My name is Jeanne. I am 55 and was diagnosed with Multiple Sclerosis in 1983. Many years ago I had to accept the difficult decision to end my career early. This was devastating for me, as I really enjoyed my career as a solicitor and reporter in the children’s panel. Rather than be beaten by my condition, however, I think I have now adopted a more positive attitude and like to see myself as one of life’s do-ers. I made the decision to self manage my own condition to help me feel more in control. I try to keep as fit as I am able to and engage in voluntary roles in various organisations. I hope that my skills and experience learned through my studies and career are valuable to the organisations I support.
What long term conditions do you live with?
I have relapsing, remitting MS which affects me in many ways, from mobility to fatigue, leg spasms, continence problems, vision problems and pain.
What does self management mean to you?
Self management means I can feel more in control of my condition. My mission is to beat these symptoms and not let them beat me. I try to stay positive and accept support from a team of people who offer their specialist help from the staff, volunteers and therapists at Multiple Sclerosis Centre, Mid Argyll (where I receive peer support, therapies and exercise classes), to the NHS consultants who yearly monitor my beta interferon, I have carers who assist with my daily duties, as well as support from various other supporting organisations. By accessing and accepting support, I feel I now have a better quality of life as I try to lead a full and positive life. Since my initial diagnosis I have learned to accept my MS and try use my own experience to improve the quality of life for others. I manage my condition by keeping as healthy and active as I can be. I keep an active interest in community activities and enjoy socialising at the MS Centre. I keep up to date with developments in MS research and am happy to try out any new treatments I feel they may be of benefit to me. If I have questions about my MS I see the link nurse in the MS Centre.
How active are you?
Since diagnosis of MS, my mobility is increasingly restricted. I can now only walk very short distances using my sticks, however, I find some benefit in the use of an FES (Functional Electronic Stimulus) machine on my leg, which stimulates the nerve and helps reduce the effect of my dropped foot. With support from my carers and relatives, I can get out of my house to attend the MS Centre for yoga, therapies, socialising and to use the Centre’s exercise machines. I also swim regularly at our local pool. I did until classes were unfortunately stopped, attend the local gym through a GP referral scheme and I am hoping that these supportive classes will resume shortly. I keep my brain active by sitting on various charity committees.
How did you become more active/what motivated you to become active?
My philosophy like many of my friends attending our local MS Therapy Centre in Lochgilphead is: ‘If we don’t use it we lose it!’ I started to attend the MS Centre, for therapies and was delighted when they started offering exercise classes. I benefit from the peer support and enjoy encouraging others with MS to become more active, as I know how important it is to keep moving. The weekly physiotherapy sessions combined with my physical activity I receive help reduce my spasms. I like to be a good example and stay positive to show those newly diagnosed with MS, that by keeping motivated, moving and smiling they too can have a good quality of life.
I would not be able to carry out the physical activities I do without support from carers and relatives, class teachers, MS Centre staff and volunteers. With support I can get out of my house and into the MS Centre to receive various therapies including a weekly hyperbaric oxygen session, weekly physiotherapy, aromatherapy and fortnightly massage.
How does physical activity help you self manage your condition(s)?
Physical exercise keeps me moving and can help prevent muscle spasms and reduce my pain. The yoga class helps improve my core muscles and helps me with my balance, so I am less likely to fall. The severity of my symptoms worsen throughout the day and become more debilitating in the late afternoon, and into the evening. Everyone knows me as an early bird, as they see me trying to fill my mornings with activity before my disabling fatigue sets in. I don’t tell them that if I waited until later in the day, I would be unable to exercise. My leg can become very stiff and spasms and I struggle to bend and move it, this is where receiving physiotherapy and massage can help. I feel better if I know I am helping myself, if I stayed at home I would miss the company of friends and I know I would soon stiffen up and lose my mobility.
What benefits do you see from being active?
Without staying active my muscles would further weaken, spasms more frequently, give me more pain and I would be confined to my wheelchair. Staying active keeps me moving and gives me an energy boost and a positive outlook. I enjoy the yoga and swimming classes, as the class members also have long term conditions, so we offer empathetic support to each other. The teachers know how much to push us and encourage us all to work at our own pace. The classes are not competitive, everyone is aware that each of us has some limitations and we support and encourage each other. We have become close friends and as well as exercises we laugh, giggle and share stories. The class members know they can help, support and confide in each other and can lend each other a friendly, supportive ear when needed. I also benefit from the relaxation sessions during the yoga class, and feel relaxed when using the chi machine. I become less anxious and use breathing techniques learned in yoga.
I encouraged my dad to join the yoga and at 88, with his own illness to fight, he enjoys taking part in the class and is benefitting from the regular, but gentle exercises.
Staying active has helped me join other classes such as the cooking class at the MS Centre for people with long term conditions. As I can no longer cook and I rely on carers to cook for me. In this class we received support from a local chef and with the use of kitchen aids he helped us all do a little together. We then set the table and enjoyed the meal as a group, which was so nice as many of us live on our own.
What are your key messages? (How would you encourage others to become more physically active as a way of managing their long term condition(s)?)
My key messages are:
- Do a little of what you enjoy, regularly.
- Do as much as you are able and do not feel intimated by others doing more.
- Work hard but at a pace suitable to your own ability.
- Find an activity that is beneficial as well as enjoyable.
- Exercise face muscles as well with a smile.
- Find a group like my gentle yoga class, where we stretch, tone and learn breathing techniques in a friendly, relaxing environment but also offer support and friendship.
- Remember my motto: There IS a CURE for MS, they have just not found it yet! Until they do just keep doing what you can to help yourself and others.