This is Laura’s story living it’s NEADS, PTSD, Lupus and EDS. Below are links to help you learn more about what she lives with. This is her story in her words please be respectful.
What is a EDS http://ehlers-danlos.com/what-is-eds/
Where are you from tell me a little bit about yourself… . Love music (especially Michael Jackson, two tattoos to date of that beautiful man!) and animals (cliché I know). Married, no children and two jobs, food safety at a factory and singer 🙂
What is your name, age, and disease/invisible illness/mental health?
My name is Laura but I go by a stage name of Luna Nightingale, I’m 28 at this moment (29 in June 2017), my issues being:
NEADS (Non Epileptic Attack Disorder) PTSD, Lupus and Ehlers Danlos Classical/Hyper-mobility.
When did life change for you?
You know the sad thing? I can’t really remember a time I wasn’t this way, although it is steadily worsening.
What was life like before diagnosis?
A round trip of doctors, raised eyebrows and rolled eyes as “she’s sick again”, “it’s in your head” etc rang out through both school and work, from adults and children.
How has your diagnosis changed your life?
Sadly not as much as I had hoped before I knew the cause, although I can stand firmer in the knowledge that I am not imagining these things, knowing there is no cure and the continued dubious looks can be tiring.
Please describe the best you can a day in the life of you?
If I’ve slept it’s starting out ok, as generally I don’t, followed by putting whichever joint/s have escaped their moorings back into place. A round of painkillers takes the worst of it away, down to a tolerable level but never gone, then its off to work, whichever
job that may be. Throughout the day I’ll relocate various joints that dislocate, from the minor of fingers and toes to the more serious hips and ribs and continue on the pills. When the job is done I will normally crawl into bed for as long as I can, not to
sleep but to try and ease the ache of just trying to stand for 9hrs before its time to sort dinner. Then immediately after its shower and bed to start again.
What was/is the most challenging thing you have faced because of your diagnosis?
A lack of knowledge within the medical community means I find myself using half of a hard-to-get appointment just explaining what the disease is with regard to EDS, long before I get to the actual problem.
Do you find that you can keep up with others?
Not often no
What would you tell others living with your diagnosis?
Be prepared, its a fight every step of the way from disbelief to outright incredulity when you state how you live with dislocations, seizures etc but there is no cure, just remember you are not crazy.
What would you like to tell others that don’t live with a similar diagnosis?
First, believe them. Yes, I know, you hit your elbow that time and it didn’t dislocate, and yes I know you saw on Casualty that dislocations leave you screaming in agony so no WAY can the person standing in front of you ACTUALLY have just dislocated their shoulder and with a slight wince have popped it back in, and of course all seizures are epileptic in nature and controlled with a pill, because Holby City said so. But that is life for some people, myself included, and it’s hard enough without the disbelief and suspicion.
Second, I know you’re trying to help with this diet and that herbal pill and that this bath salt helped when you pulled a muscle, but please, PLEASE don’t. Trust me if you’ve heard about it I have tried it and more than anything it just comes across condescending which I know is not the intent.
What have you learnt on your journey?
That a diagnosis doesn’t mean freedom, it can be a tangled nightmare, but that I and many others are a lot stronger than I ever imagined possible.
Is there anything you would like to add about your journey?
It’s only just begun, some days I can’t face the idea of more fighting, but I hope that the next step will be the one.
Thank you for sharing your story with me and with the world. Wishing you the best, and much hope.