HEALTH: Fighting a Hard Battle…

The diagnosis is in.

Finally, after all these months and all these posts, I have an official diagnosis from a properly qualified medical professional.

I have Chronic Fatigue Syndrome.

Perhaps I should feel relief that I finally know what it is. Maybe I should be “staying positive” and looking to the future. But you know what? At the moment, I’m simply trying to come to terms with this new information – to process, digest, accept. And I promise you, it’s not always so easy.

Be kind for everyone is fighting their own battle. Plato.

I suppose I should start by explaining a little about CFS. It’s an illness that many (including myself, before this happened) dismiss without knowing the facts. Perhaps it should be known as it’s full name – myalgic encephalomyelitis – as the common name is misleading. This is not just about being a bit more tired than usual. That would be perfectly manageable. No, this is an evil, debilitating disorder that pretty much removes your right to live a normal life. It takes away your right to choose what, where, when.

Here are a list of the symptoms.

Of course, it involves tiredness – but at a level “normal people” probably won’t have experienced very often…every day. The smallest tasks become impossible. (No Adidas…it’s NOT nothing). Walking from one end of the flat to the other can leave me laying in a heap on the floor, unable to lift my arms, head, or wriggle my toes for hours. Standing up in the shower has become dangerous, as I’m not always sure my legs will hold me up that long…and raising your arms to wash or blow dry my hair is a memory. I have no choice but to do these things in the bath these days, and even then I often need help getting in or out. I am often too weak to lift a kettle, hold a fork, brush my teeth. For hours at a time I can be physically and mentally too exhausted to get myself to the bathroom, pull myself out of bed, feed myself. It’s like being old before my time. Humiliating.

And then there’s the pain. Along with constantly feeling like I’m battling a horrendous case of flu, there’s also the physical torment. My muscles and joints ache to the point I often think of cutting into them to make it go away. My hands in particular are agonising, so i’s not always possible to do the simplest of things; opening a bottle is difficult, pulling a ring-pull can’t be done. It’s like my hands are turning to stone one muscle at a time. I wake up in the morning frozen, incapable of moving my shoulders, my hips, my knees, my neck. Each tiny movement sends searing pain through my body until I can reach my medication…and then I wait…wait for it to kick in. Usually about an hour.

On top of this, there’s the brain fog, and the sensitivity. To everything. I get too hot, then too cold, within seconds. I can’t take loud noises or bright lights – there are times I’ve had to wear sunglasses indoors to stop me screaming out; it’s like torture. When this strikes I suffer from severe anxiety; When will it stop? Why me?

But all of this is OK. The pain. The exhaustion. I can deal with that. I’m strong…stronger than most in fact. I’ve been up against these demons before and brought myself back to life.

Chronic Fatigue SyndromeWhat I can’t deal with is the emotional side. The adjustment. The loss. In a way I guess I’m going through a period of grief; mourning the loss of me. I’m sorry if that sounds dramatic but it’s a fact…the old me just doesn’t exist anymore. She’s gone, and I have to bury the idea of her and say goodbye. I know that in a way that’s OK. I know that in time, I’ll learn to love this new version of me as much as I was starting to like the old one. But for now? I’m not all that happy.

It is incredibly frustrating to feel useless. I can’t walk up the five flights of stairs by myself, which means I am all but trapped in this flat day in, day out – and because I can’t work, I can’t afford to move somewhere more manageable. Most days, I can’t type for more than a few minutes at a time, which stops me writing, the one thing I truly love. My novel? Stopped. My sanity? Gone.

I no longer feel like I add value to anything. I am not contributing much to the world…and for someone who has spent their entire life being into everything, having these stringent limitations placed upon me makes me furious. And I can’t afford to spend the little energy I have feeling furious. So I end up feeling worthless, and disappointed, and sad.

Which doesn’t suit me at all.

Worst of all is the loneliness. I am a person that needs people. I feed off positive energy, find strength in crowds. I love being in the midst of the madness; being everywhere first; networking, laughing, being surrounded by friends. That’s no longer possible…and consequently, I seem to be a little confused by the definition of friends. I thought they were people who weren’t just there for the good bits. I thought they rallied round and called once in a while when you were unwell, or down on your luck. I must have been wrong, because the vast majority of my “friends” have not even picked up the phone, let alone visited…despite knowing how bad things are. But that’s OK. It makes me realise that the ones who ARE showing up, the beautiful, kind, wonderful people who do make the effort are all the friends I need. No point in being bitter. (Maybe just a little bit).

Unfortunately, there’s no cure for CFS, so what can I expect? Some people do go into remission but it’s not probable, so I guess I just have to ride it out. I can expect some days to be better than others, and some to be complete write-offs where I can’t leave bed at all. On the days where I can be active – I shouldn’t be too active, because my body doesn’t regenerate energy in the way it should…so once it’s gone it’s gone and I may not get it back again for up to a week. There’s a scale on which to measure CFS to see how “life-limiting” it is. I sit anywhere between a 40 on a good day, and a 20 when it’s bad. So…the future involves calming down, moving slow, and just learning to live life at a different pace; and learning to love life again.

It’s terrifying. I am officially disabled. I am not the person I want to be.

Falling apart

Writing it all down helps. It helps me find away through all the confusion and lack of concentration. It helps me to realise how lucky I am – because no matter how sick I get, I am surrounded by love. I have the most amazing partner who keeps me going when I think I can’t do it anymore…and a best friend who always shows up when I need her. I am not dead. And I am not dying.

I have no choice but to keep waking up in the morning and working out a plan for making it better. I am allowed to be sad, and I am allowed to mourn what came before. But I will not dwell. I will not let it beat me. I will not fall apart completely.

I have to let go of the past and stop wishing for things that can’t be changed.

I started writing this post overwhelmed with sadness, but finish full of hope. A new year is coming. I’m going in to 2013 knowing what the problem is, understanding how things are going to change and ready to fight this as hard as I can. I am starting to realise that asking for help doesn’t make me weak, and that I still have too much to give.

I just need to remember that.

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No Comments

  • Reply
    December 17, 2012 at 3:24 pm

    Glad you have an answer, it does help to know. I suffered from CFS ( at a time when it was nicknamed yuppy flu ) Anytime you want to talk, if I can be constructive you know where I am. It took a while but I did get through to the other side. G x

    • Reply
      JJ Miller
      December 17, 2012 at 3:31 pm

      Thanks G. We will have to meet up soon, I miss you! x

  • Reply
    Scott Jones
    December 17, 2012 at 3:29 pm

    Heh hun, let’s do that skype catch up asap. Hugs from Poland xxxxxxxx

    • Reply
      JJ Miller
      December 17, 2012 at 3:31 pm

      Hey hun. I hate Skype – but drop me an email anytime x

  • Reply
    December 17, 2012 at 4:04 pm

    Oh, that sucks… Really sorry to hear that – I know quite a few people with the same diagnosis and it is so variable, from the worst you can imagine (diagnosed aged 10) to now fully recovered (and an expert at managing energy and her own recovery, which is amazing but won’t happen for everyone). There is hope, there is love and there is not enough said about this. If you can, keep on writing. Hang on in there. x

    • Reply
      JJ Miller
      December 17, 2012 at 4:32 pm

      Thank you Charlie. It’s true…there are so many different levels – and unfortunately right now I’m not in the best place. However – I start at the pain management clinic in February and hopefully over time I’ll move up the scale and it will get a little easier. I have hope! x

  • Reply
    December 19, 2012 at 2:42 pm

    Sorry to hear that, but so glad you finally have an answer!

    Roll on 2013 🙂


  • Reply
    December 21, 2012 at 11:45 pm

    Reading this truly broke my heart! But I sense a lot of determination in this post.I hope that you can overcome all that is put in your path. No matter what, TLLWTL will continue to be in my daily list of blog reads! Sending good vibes your way 🙂 x

  • Reply
    JJ Miller
    December 21, 2012 at 11:54 pm

    Thank you so much. The kind words really do mean a lot x

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