we were 3rd in line I suddenly became really sick and dizzy. I turned to Stanley and I think I just looked at him ran back the way we came and threw up in the backstage area, and went back outside to meet my mum. It was this moment I knew I seriously wasn’t ok. We carried on though and we stayed there for the entire day, I ended up in a wheelchair and I only went on the Pirates of the Caribbean ride but all in all I still had a really great day being surrounded by the Disney magic.
I can’t really remember the next day I had very little energy left and just know that we went shopping and i got the cosiest trackies and slippers.
On the Sunday we came back home. I have flashes of what happened in this journey and my mum has always told me it was the longest and scariest journey. We had to make a detour on our way home to drop Stanley off at Warwick where He was starting Uni, I remember just sleeping the entire way. I literally had no energy I was so tired and felt so ill. I remember having to get out of the car so that they could unpack all of Stanley’s stuff but then I carried on sleeping. I vaguely remember waking up when it was just me and mum in the car and saying “don’t take me to a&e, just take me home I’ll just sleep it off”.
Next thing I know we’re at the JR, mums telling me to get out the car and go book myself in she’s just going to park.
I didn’t make it to the reception, mum ended up finding me in the ladies bathroom. I can’t remember how long I was waiting in a&e for but I remember just wanting to lay down and sleep. They kept on taking me into rooms and getting me to lie on the bed so they could review me and then send me back out to sit on the chairs back in the waiting room.
The 3rd time they did this I remember just thinking fuck off and let me sleep, I closed my eyes and he was like ‘ok you can stay there’.
That night I was admitted to hospital and proceeded to have 2 blood transfusions, they immediately stopped my blood thinners and was taken off of Sertraline as they believed that this had interacted with the Rivaroxaban and caused this to happen. I was in there for around a weeks time until I started to feel a bit more lively. It took me around 3 weeks to fully recover. I was now completely off of the Sertraline and they changed my blood thinners to Apixaban.
I’ve never said this to anyone, but this scarred me really badly and still does to this day. The fear I have whenever my period comes around and is really heavy. It stops me from doing anything, I panic constantly and for the week it goes on for my anxiety is sky high. I panic if it goes on for a little to long or if it doesn’t look to be slowing down. I remember the time I was literally knocking on deaths door, and makes me really emotional every time I think about it.
On the 3rd January 2018, I was at work which at the time was in a restaurant so lots and lots of walking around and long hours. I was half way through a 12 hour shift just finished my lunch break and went back to work when I suddenly started to get cramp in my calf on my left leg, it would build up after I’d walked a while and I’d ignore it and it would eventually become unbearable and I had to stop what I was doing and wait for it to go.
This went on for 2 weeks before I was adamant that something was not right and I believed it was a blood clot, I’d had a previous clot so I knew what it felt like. My mum took me to minor injuries in Abingdon and they refused to review me because I wasn’t injured. They booked me an emergency appointment with my GP and we went straight there, I went in and I said to them I think I have a blood clot in my leg. They asked me a number of questions and did a Doppler test on my ankles to test if they could hear my pulse. They could. The dr turned to me and said you haven’t got a blood clot we can hear your pulse fine, you’ve probably just got a sprain and should be fine in 8 weeks time. 8 weeks come and go and I’m still in absolute agony when I walk, I’ve been diagnosed with social anxiety anyway so social situations become non existent because i became so terrified of having to tell people I needed to slow down or stop completely that I didn’t got out. I carried on working and bit my tongue and got on with it because that’s what you gotta do! I went back to the drs after 8 weeks as I was still getting cramp when I walked a short distance. I go through a Doppler test and they are now struggling to find my pulse in my left ankle. A week later I get a call from the Dr to say that they are referring me to the Vascular unit at the John Radcliffe. My appointment was booked for the 18th April but was cancelled and they had scheduled a new appointment in May. I couldn’t make this appointment as me and my eldest brother Will were going away for a month from the 10th May – 10th June to travel round Europe. I tried to get an earlier appointment so that I could be well for the trip but this didn’t happen. The week before we went away I went out for dinner with my parents and when I came home I started to get a dead right leg and after about 20 minutes it finally went away. The next day at work I found that I was no longer getting cramp in my left leg but I was getting it on my right. I carried on as I would as I was going to see a specialist after I got back. This trip was the best month of my life and despite being in agony I took plenty of codeine and powered through. I think this was the first time I didn’t let Lupus/APS flare up win (at the time I didn’t know it was a lupus thing but still) but usually I whole myself up and become very depressed (even more so than usual). But this time I was outside every single day and night and getting fresh air constantly. I got back on the 10th June and my appointment wasn’t scheduled until the 18th. Me and my sister Annie went to see Ed Sheeran at Wembley stadium on the 15th, coming out of that show I think it was the first time in the 6 months I’d been experiencing this pain that my sister actually realised how much agony I was in. We were walking back to the station I was powering through and pretending I was fine and speed walking, I just couldn’t do it I was on the verge of bursting into tears and sobbing and Annie looked over at me and she made us stop.
At my appointment with the consultant on the 18th he performed more Doppler tests and he came to the conclusion that I didn’t have a blood clot everything felt and sounded fine. He was going to set up a scan for me just so they could look at my veins and arteries but he was 100% positive that the scan results would come back clear…
Fast forward to the 10th July, 3 days before I was due to have the scan. me and my brother Stanley were going into Abingdon to do some shopping, we’d parked on the 3rd floor of the multi-storey car park. We got back to my car after walking up 3 flights of stairs and my right leg was fully cramped up I sat in the car and said to my brother that we’re gonna have to wait I need to let my leg to stop cramping. A couple of minutes turned to 5 and it still wasn’t going if anything it was getting worse. I’d gotten out the car tried walking it off, taken my shoe off but none of this worked, I was in complete agony I turned to Stanley and told him he would need to drive us home. I remember sitting in the passenger seat of the car with my eyes scrunched shut because I could feel tears coming but I just breathed through it, we finally got home and I hopped over to the sofa and as soon as I sat down I lead there and just remember letting out a huge wail of a cry and continued to cry my eyes out. I was in so much pain Stanley called my mum and dad and they came home from work. I remember thinking I can’t see an end to this pain, I was so scared and I was even begging everyone to just make it stop. I was vomiting because of how much pain I was in.
The only way I can describe this pain is imagine getting cramp in your calf muscle, and imagine it not going and getting more and more painful, that’s what it was like.
My mum had rang 999 and an ambulance was on their way. They finally got there and they ran some tests on me and took me away to the hospital. I can’t remember how long I was waiting in A&e before a dr saw me but I know before they did I had a cat scan of my legs, I was wheeled into a room where the on call vascular dr told me I had 3 clots in the arteries in my legs. One on my right groin, one behind my right knee and one on my left groin. I was being admitted to hospital and needed emergency surgery to take the one out of my right groin. The next morning I was first on the table. My mum was stuck in traffic trying to get to the hospital and I was sat in my room with all these drs and nurses coming in drawing on my leg about what they need to do. I remember being absolutely terrified that I wouldn’t wake up and that I’d die without telling my family how much I love them. This without a doubt was the most terrifying hour of my life. Not even 5 minutes before they take me down my mum walks through the door and although I was terrified of what was to come I’ve never felt so much relief.
The surgery luckily went really well. Later on that day they do a few more scans on me so they can figure out where these clots have started. They did an echocardiogram on my heart and saw something there but couldn’t get a good look at it so they decided to look at it with a camera. I was heavily sedated so I would fall asleep and they could stick a camera down my throat. Knowing my luck of course the meds wore off 5 minutes to quickly and I woke up whilst they still had the camera down my throat. Was a very panicked experience and I think my throat was cut up for about a week afterwards.
As a result of this scan they found a massive clot on my heart. At this point I was having infusions of heparin and was back on warfarin. Trying to get these clots gone.
I was in hospital for 16 days, one of which was my 20th Birthday. I spent 6 days in the vascular ward and 10 days in the heart centre before I was finally given the all clear to leave. This isn’t where this story ends though, I was still getting cramp in my right leg so In January 2019 I had minor surgery under local anaesthetic to sort out a narrowing in my artery behind my knee. I’ve also been left with scarring on my heart from the blood clot and will need to have my aortic valve replaced at some point in my life.
Once my right leg was sorted and the cramp was no more I realised that my left leg still was cramping up. I went for more scans and it was confirmed I needed major surgery again to remove the last clot.
I went in on the 6th of November 2019 and was out by the 8th. Surgery went very well, I also can’t thank the nurse who was on every night I was there enough for how much she got me through, I was very distressed for the time I was there and she was an absolute godsend to me!
I had a very tricky recovery from this op I was signed off for 2 months in total as my wound became infected.
I’m now happy to say that I’m fully recovered and in no pain!