How writing became my therapy – Jill Rutherford’s story
Onset of Unexplained Symptoms
“Total fatigue and inability to live a normal life. Brain fog and symptoms like nerves tingling, stiffness throughout my body which prevented me walking properly and doing daily activities which my doctor dismissed as ‘nothing’ and to do more exercise, loosing feeling in lower legs from time to time, unable to move after a long period of standing. Feeling so ill for most of the time which no amount of rest alleviated. Then I got a lump in my throat which a new doctor took seriously and sent me for a scan which picked up a lump in my thyroid which was operated on and the diagnosis of Sjogren’s finally given after a lip biopsy.”
Impact on Daily Life
“It has changed my life totally. I now live a restricted life dictated by my levels of fatigue and general feeling of unwellness. I have to pace myself. The disease continues its steady progress and now affects my digestion and what I can eat and this carries on to my intestines and symptoms of irritable bowel disease which makes life even more difficult especially when going anywhere. It’s also affected my bladder and I have recurrent UTI’s. I virtually have no social life now as I had to cancel so many arrangements because I was unwell on the day and that made everything so much more difficult to cope with.”
The Struggle for Recognition
“Most people have never heard of Sjogren’s, even nurses and some doctors and look rather startled when you explain and if you go into too much detail they just switch off. It’s obvious they do not quite believe you as it’s something they have never heard spoken of unlike MS or similar which they acknowledge is a disease and can sympathise with.”
Finding Community Support
“The information on the internet and the increasing information from The Sjogren’s Society and the good work they do in getting this disease talked about and understood. One feels less isolated when an official organisation which has the gravitas and respect of professionals confirms patients lives and problems.”
Writing as Therapy and Achievement
“I have written eight books which I have published myself on Amazon since my symptoms of Sjogren’s started. Apart from my first book, a memoir of my seven years living and working in Japan, the others have been historical fiction. The last two books took a long time to complete as my brain fog overcame me and I had to take a year off writing but then, half an hour at a time, I was able to pick it up again taking three years to write one book and almost three years to finish the final book. It was hard but very satisfying and a great achievement for me. I’m proud of that and it’s kept me sane and motivated to achieve what I could with a disease that restricted my everyday activities and ability to cope with normal life.”
Further Reflections: Q&A with Jill
What sparked your decision to write after your diagnosis?
“I had returned home in 2007 due to an illness that no one could diagnose but left me with such deep fatigue and feeling of un-wellness that I was unable to continue with my English school. On my return I consulted doctors, but my condition remained undiagnosed. My symptoms were increasing, and I didn’t know how to solve it. What I did have was a deep desire to write about my time in Japan. I started to write and found it helped me cope with my ‘unknown’ illness. I paced myself and developed a regime of writing at the same time each day, mornings in my case, for a short period or longer if it was a good day. Eighteen months later, I had a book I felt I could be proud enough of to let others read. At this time, my brain fog was not as prevalent as it became, and I found the writing extremely satisfying so I was encouraged to continue and I joined up for a writing group and a few local writing courses.”
How did you manage brain fog, fatigue and other symptoms while writing?
“A diagnosis of an arthritic hip led to a hip replacement and (I now recognise due to my Sjogren’s) it took me months to recover. During this time, I had an idea for a book based on my knowledge of Japanese society and history. It turned into my Secret Samurai Trilogy. The problem was my increasing brain fog made research difficult as I could never remember what I had read so I jotted down salient points I thought would be useful into a notebook together with the book’s name and page number. I could then refer to the source when needed. Some days were difficult, and I had to admit defeat and do no writing but whenever I felt up to it I made sure I gave my writing priority. I was lucky in being able to do this as I had retired and had no other claims on my time.”
“As time went by my stiffness and muscle aches made it impossible to sit at the computer for long periods so I developed a routine of 20 minutes sitting at the computer and 20 minutes of standing up with the computer balanced on top of a cupboard which was just the right height to make it comfortable for me, and so on for as long as I could, usually one or two hours with breaks when my brain seized up completely.”
“I also found my increasing brain fog made it difficult to remember what I had written the day before. I overcame this by printing out the work and rereading it before I started writing the next day. I would make changes as I reviewed and notes on how I felt I could develop certain aspects and improve my writing. I altered it on the page and printed out the amended version and kept it by my computer throughout the writing process that day referring to it constantly.”
Which of your nine books are you most proud of?
“I am proud of all my books equally. All had their challenges albeit different ones and I cannot pick out one book above the others.”
How has writing helped you cope emotionally and stay motivated?
“I think it’s fair to say that my books have been so important in helping me through all the difficulties which Sjogren’s inflicts on us. It has kept my brain functioning more efficiently. I have noticed a distinct reduction on my brain powers since I was forced to stop writing about a year ago due to symptoms overcoming me, mostly fatigue, brain fog and feeling so ill. Recently, I have felt able to start another book but am still struggling with inspiration, but I know it will come eventually if I just persist. This is my personal way of coping, and it will be other things for other people. I would say that you don’t have to write with a view to publication or even showing others, but the satisfaction of doing something that gives you such pleasure and improves (at least for me) my cognitive abilities is extraordinary.”
The Challenge of Marketing
“The one thing I just couldn’t do was market my books. I tried several times, but it is a complicated business, and I just could not keep the information I needed in my brain and made a complete mess of it. I gave up marketing, but I’m so pleased I continued to write, that was the main thing.”
