At work with MS How will MS affect my work?
One of the challenges for people with MS is the variability and unpredictability of the condition. No one knows at diagnosis what course their MS will take. In MS, damage or scarring occurs to the myelin sheath – a layer of fatty protein that protects the nerves in the same way that insulating material protects an electric wire. This damage (called demyelination) disrupts the way in which messages, or nerve impulses, are carried to and from the brain and so it can interfere with a range of the body's functions and thought processes.
When MS first affects you significantly you need to understand what your personal MS is doing to you. You have to redefine many aspects of your lifestyle and what is important to you; some changes are harder than others and work is only one of these.
The term 'multiple sclerosis' comes from 'sclerosis', which means scarring and 'multiple', which relates to
the sites of the scarring, which can occur in different places throughout the central nervous system (CNS) - the brain and spinal cord. The CNS receives, processes and stores information and initiates instructions for bodily activities.
The symptoms experienced will depend on the position and extent of the nerve damage. In the earlier stages of MS, the CNS can often compensate for areas of damage by repairing myelin or by re-routing messages around the problem area. This explains why episodes of symptoms (relapses) can be followed by weeks, months or even years when symptoms improve or disappear (remissions). However, if the area of damage becomes too large, communication with that specific part of the CNS may become permanently blocked.
MS is different for everyone; it is not possible to predict what will happen. Everyone will experience different symptoms at different times and the impact of the symptoms on work will very much depend on the type of work and personal experience of MS.
"I have managed to continue with very little change other than reducing the amount of overtime I do. My advice is to continue as normal as far as is possible without making drastic changes early on and deal with issues as they present themselves."
"It takes time but you can learn to set personal goals which challenge your MS and its boundaries and that you can always win. The workplace is a good setting for some of these goals."
"Work helps me stay in the real world and not get consumed by MS."
Some symptoms which could impact on work include
fatigue, problems walking or standing for too long, difficulty in lifting or carrying, the need to go to the toilet more often, and concentrating or remembering things.
A collection of short stories, taken from the Work foundation report
The work foundation report - Ready to Work?
Meeting the Employment and Career Aspirations
of People with Multiple Sclerosis
PC Andrew Blacker's Story Read the story...
PC Andrew Blacker has had a full career with the Suffolk Police force- covering duties ranging from beat officer, to football and riot policing to his current role as Licensing Officer. Andy, 48 was diagnosed in 1994 after joining the police in 1992. He has managed to do all the things a regular police officer might, but it is only been possible because of the support his employers have given him throughout his career, adapting as the effects of his MS symptoms have changed over time. This has meant changes to not just his role over the years but also adaptations around the station and a dedicated parking space. Andy has also managed to complete the Great North Run, abseil down the local hospital building (and will be doing so again later this year) in support of MS
Helen Blackwell's Story Read the story...
Helen was diagnosed in 1999, just one year after staring work as a Community Nursery Nurse in Hampshire. Her employers have always helped Helen manage her symptoms in the workplace. But it was having a family that made Helen realise she couldn't manage all she used to do previously and that she needed to work part time. Her employers and colleagues continue to help Helen 'look after herself' at work- making sure she takes breaks or does the work she can manage if she is struggling with numbness or fatigue. After her last yearly catch up with her occupational health colleagues they have even installed a fan in the office as Helen struggles at times with the heat.
Jackie Mumby's Story Read the story...
Jackie was a bus driver until ill health meant she needed to stop work at the end of 2008. After diagnosis with MS in 2010 Jackie found it hard to find an employer willing to take her on again. But last year she was lucky enough to find an employer who was willing to 'see what happens' and they took her on. After another relapse the firm arranged for Jackie to move to an office role and were looking to promote her to transport manager until sadly the company ceased trading in May this year. But there are a few rays of light for Jackie. One the director's of her previous company has offered her a flexible role in his accountancy business, and her old transport manager has offered her work driving with his new firm. But Jackie worries she might not be able to take up either role because they are each over 100 miles travel to get to. Both offers demonstrate the value her old colleagues place on Jackie's work and commitment. Like many people with MS Jackie is struggling to find work closer to home with other companies as open minded as her previous employers.
Lisa Hughes Story Read the story...
Lisa, 45, was diagnosed with MS and had to take 9 months off work. She'd always work long hours in her role as Finance Director previously and her company weren't sure that a part time role would work on her return. It took a while to get the right balance for both Lisa and the company and it was a learning curve for both of them. But 2 years later and Lisa continues to play a leading role for the company as Strategy and Initiatives Director. This role allows her to work part time and juggle medical appointment but still uses her skills to the full.
Nerys Adu-Bonsra's Story Read the story...
Nerys lives in Catford, London and was diagnosed in 2003 after 4 years of symptoms. Nerys used booklets from the MS Trust that her MS Specialist Nurse had suggested to her employer. Her MS Nurse helped her make some adaptations at work which would help her to continue working and stop her getting too fatigued. Nerys moved into her previous role with the support of her employer after the role of branch bank manager became too much for her to continue. That and her current role allow her more flexibility and the option to work from home which both help with her fatigue.
Steve Strange's Story Read the story...
Steve manages the Waterend Barn pub/nightclub in St Albans. It is one of the largest and busiest in the country. His employers JD Wetherspoon have helped Steve to continue his career in catering after he was diagnosed 10 years ago by giving him support and flexibility at work. Now married with a young daughter Steve continues to juggle the long and often unsocial hours that come from working in catering with bringing up his family. Changes at work such as air conditioning, adapted chairs and flexible working mean Steve can better manage the fatigue and other symptoms that come with his MS better and continue to lead his team of 40 staff at work. He's even managed to climb Kilimanjaro in aid of the MS Trust in the past couple of years- something he says he'd never have done if MS hadn't pushed him to do it.
Next page - At diagnosis
