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My name is Kelly Simpkin and I have Lupus. I was first diagnosed with Lupus at the age of 23 after suffering from symptoms for over 6 years. For me it all started, when I was 17, with painful and swollen wrists, which soon led into my fingers. I was constantly tired, often had terrible headaches, cold hands and feet and suffered from mouth ulcers. Nobody knew what was wrong with me? A number of Rheumatologists tested, examined and spoke to me but could not give me any answers. I was living on anti-inflammatory tablets. 

As the years went by the pains in my joints became worse and the fatigue was terrible. My whole body ached. I was struggling with normal day to day living. Rheumatologists could not decide if it was Lupus or Rheumatoid arthritis that I was suffering from. I didn't care, I just wanted to feel better.  I tried so many different medications from Steroid injections, under general anaesthetic, to methotrexate, to injecting myself with anti-TNF drugs. Eventually, at the age of 30, I changed my doctor and finally had a firm diagnosis of SLE (Systemic Lupus Erythematosus). 

SLE or Lupus is a systemic autoimmune disease that can affect any part of the body. The immune system attacks the body's own cells and tissues resulting in  tissue damage and inflammation. Lupus most often causes harm to the joints, heart, liver, kidneys, skin, lungs, blood vessels and nervous system. The disease is very unpredictable with periods of flares and remissions. There is no cure for Lupus. The cause is still unknown and the illness can be fatal. 

I am now on a cocktail of drugs including an infusion of Rituximab. So far this seems to be the best solution that I have had. Its not perfect, just recently the medication caused my white blood cell count to drop to a dangerous level and I was pretty sick.

I still have days when I cannot get out of bed and just want to curl up and cry. Days when my skin feels like it is on fire and pains in my bones that just will not go no matter what I do. Times when I have painful ulcers in my nose and mouth along with cracks on my tongue (due to Sjogren's syndrome). Moments when Raynauds sets in and my hands are burning. I try not to get too depressed, I try to remain positive. I want to lead a normal life and do everything that a healthy person can do. Someone once said to me, "Lupus was like a really rubbish box of chocolates - you never know what you're going to get". That statement is so true. Every day is different and you never know what symptom you will experience. Unless you look ill people assume that you are fine. That is one of the most frustrating parts of this illness. So many people have not even heard of Lupus, let alone know how it can cause so many complex problems physically and mentally. Looking back, doctors think that I may have had Lupus from the age of 5. I was very poorly, in hospital, for a period of time and specialists didn't know what was wrong with me. It was probably then that my immune system when into shock and the Lupus developed. My ill health started then, my Mum said that I was always complaining of headaches and that my legs ached but, as most Mums did back then, she though it was 'growing pains'. Of course now, we know that there is no such thing!

I often wonder what it is like to feel 'normal', no pain, not tired, not like I have the flu coming.

My family and boyfriend have always been there for me, through the good days and the bad. Encouraging me when it all just seems too much, washing my hair when I can't, cutting my food up when I cannot hold a knife and folk and drying my tears when I cry. I am eternally grateful for that. My Dad is even going to be there with me on this Trek, continuing his support.

Lupus is still so unknown and my Dad and I want to raise as much awareness and money as possible by doing this Husky Trek. People need to be more aware of the symptoms so that early diagnosis can be made.

In February 2015, we will be trekking across Swedish Lapland, through the wilderness of Europe's largest protected area, with our own team of Husky's. We will be responsible for our team of dogs, feeding them, putting them to bed at night and the general care of each one. We will have no running water or electricity during our trek and will have to fetch and chop wood to make fires to keep warm and cook. Average temperatures will be around -15 degrees. This will be a physically and mentally demanding challenge for all. Up and downhill, across frozen lakes through the deep forests of the wilderness, travelling up to 50km per day. We will need all the energy that we can get! Wish us luck!

Thank you for reading my story and supporting me. (and my Dad!) I will keep a diary of my adventure and be sure to share it on my Hello! blog upon my return. Read it here : 

http://blog.hellomagazine.com/kellysimpkin/

I will not let Lupus beat me!

Kelly xx

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