Sixty-eight-year-old Val Foreman from Tylers Green, Buckinghamshire has inclusion body myositis (IBM). She lives with her husband of 47 years, and has two children and four grandchildren. Val talks about her diagnosis, and her role with the Myositis Friends Support Network (MFSN).
I’d had symptoms for about ten years – dropping things, being clumsy, gaining weight, and becoming tired quickly. I then started noticing that symptoms in the left side of my body were worsening more than my right side.
It took many visits to GPs, a rheumatologist and a neurologist – as well as a muscle biopsy – before I received my diagnosis at the age of 57.
Around this time, I was being treated for depression. I was told I needed cheering up and my GP suggested I ‘go and see Ken Dodd’, or ‘have a spa treatment’. I felt I wasn’t being taken seriously, so I changed doctors.
My new GP assured me we’d get to the bottom of my symptoms. After some research, she thought I might have polymyositis.
I was referred to a rheumatologist, and then to a neurologist at the John Radcliffe Hospital in Oxford. The consultant took a muscle biopsy, confirmed a diagnosis of IBM, and asked to see me in a year’s time.
I asked if that was to see how much worse I’d got. He said, ‘Yes, I’m sorry there’s no treatment. Nothing we can do except manage the condition.’
The news completely shattered me, and I remember bursting into tears. I started looking for a support group so I could talk to other people who were going through the same thing. Talking to other people with the condition really helped me, I immediately felt less isolated.
I received useful advice, and made a new friend who offered very practical advice – she was just what I needed. I soon realised the importance of having someone there, who understands what you’re going through.
I was determined to make sure that anyone who has been diagnosed with IBM does not feel alone. There are plenty of people who are going through the same thing, and the importance of shared experiences is invaluable. Sometimes this condition can leave you housebound, and it is easy to lose confidence through not having regular contact with people. It is so important for people to realise that there is hope, being diagnosed with a muscle-wasting condition doesn’t have to be a downward spiral, although there are no treatments available at present, research and clinical trials are always taking place.
Before I knew it, there was a group of us, all with IBM, in regular contact. We realised that we needed a way of sharing knowledge and over the phone. Some people with the condition find themselves confined to their house, so it is important that a good support network is available. That was when we formed the Myositis Friends Support Network (MFSN).
We offer support over the phone, by text, facetime, and instant message. We meet as a group on an annual basis, and it is always a great opportunity for people with the condition, their partners, and carers to get together.
My oldest Grandson is a great help – he skateboards to the house if I have a fall, and volunteers with the MFSN, helping with us with design and print work.
The network works closely with Muscular Dystrophy UK. We go to information days and Muscle Group meetings, so we can find out useful information, and connect with more people living with myositis. There are currently 117 members of the MFSN, and this number is growing, almost daily.
Find out more about MFSN and the support they can offer.