So far, the biggest lifestyle change I have made is learning to say no to people when my illness is too much for me. Previously I just thought that everybody felt this rubbish all the time, and I felt guilty if I couldn't perform a task to the best of my ability when asked to. Learning to say no has allowed me to better understand that some days I have limitations on what I can do, to accept those limitations but also find my strengths.
While I always tried to maintain a healthy diet anyway, my diagnosis has prompted me to really push for a healthy lifestyle – even if some days I am too tired to go for a long walk, I am active every day.
My family have all been very supportive, and the charity Lupus UK has been great – they have sent me countless books and other materials to support me. A friend of mine has signed up to run two half marathons in order to raise money and awareness for Lupus UK.
My biggest supporter is my partner, Rob – he even held my hand while I had my biopsy! Rob has taken everything in his stride, he helps with all my medication (I'm a bit useless at remembering to take so many tablets!), he deals with my horrendous moods, and most importantly he just gives me a cuddle when I really need one. Rob is a prolific internet searcher as well, and often finds research and studies into diet and lifestyle in order to try and help me at home. Rob has also signed up to a number of events to raise money and awareness.
Remember that you are LIVING WITH lupus. It does not define you and it is not all that you are.
Learning to say "no" has allowed me to accept my limitations but also find my strengths.
My advice would be to always remember that you are LIVING WITH lupus. It does not define you and it is not all that you are. There will be times when others do not understand that you feel consumed by your lupus, because you do not look sick. This might even make you feel as if you should just "get on with it". Never let another person take away your right to be frustrated and upset; it's okay to feel rubbish some days, and it is okay to say no.
I am 22 and live in Harrogate, North Yorkshire. I am half Burmese, on my father’s side, and have rather a large family. I am training to be an accountant and absolutely love my pets – Tiber the Labrador, Minky the cat and Tato the hamster. My boyfriend and I have been together for nearly three years and are hoping to travel through South East Asia and Australia one day – soon hopefully!