Blog

I Thought I Was Fine.

Imagine smiling after a slap in the face. Then think of doing it twenty-four hours a day.― Markus Zusak, The Book Thief

It’s been a while since I’ve written anything here. In fact, it’s been a while since I’ve been able to write anything at all. A kind of writer’s block, but one that went deeper than that, because it didn’t just apply to writing. It applied to life.

This morning though, I feel like a cloud has lifted. I’m sitting here, suddenly feeling alive again. Suddenly feeling like I have to share this now, before I step out into the sunshine today.

Anyone who reads this site regularly knows of my health problems for the last year or so. You know of my struggles for diagnosis, of my difficulty coming to terms with the fact that the two conditions I have, Fibromyalgia and Chronic Fatigue Syndrome, have no cure. You’ll know I’ve had ups and downs and you’ll know that I have tried, so very hard, to stay positive. I thought for a while I was doing OK.

It seems, though, that all of this horrible illness has affected me in more ways than I could ever have realised. I thought I was managing, dealing with it, staying just above water, but looking back, I have been drowning this whole time.

Depression

Two years ago, I was vibrant. The life and soul of the party. The person who would bring positivity and sunshine, laughter and light into a room. The kind of girl who would not look at a problem without seeing a solution, who knew how to make things happen, who knew that life was a challenge, and that challenges were meant to be won. I was in a fantastic place. I was enjoying life – I was about to fall in love, I was happy.

And then, this. From nowhere, the tiredness started to set in. Followed by the pain.

For a while, I stayed in a good frame of mind, letting it wash over me, thinking that some day, one day soon, it would all go away and I’d get ME back. That sparkle that it was impossible to find while I was so incredibly wiped out. I still laughed, I still tried, I still made an effort.

But gradually, over time, when the news the Doctors give you just gets worse, and the health system lets you down, and you’re trapped within your own body and you can’t see your friends, or do anything fun, or work, or even do the most basic tasks without help – you start to lose hope. The medications take over and you become a zombie, sleeping, hurting, waiting for it all to be over.

The shine dulls. The positivity fades. You spend your life angry – angry at everything, and everyone, because no-one can help you. You resent anyone with a normal life because you so desperately want yours back. And suddenly, you find yourself in a pit of depression, wanting so hard for someone to dive in and save you, but not knowing how to ask.

Without knowing it, that is where I have found myself, probably for the first half of this year. Depressed without realising it. Desperate, without understanding how sad and lonely I was. Angry, Unhappy, Miserable, Desolate. A shadow of the person I used to be. An empty shell.

I stopped trying. Stopped fighting the health system, because there didn’t seem like any point. Stopped asking friends to take the time to come and see me, because why should I try if they don’t want to? Stopped making an effort with the few people who did still have time for me, because I couldn’t see past my own woes. And eventually, when you take people for granted for long enough, they go.

I knew that depression was extremely common with chronic illness, but I thought I was stronger than that. I thought I could beat it off, if I just ignored it for long enough. If I kept telling myself “I’m fine”.

But I wasn’t fine.

Depression starts off slow, I guess. You want to get up and go out, or do some work, feel productive, achieve something, but you can’t because you have no energy and you’re in the middle of a flare and so you don’t. You just allow yourself this one day off and then it will be better, right? But then you feel awful because you haven’t done anything and what’s the point of being here if you can’t even do something so simple.

Then you can’t sleep because you feel guilty and all those thoughts are whirring around your head and you’re exhausted again, so you decide not to get out of bed again today. Then there are things you have to do, but you “can’t”, because of the pain and the heavy, aching limbs, so you cancel them and just allow yourself another day off. You ignore text messages from your friends because you can’t think of anything good to send back and when your partner gets in from work, you sit quietly. You don’t have anything to talk about, after all. You’ve done nothing. Your life is full of pain. They won’t want to listen to you, because you’re worthless.

Then, you get hit by some more bad news, or let down by more Doctors, and that one day in bed turns to 3 or 4. You no longer want to get up, because there’s no point, is there? You can’t do anything. You can’t go anywhere. It hurts to stand up in the shower, and the kitchen seems so far away it will just be to much to try to get there. So you wait. Wait for someone to come home to cheer you up.

Then they do get home, and they’re happy, and you’re angry because how dare they be happy? Can’t they see how hard this is? Can’t they do something to help? You want, so desperately, for them to call the Doctor’s, or whoever has upset you that day to deal with it for you, because every time you try you cry, but you can’t ask because then you’d just seem weak. And you’ve already lost so much, you don’t want to lose your pride too.

And then all these days merge into each other. And you can’t remember what it was like to feel happy. And your friends stop texting because you never answer but you need them and where are they? You feel so alone, and you’re tired and you’re in pain but you can’t sleep and you want to ask someone to help but you can’t find the words and you feel so terribly, desperately alone. And people are in the room talking to you and all you can hear are muffled words, and your brain can’t make sense of anything and you get angry because clearly, people are trying to confuse you. And they must know by now that you need help, so why aren’t they helping? They must be hurting you on purpose, now. They must hate you. So you stop being nice to them, because what’s the point if they hate you anyway.

And then, at some point, someone does try to help, which is what you wanted, but by now they’re frustrated because the you they know has disappeared so they snap a little instead of just sitting down and wrapping their arms around you which is what you’ve needed all along, so then you feel like a burden and won’t accept their help and just get angrier and shout and all you want, all you wanted this whole time, is for someone to scoop you up and rescue you but by now, your confidence has gone and you can’t ask for anything and you feel worthless and you don’t see the point in any of it and to be honest, you’d be better off not waking up tomorrow at all.

In the end, you are nothing but a ball of hate and sadness and blame who just needs to be loved but has made themselves unloveable.

And the depression has won.


I don’t know how I got from point A to point B. I don’t know how I didn’t see it happening, or recognise how low I had become. I don’t know how I fell apart so spectacularly, but I managed it. And in doing so, managed to lose everything I loved, needed and kept me safe.

But you know what? I believe I needed to. I don’t think that any words would have resonated with me, or any amount of hands reaching for me would have stopped me drowning. I needed to hit rock bottom to bounce up again – and I hit hard.

Life now has changed. I’ve finally moved out of the top floor flat with no lift that I resented so much and in which I felt like a prisoner for so long. I can no longer be angry at anyone for not helping me, because the only person who can help me is myself. I can’t rely on anyone else to get me through the days, because I’m responsible for myself. I have no choice but to try now.

And I’m getting better.

It’s still hard, believe me. But changing my home, changing my GP…just trying again…is making all the difference. Little things, like being able to walk to the shops (without having to negotiate 100+ stairs each time), being able to go for a drive, getting out to see friends…they’re all helping. And no, while I’m still not well enough to work, or be that girl who goes out every night, I am finding things funny again. I’m laughing. I’m loving my friends, and I’m starting to see things in myself that I like again.

I suppose I’m writing this post for two reasons. One, I don’t want anyone else to sink as low as I did. If you’re starting to feel like there’s no way out, please ask for help – no matter how hard it seems. Write a letter, send an email – just don’t suffer alone. There are people who will help you, even if you feel like the loneliest person on earth. And they’ll be happier to do that than to watch you fade away, I promise.

Secondly – if you see someone struggling – if you’re watching someone you love’s personality change – try not to get angry. Remember they’re not doing this on purpose. I know it will be a drain on you – I get that it’s hard, but remember that person is still in there somewhere and wants to get out. They need help, they need kindness, they need you to take some of the weight but they probably can’t ask. Chances are they’ll get there on their own eventually, but it’s so much easier with someone there reminding you of the good.

No-one wants to suffer from depression. No-one enjoys it. There’s a big difference between being in a bad mood and feeling like you literally have nowhere to turn. And for me at least, it was almost impossible to see the state I was in. I honestly thought I was coping.

It’s Hard to Read the Label When You’re Inside the Bottle.

For now, I have to take each day as it comes, remember that I don’t have to handle everything alone, talk to people who love me and want to help and piece my old life back together one tiny fragment at a time.

Chronic illness changes your life completely, and sometimes you need to give yourself time to grieve for the old one.

Once that’s done, it’s time to focus on learning just how fabulous the new life can be. Different, but still fabulous.

I’m not quite there yet – but I’m trying. And that’s a step in the right direction for me.

Stay strong x

You Might Also Like

16 Comments

  • Reply
    Morette Thompson
    July 1, 2013 at 5:04 am

    Thank you for this. Your story echo’s my story. I have now lost my job and i am now faced with yet another battle with the Department of work and pensions who do not recognise Fibromyalgia for the condition it is. There is an e-petition have you seen this? could you sign it nd share it? http://epetitions.direct.gov.uk/petitions/48164

    • Reply
      JJ Miller
      July 1, 2013 at 1:34 pm

      Of course. DWP do recognise fibro and CFS, but both cases are judged on individual merits. All I can advise is make sure you see your GP with any problems, get to see as many specialists you can and if it’s affecting your ability to work, ask them to confirm that for you. Most cases unfortunately have to go to appeal but you should win x

  • Reply
    paul
    July 1, 2013 at 3:23 pm

    Just made me cry. Stay lpositive kid x

  • Reply
    Mark Batchelor
    July 1, 2013 at 3:57 pm

    Hey JJ,
    Insightful, heartfelt and moving account. Helped me understand what people fighting depression are thinking and need. Most of us want to do the right thing, especially for those we care about, but just don’t know how to – often we’re walking on eggshells and worried about getting it wrong in tandem with sorting out our own lives.
    Thanks for sharing, and pleased to hear you’re fighting and making those important steps to making things better 🙂

  • Reply
    nikki
    July 4, 2013 at 1:50 pm

    absolutely amazing post. I found this via your twitter page. I followed you because I have suffered for 2 years with cfs. coming fresh out of university then I suddenly cant walk or function properly with doctors telling me its mental affects of moving back home etc.
    one year it took me for my doctors to listen, doctor after doctor. im now officially 2 years into it. im a little more on the positive side. but with reading your story its like a mirror image of my own. literally word for word in some parts.
    youre not alone.
    neither am I.
    its hard to realise that when your having such a low time of it.
    I rejected everybody.
    my friends at times didnt seem to care. I used to always think ‘what if it was them in this situation’ I’d forve myself over for a brew. a smile. anything.

    ive been so low in all this hence why i searched cfs in twitter just to see if I was the only one suffering at that moment in time. you were the top tweet. it was encouraging to know I really wasnt alone.

    you gave me slight hope.

    without knowing it.

    I struggle with my mental side not catching up with physical and vice versa. its like a juggling act at best.

    ive managed to get out more over the last year or so. but im still horribly reminded by vision impairments and dizzyness now and again on top of everything else. just so my body reminds me that I cant have that much fun.

    its devastating. im 24 have a degree in graphic design and im just wilting away it seems with no existence.

    whats the point if you cant exist?
    and then for people to act like you have some form of contagious disease and run away. doctors think your some hypercondriact and wont listen. so its like you say. were trapped.

    im so glad I found your blog/twitter.

    it gives me hope.

    regards

    nikki

    • Reply
      JJ Miller
      July 19, 2013 at 10:16 am

      Nikki, sorry it’s taken so long to respond but I’m glad the post helps in some way.

      I hope that you find some kind of help soon. Try talking to your GP about referring you to a Chronic Fatigue Specialist? they’re quite hard to find but there are a few. I’m on the waiting list and it least it feels like a light at the end of the tunnel. Always feel free to tweet me if you just need to talk – I really do get how lonely this all is x

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: