Kay's interview
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How did all start?
The first episode was 14 years ago, although I had signs of it when I was younger. I got taken to hospital by my partner who was a nurse, gave me fluids and anti sickness meds, did blood tests. Nothing was wrong and I was told it must of been something I ate.
Do you already have a diagnosis? How long did it take you to get it?
Yes I have a diagnosis but I only out it last year. It took 13 years for me to get an answer, although I had an idea it was cvs myself before then.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I haven't seen any specialist. I was diagnosed in hospital so I saw an a&e doctor, who told me it was cvs from my past history.
What has been the most useful thing for you so far?
The Mito cocktail has really helped. I have tried lots of different medications but none of them help when I'm in an episode. RSO oil is the only thing that has stopped one so far.
What have been your biggest difficulties?
Losing so much weight and strength because I've been sick so much. Not being able to work anymore because I haven't got the stamina. Finding a doctor that is willing to learn if they don't know about cvs.
How has your social and family environment reacted? Have your social or family relationships changed?
I don't go out as much as I used to, I'm always so tired and don't want to push myself for fear of putting myself into an episode. I often get sick so can't plan ahead.
What things have you stopped doing?
I don't work at the moment, my job was physical so I can't keep up now. I don't go out as much and when I do I have to have medication on me.
What do you think about the future?
I am not sure about my future, I hope I can get the cvs under control better so I can start doing things again.
So far, which years have been the best years in your life? What have you done during them?
Before I got really sick a year ago I was doing really well, only having a couple of episodes a year. I was working doing something I loved.
What would you like to do if you didn’t have your condition?
Get out more, do more, cvs restricts you so much when the episodes come close together.
If you had to describe your life in a sentence, what would it be?
It's an interesting ride but you will need a seat belt!
Finally, what advice would you give to a person in a similar situation?
Don't give up, everyone's different, trail and error eventually get the right combination of medications to help. Don't hold off going to the hospital for fluids if you think you need them, dehydration can cause fatal complications.
