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Fibromyalgia: It's More Than Just Pain!

So. This just happened.

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While I know that this was a question purely from curiosity, it made me realise how little most people (who don’t live with it) know about this illness. It’s not just about the pain. Fibromyalgia affects the sufferer deeply, on many levels – or at least it has for me. In all truth, until last year I’d never even heard of the condition, so I’m not angry about the lack of understanding. I just feel I should do something about it.

Now. I must start by saying that everyone with this condition suffers differently. There are no set rules to say one persons experience will be the same as anothers. Some people are still able to work, some have their pain under control, but most people I have met with fibro also have other illnesses too. In my case it’s Chronic Fatigue Syndrome, but there is an extensive list of problems that affect us alongside the pain.

I’ll start by explaining what I go through most days, to paint some kind of picture of this life.

I wake around 7am, and have to be fed painkillers by my partner as I am physically unable to move. My joints are completely seized and usually feel like they’ve been ripped from their sockets; my head aches so badly it feels like an axe has been driven through it; I am so exhausted that I do not even have the energy to roll over and the pain in my back and neck is so excruciating I sometimes feel like I don’t want to wake up at all.

There are days he can’t give me my medication, if he’s in a rush or I just won’t wake up. These are the days I dread most of all. When this happens, I can be paralysed with pain for hours – and occasionally all day. The pain is so bad I can’t even lift my arms to reach my medication. I never know whether this is the fibro or the CFS – perhaps it’s a combination of both. My muscles just stop working. They are heavy and dead. It’s distressing to say the least.

On the days I *do* get my meds in the morning – I usually drift back to sleep until 9 or 10am. When I wake again I gradually, over an hour or so, crack every joint back into place, slowly work each part of me until I can sit upright. Every small movement hurts. It takes another half hour or so after that to stand up, and usually at least another hour before my brain is able to function normally. I am forgetful, confused, frustrated  This is the part of the condition they call “brain fog”. It’s unpleasant.

By about 3pm, I am usually able to make myself from the bedroom or sofa to the kitchen to get some food. Perhaps I’ll load the dishwasher or put a load of washing on…which then wipes me out again for at least half hour. By 5, I’m usually as normal as I’m going to get…but even the slightest additional stress or exertion can knock me straight back to step 1.

Throughout the day, I get a whole host of other issues. From sensitivity to light and noise, to having a searing temperature one minute to being freezing cold the next, to losing feeling in my hands and feet, to literally falling over and hurting myself when my legs and hips give way. No day is the same – but it’s rare that I don’t get at least one of the above.

By 9pm, I’m confused, exhausted, stiff and broken again. I want to sleep, but sleep rarely comes. Most nights I finally drift off at about 4 or 5am…and the hours that preceed it are racked with agony. It doesn’t matter how many painkillers I take (I never exceed the max dose, don’t worry) it doesn’t take it away.

Sleep doesn’t refresh people with fibro, and our bodies don’t repair themselves while we rest, which is what sleep is meant to do. So when I wake again at 7…it starts all over again.

Brilliant.

Of course, I still have better days, and my goodness I love them. I try my best to make the most of them and relish every second…but at the moment? They seem to be MIA.

Compared to the party girl who used to work long hours, party every night, always be surrounded by people, constantly be on the run, feeling good, feeling full of life – it’s like 2 sides of the same coin. And that’s where it gets difficult.

I somehow need to come to terms with being so different. Right now? I’m struggling.

So…what have I lost?

  • I have lost my career. I have tried many time to return to work, but it is quite literally impossible to hold down a job when I am this poorly. I wish it were easier. I’ve tried working from home but again – when I am only “in one piece” for around 4 hours a day, it’s difficult. I do what I can, but for me, that’s not enough. I’m ambitious. I’m fiery. My mind wants to do more than my body allows, and that’s frustrating.
  • I’ve lost my income. No work, no money. I don’t claim benefits and I don’t have any savings left. For someone who has always worked for and had nice things, this is hard.
  • I’ve lost friends. When you’re pretty much house-bound, and have very little to talk about, you become less interesting. To start with, people visit, but after the first few months those visits dry up. I love company. I get a buzz from being around passionate people. Being alone all the time get lonely in more than one way. 
  • I’ve lost my looks. Vain as this may sound, unfortunately it’s true. My skin is grey, my hair is lank, my eyes have huge bags under them. I don’t have the energy to wash and dry my hair, I don’t have the energy to self tan, I don’t have the energy to get dressed in nice clothes or put my make up on anymore. Doing my nails is a rare treat. I don’t even have the strength to go out and get these things done. We live on the 5th floor with no lift – so I can’t leave the house without help. It’s not so great to look in the mirror and see someone you don’t recognise staring back.
  • I’ve lost my fire. I was always going to take over the world. I knew it. But when you try and try and your health gets in the way, you lose the fight. Much as you still want it deep down, it’s hard to motivate yourself to keep battling on when all you do is lose.
  • I’ve lost my positivity. It’s still there, sometimes, but a lot of the time, I feel drained. It’s hard to see the light when things have been dark for a while. It’s hard to see your way out of the situation and see the good again, when you feel like the stuffing has been knocked out of you.

Worst of all? Worse than all this?

  • I’ve lost my confidence. I used to love myself – in a non-arrogant way. I used to know I was good at things. I used to like my appearance. I used to know I was self-sufficient, funny, entertaining, kind. I used to think I would always be successful, always be OK.

This illness has stripped this away from me. I know, without a shadow of doubt, that the real me is still in there somewhere. That the sparky, funny, confident girl is still in there somewhere. I know that with some help I can get that side out again. But I’m exhausted. I’m broke. I’m stuck.

I know I’m just in a bad place today. Perhaps I need the break I’m going on this weekend more than ever. Perhaps I really do need a life coach, to help me address these issues and rebuild my self esteem – but how on earth can I afford one?

Catch 22…and back to being frustrated.

Now, I’m not writing any of this so people feel sorry for me. I’m not asking for pity or sympathy. I’m honestly just trying to illustrate how this is – what my life looks like now. I just wanted to put it out there. This isn’t like living with a sore arm, or a bit of a headache. This is constant, intense pain, coupled with exhaustion and the emotional struggles that come with that.

I know I have not lost everything forever. I will work, as hard as I’m able, to find myself again and bring myself back to life. I hope to eventually find that I’ve just mislaid stuff – not lost it forever.  I’d love to have a mentor, some support, someone who can reach in and pull all the good bits to the surface again.

Because I hate feeling like this. I hate feeling negative and sad. I just want to be vibrant and cheeky again.

UGH. I want to be ME again.

Any advice gratefully accepted!


(I apologise if this post is less positive than usual. I’m low, and I’m struggling. I’ll try to be back to my usual sparkly self by the time I write again!)

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6 Comments

  • Reply
    Jessica
    May 16, 2013 at 7:34 pm

    I think you’re amazing. What you’ve done with TLL while going through this is incredible.

    Only advice i’d give is to nourish the sparks of the old you that appear and laugh as much as you can.
    But really i know nothing.

    Just wanted to comment as a reader to say that you’d be inspirational for this blog, your writing and attitude etc even if you weren’t so ill.

    J

    Ps I barely ever comment on blogs as I’m far too antisocial 🙂 but this prompted me to step up.

    • Reply
      JJ Miller
      May 16, 2013 at 11:25 pm

      Thank you so much lovely. This means a lot. More than you’d know! x

  • Reply
    Kristina
    May 17, 2013 at 2:01 pm

    I don’t know you, but I just wanted to say that this is really eyeopening, I never knew much about this condition, so thanks for sharing. You seem like a really strong person and I am sure you will be able to find the tings in life that will keep you going. For one thing you have a really amazing website x

  • Reply
    frizzyj
    May 17, 2013 at 4:54 pm

    I think it’s very brave of you to be quite so honest about how hideous chronic pain gets. Luckily my chronic pain syndrome has not left me quite so immobile, but I’ve had my moments! I had breast cancer 5yrs ago – that plus the long recovery from tough reconstructive surgery (involving my back muscles) was a major factor in developing the syndrome. Apparently I share some of the symptoms of fibromyalgia, but I’m pigeon holed under ‘chronic pain syndrome’. It took a year just to get a diagnosis and a further two to reach a point now where I feel it is mostly managed well. Yes I have to swallow over 20 pills a day and yes I’m not quite the woman I once was. It sounds like your partner is very supportive and hopefully you’re GP and pain clinic are too. I’m sure you will too reach a point when you’re not just surviving, but having more ‘good’ days than bad – and I know you know what I mean by a ‘good’ day! This illness is really debilitating and it is soul crushing when there’s so much we want to achieve. It’s really hard to get out of the pattern of comparing your pre-fibromyalgia self to your current self, never mind the rollercoster of over-doing and over-resting. For me it was gentle physio and gabapentin and a bit of cognitive behavioural therapy that helped me begin to manage it and increase my activity and ability levels. It’s such slow progress, but it will get better. I didn’t believe it would until a year after my physio started! I still get flare-ups for no reason or for over-doing stuff or for slacking off my 20min stretch breaks I’m supposed to take, but I’ve reached some goals and I try not to think too far into the future or beat myself up about what I used to be able to do. Thank you for sharing because I still feel a bit shy about it myself. I was happy to shout about my cancer, but I don’t feel so confident about sharing this new reality, which still devastates me from time to time.

    And about wanting to be you again. You are always you! Things happen to us that change us, quite deeply sometimes. It’s only now I realise the last few years I felt defined by what was happening to me: motherhood, breast cancer, pain. So I’ve decided to start redefining myself. Deep down I’m still that girl who wears whatever the hell she likes, is ambitious & determined and I’ve come to realise that each of us will have ordeals and griefs to go through. We have to get on with it and cherish the small things that really matter. And if that’s feeling pleased because you made it out of bed and hung the washing up then: well done, I know how hard that was! So can you please remind me to take my own bloody advice! 🙂

  • Reply
    Danielle Vedmore
    May 18, 2013 at 1:25 am

    Aww honey I do feel for you. I suffer from CFS and I cant imagine how I would cope with Fibromyalgia as well. I hope the “good” days soon make an appearance – sending you a big hug xoxo

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