The reality of day to day

Talking with my brother who also suffers from Gaucher disease, we understand each other only too well. Being in constant pain, day in - day out, the inability to do what we would like to, restricted mostly to the house, it's not easy staying positive all the time. On occasion there are bound to be times when it's just not possible to keep cheerful, and I believe this is only natural. When you know, as my brother and I do, that we're not going to get any better, and sadly a cure for Gaucher, may be discovered too late for us, it's not easy to continually stay jolly and light hearted with a smile on one's face. Those who are in similar circumstances, suffering a chronic condition, I'm sure can relate and  understand the frustrations of simply how tiring it is to endure ill health every single day with no break or intermission. I wish I had a magic wand to make all this go away. I can’t even remember what it feels like to have no pain - it's been that long.

I take part in a programme where student doctors in their first year talk with a chronic patient, enabling them to gain experience and hear first hand what it's like to live with chronic illness. This programme has been such a success, it has now become a permanent part of the syllabus. I took part last year and had delightful students visit me at home and attend one of my six monthly check-ups at the hospital. This year, fresh students visited me, and unable to fit into my scheduled hospital visit, instead they came to my house at the same time as the nurse who administers the i.v. treatment to me for Gaucher disease. The nurse is excellent and well versed with many years experience in Gaucher disease, and was able to give the students some valuable information and input from her knowledge and point of view. As she inserted the needle in a vein on the top of my hand, the students cringed and immediately asked "Why there?" as it surely hurt more instead of in the crease of one's elbow. The nurse smiled and explained that my pain threshold is not the same as a normal healthy person, and therefore this was nothing for me. Explaining to young student doctors that I'm in constant pain, whilst able to continue an intelligent conversation, with no facial contortions or signs of the discomfort I'm in, was hard for them to get their heads around. Pain is part of my life, and dealt a double dose, I have various pains, both muscular and bone from both diseases. So when I get on my husband's nerves, I'm not just "a pain in the neck", but literally one big pain!