Postural Orthostatic Tachycardia syndrome is an intolerance to being upright. When Chloe stands up her heart races, she feels dizzy, faint and nauseas. If Chloe does not sit back down there is a possibility of her fainting.
Food is not pushed through Chloe’s digestive system effectively so eating or drinking causes severe stomach cramps and vomiting. Because Chloe now cannot eat or drink anything she now having to be fed via a tube which bypasses her stomach and goes directly into her small bowel. This means being connected to a pump in a backpack for 24 hours a day. Chloe has had surgery to have a jejunostomy tube fitted permanently through the skin on her stomach directly into her small bowel.
The Dysmotility of Chloe’s large bowel, requires regular intervention. As it does not work on its own effectively, it means Chloe will need to take strong laxatives for the rest of her life. This is debilitating for Chloe, and strong laxatives make her bowels unpredictable. Chloe's small bowel is also very sensitive and she frequently get's blockages- which means she has to go to hospital.
Myalgic Encephalomyelitis causes Chloe persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. Chloe sleeps for many hours of the day and all night, yet still wakes up exhausted. Chloe feels mental exhaustion as well as physical, meaning she cannot even concentrate on simple tasks.
Joint hypermobility causes long-term joint pain and fatigue, a condition that features joints that easily move beyond the normal range expected for a particular joint.
Fibromyalgia is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased susceptibility to pain, Fatigue and muscle stiffness. Chloe suffers with all these symptoms.
Addison’s disease is a rare disorder of the adrenal glands. It affects the production of two essential hormones called cortisol and aldosterone. Chloe is now on steroids to try and replace her own levels. Without them it would have dangerous effect on Chloe’s body. Meaning she could go into a dangerous state called 'Adrenal Crisis'.
I hope this has given you an insight into the day to day struggles Chloe has to live with, as a 19 year old girl.
Because of the amount of pain Chloe has suffered, the nerves in her legs shut down and this is a very difficult process to reverse. Chloe is not able to move at all from the waist down and relies on being hoisted and using a wheelchair.