I am Nikki, aged 32. Crafter extraordinaire, lover of percy pigs, big foodie, doctor and 8 years into my lupus diagnosis. Basically, I’m learning to live my life despite lupus.
My story started during my first year as a junior doctor. I had graduated about 8 months previously, was working all sorts of different shifts and my body was just exhausted. Running has always been my stress relief, so when work got tough, and trust me it did, I would put on my trainers and pound the pavement. At the time, I was also training for another marathon so of course my knees hurt. I remember sitting down with my grandma and her telling me to get someone to look at my joints but I brushed off her comment.
August is notoriously a busy month for doctors all over the UK. It was no different for me, except I had a hot swollen ankle and a weird rash that just wasn’t getting better. At this point, I was working in A&E and one of the senior consultants commented on my limp and suggested that I booked into A&E as a patient and get things looked at because I didn’t look well. I was admitted to a ward because lots of things were not right with my bloods. When I got to the ward, I was finally honest about all the symptoms I had been experiencing over the last few months – all those ones that I kept brushing off just because I was crazy busy.
After a week in hospital, I was watching ‘Come dine with me’ when one of the doctors came over and said “Nikki, you have lupus”. This was a complete shock to me, lupus was not even on my radar. I was just expecting them to tell me that everything was fine now that I had had some rest and time to recuperate. Someone had just pulled the rug out from underneath me, I can’t tell you how I felt, because I had no feelings. I was in total shock.
As a doctor, most people assume that you know everything there is to know about the human body and any illness. I wracked my brain and could only think about one lecture that briefly mentioned SLE during my 5 years at medical school. I even went back to look at my finals revision notes to find that I did make a flash card about the disease, but it didn’t tell me much. “Management – treat the symptoms, immunosuppression required in severe cases”. I felt like I had been handed a death sentence just before my 25th birthday. How on earth was I going to be able to continue being a doctor with this happening?
The next few months were a bit of a whirlwind, I still don’t think I believed the fact that I had lupus. I did go back to work and found it tough trying to find my feet as a new doctor and come to terms with the new diagnosis. My work was incredibly supportive as I started and stopped lots of medication and needed time off for appointments. I was quickly highlighted to occupational health and they helped structure my rota so although I was doing the same number of hours, they were in a more predictable shift pattern and I worked fewer days in a row.
The next big blow came about a year later when we realised that my kidneys were showing signs of damage, I was leaking protein into my urine. This meant that we had to have a rethink when it came to treatment, I was already taking hydroxychloroquine, mycophenolate and steroids.
Again, life was busy and I did not have time for this. I had a kidney biopsy and then we started rituximab, this wasn’t a medication I knew a lot (or anything) about and was pretty scared of it when it was described as ‘the big guns’. Thankfully, that settled things for a while but I then had another renal flare approximately 9 months later and after another kidney biopsy, we opted for cyclophosphamide.
Running alongside my lupus story, is my story of hospital admissions for other reasons. The medication needed to keep my lupus quiet, also dampened down my immune system, not great when you work in a hospital full of sick people. I caught (and still do) every infection going, your typical person in their twenties might be a little unwell for a few days and bounce back, not me. I would always end up in hospital and on a few occasions, I was poorly enough to be in intensive care. We hear a lot about sepsis on the news and on social media and know just how deadly it can be. In the medical profession, we have specific targets we must hit when we think that someone might have sepsis, I am terrified to say that I have suffered from sepsis on a number of occasions. This has had a massive impact on my mental health because I’m now petrified of hospitals – or more specifically, being a patient in a hospital, I still won’t set foot in the ICU where I have been admitted.
Perhaps the most devastating part of my story – for me anyway. Was when I started to develop hip pain aged 28 which was different to my usual lupus joint pain, it was niggly and it would wake me up at night and nothing made it go away. When I mentioned this to my rheumatologist, she was concerned and referred me to the orthopaedic surgeons.
An MRI scan confirmed her suspicions, the steroids that I was taking to keep SLE under control, has caused avascular necrosis of my hips, essentially, they were crumbling away. The surgeon told me that I would eventually need two hip replacements and that I would be a fool to continue running. I was absolutely devastated, this was probably one of the lowest points of my life, running was my therapy and I needed it.
Someone at work reminded me about how creative I am and suddenly I remembered the sewing machine that was sitting in my cupboard. I dusted it off and soon realised that it provided a similar outlet for my stress as running, but instead of being hot and sweaty I had a new garment to wear! A few years later, I have pretty much a whole me-made wardrobe and love the fact that no one else is wearing the exact same dress as me! Sewing was now my therapy, along with knitting and crochet and papercrafts when my hands were behaving. The only frustrating thing about making my own clothes, is that my body shape changes depending on what dose of steroids I am currently taking. I guess I at least have the skills to alter my clothes rather than having to buy new things in every size!
Everyone who knows me, comments on my positive mental attitude, my glass is always half full, even when it is empty. Yes, I have been dealt a rubbish hand when it comes to my health, but at least I wake up every morning and there have been moments when I’ve been in resus or ICU wondering if I closed my eyes, would I ever open them again.
Chronic illness makes it so hard to believe that things will be ok, but they will. Getting to this place of acceptance hasn’t been easy and I still don’t ever view myself as someone who is ‘sick’, just someone who needs to manage their lifestyle a little differently to most. Lupus isn’t all sunshine and rainbows, but I have learnt that it isn’t the death sentence I thought it was.
November 2022
