Anna's Story

“The course has definitely helped with my confidence levels and I feel brighter.”

Anna
Farnham

During late 2004, the vision in my right eye went blurry. I was referred to Frimley Park with optical neuritis. In about April 2005, I went for an MRI and a follow-up with the neurologist who told me that I was doing fine. Then, in January 2008 I had bronchitis which wouldn’t go away. I had difficulty walking, I kept falling over, I was so tired and I felt very low and depressed. By April my sister contacted the multiple sclerosis nurse who suggested I took a 5-day course of steroids and I got a lot better very quickly. Another MRI and the diagnosis of Relapsing Remitting Multiple Sclerosis was confirmed by my Neurologist shortly afterwards.
 

MS is a very unpredictable condition, one day I can get out of bed, the next day I cannot get up. I suffer with fatigue. I have restless leg syndrome and constant pins and needles and numbness in my left arm, hand and foot.

I didn’t relapse badly until September 2009 but then I had a severe relapse. I had to crawl to the toilet. I couldn’t speak. My balance and co-ordination were awful. Sometimes I couldn’t eat properly because I couldn’t swallow. I couldn’t even wash myself. Again, steroids were very effective and fast-acting. Then the death of my brother-in-law made me relapse again as I was very close to him. Since then I have had three other bereavements and relapses. My triggers are definitely emotional and stress related, and the past couple of years have been quite traumatic.

I have found my boyfriend incredibly supportive and he cares for me. He doesn’t live with me, but he is always there for me. He comes round every morning and makes a flask of coffee, and my breakfast, and makes me a sandwich for lunch, then comes back and makes me dinner. He cleans, cooks and irons. My sister and family have also been incredibly supportive the whole way through.

My parents took a long time to acknowledge my condition. They referred to it as ‘that nasty thing’ or an ‘episode’ and didn’t really understand. I get very tired now and it is hard for me to drive up to see them as it is a long way - I get dizzy and my coordination goes. They are more understanding now because my sister has helped to explain, but they don’t often see the effect the MS has on me because I don’t see them that often.

I have lost friends because I’ve made an arrangement to go out and then have had to call it off. Now I have 1 or 2 close friends, whereas before I used to go out a lot and was very sociable. I have been very reclusive over the last few years. It is hard now, as I’m managing my condition better but many of my old friends have moved on with their lives.
On 18 February 2010 I undertook the Expert Patients Programme’s Online course because my MS Nurse, John Pohorely, had been recommending it to his patients. I felt more confident about doing a course online because I live in a 1st floor flat and going out can be quite hard for me, I have panic attacks, get dizzy and the stairs are hard to manage. So it is useful for me to be able to speak to people online or by email.

The course has changed my lifestyle in that it taught me to do action plans each week; I’ve carried on doing that – and set myself targets of trying to get out more. I’m getting a Motability car too, and this came about through talking to someone else on the course who had one.

I’m eating a lot better now than I used to. Through talking to other people on the course, my diet has improved tremendously. I was just sitting there snacking on biscuits, etc. Someone had the idea of having a bowl of fruit salad instead and snacking on that. It has definitely helped.

The course has encouraged me to try and do more exercise. My boyfriend bought me an exercise bike, but I haven’t done too much on it as yet because I haven’t been well enough. But it’s there ready for me.

I have also been trying to sort out my medication with my doctor. People on the course encouraged me to keep experimenting until we get it right. It was very reassuring to know that other people have had the same problems. The people on the course were so supportive and gave such good advice. There were 2 other ladies on the course who had recently been diagnosed with MS and so we were able to share our experiences and talked about how we coped in a given situation.

The course showed me how to use diversion techniques which are really effective for panic attacks. I use them quite a lot and even though I still panic, they work. MS makes me very emotional and I tend to overreact and get very upset. The relaxation techniques allow me to just imagine I’m somewhere else. When you’re stuck in a flat for up to 6 weeks at a time, it is very reassuring to know I can do that. It’s great to have the course manual too, and I often go back and refer to it.

My condition caused me to reduce my working hours from 40 to 16 and then I had to stop work due to redundancy in August 2009, so as far as the future is concerned, I am hoping to go back to work. Sorting out my medication will hopefully help with this. The Motability car will be amazing – I hope I’ll be able to go out much more. And I am considering becoming an EPP tutor. It’s all a case of building up my self-confidence. The course has definitely helped with my confidence levels and I feel brighter because there are other people in a similar situation to mine. This made me realise that I’m not alone and so I don’t feel isolated any more. It was really good to know that someone was there once a week and that you could email other participants. This was very reassuring.

I would recommend the Expert Patients Programme Online course to anybody and everybody, because you’re not alone. There are people out there who are in the same situation; they may have a different condition, but it still helps. Together you can learn to manage your long-term condition and help others manage theirs.