Fibromyalgia & Isolation…Don’t Fight It!

‘Fighting’ that’s the reason why so many people with fibromyalgia isolate themselves in the first place. You’re just too damn tired to ‘fight’ yet another daily battle or explain how you feel to another person.  The last thing you feel like doing is ‘fighting’ the one thing that feels like self-preservation, ‘isolation’.

Self-preservation can come in many forms, isolation is one of them. It builds over time and only serves to fuel the vicious circle of depression and flares. The problem is, sometimes it feels like the only form of self-preservation available with fibromyalgia, despite the negative consequences.

My Experience

What the hell is the point in trying so hard? 

I make plans…Just to break them. I work hard…I get knocked back with flares. I try to think clearly…I’m lost in fog. I speak and forget what I’m saying, or stammer then joke it away (on the outside only, inside I’m scared and squirming). And if one more person tells me how well I look…I’m going to scream!

The worst of all, feeling isolated in a group of people, I felt different, nothing clicked anymore.  No one understood or even realised what was happening to me…well how could they, I was the one saying, ‘I’m ok’ instead of saying…

‘I’m exhausted, I’m in pain, I can’t think straight, I feel like I’ve been run over by a truck and scraped off the floor…moreover, it’s chronic, no treatment…no cure!’

Deep bitterness, resentment and anger insidiously worked their way through me as I just couldn’t get anything together anymore.  I didn’t smile, couldn’t see anything positive, everything irritated me.  My life was unrecognisable and I didn’t want to recognise it! I was totally lost.

Why bother if I’m just going to feel like this?

Time to Retreat!

The natural choice was to become a builder! I built and invisible wall around me to hide this invisible illness. But it didn’t happen immediately, it was brick by brick over time. Each broken plan, set back and disappointment represented a new brick. 

Withdrawing from the world is a fight or flight mechanism. I was trying to remove myself from the fight!

Here I was at rock bottom. Isolation became a habit that brought with it no disappointments.  I became numb, a little ironic isn’t it…someone with chronic pain was numb.

What caused the shift? I’m not sure. Perhaps it was watching my kids and knowing how miserable I had been around them. It was time to break down the prison wall.

You can’t unpick a habit if you don’t know what caused it…

Time to take a look deep inside!

I was afraid of who I had become, what my life had become…I certainly didn’t accept it. I was beating myself up for everything I was experiencing and let’s face it fibro does enough beating without us giving it a hand.

Choices to be made…the most important one was to accept my ‘new’ self and the direction my life was taking after all, there’s no pill to take to make this illness go away.  Now this doesn’t mean I am my illness, it means it’s time to adapt and manage my life.

Maya Angelou couldn’t have said it better, ‘If you don’t like something, change it. If you can’t change it, change your attitude.’

Time for a New Perspective!

Find the positives…

Ok, so my career was now in the toilet…it wasn’t the end of the world it just meant looking for something that suited me now, not something that was going to drain the life out of me.

The people I thought were close friends that had vanished, I didn’t worry about anymore. There are billions of people on this planet and it was time to meet some real friends that would stick around during the challenging times, just as I would for them.

Smiling and laughing had almost become a foreign concept to me. I was sad and nervous almost all the time.  I watched funny films, clips and remembered the numerous funny memories I had…and actually allowed myself to laugh.

I started to look for the positives in my life, even journaling them so that I could see them in black and white in front of me.

I stopped feeling guilty about accepting help and accepted it in the spirit it was offered.

Going out of the front door…yes it took time and sometimes it was the last thing I wanted to do, but I reminded myself how good I would feel once I had.  Now I make sure I go out every day even if it’s for a short period of time.

I didn’t expect too much of myself, just took life step by step. Instead of feeling disappointed at the things I could no longer do, or were very challenging, I looked at it all as feedback (failure was eliminated from my vocabulary).  

I become my own thought catcher…I noticed I was allowing myself to be swept up in a whirlwind of negative thoughts.  As soon as a negative thought started brewing, I stopped it in its tracks, sounds crazy… I even gave myself a good talking to on occasions.

I stopped feeling awkward about my home being untidy if anyone visited (this was a tough one).  I should have a notice on my front door ‘Beware of the Boys!’ You can imagine, socks thrown off…you never know where you will find them. School bags laying wherever they were thrown. Let’s not go on it’s not pretty.  I remember a great friend of mine saying, ‘don’t sweat the small stuff.’ A real friend will come to see YOU not your home! And if all else fails look at the ceiling, it’s always tidy 😊.

Social Media…aghghg, I had a block when it came to social media, (it’s where I had done most of my work before I isolated myself), but this time I looked for positive people, real people that understood what I was living through and I was pleasantly surprised…I’ve met some awesome people.

Alone time now…I love it! I will always love my own space and time…hey life can get mad! The key difference is I am not isolating myself, I am just having a little time to read, watch a film or just relax and I cherish it.

The conclusion I reached is, ‘I don’t have to be superwoman,’ thankfully my underware can stay firmly under my trousers!

Life changes when you are diagnosed with a chronic illness. It doesn’t mean it has to stop, it just means learning to accept it and take part in the journey. Don’t beat yourself up. Don’t fight what is happening to you, fighting will build up more resistance and drain energy and you need all the energy you can get! Give yourself a Break, you forget how Awesome you are in the mix of symptoms and life.

Have you isolated yourself?  Do you have any tips to share that will help others?  We would love to hear them and share them here.  If you are experiencing isolation please do get in touch, you don’t have to be alone x

Have a wonderful day

Lynne.

2 Replies to “Fibromyalgia & Isolation…Don’t Fight It!”

  1. Brilliant post. Fascinating to read your fibro journey which resonates so much with mine. We have been through so much and changed so much. I still need my alone time but don’t isolate myself so much. Best wishes.

    1. Thanks so much for taking the time to read my post x Yes fibro is definitely life changing on so many levels. It’s sad to know that so many people live with this invisible condition. I think alone time is so important, we give so much time to everything and everyone…it’s so key to our health to give ourselves time too xx Very best wishes to you too x

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