- Inclusion Body Myositis
- Interviews
C N's interview
How did all start?
Weakness, tiredness, aversion to exercise, from a young age, with juvenile rheumatoid arthritis being diagnosed (incorrectly)
Do you already have a diagnosis? How long did it take you to get it?
Yes, many years before a biopsy was done.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Daughter who is an occupational therapist urged me to seek help.
Our GP referred me to both cardiologist and neurologist, and also started me on an anti-inflammatory diet and specific supplements, including vit D
Neurologist referred me to an academic hospital where the diagnosis was confirmed.
What has been the most useful thing for you so far?
The combination of three times a week at biokineticist, occupational theraphy and healthy eating.
What have been your biggest difficulties?
Mobility (stairs, getiing up from a chair) and weakness in hands
How has your social and family environment reacted? Have your social or family relationships changed?
I prefer to stay home where life is easier because of adaptations.
What things have you stopped doing?
Do not eat out -- can not hold a knife and fork properly and struggle to get out of chair.
Needlework needs a lot of work arounds
Can't get in and out of a bath -- so only showers.
Morning swims in the sea stopped ten years ago because of the fall risk on the rocks.
What do you think about the future?
It is what it is -- I have a good support base, with staff who help with tasks, and my house is suitably accessible. Where needed we replaced stairs with ramps even for walking. I am an optimist, and I am not planning to just give up.
So far, which years have been the best years in your life? What have you done during them?
The year I am in is always the best.
I worked in publishing and loved it, and then moved on to a university where I flourished despite the niggling health issues. I know that I worked far too hard, and that I neglected myself, but I enjoyed every moment.
What would you like to do if you didn’t have your condition?
I can still do the work I was trained for, but I miss not being able to swim in the sea.
If you had to describe your life in a sentence, what would it be?
Blessed.
Finally, what advice would you give to a person in a similar situation?
Be kind to yourself. Self-care is not a luxury; exercise, enough rest and healthy eating is really important. Do not be shy to accept help. It made a big difference when I decided to just tell people why I am struggling to get up, or why I am wobbly -- once they know we can get on with life.
