In Feb 2013 my beautiful daughter was born. Throughout my pregnancy I suffered from severe pain in my back, hips, legs and arms but this was put down to SPD (Symphysis pubis dysfunction). After she was born it improved for a while but then in the April I began to have a bright red rash on my face, arms, chest and back. I also started to struggle picking up my baby.
I went to the doctors who thought I was having an allergic reaction. When I said I couldn’t get up they told me I was depressed and even when I tried to explain I really couldn’t get up, they didn’t listen.
By the start of May I was struggling to do anything and was having to ask friends to help even pick my baby up off the floor. Still the doctors kept telling me I was depressed and it was all in my head in spite of my rash.
My mother became so concerned that at the end of June she paid for me to see a private rheumatologist. By this time I was swollen all over, my skin was blistering and agony, I couldn’t stand up, change my baby or anything. As soon as I shuffled into the rheumatologist’s office he diagnosed me with DM. He wrote a letter to my GP telling him what to do and personally referred me to his colleague who also did NHS. My GP gave me the drugs recommended but couldn’t get me an immediate appointment with the rheumatologist.
A few days later I was swollen to almost twice my size and could no longer move. I was admitted to hospital where the rheumatologist who had been recommended to me almost ran into my room, hugged me and apologised for the delay. I was crying at this point and so scared and he promised me he would get me better.
The first night my heart rate dropped to 25 bpm and I was rushed to HDU following a CT scan. I had heart failure, severe pulmonary oedema, a perforated colon and he told me I was within 24 hours of death. I was 39 with a 20 week old baby. Thankfully he was amazing and 10 days later I went home just about able to walk. My rheumatologist gave me his personal email and phone number and a week after I was released I went to Madrid with his blessing. I still could barely walk and had to hide from the sun but I got to celebrate my 40th birthday in the sun with my family and never could I have imagined being so happy to see it!
I stayed on the drugs for 8 months and then managed to stop. I have now been in drug free remission for almost 2 years and have even managed to walk a mountain or two. But most importantly I am still here and enjoying every moment with my beautiful daughter who is worth it all!
Claire Maudsley – January 2016