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“It has taken time to accept that it’s OK to make time for myself, too”

Ian and Jo Fletcher on being a husband-wife team when one of you is a carer

Ian & Jo resized.jpgIan Fletcher was diagnosed with multiple sclerosis (MS) in 2006. Only two years in to their relationship, the couple faced the challenge not only of managing his new health condition, but navigating their change in dynamic as Jo took on the role of his carer. “Initially I found it daunting to take responsibility for the many things that Ian did for us,” admits Jo. “As a couple you tend gravitate to taking on those jobs and roles in which you feel most confident. However, I've learnt so much and grown in confidence, doing things that I would once have avoided at all costs!”

“It was hard for me to admit that I needed Jo's help more frequently,” says Ian, “and I was unsure how Jo would cope. Over time my confidence grew as we learnt and faced new challenges and changes together.”

One of the biggest challenges was Ian handing over the apron strings to Jo, as Ian prided himself on his culinary skills. “I found I was unable to do things I had previously and felt frustrated. I really enjoyed making all our meals and impressed Jo when we met with my cooking! As MS progressed I took on a supervisory role and Jo now cooks our meals for us, with supervision.”

“As I took on this role, my skills improved and I found that I enjoyed cooking too, with lots of supervision!” says Jo.  

Change and adapt

The couple say spontaneity is difficult, but they have learnt to be flexible with arrangements and commitments, allowing themselves more time and accepting that plans may have to change on occasion. “We discovered that we were unable to do some things and coming to terms with this was, and can be, challenging,” says Jo. “Over time, we have adapted to enable us to continue to enjoy many things we did before MS came along. 

“We have been so lucky to travel to many countries together, but nowadays we face more limitations and there are many things to consider before deciding on a location. However, this hasn't stopped us and we have had some amazing trips in the UK and abroad (albeit with a little more forward planning).   We continue to enjoy trips to the theatre, watching our beloved England team play rugby at Twickenham, and plenty of socialising with family and friends.  

Extra support

The couple have amazing family and friends who have been very supportive over the years and continue to be a major part of their lives.

They also have a lot of praise for the multidisciplinary team at East Suffolk & North Essex Foundation Trust. “The collaborative approach to the provision of Ian's care has been invaluable and we are so grateful to everyone in these teams who continue to support us,” says Jo.

Ian has been going to Josephs Court, the wellness centre at MS-UK, twice weekly for many years to build and maintain his muscle tone and strength. However, Josephs Court has had an incredible impact on his mental health and wellbeing too. “We greatly value the support from the incredible staff team at Josephs Court and wealth of information that has had such a positive impact on us both.”

Self-care 

Caring for Ian has come naturally to Jo, but she admits she’s had to work harder at caring for herself, too. “It has taken me time to accept that, on occasion, it's OK for me to have a quiet day and make time for myself, too. As a couple, and individually, we have strong family and friend networks. Thanks to our family I am lucky to be able to meet with friends regularly, which I value greatly.

We asked Ian and Jo what advice they would share for any couple beginning this kind of journey together and they said the following

·   Listen to your body and allow yourself time to rest, when possible, when you know you need to

·   Whenever possible, adapt your lifestyle to continue enjoyment of things that you love to do (albeit with more planning). Don't assume that something isn't possible  

·   Be honest with yourself, as a couple and others, about changes, challenges, your needs and wishes

·   Keep your sense of humour and laugh together. There have been so many occasions when things haven't gone to plan or have gone wrong. However, often these challenges have been the memories that have made us smile and laugh in retrospect

·   Accept that it's OK and natural to have good and bad days in your relationship, the same as any couple

·   It is important to make time for one another, as any other couple would do. MS symptoms such as fatigue may impact on your daily lives and your ability to spend quality time together

·   Don't place unrealistic expectations and pressure on yourselves. Talk to those around you in order that they understand your situation and can support you

·   Don't assume responsibility for all things, as you each have different opinions and strengths.  MS often deprives freedom of choice 

·   Take time for yourselves as individuals and stay connected with your interests

·   Make plans, have goals, hopes and dreams   

“We've faced many changes and challenges due to MS,” says Jo. “However, these experiences have strengthened an already strong bond. We have a greater understanding of one another as a result of our situation. We each have our own strengths and, as a team working together, we feel we can tackle anything.”