The Aftermath of my Appointment.

The Aftermath of my Appointment.

So, I’m here again. Trying to kick off my writing..

I have spent the last year fighting tooth and nail to get help with my neck problem. I raised money. I got it diagnosed. I saw specialist after specialist and finally I got in with one of the best neurosurgical teams in Britain at, apparently, the best hospital.

They dragged me down there for appointments, pressured me into dropping my other doctor, then discharged me with no help whatsoever.

When I say no help, I mean it. “Sorry we can’t do surgery on you” (yet admitted they would for anyone with my issues without EDS) “You’re discharged.” That’s all I got. No advice on how long to wear my collar, what collar is best, where to turn for any form of palliative care, if I’m going to degenerate further… The list goes on. I never even got to see the doctor I was referred to. Yes I did ask. I also asked all my questions. I was met with shrugs and I don’t knows.

Then the worst happened, I fell apart. I fell into a million pieces in front of both of my kids. (My specialist was in London and we had no choice but to take them due to circumstances at the time.) I saw my life stretching before me and it terrified me. It still does. I’m desperately trying to piece myself back together whilst reassuring my kids I was just overwhelmed at the doctors. I am not lying, I was overwhelmed, but the thing is I still am.

That evening, so my children didn’t have a night of listening to me sob in a hotel room, we dragged my broken body and soul to Winter Wonderland. I couldn’t walk round, so we went to the circus. My children thrilled at the spectacle in front of them and seeing them happy made me and my husband smile, at least for a little while. We took lots of photos of the pretty lights, it may seem we were there for an age. We were not. It was the circus then home. Home being a hotel room where I fell into bed in agony, an agony of my body, mind and soul. An agony unlike anything I’ve ever felt.

The next morning was back to our home, but to make the visit a little more special for the kids we took them to the Natural History Museum first.

It may seem strange, ‘claiming’ to be in so much pain but still pushing on. However, as a mother, something took over me.

A need to push the memory of me breaking down out of my children’s heads. Show them I’m ok, even though I’m far from it. I wanted to fill their minds with wonder and excitement so they were the lasting memories they brought home from the trip. Me too I guess.

Again many photos were taken. Again many smiles were seen. All were uploaded on my profile. I love to share the fleeting moments of being a ‘mum’ to my children. Most of the time I feel almost ghost like in the home. They know I’m here, but I’m never quite seen. The museum was genuinely a wonderful experience and great for access. So was Winter Wonderland (or at least the small part we saw). But inside, I was millimetres from falling apart. The whole time I was going out of my mind at the thought of a life like this, wondering how far I’d decline, how rapidly?

As the photos uploaded the likes from family and friends rolled in. They know how important these times are to me, how hard it is for me to achieve a few hours out and about. To keep that smile on my face.

Sometimes though, sometimes I wonder if I’ve gotten too good at it. Comments consisted mostly of how nice it was to see me ‘genuinely happy’. Even on the evening after my appointment where I’d originally told my husband I didn’t want to be in any pictures because I couldn’t force a smile. The evening I made sure I was too exhausted to sob myself to sleep so my children didn’t hear me. Even then I looked genuinely happy.

That scares me. It scares me because how can I reach for the help I need if people can’t see the cracks that run so deep? Why would anyone believe how bad things really are when I hide it so well? Am I hiding it for my children’s sake, so they’re not afraid, or because I can’t face it? Because if I do I’m afraid I just won’t be able to take it? Honestly I don’t know the answer. But I do know this..

I’m not the only person that does this. Many of us in the disabled /chronically ill community hide our pain. We put a veneer of smiles over our heartbreak and show that the phrase ‘you can’t polish a turd’ really isn’t true. My life had honestly gone down the toilet, but a few sparkly lights and a smile I ensured reached my eyes and all was well. I also know I’ve not been writing here because when I write I open up and a culmination of exhaustion, depression and certain events, has left me afraid to do so. But I had to write this. I had to get it out. Because I can’t fall into old traps.

The last time I hid too well behind a mask of smiles I left myself completely alone at the point in my life I was most vulnerable. I almost lost myself entirely.

I will not do that again. To those of you also hiding behind those smiles, the posed photos which hide the pain; some even making their illness worse to appear ‘normal’, I implore you to try to open up. I used to. I’m going to try to again. Not to seek attention. Not to garner sympathy. Simply to show the truth of my life. To help me accept it and hopefully find a way to come to terms with my new reality in the best way I can. This, this is the reality of that night…

Trying to hold it together as I lay full of worry in a room with my family.

Please note comments have been turned off on here due to trolls who hide behind no name, if you’d like to comment please do so on my Facebook Page @Littlelifeofmine where all posts are shared.

Dark shadows.

So, I’m going through a bit of a rough patch. A culmination of events has left me drained both mentally and physically. I feel as though all of the energy has leeched out of me, leaving just an empty shell. A shadow of my former self.

Shadows seem to be a theme in my life at the moment. Maybe because I seem to have a huge one hanging over me? I’m desperate to get out of it. To take a step forward into the sunlight. But I can’t, I’m shackled here in the grim darkness.

This post is not the one I’ve been wanting to write. I have had many ideas of things I want to cover. Fun ideas. Upbeat ideas. I want to show that life with chronic illness isn’t all doom and gloom. Because it isn’t. I love my life. I love my family. I’m happy.

The problem is, at the moment I’m a happy person stuck in the darkness. A shadow has been cast over my life and my smile. I know why. I know it will pass. But for the moment it’s here and I have to live within it. Groping around in the darkness until the sun bathes my aching body again.

It’s winter here. The weather is cold. Even in bed, hiding under the duvet, I feel it nipping at my skin. Cold is pain for me. It’s a lead weight in my hands and feet and nails being driven through my joints. Cold is exhaustion. It’s every movement taking so much more effort. Cold is my body seizing up and me fighting to make it move again. In the winter I am the tin man without oil, I’m a grizzly bear who’s been forced to stay awake. The shadow cast over me is matched only by the shadows under my eyes.

I’m tired. I’m so tired that I feel like I could sleep forever and still not be rested enough. I’m so tired I’m on the verge of tears and I don’t know why. Speaking is too much effort. I trip over my words and stumble and slur. I make silly mistakes and beat myself up for them. The shadow stops me seeing and thinking clearly, so my life is just a series of consecutive actions. None of which are thought out. Many of which are clumsy or foolish.

So, life at the moment is hard. It’s hard to see how I’m going to feel better soon. It’s hard to have the energy and impetus to do anything (blog writing included). It’s hard to just make it out of bed on a morning, physically hard. But it’s ok. Because my life is hard. It’s harder than I ever dreamed it would be. And, though I push them away when I’m struggling, I have a family that loves and supports me. I have amazing children who’s laughter and imagination cannot fail to bring a smile to my face.

So yes. I’m in the shadows right now. But I’m ok. It’s ok if you too are in them. There’s nothing shameful in that. I’m in the shadows, but I’m not despairing, because I know that in order to have shadows the sun is shining somewhere. Soon enough the winter will be over, I’ll be more recovered from recent health battles, and it will be my time in the sun again. Yours too.