Health Update,  Mental Health

The fear of chronic illness flares

As I lay here in bed, in the middle of a massive flare, I thought we would chat about the fear of chronic illness flares.

As I lay here in bed, in the middle of a massive flare, I thought we would chat about the fear of chronic illness flares.
Photo by Jude Infantini on Unsplash
Image Description: A bed is seen in muted light, and someone is hiding under the covers

I have spoken here a few times about my chronic illness journey, I thought I was healthy before that first flare. I was a newly qualified nurse finding my feet, but I was actually born with hypermobile EDS and neurological issues that my neurologist refused to look into. When I found this out a lot of things started to make a lot of sense.

That first flare left my in pain every day in all four limbs, chronic headaches, and most of my body numb. I had to relearn how to walk when I cannot feel the floor, years with walkers, crutches and physiotherapy appointments.

But that flare began with left lower leg swelling and pain which gradually spread through all four limbs. And that is just how this flare began…

The fear of chronic illness flares like this one is that it will not get better, that once again I will find myself trapped in a body that will take things from me. That first flare took my nursing career, the home I had for myself, the relationship I was in… will this blow up my world again?

I recently found friends in my area, I have my Youtube channel and this blog, my wonderful husband and I’m a carer for my mom. All things that mean a lot rests on this flare not exploding my life.

So many of us find ourselves in this situation as we lay in bed trying to rest, our minds racing over the past. I try my best to practice mindfulness but its easier said than done when my body is screaming at me.

I know I’m not alone in these moments, that knowledge gives me some comfort because too often we are alone when we have these moments. Which is also why so many people doubt us because they don’t see these moments.

We often use make up or, for me, pretty outfits to hide our pain and fear, symptoms can be made invisible for when people are around. But we cannot hide them from ourselves, and we cannot hide those fears and emotions when we are alone.

If you are flaring, or struggling alone right now, please know these fears and worries do not just plague you. There are always other people laying in bed feeling the same, and feeling alone, which is why I started this blog in the first place.

When I first became sick, I felt so alone and so scared, I had no idea where to turn or who to turn to especially when I had to leave my life behind and move back to my parents. They became my carers, all my independence was gone, I worked in several jobs from offices to shops to even a dentist!

I am so afraid now my friends will disappear just like they did back then, that I will lose the little independence I have and will stop being able to enjoy days out. My mind is constantly whirring with fears and worries because I have worked so hard to get where I am now.

But as I look at my best friend Gizmo who is sat on my bed, as I write this blog post I have to try and remind myself all I managed to do with the illnesses I already had. So, please. If you are in the same place I am today, try to do the same!

Society likes to convince us that unless we are productive, we are nothing but that is simply not true! We are human beings, and we mean something even if all we managed today was to lay in bed trying to hide from these fears and worries.

Let go of the past, appreciate how amazing you are, and binge watch a tv show…. vampire diaries for me! The fear of chronic illness flares are always there in the background they are just louder in these moments in solitude. Take care

Thank you xx

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