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Billy Ray Mansell: Exercising whilst living with fibromyalgia

Billy Ray Mansell answers questions below about how he exercises whilst living with fibromyalgia. Billy supports the We Are Undefeatable campaign which encourages activity and exercise in those who are living with a health condition and has provided us with an informative insight into his experience of this. 

How can fibromyalgia make you feel, and what barriers would this bring to exercising? 

With my fibromyalgia, I can’t ever seem to escape the physical pain and the muscle tension I have all over my body,  the random aches and pains, and the fatigue on a bad day can be tough to manage. 

Consequences of this can lead to:

- Forced bed rest. 

- Sometimes I cannot exercise how I would prefer or at all

I may have to strip this back down to my roots like some simple stretching, some short walks or low impact activities (activities with less chance of additional injury but what will still have a positive impact with me moving more).

These are just some of the physical barriers, which again are closely linked with the mental health barriers, such as when I ask myself, can I do that?, my body won’t like that?, this will make me worse?, all questions I have asked so many times but the biggest one for me is, not even necessarily the thoughts of doing whatever activity it may be, but the aftermath of doing some activities don’t necessarily impact me straight away, they hit me hard the following day or the day after that. 

In my view, it’s a constant day to day management of both physical and mental health and I find it important when I challenge myself outside of my comfort zones as I then also learn whether my body can/ cannot do and/ or how this makes me feel after. 

In many cases, activity and being active, despite how it makes me feel sometimes, I enjoy the moments so much, I push myself to do these activities again as well as having very powerful motivations to keep on pushing through where before I would not have done this. I do get anxious and depressed from constantly living like this, but I try to channel it positively in the way I choose to cope and manage day to day.

 

Have you struggled to keep active or during exercise because of fibromyalgia, and how did this feel?

It has been a constant battle keeping active with fibromyalgia, I do struggle with this and I can’t even tell you how many times I have said, that’s it, I want to go back to the consultant and say how I feel like I’m pushing too much and whether this is having a positive long term effect or not, but I live for the moments it gives me with those I care about and also those I connect with through it. 

It has been a progressive pathway and I understand my body better and when to do more/ less and still to this day it’s a learning curve of how far I can push myself. During exercise with all the natural chemicals in my body releasing and flowing through my body I find this does help, especially when I get bursts of adrenaline. 

I can tire very easily for example when swimming or running. I find that I can build up resilience or how far I can go before my fatigue kicks in. This can hit me hard, and in the past resulted in me collapsing, falling to the ground but I have either picked myself back up or someone else has and I’ve gone on again. This can be different from day to day and I have noticed that over time, I have managed to build up more resilience and increased distances and effort in various movements / activities. 

This has been a progressive pathway for me but I feel like I’m getting to the tipping point of this now as I have pretty much trained myself to become an athlete and a coach, with nowhere to turn but continue being active, since I am effectively self-managing and discharged from pain management. I feel I am doing the best I can to get by day to day and to try live some sort of quality of life with my family which has always and will be one of my biggest personal goals despite the lack of support from the benefit system which I feel has penalised me for being active and managing differently.  However, I found this support absent even when I was not exercising and on lots of medication... 

I appreciate the moments it gives us as I can remember too strongly what it was like for me on medication and inactive and I was in the worst position in my life, both physical and mentally. Being more active has allowed me to challenge myself and to channel this into my life in many positive ways, through volunteering and into work, it has given me hope and ambition of a brighter future and way I can manage but I understand when I go full on, this can only last so long before I need a good rest and then start back at basics to build up again. During my few years of leading an active lifestyle, I have had to revert to my basics many times. 

 

What kind of activity do you do?

I started with small walks, stretching, yoga and mindfulness,  many of which I mastered during a pain management programme and introduction into my multi-disciplinary approach. I progressed to low other impact activities e.g. cycling, before becoming a Disability & Inclusion Sport Ambassador (Essex All Together) which propelled my vision and allowed me to explore more inclusive activities and events. Additionally, I ventured into Soccability then my Community Activator Coach Apprenticeship with Active Essex at Essex County Council through Coach Core. 

This allowed me to not just explore activities but how I could support others, develop my own engagement, and learn how important it is to understand the benefits of various activities. I love helping others, so being in my various roles motivated me to help even more people and develop myself. 

With very limited support, I have needed to navigate my way through very complex systems, yet I somehow found my pathway and developed my resilience throughout, and built what I would call 'The mask of Pain'. Whereas, before I would moan all the time about my symptoms and life, I gave up complaining and decided to out on the pain mask where I will push through everything life throws at me and try be the best version of me despite living with fibromyalgia.

I have participated in many campaigns such as the 3030 Essex Campaign, National Fitness Day and most recently, The At Home Superheroes.

 

Would you say that you have benefited both mentally and physically from keeping active? 

I would say that I have certainly benefited both mentally and physically from keeping active, you cannot just see the difference in me but everything about me has changed since I embraced this multi-disciplinary approach and a more active lifestyle. It’s not just helped me; it has helped me help others as well and pass on this knowledge to them. I feel that before when I was inactive and living with fibromyalgia I was on a downward spiral to somewhere very dark and I feel that this pathway has lifted me up and given me hope that actually, this is better for me long term and I have to adjust daily and manage this day to day. 

I also feel this has benefited my relationships with my family and fiancé in that it has given us all hope that despite living with such a debilitating condition, there is somewhat greener grass on the other side of this journey. 

I also feel that my age, that I made this change early on in my diagnoses (early intervention/ prevention) has also stopped me from spiralling down and gaining more complex long-term conditions. I found there was a lot of my symptoms associated with the medication I used to be on, so by slowly coming of these, and introducing this pathway, it has allowed me to see what was my fibro and what was a result of the medication.

 

Lastly, what would you say is the key thing to keeping active, whilst living with a chronic illness? 

The key has to be motivation, being in the right place and having understanding from those around you, including support and encouragement to be more active. It’s crucial to have this motivation inside you to try and keep active. 

Key to all of this, is finding what you enjoy, what you love, what makes you tick, and then encouraging those around you to be part of that with you. It’s so important we explore mentally and physically, challenging ourselves even if that is getting dressed today, walking 50 metres, stretching in bed or any kind of activity in your daily life. I note that if I would have tried most of what I can do today in my early stages, I would have failed miserably and probably turned myself off from even trying most of what I do now. 

It is important to start small, build it up, learn your body, if you over do it, understand where you went wrong and if you want, try again, but start smaller and build this up over time. Patience is key, determination and dedication will get you results, but make your own goals and pursue them. Finally, be inspired, be inclusive and be you, when embracing activity everyone deserves that frankness and will appreciate and be part of that experience, inclusion really does matter. I also find it key about how you build your social network and network when exploring activities too, this I have found can be done virtually on line and in person.

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