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What’s It’s Like Living Your ‘Before’ Picture

Alice | @alicefowlefitness | November 28, 2018

You know when people post before and after photos of their fitness journey and it looks amazing and you can't help but feel proud for some random stranger on the internet? That within a year they have been able to change their life? Well, I kinda hope that will finally be me. Just not with fitness.

For 10 years now I have suffered with a chronic pain syndrome called Complex Regional Pain Syndrome where I have insufferable pain in my right foot 24/7, 365 days a year. It occurs to 1 in roughly 5,000 people. It can last for someone's lifetime without them doing anything to deserve it. So far, there is no cure. There's no magic pill you can take where you suddenly wake up one day and feel fabulous where you could just go for a run or ride a bike. That doesn't exist.

I can't actually remember what it's like being pain-free. I can't remember what it feels like to not feel anxious every time I stand up in case I can't keep walking. I can't remember what it's like to not feel terrified in crowds in case someone stands on my foot and I can't walk properly for weeks after. Being scared of my own body is just something you have to get used to with CRPS and you constantly feel like you're living in a 'before' picture while being told that there really isn't an 'after'.

You are never told that you will get your 'big break'. When you go to the specialist doctors they basically tell you to manage your life with the pain you have and sign you off. I haven't seen a doctor since I was 15. They signed me off even though I was still hurting. They told me there was nothing they could do and they are right. There is nothing they can do because it's not fully understood. That's not their fault, they are doing the best they can. But it seems to go against everything you normally think of when you think of someone who is suffering. Someone who is suffering should be helped because that seems like logic? You see a family member who is crying out in pain and you'd assume that there was something you could do for them?

So you go through life thinking that your 'after' story is just being able to do normal functions like walking the dog and cooking a meal. That the best it will get is just being a normal person sometimes? Even though you're just in as much pain as you were, that you're just supposed to know how to cope and told to live your life as best as you can.

That was until this summer. 

On the 6th of August 2018, at roughly 10:25, everything changed. I was given hope that maybe I am still living my 'before' story and that maybe I will, someday, live an 'after'. I was told today that I was an ideal candidate for Dorsal Root Ganglion Stimulation (or DRG as they called it). It sounds scary, and to be honest, it is. It's essentially a generator that masks pain signals being sent to my foot. Sounds easy right? It involves a spinal cord surgery, a generator being inserted under my skin and 2 months of resting before being allowed to exercise again. For a lot of people, the thought of choosing to have a permanent bump under their skin would be a bit daunting but for someone who has lived with chronic pain for more than half their life, it's a tiny tiny tiny price to pay for a potential slice of freedom. 

It's not a cure. It won't completely get rid of all my pain. Hell, it might not even work. But this piece of hope that I've never had before and is something I am allowed to cling to. This small procedure that could potentially change my life is within my reach.

To anyone who feels like they won't get their 'after' picture, don't stop looking for answers. I gave up 5 years ago with no thought or hope that I would ever be truly pain-free. Yes, it won't disappear completely but that doesn't matter to me. Just being able to have an anxiety-free life where I don't have to worry about whether I will be able to read exam papers or just being able to sleep more than 5 hours a night, is a new life that I want to be living. 

In 2 years time, the place where I am now, and the last 10 years, could be my 'before' story. But you know the exciting part? My 'after' could be out there for me in less than a year. I could be living a new life that I never would have recognised in the last 10 years. In less than a year, I could be looking back on half my life and thanking every single lucky star in the sky that I was able to get the 'after' story that I feel I deserve. 

If you feel like you're struggling with your journey, or you feel like your not getting the 'after' you deserve, go out there and look for it. Ask friends and family. Research the internet. Look at clinical trials. Find alternative medicine. Just don't stop trying to find the life you should be living. 

Alice is a 19 year old Geology student who lives in Buckinghamshire. She suffers from Complex Regional Pain Syndrome and has been for 10 years. This doesn’t stop her from swimming, weightlifting and doing yoga while also teaching swimming. Her blog promotes wellbeing and a concern for climate change.

By Alice

Instagram: @alicefowlefitness


Tags; #ComplexRegionalPain #InvisibleIllness

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