Zoe's Story

In April of 2015, I was diagnosed with hyperadrenergic postural orthostatic tachycardia syndrome (PoTS), which is a rare heart condition and causes dysfunction to my autonomic nervous system. When I stand my heart rate increases and my blood pressure goes very high, I'm at risk of a stroke at any time and I pass out. I also have Ehlers Danlos Syndrome (EDS) classic hypermobility type. EDS affects all of my joints so I dislocate and sublux (joints partially dislocate) daily, it also causes problems with my internal organs and my collagen.

As well as EDS and POTs I have a ventricular septal defect (VSD), which is a hole in the heart, and my mitral, tricuspid and aortic valves regurgitate, this means that un-oxygenated blood (the wrong blood) goes around my body. I also suffer with different heart arrhythmias.

On Christmas Eve of 2015 I was told that I have bad lung function and bilateral weakness in my diaphragm, especially on my right side in the supine position. This means I cannot lie down: by doing so my oxygen levels drop dangerously low, I turn blue and go into hypoxic seizures. Between Christmas and New Year 2016 I fell into a coma for 7.5 hours and after I woke suffered a number of seizures.

I'm currently under the care of Royal Brompton Hospital in London and on 23rd June this year I had a sleep study there alongside other tests. The outcome of the study led them to suspect that I had an extremely rare condition and so they put me on ventilation. On 4th of August I was back to repeat the sleep study and it was confirmed that I have Congenital Central Hypoventilation Syndrome: this means every time I go to sleep could be my last. I have to sleep with a ventilator now otherwise I could die. What happens is that if I fall into deep sleep my autonomic nervous system stops working and so my brain doesn't tell my lungs to breath. In addition to the above I also suffer with heart pauses and am awaiting a possible pacemaker.

I'm currently under seven consultants, all at different hospitals. My health has got a lot worse over the past year, but you've just got to deal with it step by step.

My gastroenterologist consultant suspects I suffer with gastroparesis which means my stomach muscles have stopped working. I have lost five stone in three months and only have liquid food; I may well need a feeding tube as well as a central line. I also have a redundant colon, and so going to the toilet is impossible without constant laxatives and even then they don't always work. As a result I have been taught self-evacuation. My next operation is on my lady parts as those too are affected.

I have been wheelchair bound now for a year now and need 24 hour care. My home is finally being adapted for the wheelchair and I am getting a wet-room built to the side of my home, and I am having dropped kerb and drive with ramp access to the front door built in, and my doors widened to fit my wheelchair through: this will make my life a lot easier and a little more independent.

I am weaker now and I am poorly. My whole life has gone upside down and I and the consultants don't know what lies ahead. All we know is there is no cure of anything I have and with time it will only get worse.

Despite everything I am still the same Zoe: cheeky, stubborn and I like to take the mick out of myself in jest along with others. I'm still positive and every day is both a struggle and a blessing. I have to fight but we all have our fights. I make the most of what I have and still have the days where I feel half human, even though every day I have severe pain which never goes away.

I find swimming in warm water helps and it also makes me feel free and independent, however, again I need a carer there too as swimming can make my heart go into a dangerous arrhythmia. For pain I have oramorph and diazepam to help after a dislocation or subluxation and muscle spasms; however, I feel the side effects can be just as bad! I think it's something you have to learn to live with and having a positive frame of mind does help with pain control as cliché as it sounds.

I joined the Cloudy study because I wanted to help others, and also to see how other people are affected by chronic pain. I do believe in a relationship between weather and pain: with wet, damp and cold weather I suffer with a lot more pain, and when the weather changes it affects my heart rate and blood pressure, along with many other symptoms. I usually can tell if a storm is coming before the weather channel!