Inside a Chaotic Mind

Fibromyalgia robbed me of my personality; it changed me into a person I barely recognised.  Once upon a time I was outgoing and bubbly, then I became a recluse.  It stopped me from doing the things that I wanted to do and consumed me completely.

 

The pain, oh my word the pain. "Pain" is an understatement if ever there was one!  There are no words to describe it, the unrelenting nature of it and the anguish it  can cause.  It moves, it changes. It’s random. 

 

I may “look well” (something I’m thankful for) and people are surprised to learn that I feel awful. Just because I have a good day, or a few good days, it doesn't mean that I’ve turned a corner and am ‘on the mend’ as people seem to think.  It doesn’t work like that, much as I wish it would.  My mind silently rages on.

 

I struggled for a long time with friends not understanding the changes.  I stopped going out as much, simply because I didn’t feel up to it. I felt like a shadow of my former self.  I used to feel as if people didn't like me any more and preferred the company of others.  The insecurity was insane.  I couldn’t blame them if they felt that way; sometimes I didn’t want to be with me either. 

 

I knew deep down that my perception was wrong, but that’s the way I used to feel. Fibro plays with your mind as much as your body. 

 

It was a constant battle as sometimes I felt really anti-social; I wanted to hide away from the world. Had I become boring? What did I have to contribute to conversations? I was mentally and physically exhausted and just trying to think was too challenging.  This syndrome chipped away at my confidence and tore it to shreds.   I used to be lively and energetic, but now I’m exhausted and drained.

 

Where I used to tolerate noise or bright lights, sometimes it’s all too much and I can’t cope.  The dizziness can be overwhelming too, it strikes out of nowhere and sometimes I can’t even move my head from side to side.

 

“Oh you’re ill again” was probably one of the worst things I used to hear, it would reignite the guilt and paranoia.  Back then I didn’t know what was wrong; I just knew things were wrong.  I knew I wasn’t a hypochondriac, but equally I couldn’t explain why I was ill, or why it happened so often. 

 

The pain could be overwhelming; it would rob me of my breath and have me doubled over.  It roamed around; not fixed in one part of my body.  One day it can be my legs, another it’s my hips and lower back, or my hands, or my arms, or my ribs, or my neck and shoulders, or my head…  But it’s not “just” my legs for example, it’s not one pain, it can be stabbing in one place, aching in another and burning too. All at the same time.  There are no limits and there are simply no words at all to explain what this is like.

 

My mood can swing from one extreme to the other, from positive to crying, from happy to low.  Sometimes I have to give in to uncontrollable crying; crying with despair that I can’t function as well as a healthy person, the sheer anguish of pretending that I feel fine all the time.  No-one can understand the diversity, the randomness and severity of the symptoms.  Pain hits in the blink of an eye, it can strike anytime and anywhere.  Dark, indescribable, pain.

 

I’ve even gone to bed fearing that I won’t wake up again.  I’m not melodramatic, I’ve never been a drama queen, it is simply the way the pain can make me feel.

 

I’ve feared that I’ve got something far more serious, something that will kill me, because no-one – not even doctors – are able to explain what’s going on.  Sometimes I’ve even wished they would find something more serious, something that can be treated, just so that I have the hope of feeling better.  But then I panic – what if it is more serious? What if I don’t see my children growing up? They need me so much, and I want to be there for them.

 

Fibrofog – that’s a good word, isn’t it?  It’s just like that, a fog that descends over my brain.  I can’t think straight, I can’t understand what people are telling me, and it simply hurts to even try to comprehend.  I forget appointments, I forget simple instructions, birthdays, events… the list goes on and there’s a haze in my head that stops me from remembering.  There’s a wall that I can’t breach, no matter how hard I try.  I’ve double-booked myself and upset friends, simply because my brain doesn’t always get into gear.  

 

I’ve found that I could struggle to hold a pair of scissors, or peel potatoes and vegetables, or just do regular day–to–day chores.  Those little things that other people take for granted.  Sometimes I would come in from work and all I could do was collapse on the sofa in a world of pain and exhaustion.  I’ve known myself to literally crawl through the front door and barely make it into the lounge.  Other days I can cope and feel okay.  It. Just. Doesn’t. Make. Sense.

 

Sometimes the pain is so immense that I can’t walk and I just hobble along, desperate to get home again.  I used to walk between 3 and 5 miles a day, but now I’m lucky if I can walk to my car.

 

There have been times when I’ve felt as though I’ve run a marathon, yet all I’ve done is get out of bed.

 

Of course, the physical pain is only one part of the overall picture. It doesn’t take into consideration the anxiety, panic attacks, erratic breathing, depression. There’s a long list and it’s all linked somehow.

 

I don’t have a ‘support network’ like they suggest.  My brother died as a child and he was my only sibling.  My mother died in December 2021 after a 17-year battle with Alzheimers and my dad had his work cut out for him looking after her as well as dealing with his own health difficulties.  I can’t bring myself to reveal the extent of it all.

 

I live in a world of frustration.  Frustration because I can’t do the things I want to do, no matter how much I want to do them.  It’s a prison.

 

I try very hard to remain upbeat, I hide behind a happy façade for as much of the day as I can but it grinds me down and overwhelms me completely.  Fibro is relentless and never-ending, and utterly soul destroying.  Warmth and understanding can bring me back from the brink, but thoughtless words and actions can tip me over the edge.

 

I cope with work, I hold down my job (just) but then my personal life, and my social life, has to suffer as a result.  I push myself wherever possible, but then other times I just have to accept the fact that I can’t.  I’ve lost track of the number of social events I’ve cancelled, and I worry about what people will think of me, but I know now when I can push myself and when I can’t.

 

I still push myself far more than I should do, but I don’t want to give up.  I have to remain positive.  Even my doctor has told me that I don’t know when to stop, but if I stop every time I’m in pain then I would never do anything ever again.

 

Where I once had willpower, now I have none.  I have often reached for chocolate or carbs because my body craves them and I can’t seem to stop myself.  My digestion is weak and my appetite random.  I alternate massively; sometimes I want to eat but other times I just can’t be bothered.  I try to eat healthily but there are times when it’s too much effort to cook.  I can look at food but just don’t want it.

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But I’ve found valuable coping mechanisms. I’ve found ways to help, and I suffer far less than I used to.  Yes I still have my low moments, but they’re fewer and further between.  

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I believe there is a solution for everyone, it just may not be the same thing. I have to hope and believe and keep on fighting. I will never stop questioning and trying.

 

In my lighter moments I see having Fibromyalgia as a gift.  It’s given me the opportunity to have far more wonderful experiences than I would have had without fibro.  I don’t take anything for granted and I savour the simplest things; even just going for a walk in the sunshine because there’s so many times I haven’t been able to do that.  I embrace life far much more because I have a much deeper appreciation of it.

 

I love the fact that I’ve learnt so much that I wouldn’t otherwise know.  I’ve developed so much as a person and it’s helped me to understand a lot more about myself.  It’s inspired me to try and help others.

 

Over the years I’ve met some amazing people and had fantastic experiences.  I have the most fabulous aromatherapist who has given me some of the best massages ever, and taught me a lot along the way.  She’s brimming with helpful knowledge and advice; she’s very well versed in all manner of topics, zany and more than a little bit eccentric and quirky.  She has taught me many valuable lessons which have helped me immensely.

 

I’ve visited a hypnotherapist and had the most unbelievably amazing meditation, it was simply beautiful and I will never forget the images and feelings I felt.

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I had Cognitive Behavioural Therapy with a very lovely woman who made me feel so good about myself.  She taught me so many techniques – and showed me that I had already developed a lot of techniques for myself – to help me overcome the challenges I was going through.  I learnt so many things about myself, her support was truly invaluable.

 

I’ve learnt heaps of things about myself and how my mind works.  I’ve started seeing things in a different light and have overcome numerous emotional factors that were affecting my life both consciously and subconsciously.  I have a far better understanding of myself and am a much calmer, relaxed person capable of dealing with whatever life throws at me.

 

For a long time I struggled with getting to grips with everything going on in my life, most notably trying to cope with on-going illnesses along with the emotional free fall my life went into after my brother died.  I’ve had many challenges and traumas during my life, but I’ve emerged stronger and more resilient as a result.

 

I live for the moment – rather than dwelling on the past or panicking about the future – I realise how short life is and how precious every moment is.  I’ve learnt that life is a series of chapters, and as one chapter closes another one opens.  Don’t mourn the closed chapter, embrace the good times and look forward to the good times ahead.  I’ve also learnt to take joy and happiness from the smallest of acts and I make sure I have fun and laugh a lot.

 

All my experiences and personal journey have given me the opportunity to write this book – something I would never have deemed possible a few years ago.  When I realised how vast a subject area it is, and how daunting it can be, it became a challenge to try and make sense of it all.  I’ve risen to the challenge and savoured it along the way.

 

Having a chronic illness has encouraged me to slow down, make more time for myself, meditate and appreciate simplicity. It’s given me the opportunity to learn more about spirituality and develop and explore my own beliefs which has had a real positive impact on my life.  I’ve met so many like-minded souls and – again – I’ve had some real special, life-affirming moments. I have many wonderful friends around me, who have a far better understanding of how my life works.

 

I’ve learnt my own limitations, and I know now that sometimes it’s okay to say no.  I always used to try and do as much as I possibly could, I pushed myself to my limits and beyond, but now I have a harmonious balance.  I embrace 'quality' over 'quantity', and am teaching family and friends the same concept.  I accept the fact that I’m not – nor will I ever be – Wonder Woman.  I don’t have to take on every little job, it really is okay to put myself first sometimes.

 

Looking on the bright side again, our body’s start to change and can go wrong as we get older, but I feel as though I’ve got a heads-up on this.  I’ve experienced many parts of my body going wrong and I’ve learnt how to make them better already.  I’m (hopefully) ahead of the game!

 

Stay positive, keep strong and believe in yourself.