- Transverse myelitis
- Interviews
Anne Mette's interview
How did all start?
In december 2013 i began to have a strange feeling in right side of my body.
Most in the leg. Was like a feeling of being wrapped so i did'nt have the normal sensation of walking and i felt like a inner itch.
I had numness in my right arm and hand.
Then after a week or so i loss control of right leg and fell.
Do you already have a diagnosis? How long did it take you to get it?
I got the diagnose after 6-7 month.
Was at hospital 3-4 times to MR scans of both brain, spinalcord and had a lumbal test.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I get painkillers and water pills.
With out these i would not be able to work or come out much.
What has been the most useful thing for you so far?
It have been very helpful to find communities online with other patients.
It helps me that im not alone.
What have been your biggest difficulties?
It have been to accept that i cant work and be as social and spontaneous as i was before.
It have and still is very hard, to say no to things due to the fatigue that comes with Myelitis.
How has your social and family environment reacted? Have your social or family relationships changed?
My nearest family and the closest friends have reacted with confusion in regard to find out how me and my body 'work' now.
And i understand them! Its hard for me to.
Some of my family and alot of more distant friends dont really understand.
I suppose its hard to understand something that isnt visible and i try to remember that, when i sometimes feel that people dont get me.
What things have you stopped doing?
I havent been riding my horse for along time.
Partying is over.
Im not so spontanenous anymore.
What do you think about the future?
I hope that i can get a flex job (Danish system where i work a smal amount of hours and get paid by the system)
I really want to work and i love being with other people, so just sitting at home is not my dream.
So far, which years have been the best years in your life? What have you done during them?
Hard one...
Before or efter the illness came?!
Despite being sick since 2013 i dont see the years as being bad.
Im sick but have also learned who my true friends are and i have come closer with them.
Before the illness i think it was back in 2004-2006
Back then i was studying, had a boyfriend and had a life with lots of fun, no worries and just having a good time.
What would you like to do if you didn’t have your condition?
I think i still would be working in eldercare, as i did before.
I would be more social and i would have the energy to be more with friends and my horse.
If you had to describe your life in a sentence, what would it be?
Despite of the bad days with pain i do have a great life with lots of laughter and joy.
Finally, what advice would you give to a person in a similar situation?
Find information and get to know the illness.
When having a rare illness you need to look stuff up yourself.
Talk to your friends and family. Let them know how you feel and let them know, that its not them that have done something wrong, when you say no to a family meet.
Try to accept that other people cant see that something is wrong.
The illness cant be seen, so if they judge, its because they dont know better.
And Well... some people are just not nice and that is not your fault!
