The Grief for a Future Life

When a doctor tells you that your pain is all in your head and it’s time to get over it what would you do? If you had been fighting for your voice to be heard and you felt like you were sinking in quick sand, how would that impact on you? Your mental health would suffer. The constant feeling that you are going crazy is enough for anyone to completely lose it. With my CRPS diagnosis, I really had no idea what lay ahead of me.
The pain got worse. Crushing, burning hot, burning cold, crawling, stabbing pain. My ankle started to set in one place and the skin on my foot was disgusting. The swelling and redness didn’t seem to go away, no matter what I did. I was caught in a storm that I couldn’t escape.
As the pain got worse, so did my mental health. I went from a happy, active, bubbly 25 year old to someone I didnt recognise. I felt so low, so worthless. I couldn’t understand how something could hurt so much but be told that they couldn’t find a reason for it.

But there was another part to this ugly in my head. I was being bullied. I was being bullied by people I trusted, by people who I thought were my friends. I thought by trying to do what I could to make them happy that they would stop. But they wouldn’t. They continued to ridicule me. To belittle me. To make me feel like the most worthless piece of scum to ever walk the earth. A worthless piece of gum that was stuck to the bottom of their shoes. The scraping and the scuffing, chiseling at it piece by piece until eventually, it breaks.


knew that I wasn’t ok. That this constant torment from people and the CRPS in my head was not ok. I was hiding from something no one should hide from. I would stay hidden in my house with the front door locked. My heart would race and I struggled to catch my breath. I would jump any time my phone would ring and if it was an unknown number, I would send it flying across the room away from me. I didn’t want to see people and I didn’t want people to see me. If my anxiety level rose, so did the pain. But if my pain level rose, So did my anxiety. It’s a vicious circle I still battle every day.
The stigma surrounding mental health is tough to break. You feel weak and are believed to be weak. You are made to feel selfish. How could anyone think that ending their life was their only solution? How could you think that your family and friends would be better off without you? You can’t understand how, until you have been there. There is a difference between feeling sad and being depressed. It’s like a dark fog inside your head that you can’t shake. It’s like standing on the edge of a cliff and deciding whether to step back or step forward. You weigh up the pros and the cons of the jump, but sometimes the pros outweigh the cons. You don’t think about what you will be leaving behind because you can’t. It’s lost. Being pushed to the edge has a a very destructive effect on you. There is a voice inside of your head constantly telling you to jump. Step forward because you are worthless. But then there is that little voice that will sometimes speak up. It says step back because you are worth it. It takes a lot of strength, courage and support to step backwards.
The pain team, I still call them my army. They could see I was not ok. I couldn’t hide it from them. They knew. They had seen it before. I wasn’t the first and I most certainly won’t be the last. I spent a lot of time with the psychologist, physio and OT, talking about what it was to be me. To feel so much pain you wanted to vomit or pass out. To not sleep. To not be able to do what I used to do like run, ride a bike, to work or be independent. The slightest touch sending you into a complete tail spin. I hated my life and I hated my leg and CRPS for what it was doing to me. I didn’t know it was possible to hate a body part! I hated it for what it was taking away from me. People suffer through loss and grief when they lose a loved one. I was suffering loss and grief for the life that I once had and was supposed to have. This may sound really selfish and self centred but it was my new reality.
People constantly tell me to accept it. But I don’t think that I ever will. How could anyone accept this? I truly hate it. I hate the spasms that send shockwaves through my right side making me twitch. I hate falling down. I hate hurting myself trying to do normal every day tasks. I hate the way that I feel. I hate that my mind is constantly fogged and I can’t remember things. I hate feeling down. I hate having to stick a paper bag on my head with a painted on smile trying to hide what is inside from everyone. Inside I am screaming. I am yelling and cussing like a sailor. But I am also fighting.
I have learnt to appreciate what matters. I have my husband and my family, and friends who are now family. I have lost friends because they couldn’t understand what was happening to me and they couldn’t be around me. I needed them but they couldn’t handle it. They shut that door and walked away.
I have found that many people will ask if you are ok, but really they don’t want to hear the truth. In society’s mind it is acceptable to say ‘good’ or ‘fine’. It is not acceptable to say ‘I’m not coping, I’m not ok’. This is not the way it should be.

I’ve now lived with CRPS for nearly 6 years and every day is hard. But I found my army. I have physios, friends, family who are there to fall back on. They pick me up when I’m down and they give me a swift kick in the pants when I need it. Some days are rotten. Some days are better. Marvel in the small things.

I know now that the way I feel is nothing to be ashamed of. We shouldn’t bury our heads in the sand when it comes to mental health. Anxiety and depression should be spoken about. It does not discriminate. It can effect anyone, any time.

This is not my own personal pity party. I hope that by sharing my own experience I can encourage others to speak up and seek help.

Lifeline 13 11 14

Kids Helpline 1800 55 1800

Beyond Blue 1300 22 4636

#breakthestigma #crps #complexregionalpainsyndrome #mentalhealth #depression #anxiety #bullying #bullyingisnotok

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