Food, the good the bad and the ugly!

I'll bet most of the people reading this post will know where I am coming from with this one!

How many times since diagnosis has someone asked you, "Well what DO you eat?"

For me the answer is simple, "nothing" is my reply. This is quickly followed by, "Well, you MUST eat something!"

I have lost count of the times this has been said to me. I came to the conclusion that people react this way because they simply can't imagine what that might be like, so I thought I would try and explain.

No, We have not lost the ability to chew, swallow and ingest food. There are no obvious physical changes such a lumps bumps or obstructions. You can't see gastroparesis by simply taking a picture of our insides. But that doesn't mean it isn't there!

We have to learn to override one of the the strongest natural urges of the human body. You don't just eat with your mouth, you smell it you see it... you want it!

Living with gastroparesis means that instead of feeling contented and energised after eating, we feel so ill that we sit there hugging the sick bowl vowing that  we'll never touch food again! Many people describe this feeling as "permanent stomach flu". Personally, I think that doesn't even come close.

For us to be able to function at all we have to adapt to a whole new way of life. Balancing medication and nutrition is a real challenge from mild to severe cases... it doesn't matter, we are all unique.

So from day to day, we plan our activities around our regimes, avoiding or restricting food to enable us to function at all.

Imagine how it feels to be so sick that you starve your body in order to have a better quality of life? It's not out of choice... it's necessity. Give in to your urges and all hell lets loose! So please don't offer us things, or ask us why we're not eating...

We love food, but it doesn't love us!

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 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 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 appriciate 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 isnt real, try telling that to someone in a flare up. The 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 your 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 too notice what you have. Although you may have lost a lot what ever 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.


Rachel Xxx

Can You help GIFT?

We are appealing for help from any willing volunteers! Myself and Rachel have been missing in action over the last few months due to our own health battles. We need our members to get behind us and help us grow.

You don't need to make a huge commitment, there are so many ways in which you can help. We would like to start posting out bracelets for people to sell to their friends and family on behalf of GIFT. So if you would like to order some please email Natalie at : helpmeminx@yahoo.co.uk and I will get them sent out to you.

Also we are looking for people to help with compiling a newsletter and mailing list so if there are any "would be" journalists out there, please don't hesitate to contact us! If you would like to help with the newsletter on a smaller scale we welcome letters, stories and useful information from anyone who would like to have their say on the issue of Gastroparesis or intestinal failure.

I hope you are all keeping warm and well xxx

Natalie x