From one world to another
The ground beneath my feet moved suddenly. That comforting grey pavement started to crack and give way beneath me. Terror rose through my body and suddenly I was falling. Faster and faster it getting darker and darker, I was going so quickly, everything blurred into one. When I finally stopped falling, I landed on unfamiliar and uneven ground. My relief at landing was soon replaced by fear when I realised I had no idea where I was or how I was going to get through the clouds that surrounded me. I looked around and saw a faint light in the distance and I started to clamber through this unknown place using the light as my guide.
When you become chronically ill your whole world flips on its head. Everything you know, every single aspect of your life, changes. You fall without knowing where you are going to land. If you are one of the people who have a rarely known, barely researched disease, you have to fight through that cloud on your own.
I was walking through my life with no idea that the cracks in my pavement would ever open and swallow me whole. Sociable and outgoing, I was never in the house or sat still. I was the last one to leave the dance floor and the first one to down the shots. A 20-year-old girl with a big mouth and a huge cackling laugh. Then suddenly the cracks appeared, I started getting horrendous stomach pains, couldn't hold down food and just felt rotten all the time. I was in and out of the hospital, having test after test, seeing doctor after doctor. I fell, I fell so fast I couldn't breathe. Life whizzed by, I was stuck falling constantly, locked in a battle with my body. Doctors weren't much use, they had no answers, most of them pushed me further down. It was one of the scariest times of my life, it was like people didn't see how bad it was, how quickly it was spiralling out of control.
Finally, when I was almost at breaking point one doctor gave me a place to land. Gastroparesis. A strange, murky place I had never heard of. I was told it was rare, I have since come across many more people who have been thrown into this strange land who are also trying to find their way. It is these people who inspire me, who let me know that I wasn't alone and who I feel an instant connection with. We cheer each other on, give advice freely and often they become more than people, they become friends. Those who have not been to our land cannot really ever understand what we go through, the pain, the fear or feeling completely alone but we appreciate the ones that try!
Doctors are normally seen as figures of comfort, here they are seen as intimidating. Instead of fighting with us, many of them fight against us. Just because it can not be seen doesn't mean Gastroparesis isn't real, try telling that to someone in a flare up. Nausea, the vomiting, the pain and the feeding tubes are very very real! It is hard enough to keep on going without more obstacles standing in the way.
Becoming poorly often means leaving things behind. Your energy, your dignity and your freedom. I myself have become trapped in a weak, sick body. It is hard to fight, to walk through the clouds when you are so exhausted you feel it in your bones. When you're getting artificial nutrition and haven't tasted real food in months, yet you're surrounded by food. It is something humans are hard-wired to do, to eat, but no, you give that up. I have lost a lot of people I thought were friends and that was one of the most painful things of all. All of this is out of your control, it is really hard to accept.
Stop wanting what was, and accept what is. If you are constantly thinking about what you have lost you will be too busy to notice what you have. Although you may have lost a lot whatever it may be, you will almost certainly have gained things that you may not have had you not become ill. I am much more patient these days and I will always try and accept people for who they are. I have an amazing relationship with my family and friends, my relationship is stronger than ever and myself and another patient have a charity set up to help other people just like me, who fall and land in this strange scary place. You are not alone!
Just one last thing, when you have adjusted your eyes to this new country, you too will notice that same faint light I did. Follow that light, hold on to it and chase it no matter how tired you get, it will be worth it and it will keep you going for as long as you see it. That light, that thing you must keep burning bright, is hope. Hope for a better, brighter future.