"It's All In Your Head". A phrase I have heard too many times to count. Specifically regarding my chronic pain condition, Complex Regional Pain Syndrome or CRPS for short, funny just one letter more to make it CRAPS…which is just how it feels. You can find more information on the condition here.
For many April 25th is known as ‘Miss Congeniality Day’ for being the perfect date, because its not too hot and not too cold and all you need is a light jacket! However, for me this date has a different meaning to it, today marks 7 years since my initial injury when I was 14 years old, which has without a doubt changed me to the point of being a completely different person. I am often asked was it the injury that made you mentally ill… long answer short, no but it definitely amplified it and brought out some of my most difficult years. My life was completely turned upside down from that point onwards. I want to use the day of a way of spreading awareness of the incurable condition that I suffer from whilst also highlighting the links between physical and mental health.
So what exactly is CRPS? It is classified by, the McGill Pain Index as the most painful condition known to modern medicine, rating, even rating higher than childbirth (not that I am currently able to compare)! Alongside the physical pain, those suffering from CRPS also have to bare the emotional pain that comes alongside living in 24/7 pain as well as prejudice from people who don’t believe the pain is real because it is not something that is easily understood (even by doctors) or necessarily visible. Unfortunately at current there is no known cure and due to the high pain levels it is difficult for treatment when very little reduces the pain. Whilst the condition itself may not be deemed as 'life threatening', the effects of it are. CRPS is often referred to as the 'suicide disease'. So many within the CPRS community have taken their lives as a result of living with constant and intense pain. Many CRPS warriors have battled the black dog, been to rock bottom, searched for a way to escape the pain. Unfortunately not everyone climbs back from rock bottom.
Some of my symptoms:
Extreme sensitivity to pain;
Experiencing extreme pain from something that should not be painful at all, such as a very light touch;
Strange sensations, such as the sensation that my blood has been replaced by lighter fuel and lit.
Intense stabbing pain as though a knife if being pushed in and out of the limb.
Changes in colour - usually dark purple or bright red
Lack of movement in joints and all over joint pain
I think I have painted the picture that this is not an easy illness to live with. Day in day out pain, which don't get me wrong is damn right awful and I would not even wish it upon Katie Hopkins or Piers Morgan, but the physical pain isn't always the hardest part. It's the crying after the 25th doctor tells you there is nothing wrong with you and you are a liar. It's beginning to believe them. It's the guilt of cancelling on plans for the 10th time that month. It's the worry of taking so much time off that you won't be able to catch up on. It's the belief that you are a waste of a hospital bed and hospital resources when people are dying around you. It's the battling with doctors for pain killers when they just see you as someone just after drugs. It's feeling like something you are doing caused this. It's having to adapt your way of living. It's having to find a new career. It's not feeling like yourself anymore. It's knowing this is permanent. It's feeling like an outsider within your own body. It's having your body take control of your life. It's trying to make others understand when you don't understand yourself. It's having to start over, to learn how to live as though you have been reborn, into a slightly darker world. Finding your new normal.
I am so often saying that we need to treat mental health the same way as we treat physical health. We need to start treating the mind and body as one unit, all contained within the same vessel. What is damaging to the mind can be damaging to the body and what is beneficial to the mind can be beneficial to the body and the same goes vice versa.
When I tell you that I am okay, it doesn't mean that I am not in pain, it just means that I am not so drugged up on pain relief that I can understand your question. It means that I am completing the days activities to the best of my ability. I can enjoy life and feel happiness and still be in pain. Don't see my smile as a pain free day. I don't have pain free days. I may also have days that I say I am fine but the pain is consuming me so if there is anybody else in your life with chronic pain, although they may appear fine or though they are not in pain, they are likely just putting up a front - so speak to them, check how they are, provide them support and be there for them!
Sending positive vibes,