At age 21 I collapsed and was rushed into hospital with severe renal failure. I was in intensive care for a couple of days and then back onto haemodialysis, a kidney biopsy was taken. My kidney started working for themselves again, which lasted for about a year until I had to go back to start peritoneal dialysis. I'm now awaiting a kidney/pancreas transplant.
I have been diabetic since the age of two so whenever I go to hospital they always assume diabetes is the problem. This was the case when my kidneys first failed, but I'd been having regular renal checks at the diabetic clinic with no problems showing up. The fact my kidneys failed so quickly is now put down to the lupus flare up, triggered by a drug I'd been taking as part of my treatment for diabetes.
If I look back at my teenage symptoms; put down as 'problem teen skin' and 'growing pains' from age 16 it looks as though that was lupus.
I now take a huge variety of drugs to control the renal problems and my diabetes. I tend to live for the moment as I don't know how I'll be feeling from day to day, so on the occasions I do feel well I make the most of it. I'm hoping the situation will improve after the transplant.
I trained as an animator then set myself up as a freelance artists, this way I can choose my own hours and work at something I love. At the moment though my body has become worn out with my kidneys not working so I don't earn enough to fully support myself. I am, however, using this time to put together ideas on a children's book I want to write.
My friends and family are all very supportive, my mum tends to be a bit of a 'worry wort', especially as she's a biomedical scientist. Friends know I get tired easily but also that I'm a feisty madam that doesn't give in easily!! They tend to worry more than I do when we're out on the town.
My life is different to others of my age in that I'm very ambitious, as are my friends. I'm always supportive of their success in their careers I do have to take a step back and not put too much pressure on myself to work for those things as quickly as they might.
You have to almost develop an inner confidence when hit with something like lupus. I get terrible arthritis when it flares and am not even that agile at other times so I have to ask for help from others. When it affects my skin and hair I have to not be afraid to go out and have fun. When I get yet another symptom I have to deal with the problem and not hide from it.
We are still up against medical staff that have little or no knowledge of lupus and yet we have to trust them with our health and wellbeing. I still have doctors who treat me as though it's all in my head.
There's no way of gaining full control of your lupus but you can put the controls into practise to get the best out of your condition. I'm currently filling my life with as much fun and positivity as possible before the transplant, to be in the best frame of mind if my lupus does decide to flair
