Linda's Story

“I’m determined to go on holiday on the Eurostar, and the course definitely encouraged me to take the first step. I did weekly action plans to get my passport and felt better once I’d done it because now it gives me something to aim for.”

Linda
Portsmouth

I was first diagnosed in 1989 with remitting and relapsing MS, but it’s now progressed to secondary progressive MS. At first, the doctors thought I was having a slow stroke because it affected my left side and I was dropping everything and falling over. It was quite horrendous. I was admitted to Southampton General Hospital and they performed a lumbar puncture which was unsuccessful. Then, after I had some diagnostic tests on my brain, the diagnosis of MS was found to be conclusive.

My condition has been devastating really. Early on I was getting attacks and then remission, but it has been in the last decade that it has really taken its toll. Round about 1996 I was still pretty functional. I was able to work up until about 1996, when I took ill health retirement from the building society where I worked. I did try to go back to work after this, but found I wasn’t able to. From about 2001 to 2005, I was on crutches and although I had the wheelchair, I very rarely used it. But since we moved house in 2005, I have been using it all the time.

My condition has affected all the normal side of family life. For example, I am not able to do what a grandmother usually does with their grandchildren. I feel left out, even though I have family around; it is hard for them to really take on board the emotional and physical aspects of the illness. But we are getting there. Our children are now older and wiser to MS and understand my present situation; they are also very aware regarding my restrictions when it comes to family events such as outings, eating out and quality time together. I personally feel that not being able to do all we can as a family has its disappointments. I realised with the EPP CIC course that I wasn't the only one who had these restrictions within family life.
In September 2010, I attended the Generic course in Portsmouth. I found that the course made me think about my condition and made me more assertive – I thought “Yes, I can do that”. It also made me not just try and do it, but say “I will do it” instead of “I could do it”. It encouraged me to take action. I did an action plan every week and this was very useful. I was determined to get my passport this year and so one week I said I’d get my photo done, and I did. In the last week I was meant to fill in the forms and although I didn’t do it then, I have since done this.

I’m determined to go on holiday on the Eurostar, and getting my passport was the first step. The course definitely encouraged me to do this. I felt better once I’d done it because it now gives me something to aim for. One chap on the course said that Bruges was very nice, so Brian and I are planning to go there for a holiday later this year.

The people on the course were very friendly. We talked a lot and one lady passed on some very useful books about counselling. The course was very good and I really enjoyed it. I said to the tutor on the last day, “What am I going to do on a Tuesday now?”. The course made me feel less alone. It made me feel a bit better. There were other people who were fighting a condition that they found hard as well, and they weren’t all elderly; there were a couple of older people, but there were some younger people as well.

Another thing that came out of the course is that I seem to do everything for everyone else and leave myself until last. I don’t put myself first at all. I’ve always tried to play my condition down and not let other people know about it and I’ve often been told off for that and told that I should speak more openly. In the first couple of weeks of the course, I didn’t say a lot, but towards the end I ended up getting more involved and giving my point of view because I felt that I could – it made me feel a bit more confident.

I also found the deep breathing exercises very helpful as I tend to shallow breathe when I get tired and get a bit breathless. We also spoke about diet and doing exercises from my chair to get my lungs going, and that was very interesting. The course encouraged me to go back to what I had previously been doing. After experiencing 3 bereavements since April, I decided to make it a goal to go back to things such as my exercises, and I did. The course helped me achieve this goal.

I would recommend the course to anyone. I have already recommended it to my MS Society group. I’d say go for it – basically don’t be afraid of it – go for it. The course made me think and it made me feel less helpless. It makes you realise that you can do it with a little bit of help. If you’ve got the resources, you can do it. The course has given me some of my confidence back because over years of coping daily with my MS I became more introverted and missed out on a great deal of what life has to offer. On a personal note, I would like to thank the Portsmouth MS Branch for introducing EPP, thereby giving me the opportunity to make the initial call to enrol.