Living with Lupus

In 2012, I was working full time as a police officer in the Metropolitan Police Service. I had just turned 30 and had spent the summer having fun with friends. I was healthy and active. I ate well, worked hard and enjoyed life.

I was rarely unwell and loved life and keeping busy and having fun!

Getting fitted for level 2 uniform.

I started to feel really tired as the summer came to a close, I had a niggling ache in my arms and working night shifts was taking its toll on me. I knew that I wasn't quite myself.

Over winter I started to feel worse especially when I was patrolling the streets of London on foot. I felt like the wind was damaging my bones, and I was constantly sleeping.

By 2013, I had realised that something was not right, as I could barely lift up my arms to take off my clothes at night. I still kept active and even did a 10-mile run in Nice, France. I noticed on the way over there that my ankles had swollen up, and after the run I could barely walk for a week. I finally gave in and went to the GP.

The GP did a blood test and said my sore arms could be muscle strain. The blood results showed that the level of protein in my blood was low. The GP advised me to eat eggs and come back in a month to have another test. By the time the month had passed, eating lots of eggs, I had also noticed that my legs felt heavy and I kept putting on weight even though I was eating healthy and exercising regularly. I hated that I was unable to do things like I used to. After a group holiday, with my fat legs, rashes up my body and exhaustion, I went back to the GP and had another test. I had been working full time on the streets of London all this time and not mentioned anything to anyone at work, I didn’t want to get a “mark on my record” or be seen as a “complainer”.

This time she took a urine sample, and referred me to the renal department at the hospital as my urine was full of protein. From there, the consultant saw my file and called me in ASAP. He told me on my first appointment that I had Lupus. I had never heard this word before and had no clue what it meant nor what was to come. Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs.

I had to have lots of tests and biopsies, in between this I kept going to work but finally had

At Darent Valley Hospital

to tell my manager. One of the hardest parts was at first Lupus can be an invisible, so people often looked at me and assumed I was well or thought that I was making it sound worst then it was. However, by then I had gained around 2 stone in water weight and was weak. I was admitted to hospital a few days later as I was so weak and drained. After a long weekend in hospital on a drip, I was given lots of medication and sent home. I spent the next 2 months at home in bed or on the sofa taking my pills. My hair came out, my skin was spotty and I had so much water weight on my leg it hurt. I felt like I would never be back to normal ever again. I felt like I was never going to be me, again. I cried a lot, which then made water collect in my eyelids which became painful and made me want to cry even more, a vicious circle. Some of the medication I was on made me feel as the doctor described it “euphoric” but also, I felt low. I hated not seeing friends, not going to the gym, taking tablets and feeling wired all the time. I cried and mourned the loss of my perfect life and regretted things I hadn't done. I felt like I was stuck in this illness for life as I was aware there was no cure.

Eventually the tablets started to work and I gradually started to exercise and do normal things again.

I was luckily enough to have an amazing support network, in, my girlfriend, now wife, and friends, and I was able go back to work with reasonable adjustments - office based and no lates or nights. It was boring. I was so used to being an active police officer. It was a culture shock.

I was somehow promoted and moved to a unit to supervise staff. I soon realised as I could not work nights that I had been placed on a unit where anyone who was long term sick was based. I, by this time, was in remission and almost back to full health but still I was made to stay in the office and do what I considered wasn't police work. I had been put in the “too difficult” box along with the other officers on my unit. It’s funny how the police are so good at dealing with difficult incidents every single day but organisationally and internally they are ill-equipped, managers don’t have adequate training nor the power to treat me as the individual I was. This chipped away at me as I couldn't complete my supervisor’s checklist, it was in the way of my promotion confirmation which culminated in a tense emotional argument with my unsympathetic assessor. I felt like I was useless and had been relegated to the bench. After my epic battle with Lupus, I didn’t have any more fight left. I decided to leave the police as although they had been mostly supportive and I had enjoyed it, it was not for me anymore and life was too short to waste it sat doing something I didn't enjoy and feeling so useless when I had been a successful and hardworking police officer.

I left the police and started working as a Learning and Development manager, after a while I left and worked as a freelance trainer. I was free! But, I still used to worry every time I was poorly, even if it was just a sniffle, I was sure it was Lupus coming back. I became obsessed with checking my urine constantly and if I gained weight I was sure it was water weight. The thought of sitting at home and not being able to do what I wanted was crippling. Sometimes I would work myself into a frenzy thinking about Lupus. I googled and googled, weighed and checked. I would be so convinced it was back I was so moody and used to take it out on other people, but it never returned.

Then, a few months back, I started to feel ill again, I wound myself up about it every day. Once it was confirmed by the doctor that Lupus had returned the panic really hit, I couldn’t stop myself, thinking the worse all over again, even though I had recovered once before. The doctor said that it sounded like I had mild PTSD, and maybe needed to get some professional help. So, I did, I talked about how having Lupus had affected me, with a counsellor. After a few months of some medication I was back in remission, I know that I might “relapse” again, but I am now empowered with knowledge and support, I can identify early on and get treatment quickly. I also acknowledge that being diagnosed with an incurable illness is life-changing and that my psychological response was part and parcel of the illness. I might always worry about relapsing but I am better equipped to deal with it both physically and mentally.

I promised myself when I got poorly that I would do everything I wanted to do: I got married, traveled and have had a great time since I went into remission. I am now active and healthy and love life. I enjoy every day. I now run my own business focusing on mental wellbeing in the workplace. And my main reason for writing this post was to raise awareness of Lupus and hopefully to give hope for recovery for those who also live with Lupus.

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