Looking back and feeling grateful

When I first started to write this post I had decided to talk more about how my story began. And while I do cover that subject matter, my mind very quickly began to ponder the impact my illness had on those around me while I was recanting those early days. I guess it would be incredibly naive to think I could talk about those early months without mentioning those who played such a vital role in my life a that time.

In my haste to get my first post off my chest I wrote all about my motivation for doing this but I didn’t actually take the time to introduce myself. My name is Natalie and I am 35 years old, married to my husband of 4 years Michael and proud mother to our fur baby Layla, my doggy saviour.

As you may have guessed from my first post I have a long term chronic illness, Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). The condition affects both of my legs and means that I rely on crutches and a wheelchair. As with so many of these stories it all started in the most  innocuous way. I was 18 years old in a nightclub after a friends birthday party when someone stood on my foot. Nothing unusual about that, happens to people all the time on a night out. However, the end result for me was a little more serious than finding a bruise you don’t remember getting the next morning. 

It wasn’t until the next evening I realised  something just wasn’t right as the level of pain I was in for the really minor injury I received just didn’t seem to fit. But, after a trip to A&E I was told it was nothing more than a sprain and sent on my way with a bandage and walking stick. I persisted for a few days sure it was nothing serious. I was 18 years old nothing bad could ever happen to me, I was invincible. Then in an evening I remember all to clearly I realised something much more sinister was afoot. While working at my glamourous teenage job on the McDonalds drive thru this pain so intense came over my right leg that it completely panicked me. It was like my leg was burning from the inside out and all I wanted to do was rip off my trousers.  I remember stumbling down the corridor of the Drive thru window desperately looking for Michael and then collapsing in the kitchen. Still to this day that night gives me chills, my entire life changed, it just took me a few months to understand exactly why.

It was approximately three months before I received my CRPS diagnosis, really quick compared to many other people’s  experience. It felt like a lifetime to me though. I was studying for my A levels, was destined for university to study my dream degree course and I was really active, I loved to dance. 

All of a sudden my life was turned upside down. I was in so much pain and drugged up to my eyes balls and no one seemed to understand why. Doctors were either completely baffled by me or told me it was all in my head. It wasn’t until my desperate parents almost had a break down at the GP surgery that we finally got a private referral to see a neurologist. 

Finally, he gave us the answer we had searched for, unfortunately it wasn’t the answer any of us had hoped for. There is no cure for this condition and it could have long term consequences. That was terrifying to us all.

In the beginning there was hope, we had caught it earlier. Spinal nerve blocks may help reboot my system and everything would be fine. The first was successful, although sadly the relief was short lived. The second then made the pain spread up my leg. More blocks followed and every time I put all my hopes into it’s success. Finally BUPA informed us there was nothing more they could do for me and that NHS pain management was my best option now. It was devastating, what would I do with my life now?!How could I continue to live like this? My whole world and my future were falling apart and I was a complete mess. I didn’t cope well.

While this was a tough time for me, looking back, it’s my family and what they had to endure which hurts me the most. My parents were utterly helpless, all they wanted to do was take away my pain and there was nothing they could do. I still to this day don’t know how they kept it together. They never let the strain show, they were my foundation, biggest cheerleaders and did everything humanly possible to lessen my pain. If I was to even just calculate the money they have spent on a myriad of alternative treatments over the years it would be a staggering amount. And as much as I appreciate all of that, it’s the nights they just held me as I sobbed and listened to my frustrations and fears, that’s what means the most to me. They never let the mask slip. Everything was going to be ok. That message has never changed and they do more for me than I could ever repay them for it’s just that our expectations of what ‘OK’ is are just a little different now.

Then there is my younger brother Damien. Only 13 years old when this happened and his family life was irrevocable changed forever. He never once complained in front of me even though so much of my parents time was taken up caring for me. I still remember him making me my favourite loaded potato skins and having a carpet picnic with me in my bedroom because I couldn’t get out of bed after a procedure. Even with his good grace I still have an overwhelming sense of guilt, I stole part of his teenage years, I gave him a bigger burden to carry than he should have had. I know the situation really upset him at the time. Seeing me in so much pain was too much for him to have to deal with and for that I will always be heart broken.  

Then there is Michael. At 19 years old and after only 6 months of dating all of a sudden his girlfriend was seriously ill, that’s a lot to deal with. We had a whirlwind romance and knew we loved each other very early on. We were so happy and planning for a life together. Hoping to save him from guilt and further upset my parents gave him an out, took him to one side and told him no one would blame him if he just walked away. It was too much and he had his own future to worry about. There would be absolutely no shame in leaving me, they would look after me. 

He was stoic and determined. He was staying right by my side and no one could tell him other wise. He was and still is my rock and my everything. It’s been 17 years now and we are still here fighting the good fight. Facing every challenge my illness throws our way. I can’t for a second imagine doing this without him. He pushes me to do better and be better, to keep on fighting and not give up on our future. I need that so much from him and I often lean on him too much. But,  he never judges me, never shames me for my emotional turmoil, makes me feel brave and pulls my focus back to what’s important, you can’t let ‘it’ win. 

My support system has widened over the years and I have so many people who play a vital role in my life and I will without a doubt be writing about them all at some point. But, for today, I will leave my story there. Thankfully my parents and Michael were right. I need to keep on fighting the good fight. And while our expectations are different, every fierce battle and bump in the road is just a semicolon and in no way a full stop. There is still plenty more story to tell. 

3 thoughts on “Looking back and feeling grateful

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  1. I have been following your journey through your mum and dad Natalie but when I read your own story it makes me realise even more what has happened to you. You have been through such a lot and are continuing your fight in a truly inspirational way. I hope you continue to let us know how you are doing.


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