Mike
Mike’s partner was diagnosed with relapsing-remitting MS in 2009. She has frequent relapses, which more or less immobilise her. Mike cares for her full-time, with some help from paid carers, but sees himself as her partner, rather than her carer’.
Mike met his partner in 2008, when she was already showing some signs of MS. They spent a difficult year trying to get a diagnosis, which was confirmed after a lumbar puncture in 2009. Their living arrangements were disrupted without warning and they moved from the South of England to the Highlands of Scotland, where members of Mike’s family live, and where he spent some time in the early 2000s.
Mike speaks highly of the health and social care they receive, though he, and she, would like to have more carer input so that Mike could return to work. His partner has relapsing-remitting MS but it seems to be quite an aggressive form. She has had relapses every 11 to 12 weeks, which more or less immobilise her. Even in phases of remission she can only walk to the end of the street and has to use a motorised scooter to get any further on her own. She has a personal carer for 30 minutes each day to help her shower and dress. Another carer sits with her for a 3 hour period each week so that Mike can get some time to himself. He finds this crucial to maintain his own identity, as otherwise he is caring for his partner full-time, very willingly, but at the cost of becoming completely wrapped up in the role. He doesn’t see himself primarily as a carer, but as a partner.
Mike describes receiving the diagnosis, and living with MS, as having turned their world upside down. His partner has an adopted child from a former relationship but at the moment she is unable to see him as often as she would like and feels guilty about not being a parent to him. She is frequently in a very low mood because of the impact of MS on her life and has talked, with Mike, of ending her life. With her agreement, he now controls and dispenses all her medication. Mike and his partner married in August 2011 and Mike emphasises that he is in it for the long-haul.’
Mike is active in an internet-based organisation called Shine on MS, originating in Scotland and dedicated to funding and finding a cure for MS. He is currently one of the administrators for the group.