I finally made the decision to put my story out there, that’s if people even want to read it. I find stories like this interesting so hopefully my story will interest someone out there. I hope to help people learn about Lupus as I have unfortunately come to realise people don’t understand this disease.
I guess that’s a good place to start, what is Lupus? Lupus is an auto-immune disease. The immune system is meant to attack foreign bodies to keep you as healthy as you possibly can be. Whereas patients with Lupus have what I call a ‘confused immune system’ their immune systems go haywire and start attacking healthy tissue and organs.
Now that you have some idea of what the disease is let’s go back to June 2015 and I will begin telling you my diagnosis story. I will try to keep this as straight forward as I can.
I remember waking up early to get a train to a passport interview and my right cheek was incredibly itchy. I checked it in the mirror and I had a rash from the top of my cheek bone to my chin. I thought nothing of it and took an antihistamine and carried on with my day. As the day went by my rash got worse and I started to feel unwell, I had some aches in my legs and pains in my knees. I was supposed to go shopping with a friend after the interview but she could see I didn’t feel great and we headed back to the train station. Once there, I suddenly felt worse the aches were all over my body, it felt like I had been dipped in concrete. The knee pain was now in my elbows too. I was now exhausted, my friend encouraged me to see an out of hours GP. The doctor put my symptoms down to a virus but she didn’t recognise the rash. I went home to sleep it off. The next couple of days were spent sleeping long hours.
I fell asleep in the afternoon and was woken up some point the next afternoon from a phonecall off my mother, she was checking in on how I was doing. I admitted I felt no better, in fact my symptoms had gotten worse and my rash was still there. She was alarmed to hear I’d just woken up and told me to go see my usual GP. So, I did but my usual doctor was off so I saw the new doctor who again, told me I had a virus. I went home to, you guessed it, sleep some more.
I woke up the following day still feeling the same and my rash was still intact. At the time I worked nightshifts (8pm-8am) with vulnerable adults, I was worried about the rash, was it infectious? I didn’t know because no doctor had told me otherwise. I tried to get the night off but I couldn’t. I slowly got ready for work. I was in agony and I was feeling a level of exhaustion I didn’t know existed.
I lasted 3 hours of that shift, I now had a new symptom – a migraine. I had to walk from work to town to get a taxi, I began crying. I was crying because at this point I realised I didn’t have a virus and I felt like something was seriously wrong. I got home and sat by the toilet waiting to vomit from the excruciating pain in my head and all over my body, my cheek felt like it was on fire and my body couldn’t decide if it was hot or cold. I was on my own and I admit, I was scared.
Fed up of being told I had a virus I did what everyone tells you not to do, I put my symptoms into Google. Expecting the usual Google diagnosis to come up in the search results but it didn’t. Instead I looked at the screen shellshocked that the only search results coming up was my fathers illness. Lupus. I tried to call my mother, no answer. So I text her something pretty simple “I think I might have Lupus”. She called me the next day and agreed and told me she started believing I had it a few days ago and was planning to sit me down that day to tell me.
She came with me to the doctors the next day. Unimpressed by previous doctors I saw another one as my usual GP was still off. I said to the doctor that I keep being told I have a virus and she told me “viruses can linger for quite a while”. True, they can but I knew I didn’t have one. That’s where mum came in, I didn’t feel like I was being taken seriously. Mum told the doctor what my dad has, he also has Antiphospholipid Syndrome (also known as APS or Hughes Syndrome) which is blood clotting disease. I left with an unfit to work note and appointments for numerous tests.
Some tests would take a week to come back others 4. The first to come back was my TFT (thyroid function test) it was borderline underactive. A few weeks later I had to go back to the doctors to get another unfit to work note and I needed something stronger than paracetamol and ibuprofen. I didn’t feel well enough to get on public transport so I got my dad to take me, mum came along too. They both came into the room, I got stronger pain meds and re-signed off work. We asked if the auto-immunity tests were back, the doctor (still not my usual GP) said “yes and I think they were fine, I’ll double check for you”. I remember sitting there watching his face and he stared at his screen with a shocked look. Fine? Not at all. They were off the scale. Was I referred to a specialist? No. The tests had to be re-taken.
I got a phonecall from my doctor, it was my most recent TFT results my thyroid was now underactive and I had to start medication immediately. My auto-immunity tests came back and they were still off the scale. I was then referred to a consultant of Rheumatology, I requested to be referred to my dads consultant. It was a no brainer, my dad has been under his care for 10+ years. I waited from September-November to see him, doing nothing at all, being signed off work, sleeping and watching TV.
Finally November came around and I saw my consultant. I felt like I was talking to a doctor who was taking me seriously and really paying attention to what I was saying. I was taken into a small room to have a physical examination to check my joints, when he touched my feet he asked “are they always cold and purple?” At no point with any doctor did I think to bring my cold purple hands and feet up because for as long as I can remember they’ve always been like that. He diagnosed me then and there with Raynaud’s phenomenon. I got re-dressed and went back to his office. On his desk was a Lupus information leaflet. Here we go I thought.
He told me I had Systemic Lupus Erythematosus, I wasn’t shocked I was preparing myself for that diagnosis. What shocked me was he then carried on “you have secondary Antiphospholipid Syndrome and secondary Sjögren’s Syndrome” . I had inherited my dads illnesses and then some. I entered his room with just a diagnosis of Hypothyroidism and left with 3 other diseases. None are curable.
I sometimes wish I could go back to May 2015, where I was fine. I was working, hanging out with friends and being active. Lupus has took a lot from me, my job, some friends and sometimes I think it took me. I often miss who I used to be, it feels like an old friend I haven’t seen in a while. On the other hand it has taught me a lot, my true friends, I now understand how my dad felt all those years ago when I thought he was dramatic (I really did, sorry dad). It’s taught me that you should never take good health for granted because one day your life could be tipped upside down, just like mine. Everyday I make sure to remind myself there is people in the world fighting worse battles and to always be grateful.
I’m forever thankful for my amazing family and friends for their support and love. You are the best people in my life and I couldn’t of got through that time in my life without you. Thank you.
If you made it this far, thank you for reading. I plan to keep updating this blog with my Lupus journey.
*This was a light version of my diagnosis story, the major points are left in but if I did it in full detail you would be reading it for days.*