Living everyday with a chronic illness can take its toll. Especially when a rare disease such as carcinoid syndrome and doesn’t trip of the lips easily. Most people haven’t heard of the cancer that comes with it let alone understand it. The daily routine of creams, feeding, blood sugar checking. Not to mention the absolute fatigue. What makes life much easier is routine. And most importantly I make sure I find a special time for friendship, relaxation and love.
In between my weekly tube services, 14 day octreotide treatment I find time to get some normality into my life. The one thing I promised myself is when the words incurable rang in my ears; I most certainly gave myself a talking to and will always fit this disease round my life not my life round the disease. My family is hugely important to me. I will always find the time to have fun and a willing ear. As time is going on and my condition progresses what is becoming apparent to me is what helps keep me sane is friendship, relaxation and love. The unconditional love I have for my husband and children (and their children) goes without saying. I love and am loved by some beautiful people that help me get by. Friendship is amazing, it is comforting to get woken by your mobile phone with a message to ask how you are. Or just to say hello. Sometimes the message actually may be asking for advice – I like that. Totally feel needed. Relaxation is essential for us all, enjoy.
I have been having a particularly difficult time recently with my rig. However on Saturday it was the most beautiful day and there was a Chapter Ride organised. We are members of a Harley-Davidson® bike club – The Dunedin Chapter. We get together for rides, social events, charity fundraisers. Superb way of getting out on the bike and meeting new people. Steve was going on the Harley-Davidson® on the ride. Some of our friends were going on the ride. I decided since it was only a 60 mile run I would go to. Super weather, beautiful scenery, great friends and on our latest Harley-Davidson®. Of course I clambered on the back of the armchair seat. Feed linked up and away we went. A wonderful ride to The Big Red Barn.
After a wonderful relaxed few days seeing and chatting to family on the phone. Speaking to friends. And getting out on the bike for a while. I am now ready for my hospital appointment tomorrow.