Hi All,
Today I want to introduce you to Fae and her story. It is time for others to have their voice and to share their experiences as we are all individuals in the same fight. Fae is a brave woman, mother and soon to be wife and I hope that her story will inspire other young people with Lupus to keep fighting every day as the future is always bright!
Love Cass xMy Battle
My name is Fae I am 24 years old and was diagnosed with S.L.E and auto heamalytic anemia in march 2009 at the age of 19, since then every day has been a battle. I have read the stories of some very inspirational people recently and can only hope that my story will inspireIt began in November 2008, six months after giving birth to my beautiful baby girl. I had felt like I had flu for weeks aching from head to toe. I went to see my G.P and was told to "come back in a month if I did't feel any better".over the next 3 months I became extremely unwell,severe aches and pains, extreme weight loss,fatigue, dizziness and even hallucinations. Eventually on 12th February 2009 I was taken to A and E. The triage nurse was astounded my heart rate way into the hundreds, after further blood tests they found I had a heamaglobin level of 2 (12 is the desired healthy level) I was literally dying and the doctors did not know why.
I was given two blood transfusions before they managed to slow down the destruction of red blood cells. I was told if I had not gone to hospital when I did I would not have survived. I remember lying there trying to shout for a nurse and one side of my body was completely numb, it was terrifying. I was put on a very high dose of steroids which made my face swell so much I could barley open my eyes. I was kept in hospital for 2 weeks, I missed my baby girl so much, I lay there and cried every night. I was so scared.
Three weeks after leaving hospital I had an appointment to see a rheumatologist, this was the day I was diagnosed with S.L.E.
I was devastated I knew nothing about the disease, the consultant went on to explain that there is no cure for lupus and that I would need to be on medication for the rest of my life. This was the worst day of my life.For the next twelve months I was very unwell, headaches, extreme fatigue and unbearable joint pains. The steroids made me gain so much weight, 4 stone in total, I had a huge round face it was awful, I couldn't look in the mirror without crying. Eventually I was put on immune suppressants which meant the steroids could be reduced, and along with strict dieting I began to loose most of the weight. I had so much trouble with joint pains at times I couldn't lift my daughter out of her cot, it was so heartbreaking.
But despite all this I carried on with my life I refused to let it beat me. I finished my college course and went on to university, whilst still working and of course looking after my daughter, looking back I don't know how I managed.
Living with lupus is a daily battle, you never know from one day to the next what is going to happen. Taking handfuls of medication everyday to keep you alive, being terrified of catching a cold or stomach bug and ending up in hospital again, getting a sore rash on your face if you go in the sun, endless joint pains and extreme fatigue. Perhaps the worst part for me is the fear, where and when is it going to attack next? will they catch it in time? Will i survive? And sometimes if i'm honest I don't want to survive, i've had enough, i'm tired, i cant fight any more, i just want it to go away please I'm not a bad person surely I don't deserve this?
It has been so hard for me to accept this disease and learn to live along side it, I hate lupus it makes me so angry. It feels like a person who hates me lives inside me and tries to destroy me day by day! I don't want to live with it, its so unfair. I cry so often sometimes I forget what its like to just be happy.
It is so hard to stay positive when you have a chronic disease, there are so many occasions i feel like giving up and letting it take over. But I don't I keep fighting. I know i've got so much to live for. That's what we have to remember no matter how bad things get life is always worth living. I have a beautiful little girl who I am so proud of, I am engaged to marry the love of my life, who has stood by me through all the tough times and who holds me when I cry. I have an amazing family and friends who support me and most of all my mum, there is no way I would of got through the past five years without her! Shes my rock and I love her so much. Without all of them I would have given up a long time ago.
Never give up :)