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"Health is not valued until sickness comes…" (Thomas Fuller)

 

This morning, I sat on my stairs and cried.

I’d just returned from the first hospital visit of the day. I was exhausted, in bone-crushing pain, and thought I couldn’t take another moment. The realisation I would have to climb the five flights of steps up to my front door was too much. Through sobs, I made the decision that I couldn’t fight this anymore.

After all. How can you keep fighting something, when you don’t know what it is?

And then my boyfriend came and wrapped his arms round me and reminded me that I could do it. That there were reasons to keep trying. That no-one can do it except me…and that somewhere, deep down, I still had the strength.

Even if I don’t always know where to find it.

For over 3000 days I have been looking for answers. I have been through every peak and trough that one person possibly could, and am still not in possession of the truth. I have diagnoses thrown at me then ripped away, and put on courses of medication and then told they’re dangerous. I can’t sleep, then I can’t wake up; I can’t bend, then I can’t straighten. I do everything I can to be positive, then I have all the hope drained away and the fear creeps in again. It’s like living in a spin cycle. You never, ever get to rest. Just when I think it’s slowing down…it speeds up again, tossing me around and spinning me out of control of anything in my own life.

I cannot explain how it feels to be in almost constant pain. To have every muscle, bone, tendon and ligament ache, all the time. I have dead arms and legs up to 24 hours a day. Pins and needles surge through my hands and feet. My joints creak, crack and seize. My head feels like it’s going to explode. I can’t raise my hands above my head without feeling like I’m going to collapse with exhaustion. I wake in the night and can’t roll over, can’t move my elbows, knees or hips. Most mornings at the moment, I can’t even sit up unassisted. I need help to reach my pain medication. I am locked in a prison that’s my own body, and it’s torture.

Sometimes, I want to break…just so it will be over.

I long to be carefree again. I’d give anything to be able to just run over to the shops, go out without planning for hours in advance. I want to be able to have fun. I want to have one day – just one – in a week where I am not so exhausted and scared that I sit here, alone, sobbing to myself over the pain, the loss, the exhaustion.

Most people write plans in their diary and just know, save for an emergency, that they’ll be there. I write plans in my diary and stare at them for 3 days before, panicked about being able to go, about being fit enough to get dressed. I worry about having the energy to get down the stairs, I get scared about putting on the brave face and not telling anyone how much it hurts. I am constantly consumed with guilt about letting people down, ruining people’s fun. I am a shadow of the person I once was.

Most people get fantastic opportunities and grab them with both hands. I have to think every detail through, and end up turning most of them down. I try so hard to be “normal”, but often have no strength to get through a day.

Every now and then, I’ll start to feel a little bit better. I’ll gather the energy to see friends. I’ll make the most of it. And then for 3, 4, 5 days later, I’m made to pay. I get stuck here in my shell again, unable to move, unable to break free of this horrible pressure that surrounds me. My bones seize up, my body turns to stone, I can’t lift my head from the pillow or get comfortable, no matter how hard I try. My beautiful partner bears the brunt of my frustration, listens to me cry, get angry, curse whatever it is that is stripping me of my own right to choose, where I go, when, with whom. I just want to be able to make decisions for myself again – not based on whatever this demon inside me allows.

I know everyone means well, but it’s so tiring hearing people say how well I look, when I do get out. I don’t have broken bones, or scars, so there are no clues…except maybe the bags under my eyes, or the slight slump in my posture. I don’t leave the house when I’m at my worse, and am too proud to stand in a corner crying, no matter how bad it gets. So yeah, I look OK. A lot of work goes into that. Thank you for noticing.

And I know everyone means the best when they say “get well soon”, or “hope you’re better now”. But sometimes I want to scream. I feel guilty. I feel like I should be better, that its somehow my fault I’m not. I feel that people think I’m weak, pathetic, for always being ill. For always making excuses, cancelling meetings. I don’t mean to. I want to be like  everyone else. I’d do anything to be able to work full time again. To be like you.

It’s hard when people ask – “what’s wrong?”. After 9 years, I should be able to reel off the facts. But the truth is, we still don’t know. I’m having tests. I’m waiting. I wish I could tell you. I wish I could wear a badge that explains it all. But I’m not qualified to say. The Rheumatologist thinks it certain things, like Fibromyalgia or Chronic Fatigue…but I’ve heard all this before. I’ve pinned my hopes or fears on what they tell me – started off on a course of treatment, and then been told they were wrong – so many times. So…until it’s confirmed, in writing, with no ifs or maybes…it remains unknown. I can tell you what the Doctors think it might be…but it’s me who looks stupid when they change their minds. It’s frustrating – no – it’s soul destroying.

I just want answers.

So. Where are we?

Well, I guess I’m still fighting. I’m at the top of the stairs. But medically? We’re nowhere new. I have seen the Rheumatologist. I have had the blood test, the x-rays.

This morning, I had a radioactive injection into my veins – and my clawed hands scanned. I have to go back this afternoon to have a whole body scan, once this radioactive stuff has worked its way through my bones. Right now, I just want to sleep forever. I want to give up.

But I won’t. I never do. I’ll keep going. I’ll drag myself back to the hospital later. I’ll do whatever they need me to do.

One day, we may even get answers.

Til then? I guess I’ll keep waiting. And fighting. And trying not to cry anymore.

(This article was written on 19th October, 2012. It’s now 22nd, and the weekend wasn’t too bad. I needed to vent, and for now, it’s a little better. )

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No Comments

  • Reply
    Hollie-Anne Brooks
    October 22, 2012 at 8:15 pm

    This made me cry. You are such a brave and inspiring woman. MUCH love to you xxx

  • Reply
    PJK
    October 22, 2012 at 8:36 pm

    Followed you health updates for a while now, I think you are amazing the way you have coped with this,when many would of given up. I have a lot of respect for you and I do hope there is light at the end of the tunnel so you can just get on and enjoy a normal pain free life.

  • Reply
    Mayah Riaz
    October 22, 2012 at 9:13 pm

    Wow, what can I say after reading that? I read that with fighting back tears. I can’t imagine what you must be dealing with each day. I hurt my leg on holiday by falling and pulling a ligament. It has put me on crutches for 4 weeks so far. Lately I have been feeling really down with it. But reading your post made me feel like it is all trivial. To put up with what you have for 9 years and still have hope and the fight in you to continue is amazing. This does the strength of the woman you are.

    You looked amazing at LLA and you truly deserve to be pampered like that every day.

    I don’t know if this is much use to you but 14 months ago I was on the verge of Chronic Fatigue. I was falling ill with flu like symptoms that would make me bedridden every month. Since acupuncture I haven’t been ill for 10 months. I didn’t believe in acupuncture and used it as a last resort when doctors just kept telling me it was a series of bad luck.

  • Reply
    Mayah Riaz
    October 22, 2012 at 9:17 pm

    Last message posted before I was finished…

    I don’t know if you have given acupuncture any thought. I am not an expert in it but it may relieve some of the pain? Happy to help if you want to know anymore or speak to my Acupunturist at all during my appointment. He may tell you it may not be for you but it could also be something that could help.

    Thinking of you and hoping you are sooner to finding out what it is. Sounds like to you have a gem of a boyfriend.

    Keep fighting as I know you will but hoping you find some peace soon.

    All my love
    Mayah xxx

  • Reply
    Judy Johnson
    October 22, 2012 at 9:53 pm

    Oh JJ, I so wish I could do something to magic you better 🙁 You are a wonderful lady and no one in their right mind will ever think you are weak or just making excuses – we don’t have a clue what it’s like to live with this kind of thing day in day out but what we can see is that you cope damn well with it and never let it stop you from being the great person that you are. xxxxx

  • Reply
    Jennifer-Rosellen
    October 22, 2012 at 10:01 pm

    xxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Reply
    Angela Higgins
    October 22, 2012 at 10:49 pm

    I don’t think i’ve commented here before JJ. But i thought this post was very worthy of a comment. I’ve followed your tweets and read some posts for a little while now and I want to say you are someone who i enjoy reading. You are one brave lady. I don’t mean that to sound patronising either. I can’t even imagine what pain you go through daily, or minute by minute, yet you still seem to carry on with some joy in what must be (as you say) some kind of prison.
    I wish that we could all take some of your pain away for you. I know that might not help. And please, don’t ever apologise or feel guilty for wanting to scream at us. Heck I see some folk in my twitter timeline who go on about being ‘exhausted’ after 7 hours sleep. If only they knew…
    Anyway, i won’t hog any more time. Keep fighting, keep tweeting, keep smiling like your lovely avatar and hopefully one day soon you’ll get that carefree feeling back.

    Oh jeez, i read that back, it’s a cheese fest! 🙂
    Big giant gentle cyber-hug for you.
    x

  • Reply
    Emma
    October 24, 2012 at 12:41 am

    I couldn’t read this without posting a comment. I’ve been following you on Twitter for quite a while now and I think you’re an incredible and inspirational woman. I pray that one day you’ll find the answers you are looking for and there will be an end to your constant suffering. I really admire your bravery. Keep smiling and fighting. You’re an inspiration to us all. xxx

  • Reply
    JJ Miller
    October 27, 2012 at 12:39 pm

    To everyone who has commented – thank you. It means a lot – more than you could realise, in fact. This week has been particularly tough and your kind words touch my heart. Welling up again just reading your lovely words. Thank you all…you’re all wonderful x

  • Reply
    JJ Miller
    January 11, 2013 at 4:34 am

    We have the answers. CFS and Fibromyalgia.

    It isn’t going to go away…but I will do everything I can to make me better.

    Thanks so much for all your support x

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