• Beth Matthews

Perspectives of Fibro | Part Four

I asked my friend Dave to tell me about his perspective on Fibro, as a husband, a friend, and a carer. As someone married to a person with Fibro we explored the toll and the rewards that come with being a carer in a relationship. Whilst not always an easy road, it’s an inspiring one.

Can you tell me about the first time you used a mobility aid? How it made you feel, why did you use it when you did, did you want to use them sooner but were too afraid?

It's hard to pinpoint an exact moment because I knew of Maisie’s disability before we got together, as we had been friends for a while before and I saw that she needed mobility aids. It's kinda just been an accepted part of the relationship. One moment that clearly sticks out in my mind is when I had some severe back problems and needed a mobility scooter myself, so both of us were whizzing around Kent campus on them at the same time. We were definitely a sight!! We used to have races!! That particular experience of using a mobility aid myself was daunting and it came with a lot of questions and concerns from friends and family. But, I was never afraid of mobility aids. It's just part of getting life back on track

Can you describe what a 'good' Fibro day looks like for you as a carer?

As a carer, it can be sometimes challenging to juggle all the responsibilities of your own life and caring for someone else. On the good days, it can feel like a pressure has been lifted and seeing Maisie more mobile is encouraging and it can be very tempting to suggest going and doing all the things we put off... But I know it's about managing energy levels now. A good day means we do things together that I otherwise would either put off or do on my own as she would need rest. It's a strong connection.

Can you describe what a 'bad' Fibro day looks like for you as a carer?

Difficult to emotionally engage with some times, as the chronic pain toll on mental health can cause arguments, upset or challenges that we didn't expect. I think that's a bad day: not knowing what to expect and having to take things one thing at a time. Often it means leaving Maisie to rest and feel better, and it can be lonely for both of us. Lots of sleep is usually needed and that can disrupt routines and create additional barriers to a relationship which we need to overcome. A bad day is just day! We always overcome it and I just put extra effort into looking after her.

What is one thing Fibro has made you grateful for?

My ability to continue my day to day routine without needing to majorly adjust it unexpectedly, and it's made me grateful for my health and that of others. It's made me grateful that there are people we can rely on for support in the times we need it. Good friends are hard to come by.

What is one thing Fibro took from you?

I've always been a spontaneous person and that has been a challenge to adjust to. Needing to plan everything meticulously for our benefit can come with challenges when other people don't understand the condition.

How does Fibro impact your social life?

A lot more staying in and catching up with people on phone calls etc than down the pub. Outside of a pandemic, it's strange... Sometimes Maisie will have the energy to do a full heavy night out, and others we may need to leave early. There's a lot of planning and admin that other people might not usually have. It doesn't bother me, it just takes a bit more energy to have a social life and not everyone understands it sadly.

Going forward, there is lots more research being done into chronic conditions like Fibro. In five years time, what would you like to see happen?

New innovative treatments that aren't just reserved for those that can afford it, such as Lady gaga. With a good care team, a good physio, and aids such as hydrotherapy it's a condition which I think can be massively improved in a lot of people.

Describe Fibro in 5 words.

Expect the unexpected, don't panic.

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