Kathy's interview
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How did all start?
Amniocentesis hit my spine whilst in the womb. Aspiration to remove fluid at 2 yrs . Fine from 2-13 yrs . Then symptoms started
Do you already have a diagnosis? How long did it take you to get it?
I have a diagnosis of Idopathic hypersomnia with delayed sleep phase and fibromalga type symptoms. It took until I was 36 yrs pld
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nuro sleep unit at James Cook University Hospital Middlesbrough UK. Dr reading neurologist. sleep study electrode. Sleep scale. Also modafinil and pregablin
What has been the most useful thing for you so far?
Diagnosis and acknowledgement after all these years and people not treating me like a drop out. Medication Public awareness.
What have been your biggest difficulties?
Nearly having my autistic son taken off me through school attendance taken to court 8 times. Family disappointment. Stigma. Relationships lack of. Watching my home fall apart. Everyone pretending I havnt got any condition. No help what so ever. Living on the poverty line. All my qualifications and experience at work useless .
How has your social and family environment reacted? Have your social or family relationships changed?
Yes there isn't as much stigma. But they just pretend I am healthy. I'm still isolated. Avoided and never visited. But liked.
What things have you stopped doing?
Caring about having Idopathic hypersomnia. Dancing which i did for long amounts of hrs before the pain . Working. Going out. Socialising. Walking. Running. Bending. Making love . Being in love.
What do you think about the future?
I don't know. Fingers crossed one day we can be awake enough to function in this world and not get left behind. I worry about my old age and financial situation for my son .
So far, which years have been the best years in your life? What have you done during them?
The first 13 before I was tired all the time. My son's life 21yrs of love . And my profession. And dancing.
What would you like to do if you didn’t have your condition?
Earn a living. Clean our house . Dance . Run . Walk with my friends. Wake up. Remember the 900+ books I've read . Save up for Connors future. Fall in love. Explain to my family how lonley and in need of help I've been .
If you had to describe your life in a sentence, what would it be?
I have a secret condition that no one wants to know. But I'm trapped and need you all to understand and help plse as II'm struggling
Finally, what advice would you give to a person in a similar situation?
Talk to others like you . Be patient with yourself. . Forgive yourself for having this condition.
