MS Active Source - positive living with MS

Finding Inspiration from Other People with Multiple Sclerosis

My Life with MS: Emma

 

'When I was diagnosed with MS, many people I spoke to would tell me about someone else they knew of who suffered from the disease. I felt compelled to ask questions like: how long have they had it? How far can they walk? How long was it before the disease progressed to the next stage? Of course, I soon realised that each case is so different that there is no pattern, and learning how to come to terms with it yourself is the most important lesson to learn.'

'Shortly after diagnosis I began a fight to obtain disease-modifying treatment. Initially this seemed hopeless, and I found it difficult to see the light at the end of the tunnel. This led to an unfamiliar and frightening depression for which I needed treatment.'

'Happily for me, I was able to start treatment after about 18 months and very soon after this my symptoms began to subside. Gradually, week by week, things improved. I became less tired, the palsy in my face subsided and the pins and needles in my legs became less intense. My sight returned almost to normal, and I began to enjoy life instead of just existing through it. Now I feel like my old self and find it difficult to remember how debilitating the disease was.'

'I walk everywhere I can now. I especially enjoy walking with my children to school (even when it’s raining), which is something I couldn’t do before. I’m playing tennis again - a sport I always used to enjoy - and I’m starting work again soon.'

'I’m eternally grateful for the treatment, which has allowed me to see the light at the end of the tunnel again, this time without the help of antidepressants!’

My Life with MS: Leonie

 

'When I was diagnosed with MS in Sept 2000 I was determined to fight it and not let it dictate my life. Having overcome a series of tragedies in my family during my teens, including having to be fostered for 3 years, I was determined that my family would have emotional and financial stability. I campaigned to get the funding for beta interferon and eventually commenced treatment, a year after diagnosis.'

'At work I was having increasing difficulties with short-term memory and concentration. Numbers would jumble themselves up before my eyes and presentations at governors' meetings that I had once found routine became disjointed and embarrassing ordeals. Relationships with colleagues were deteriorating fast and I was losing the confidence to tackle the issues. People don’t understand because they only see what they want to see. I wish I had known then what I know now.'

'My GP and neurologist were very concerned at the impact the stress at work was having on my MS. After a further relapse I was signed off work in Oct 2003 and never returned to my desk. My self-confidence was in shreds. I was on antidepressants and sleeping tablets and receiving counselling. And this was compounded by money worries.'

'Two years later my life has turned around. I started a part-time creative writing course just one morning per week, which I continue to enjoy – and which has helped me to discover a creative side I didn’t know I had. I also trained as a volunteer 'Appropriate Adult' with the local Youth Offending Team and do two on call shifts each month (health permitting).'

'I have come to realise that the new skills I have found compensate in so many ways for the loss of my managerial and financial skills. We don’t have the money we used to and have had to make sacrifices, but my quality of life is infinitely better. And most importantly, my MS has remained stable!'

My Life with MS: Jane

 

'In December 1996 my vision began to play up. Things were blurred and my eyes were painful. At the same time I kept feeling dizzy and experiencing this really weird sensation through the back of my head/neck which at the time I could only describe as an old-fashioned cash register that schschung, schschung when you press the keys down and the till pops open. I think my doctor thought I was mad.'

'I saw the neurologist for the results of my  tests and was advised that I definitely had MS, that it was unusual as it was in my sensory system which meant that it could affect any limb for the neck downwards, and that my attacks were stretched out, lasting several months at a time. He said that he thought I might be suitable for beta interferon. I was told to avoid stress, heat and viruses and  if I needed further information to contact the MS Nurse.'

'I contacted the MS Society and they lent me a video made of people who have taken beta interferon discussing the merits and the side effects. The MS Nurse also came and went through a video that shows how to administer the treatment.'

'I have now been on treatment for over 2 years during which time I have only had one relapse, and the severity of that attack was greatly reduced. I am still very happy and in some ways having MS has got me out of the rat race and given the opportunity to have more time for myself and my partner. I am very upbeat about life.'

'Having MS is definitely not the end of the world. You can still find happiness and contentment. MS is something I live with and is a huge part of my life, but I am more than that and I am really happy and like the person I have become, so, no regrets: just onwards and upwards.'

My Life with MS: Kevin

 

'I have just been diagnosed and have started the treatment for MS, and my life has changed a big deal. I work for a large company and they have been very understanding and are assisting when I need it.'

'I am on beta interferon-1a prefilled injections and have had side effects which caused a few problems. I have been self-injecting for the last 12 weeks - at first, all started well.  Now I have to use a personal injector.'

'As to assistance from the drug company, I have no complaints. They have trained me, they supply the drugs which are delivered to my front door and they have a good follow-up service to deal with any problems I may have.'

'My family are very good. The MS Nurse has been around to our home and had a one-to-one with our daughter, explaining what is going on and what may happen to me.’

If you would like to add your story then please email the web team.