One of the many things I found hard was the overwhelming fatigue. Very early on I met a lady who was a little younger than me and she said she found the fatigue was one of the worst things and now I know what she meant!
Partly due to the brutal treatment and partly due to all the time I spent laid in a hospital bed my body became extremely weak! I would get out of breath really easily and start to panic, this lead to awful anxiety! If I had to go anywhere I would have to work out if there would be places I could sit and rest if I needed to and make sure there would be a toilet nearby because of the colitis. My anxiety got so out of control my consultant gave me medication to help control it. It was so crippling at times that I couldn’t get off the settee to do anything incase my body let me down. Even when I was sitting down my legs would shake uncontrollably!
I had to go up the stairs on my hands and knees and when I came down my husband would walk in front of me as I was so weak there was a danger I would fall! I still get tired really easily and my legs don’t have much strength in them, I’m scared to exercise but need to build up my muscle tone. I used to run and cycle so being weak is pretty depressing.
I remember sitting at home crying as I watched people walk past my house going about their day to day lives feeling so sorry for myself! I had taken so much for granted in life but suddenly my freedom and independence had gone! I just wanted to be able to do those boring normal things like pop to the shop or to a friends house! Totally reliant on other people for the first time in my life, I’m usually the one in control, I had to let go and trust those around me.