Losing Control…

 

Last week, I received the results of my latest batch of tests – the chest x-ray, bloods and radioactive bone scan.

The good news is, I don’t have rheumatoid arthritis, bone cancer or anything lifethreatening.

The bad news is, things don’t look like they’re going to get much better.

The tests excluded many possibilities and highlighted some fairly serious issues that unfortunately, can’t be treated. So, this is kind of it for me. The problems I’ve been experiencing for the last few months are here to stay. They can’t hand out ointments, or tablets, or prescribe medicine to make it better.

This is my new life. A life with a chronic pain disorder, that I need to come to terms with.

Funnily enough, that’s easier said than done. Despite everything, I really hoped that I’d come away from that appointment with a magic cure. I thought that miraculously, they’d have worked out it was something easy to deal with, prescribe me some pills and send me on my way. I’ve been in and out of hospitals for approximately 3250 days, have seen more than 15 different specialists, visited 9 hospitals and until that precise moment, I didn’t realise how much I’d pinned my hope on that unrealistic expectation. It only became clear as I walked out of the Doctor’s office, armed with nothing but a prescription for more painkillers, a referral to another specialist and his kind words.

I’m not sure I’ve ever felt so lonely. I made my way back through the hospital smaller than when I’d gone in. A shaking, frightened little girl, shielding her eyes from the clinical brightness and trying not to weep.

Then out of nowhere, the feeling disappeared. I went numb. I sent texts to my friends and my partner, explaining the news, yet felt nothing. I wrote the words like it was happening to a stranger – matter of fact, unemotional. I sat and waited for the taxi on my own, in pain, yet cloaked in a strange blanket of nothingness. I stared out the window, not thinking. Not understanding. Empty…

Later, I called my Father. I thought I was fine…but as the words tumbled out of my mouth for the first time, my tears met them. The realisation hit me like a hurricane as I heard myself saying it out loud. Admitting to my Dad that I’m broken was one of the hardest things I’ve ever done. I felt guilty. Like I had let him down. As I explained how bad things were, the emotions came flooding out and I crashed to the ground in a million pieces. The words hurt. “They can’t make me better”.

Devastation.

So, for the last few days I’ve sat here, mainly alone, trying to make sense of this. Trying to work out why it’s hit me so hard. Because I almost knew anyway, didn’t I? I’ve been writing about it here for months. It was what we’d suspected. But it seems that thinking and knowing are two very different things. While I still thought this might be the case,  there was also the chance, that tiny possibility I would get my health back. But now, with the test results in black and white and the Rheumatologist’s confirmation, it’s fact.

I can no longer use my hands properly – and due to bone degeneration that’s unlikely to change. It hurts to type. I struggle to hold a pen. I’m unable to grip bottle tops to undo them, or manage ring-pulls on cans. It hurts to bend my fingers and I cannot straighten them. When it’s really bad, I can’t even lift light objects – and last week I dropped the kettle while I was trying to make tea.

That’s just my hands.

When I wake, I often can’t move my body. It is like I have been turned to stone. My shoulders are frozen in place, my hips won’t rotate, my knees and elbows won’t bend or straighten. Most mornings, I can’t even roll over to get my pain pills which are at the side of the bed. During the day I have pins and needles all over, and my arms and legs feel dead – I can’t lift or move them for hours on end, or lift my head because my neck hurts so much. At it’s worst, walking from one end of the flat to the other exhausts me so much I can hardly breathe.

The balls of my feet burn and when I walk with shoes on – it feels like someone is driving a knife into my sole. My toes do the same as my fingers and seize up completely. I sit for hours like Uma Thurman in Kill Bill – willing them to wiggle. But they won’t. And it hurts.

My ankles, forearms, shoulders, back, knees, hips, ribs, chest, wrists, thumbs, eyes – they all hurt. Some parts are worse than others. Some days are worse than others. But it’s constant. In some form or another, it never leaves.

Don’t get me wrong – I still get flashes of the old me and I am almost OK for a couple of hours. I pay for it afterwards, but I make the most of it. I’m supposed to be pacing* and I know I’ll have to start that soon, but for now, if I can have 2 hours in the pub with my best friends, a glass of wine and some laughter, I’m taking them. It’s worth the pain to have a slice of normal again. But it’s like being teased. For a moment there, you believe life isn’t actually cruel. You’re lulled into a false sense of security – and no matter how many times it happens, you’re never quite prepared for the moment the pain rushes back back – each time crushing you a little worse than before. One moment you’re present and the next? A crumpled, twisted heap on the floor.

However. This is all physical…and genuinely, I can cope with that. I’ve been dealing with pain on some levels for nearly 9 years. It’s become the norm.

But the bit that I’m finding hardest to handle? The loss of dignity.

I am a proud, self sufficient person. I know the importance of appearances. Control is vital to me. I don’t want to appear weak, or show too much emotion. I am fiercely  independent. I don’t like to rely on anybody…and I hate to appear negative.

Needed – a healthy dose of self esteem

And right now? I’ve lost my grip on all that.

I wake in the morning and I have to rely on my man to sit me up in bed – or if he’s not there I struggle for up to an hour, in tears, because it’s so painful to unlock all my limbs. I can’t walk up the stairs to my own flat without assistance or a break every few steps. There are times I’m in so much pain I can’t even get up to reach my medication. Sometimes I can’t make myself lunch, open a packet or hold a knife and fork to eat, so I have to go hungry. It’s embarrassing to have to ask for help, to constantly be a burden. I don’t even have the freedom to leave the house whenever I want to, which means I can’t work or socialise – although many of the people I considered important haven’t even bothered to pick up the phone. At a time when I’m lonelier than I’ve ever been, that cuts to the core. But who can blame them? I am not the full of life, fun person I used to be.

I’m a shadow of myself.

I feel like I have been stripped of almost ell the strengths that made me vibrant – and I hate it. I’m beating myself up for allowing it to take control of me; I can’t understand why I can’t find the energy to fight back. The brain fog that comes with this condition and the pain medication is horrendous, and having no vitality or the ability to move is distressing. For someone who’s spent their life being larger than life, having to say no to myself is heartbreaking. On my darkest days I have to rely on my partner for everything – from picking up the groceries to helping me in or out the bath when I can’t manage it myself. Humiliating – and unfair.

I cry from frustration, then become furious with myself for being so weak. Positivity eludes me…& I don’t want to look at myself in the mirror as I hardly recognise the girl staring back. I know I should be able to see the silver lining, should count my blessings but it can be so hard. I try to remember I’m still in here somewhere…but some days my self-esteem is so low, I find it hard to believe I am still good enough to love.

That’s the problem with long term illness. It doesn’t just hurt physically. It hurts emotionally – and sometimes, that can be worse.

I am trying so hard to accept it, because I know once I do things will become easier. I need to stop fighting to be that person I was and learn to love the person I am now. It’s just a lot easier to tell myself that, than to actually do it.

I know I will get there. I’ve had bad times with this broken body of mine before and made it through. The good days will become a little bit more regular. It will settle down. I just need to focus on the fact I’m still here, still breathing, and I have some fantastic support from the people who are brilliant enough to still put up with me, in spite of it all.

As for the ones who haven’t even called?

Well. I guess it was time for a life audit anyway.

 

 

Strangely, writing this down has been painful, yet has helped me find the strength to pull myself together. Suddenly I feel determined to not let it destroy me. I write about this stuff because it’s cleansing for me…but I’ve also had some lovely messages from people in similar situations who have said it’s nice to feel less alone. That’s wonderful. And thank you to everyone who comments. Warms my heart.)

 

*All about Pacing. Sounds fun, right?

 

 

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  • I never realised how much long term damage the accident you were involved in has impacted on your life. When ever i see pictures of you, you are always smiling and enjoying life to the full. unfortunately behind those smiles you hide a vast amount of pain. It is great to know you have strong friends and a great partner to help you through these tough days. I love your enthusiasm and determination to keep smiling and writing these articles that must be painful mentally and physically for you.hope soon you become strong enough to get back to some sort of normal life just don’t give up.
    Enjoy your birthday x

  • JJ, I’m so sorry you’re having to go through this. Jesus, I know what it’s like to not want pity (I’m brilliant at hiding stuff for this very reason!) but it’s support ‘we’ can offer, in whatever form. I’ve only met you once, but have always been impressed by your work ethic, your continuous determination and desire to be successful – traits I see in myself. So please keep sharing and you will get stronger. Sending much love x

  • Hi JJ, I don’t think I’ve contacted you directly, before, but you might well have seen my occasional comments to James. I know some of what you are going through, though no where near as severe, as Fibromyalgia is something that was considered a possibility when I was undergoing diagnosis during my time in the Army. I do understand the strain of how long it’s taken to get your diagnosis, from everything I’ve read it’s only really got one test that shows a potential positive and to be able to confirm that, well, they have to rule out everything else entirely. My situation didn’t quite go so well, in the end I was basically told: “We don’t know what you’ve got; we’ve probably only identified 10% of possible muscle disorders and we keep discovering more each year.” The end result is pretty much the same though, no cure, just “management”; all you can do is take your time and slowly figure out which things make it better, which things make it worse. For me, the things to avoid are exercise or stress positions (yeah, that really did wonders for a military career!), resulting in extreme pain and muscle failure; my natural inclination to be a fat bugger soon saw fit to take advantage of that (though always a question of whether that may have actually been caused, unconsciously, by my problems), though that does mean I can expect other problems because of that; I’ve discovered that glucose tablets and ibuprofen help, if I know I’m going to exert myself, both during and after exertion. I’ve got no idea whether that would work for you, but just try to keep an eye out for days when things are better and keep a mental track of things you might have done differently leading up to it; with luck you’ll find something which helps, or at worst something you might need to avoid (then hope like hell it’s not something you enjoy). The one last piece of advice, never let it get you down; I know, a lot easier said than done, but it helps if you can tell it to bugger off and let it know you’re going to live your life the best you can.

  • Thank you all so much for tips and kind words. They really do help…its nice to feel that there’s support out there. I’ll be OK…I’m starting to feel better about things and see it for what it is – unfortunate, but not the end of the world. I’m sorry for anyone going through similar problems. It is unfair…but perhaps we only get this stuff thrown at us because the universe believes we can handle it. Who knows x

  • Hey JJ – you’re a fighter and an inspiration to many. Be strong, and make the most of the great life experiences and opportunities you have – so that the rougher times, just feel like physical training & preparation for the good times. x

  • Hi JJ I we’ve never met but I saw this link as my man directed your man in a play once upon a time so we’re on facebook. I wanted to take a moment to say hello and well done for being brave enough to express your pain. It takes courage and that amazing courage will help with this frustrating overwhelming scary time. I’ve had similar dark times healthwise and believe me I know how hard it can be on every level possible. However there are some truly positive things in my life now that would not be there had it not been for past tough days. I’m here if you ever want to talk things through online or in person. Thinking of you and sending you positive thoughts and vibes through the virtual ether xx

  • JJ – words just seem futile BUT I will say a few in response to your post. You are bloody amazing! – brave, and a tower of strength to share your suffering publicly. To do this, and share what you’ve experienced so eloquently demonstrates a fighting spirit (that you may not fully realize) will be of great help and inspiration to others, and spurring them on in their own battles. I can only send you and those close to you my very best.

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