Not being able to eat, or drink, having to be fed through a drip and not being able to stand without fainting.
Issues Fleetwood woman Vicky Nash has to endure every day – with the rare condition dysautonomia. She is sharing her story for Dysautonomia Awareness Month.
Vicky, 31, said: “It’s brought on by a genetic condition, it’s attacked my autonomic nervous system – my body can’t regulate the normal functions it should subconsciously, like heart rate, blood pressure, digestion I can’t stand without fainting, my type of dysautonomia is hyperadrenergic posture orthostatic tachycardia syndrome. I live on a liquid feed and fluids in a saline drip, as I can’t drink. There isn’t enough awareness and people don’t understand the impact. I’m bed-bound 95 per cent of the time and use a wheelchair.”
As the condition is rare and there is little awareness of its symptoms, it took Vicky a long time to receive a diagnosis. But she says she is lucky to have a supportive medical team and her partner Dave Robinson, who also acts as a carer.
“I moved doctors surgery about four years ago and my GP now is great, she has saved my life really. I’ve got a great medical team. But that’s not the same for everybody. You need a doctor who will listen and not just put it down to mental health. Now I urge people to be firm, get a second opinion, don’t take no for an answer – you know your own body better than anyone else.”
While Vicky’s condition is very isolating, she has found support in online communities and set up an online support group herself.
“I do get bored and frustrated, I’m sick of day time TV. I’ve seen people I grew up with going out in their 20s and building careers in their 30s and I’m just in limbo. You do lose friends because people have their own lives. But I’ve made some amazing friends online.”
* Dave will DJ live on Facebook on Saturday, to help raise money for Pots UK.