It’s an odd thing to describe when trying to explain my journey with Lupus. For me, although I was fully diagnosed in 2011 with SLE , the Rheumatologists believe that I had in fact probably had Lupus for about 5-8 years prior to diagnosis, but that another condition I have called APS (Antiphospholipid Syndrome) had been disguising it and unfortunately it had gone unnoticed for quite some time.
The trigger factors that kept taking me back to the GP each time were pain in my left knee, thinning hair, and sores inside my mouth. My knee was really painful and periodically kept giving way while walking around. I saw a Rheumatologist after my GP finally gave in with seeing me and I had x rays done and a blood test. Everything came back normal and I was discharged and told it was probably just from where I had a mini stroke previously and it was my APS playing up.
Two years further down the line all my symptoms were still there but I had the new addition of constant headaches, swollen hands, and my whole body hurt to move some days to the point where I couldn’t work. I was finally referred back to the Rhuematologists where they ran more blood tests and did more scans.
The results came back and this time it showed that I had Lupus. I had no idea what Lupus was, or even what that meant for me, but finally at last I knew I wasn’t going mad. Apparently it’s very common to get a false negative reading on some blood tests for Lupus which is why it hadn’t been picked up on before. Once I had settled on the treatment they gave me, things started to get a bit better and I could go back to doing most things again.
The first time I had a ‘flare’ after diagnosis that was really quite bad was 2 weeks before I was due to run with the Olympic Torch and I thought that there was no way possible that I would be able to do it and got very depressed.
But one night when I was awake with pain I decided there and then that I could just sit and wait for Lupus to control my life, or I could get out there and live my life to very best I could while still being careful to look after myself.
My determination grew and the flare began to ease down a bit, (I personally think that the stress that I had put upon myself with such a big event had made things worse) and on the day of my Olympic Torch Relay I was standing tall in my Torch Bearers 2012 white and gold uniform and holding the Olympic flame thinking how incredibly lucky I was, and how determined I was to make that day the most special day of my life.
My next hurdle was reacting to sunlight in the summer. I thought the rheumatologists had gone mad when they said I had become sensitive to sunlight, but it was quite true. My lupus butterfly rash that I would get across my face was also across my chest, hands, legs, and feet, basically where ever I hadn’t been covered up with clothing, and I was sent off to have photographs of it taken as although there are thousands of us with Lupus, its actually fairly rare to get the Butterfly rash across your face the way mine does.
This time where things were a little more progressive I was given a course of steroid injections to help with all the joint pain and other bits and pieces that had decided to show up in that flare. It helped a lot and it wasn’t too long before I was back to me again.
Today my lupus is currently under control with medication, and apart from the everyday pains of living with Lupus I lead a full life. Yes some days are really difficult but I now have a good saying that I use as a mantra on bad days which says .. ‘Today is a rough day, but my actual track record for getting through rough days so far is 100% , and I think that is pretty darn good’
Sammie Roden. Ambassador, St. Thomas Lupus Trust.