Fibro Lightup 2025

by Des Quinn

Once more buildings lit up around the world to celebrate International Awareness Day and bring much needed awareness to our condition. As well as buildings in the UK lighting up, we saw them being illuminated in Canada and a significant amount in Italy.

To extend our efforts within the UK and make next year brighter and better than ever we need people to help make this happen. As well as encouraging buildings to light up, we need people to record it by taking a photo or a video.

Some locations do not light up their buildings, so we are looking to have a few flags flown for awareness next May. But, if you can think of something that would make an impact, or a splash in the local newspaper next May then get in touch and help us raise awareness of fibromyalgia.

Suggestions for buildings are great but if you know someone who can get the light switch flipped then please reach out to us. Even better we need people to take photos of the building that do light up. 

Contact us at head.office@fmauk.org and thanks for all of those that took part. 

Standing Beside Her: A Husband’s View on Caring for a Partner with Fibromyalgia

by Lucjan

When I married my wife, I imagined a life filled with shared adventures, laughter, and the usual ups and downs. What I didn’t imagine was how much of our journey would be shaped by an invisible illness called fibromyalgia. If you’re reading this, maybe you’re a carer, too. Maybe you’re a partner, spouse, parent, sibling, or friend standing quietly in the background, holding things together. And if you are, I want you to know: you are seen. You matter. 

My wife’s fibromyalgia came into our life like an uninvited guest — unpredictable, unrelenting, and exhausting. I watched the woman I love transform from vibrant and energetic to someone fighting just to get through the day. Simple things we used to take for granted — a walk in the park, a spontaneous weekend trip, even a quiet evening together — became difficult, sometimes impossible. At first, I didn’t know what to do. I felt helpless. I wanted to *fix* it, to make her feel better, to ease her pain. But there’s no magic fix for fibromyalgia. It’s an ongoing storm — and as her partner, I had to learn how to stand beside her in the rain. What they don’t tell you when you become a carer is how lonely it can feel. Friends and family often don’t understand. 

Invitations start to dry up when you cancel plans again and again. Conversations can turn awkward when people ask, “But she looks fine — what’s wrong?” There were days when I felt like I was fading into the background, quietly holding up the world while no one noticed. And yet, I wouldn’t trade this role for anything. Caring for my wife has taught me patience I didn’t know I had. It’s taught me how powerful small acts of love can be. When she’s having a bad pain day, sometimes just sitting beside her, holding her hand, and listening matters more than anything I could say or do. I’ve learned that being present is one of the most healing things you can offer. 

But I’ve also learned something else, and this is important: carers need care, too. For a long time, I thought being a “good” husband meant sacrificing my own needs. I thought I had to be endlessly strong, never complaining, always putting her first. But the truth is, you can’t pour from an empty cup. Burnout is real, and it sneaks up quietly. If you’re a carer, please remember you are allowed to take breaks. You are allowed to have needs. You are allowed to ask for help. I had to learn to accept support — whether it was a friend offering to sit with my wife while I took a walk, a neighbour dropping off a meal, or a quiet cup of coffee on my own. 

These small moments gave me the strength to keep going. Carers’ Week is a beautiful reminder that we are part of something larger. We are not alone. Across the UK, thousands of people are quietly holding the weight of caring for someone they love. You may not see them in the headlines or on the news, but they are there — and their love matters deeply. To the husbands, wives, partners, and family members who are quietly carrying the load: I see you. I *am* you. You are not failing when you feel tired. You are not failing when you need rest. You are human, and you are doing something extraordinary. And to those living with fibromyalgia, like my wife: thank you. 

Thank you for trusting us to walk beside you. Thank you for your courage and your vulnerability. You remind us every day what real strength looks like. As we mark Carers’ Week, my hope is that more people will understand what caring really looks like — the invisible labor, the quiet love, the daily resilience. I hope we remember that caring is not just about the person receiving support but also about the person giving it. If you’re a carer, take this as your gentle reminder: you matter, too. Your health, your feelings, and your well-being are just as important. Together, we can build a world where no one has to walk this path alone.

Ten Footsteps for Carers

Many of us are familiar with Ten Footsteps To Living Well with Pain available on the Live Well With Pain website but not so many realise that they also offer Ten Footsteps for Carers.

1. Being a Carer - If you are regularly looking after someone because they have a long-term condition, you are a carer
   • Being recognised as a carer helps you get the support you need
   • You may be entitled to Carer’s Allowance
   • There are lots of organisations that can help carers
2. Acceptance - Recognising your carer’s role can be a first step towards accepting, rather than fighting it.
• Learn to seek help rather than struggling on your own
• Being a carer may give you an opportunity to look again at what life means to you
• Many carers face a lot of change; fighting it is exhausting. Embracing it can be heart-warming-
3. Maintaining relationships - As carers, we can get so busy and overwhelmed we forget to communicate with others
   • If we don’t maintain our relationships we risk losing them – and the richness they give to us
   •  Learn to connect with others through open and honest talking
   • Remember – you are still the person you were and the relationship with the person you care for still has, at its core, the love or friendship it started with
4. Setting Goals - Having goals helps you to focus on the things that matter most to you
   • Developing goal setting skills will increase your ability to achieve your goals
   • Using SMART goals will give you a better idea of how to go about achieving them. And you’ll be far more likely to get there!
   • Don’t forget to build in some rewards!
5. Managing Your Commitments - Activity diaries are a really useful way to get a clear idea of how you might possibly find some time for yourself 
   • Another strategy that might help is “Five teaspoons of energy”
   • Try changing ‘unhelpful thoughts’ into kinder ones
   • Returning to work or staying in work can be beneficial to you – and the person you care for too
6. Managing Thoughts and Moods - It is normal for human beings to notice ups and downs in their mood
   •  Carers can feel angry, frustrated, fearful, low and unmotivated
   • There are lots of skills you can learn to manage your moods better
   • Remember – we all need support and encouragement from other people, so try not to feel bad about asking friends and family to help you
7. Relaxation and Mindfulness - Relaxation and mindfulness are good for us
   • Learning relaxation can be easier than you expect, although it does take practice
   • Mindfulness can be a helpful way of managing distress and focusing on enjoyment
   • Mindfulness practice helps to reduce stress hormones and reduce unhelpful emotions
8. Health For Carers - Healthy diets fuel our bodies to give us the energy we need, boost our immune system, and can also improve our mental wellbeing
   • Keep active with activities that are meaningful to us and aid our fitness and wellbeing, rather than just those that meet basic needs
   • Remember – if you don’t look after yourself, you won’t be able to support the person you care for
9. Good Habits For Sleep - It is very common for people to have difficulties getting to sleep or staying asleep
   • Research shows there are a number of good habits to get into, that can aid sleep
   • Try techniques like ‘brain dumps and brain spills’ to remove worries from the night-time
10. When Caring Ends - When caring comes to an end carers often feel they need to “take a break”
    •  Even if the change is one you hoped and planned for, you won’t necessarily feel just relief, as you’ve also lost a valued role
    • If the change is not one that you wished for, remember: it is not selfish or uncaring to enjoy your freedom
    • Reconnecting with others will be an important part of moving on

Hazel talks about her Fibromyalgia on ITV/STV

Over the years working with the Charity I have had many opportunities to do interviews for newspapers, magazines etc, sharing my own story and experience of having fibromyalgia. However, when I was recently approached by ITV (after they saw an online interview I did last year), asking if I would be willing to take part in their Tonight programme it was a huge step outside my comfort zone.

Even after I agreed to take part, I still had doubts about being filmed to appear on a prime time TV show. The subject of the show was “How to get Healthy at Home” and knowing how some journalists will edit to suit their own agenda was concerned that my words may be taken out of context.

Arrangements were made for a videographer to come out to my house and we spent approximately 3 hours recording my story and experience of managing my fibromyalgia symptoms, along with some shots of me doing things like sorting out my tablets into a dosett box. We spoke about all aspects of my fibromyalgia journey from when my symptoms first started with the birth of my daughter in Nov 1993, getting diagnosed in May 2005, having to give up work and managing to return years later to work with the Charity and more. We also spoke about the different ways I manage my fibromyalgia – where medication helps to take the edge off the pain but it is all the other self-management techniques such as pacing, keeping active, heat, distraction etc that enable me to keep going.

In the end, the filming itself was not as stressful or as difficult as I had imagined it would be. After the first few questions, I started to forget that I was being filmed. The most nerve-wracking part was the night it was aired on TV. Living in Scotland, it does not air until later in the evening than it does on ITV, so it was reassuring when I started to get friends post online that they had seen the show and I came across really well. I did sit cringing while watching myself but I was really pleased with how the editing was done and that my main points came across.

I’m always happy to share my story and experiences in the hope that my words may help another fibromyalgia sufferer to feel that there is still hope.

My only disappointment – I didn’t actually get to meet Dr Amir Khan who was presenting the show !

June 12th and 26th

Online Support Group

Join Hazel & Zoe for an hour of fibromyalgia chat and sharing experiences. Thursday 12th and 26th June from 6.30 - 7.30pm. Meeting will take place on MS Teams - camera can be on/off. Please register to confirm attendance - MS Teams link will be sent automatically. If you are unable to attend, please cancel your ticket and allow another member of our fibromyalgia community to join.

Any queries please email hazel.borland@fmauk.org

Fibromyalgia and how I came to work in the care sector

by Tania Smith

I was diagnosed with Fibromyalgia approximately 2 years ago although I had spent years feeling unwell, exhausted and hurting. I was teaching at the time and the school I taught at was not at all supportive. I had a few spells of sickness due to back ache, knee pain and was generally burnt out. I was sent to the work occupational health who recommended some things to put in place to help but the school said it was not possible. I decided that I had to do something as I could not continue like this. 

The school were asking for people to take voluntary redundancy, so I did. I was undecided what to do next, but I knew I had to reduce my hours, have natural daylight, less stress and definitely less physical activity. After visiting an elderly family friend, he suggested I visit older people who live in their own homes who may not have many visitors as he said I am a very good listener, and I can talk and talk and talk. I contacted a few companies and chose a family run company who invited me to an informal interview. I was honest about my illnesses and told them what I struggled with. They said that they could certainly help to work around this and was offered a job. After about 6 months my hands became really stiff and painful. I saw a rheumatologist who diagnosed fibro. 

I said I knew nothing about it, and he recommended I join a support group. I told my manager at work, and he said that there are 2 other people in the company who have fibro and he said he would ask them if they would have a chat with me. One person was really helpful and said join a support group and talked about being kind to yourself and not over doing it. The other person said she has had fibro about 15 years and suggested that it is too freely diagnosed nowadays. I said she was not helpful, and I thought she would have been more understanding. I decided I would have to research fibro myself. 

I soon realised what I can and can’t do, had a few meetings at work and discussed the clients I was struggling with and what would help me to continue working. I also explained that with fibro things can change all the time so we agreed that I could contact them anytime to discuss any concerns. I do some calls called ‘sit ins’ which involves sitting or taking people out, either to give family members a break, or for them to go out if they have no one to help them with this. On days when I don’t feel so great, this means I can stay in with them and I have compiled activities to do around what they like. Sometimes as they don’t see people very often and they just like to sit and chat, and this is definitely where my skills come in. 

I also borrow memory boxes from the museum in Weston which can instigate great conversations. Also, as I am hard of hearing and wear hearing aids many clients say their hearing aids don’t work or not working properly. I can spend time showing them how to care for them and explain slowly and properly. 

I also wear a Transdermal patch, and this helps especially when they first start wearing them as often it can have side effects and I can notice and report this straight away and the most important thing is pacing, as many of us know this can be quite difficult especially if you have always been an active person. I can then help set up a plan to help achieve this. I also assist with some personal care, and this is making sure they are safe having a wash or shower and making breakfast. At present I start at 7am but this is getting more difficult for me, and I will soon have to start later. But I do want to keep working for as long as I can and hopefully with the right support this will be possible.