How Do You Live With Fibromyalgia?

Fibromyalgia suffers, does this resonate with you?

There seems to be an increasing number of days where I open my eyes and the first sensation, I feel is pain or aching through my entire body. The ‘silent disease’ at it’s known, the one where you can be in so much discomfort and pain, but no one can see it to understand your mood. I’m asked a lot, how do you live with Fibromyalgia?

My head pounds from the tightness in my neck and shoulders. My body feels heavy, and it is not conforming to the ‘fresh as a daisy’ upbeat gal that I pride myself in being. Before 2020, I was in the best shape that I’d been in for so long. Climbing mountains whilst working in France, enjoying cycling all be it tough up the hills. It through me when it all changed overnight.

I try and do everything I holistically

Before I went to Phuket in December 2021, I was thinking about painkillers before my toe had even made its way from under the duvet. That goes against everything I believe. They didn’t even really help that much; they just took the edge off a little. Up until the last month before I had left for my detox, I had been medication free and managing the condition with meditation and Yoga. It is only now that I am back, cleansed from all pollutants that I had filled my body with, that I am back to looking for alternative, natural ways in dealing with this ‘new normal’.

I kept saying to the Consultants, ‘I used to teach 7 Pilates classes a week, I cycle everywhere and don’t use a car, but now, getting out of bed can be the toughest challenge’. I remember one Consultant being stern with me one day and it put me in my place. ‘Stop focusing on what you used to be able to do and start to learn about what you can do now’. Then I cried. It hit me but he was right. I practice mindfulness, living in the moment, but I just couldn’t let go of the body that had left me.

My body changed overnight

But in December 2020, I woke up one day and discovered that the universe had swapped my body out for what I now have. Don’t get me wrong, I’d had back problems that would flare up from an ancient car accident that I had, but this was a different level. 6 months later, I was having blood tests every Friday, GP calls one a week and I was trying to analyse my entire being to understand what on earth was going on. It was like looking at someone else.

The consultants had discovered a heart condition, which to this day I am managing without medication, and I have meditation and Yoga to solely thank for this, it’s even improved over the past few months. With that, came the advice to stick to walking, Yoga and swimming, no cardio. The weight started piling on, I started to comfort eat and things started to spiral.

The only thing that was different at the time that I felt different, was that I was working full time, working a 2nd job at the weekend in my grandmother’s care home so that I could see her during Covid, I was a career for my mother, and I was the ‘go to’ person for anyone and everyone. I was burnt out. I hadn’t been listening to any advice to slow down, I couldn’t. It was in Covid times, stressful, overwhelming, unchartered waters. I just had to get through every day.

2 diagnosis at the same time!

It wasn’t until November 2021 that I was given the diagnosis of being Perimenopausal and having Fibro. At that point, it wasn’t so much the disappointment that I had this condition, it was the relief that there was a name for it. Relief that this wasn’t all in my head. I had so many times to each consultant (and there were a lot of them) that if this was something that I was causing to happen to myself, they had to tell me as I just couldn’t figure it out. But no, every single one of them said that what I was experiencing was unheard of at my age. It explained the brain fog, fatigue, and general feeling that I wasn’t operating at full capacity.

So, I knew what it was. It didn’t change anything; I was already following the advice they gave in all the literature as I was trying to heal myself for months. I just had to learn to become more compassionate to myself and patient with myself. I’d lost my way in meditation to remember the last couple of months in 2021. But it brought me right back on track.

I love to detox in Thailand

In December 17th, 2021, I went to Amity Wellness, a detox retreat that I’d previously been to. I spent 9 days riding the ways of emotion, physical discomfort, and mental challenges and embraced the journey. After 3 days, I started to settle into the rhythm, I was feeling better, and I was starting to see why the Universe had slowed me down and given me this sign. Superwomen herself couldn’t have sustained the life I had taken on. I’d left my life of working and travelling and returned to the UK to be there for everything during lockdowns, but I’d forgotten along the way that I mattered too.

I promised myself that when I returned from Thailand, this was it. Everything was going to be different, and I would revert to my good habits and be kind to myself.

So, I did. It hasn’t gone down well with everyone as they are not used to me saying no. It is very rare that anyone will ever say, ‘Hannah, how are you, do you need help’. In fact, most people would normally not even how I was at all, let alone really WANTING to know.

Do you find the same?

I don’t know if you have experienced the same, have you? Although I say, I’m having a ‘flare-up at the moment’ those closest to me still don’t understand what this means. I’ve asked them to read the literature that I have given them, research it and understand it so that they are supportive. But not all of those around me want to do that. Is that people are scared of what they do not know? Do they think that it’s all a load of drama and just another thing that has happened? I’ll come back to this important point another day about those around us and perception in the workplace of these conditions.

I have learnt boundaries. I have learnt to say NO. I have learnt that to be healthy, happy, and content again, I need to put myself at the top of my priority list. It’s hard, it’s not a way I live my life, but I must do it. I’m not saying that I am still not there for those close to me, but sometimes, we have to walk about from those that take our energy away from us.

I came back, gave up my job (family and professional) and decided it was time to get back to what makes my heart sing. Wellbeing. Helping those that need someone to reach a handout and guide them on their journey. Oh, how I have missed the face-to-face appointments, the achievement and pride of seeing those that I have worked with, flourish into butterflies.

Would you like personalised support?

I am an open book, my heart will always remain on my sleeve, but the difference is now that I will use it to fill those that need it most with energy, love, and guidance. I absolutely love helping you.

Be kind to yourself.

I’d love to share my 1 to 1 mentor sessions with you. You can book at withhannah.co.uk I also have some videos on my YouTube Channel that are designed for Chronic Pain.