Carers Week: ‘You know you’re not the first person to go through this, but it can feel that way’

As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis…


mark_brightburn_smPortia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.

You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.

There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.

I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.

Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.

Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.

Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.

Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.

For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.

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This entry was posted in Carers, Carers Week, Caring, Chronic illness, Diagnosis, disability, Disabled living, family and MS, Guest blog, MS, MS-UK, Multiple Sclerosis, New Pathways, Uncategorized and tagged , , , , , , . Bookmark the permalink.

2 Responses to Carers Week: ‘You know you’re not the first person to go through this, but it can feel that way’

  1. Geraldine says:

    I read up to the 6th paragraph & stopped after that very last sentence of it . Because for my husband, who has ppms, his life HAS most definitely stopped. Most days he just exists rather than lives, & at 45 & father of 4 is horrificly devasting.

    Liked by 1 person

    • msuk2015 says:

      Hi Geraldine, we are sorry to hear that things are so difficult for you and your family. We support anyone affected by MS, including family carers. If you ever need to talk or want information on the kinds of carer support available please feel free to call the Helpline on 0800 783 0518 or via our Live Web Chat service http://www.ms-uk.org/livewebchat

      Like

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