Emma's Corner
Dysautonomia News is now featuring "updates" from Emma Nicholson, a POTS patient in the United Kingdom.
Hi
all, I hope everyone is well....
Things are good at this end. I now have had my operation for a new port, which is working fine. I hope in a few months I can carry on my treatment at home.
It’s so strange when I look back over the last few years, and I find it hard to feel I’m the same person! I think my illness has made me look at life very differently than maybe I would have, and I respect things and people close to me that little bit more.
I know that when I had my long spell in hospital people thought I was rather 'odd'…and looking back I can't really blame them, but what concerns me is still the lack of real understanding some doctors have about POTS. People’s feelings toward POTS concerns me as well. Don’t get me wrong, I know that doctors are there to get you as well as they can, but I think that sometimes in order for them to achieve that they need to listen…really listen to the person and the feelings they are expressing. I know that w-a-y back the doctors thought that nothing was wrong with me, and they didn’t really want to know... but IF I had been 'putting' all this on then surely I would have had some kind of mental health problem that should be addressed? I think doctors sometimes get too caught up in 'text book' medical treatment rather then person based. My advice to anyone in the situation I was in is never give up because I was lucky and found a doctor who did care about the person I was, and was also stubborn like me! I think if a doctor stops trying to know everything and works with the person then situations like mine can change very quickly.
I couldn't be happier and things seem to be falling into place.
I would like to know how many people have to use wheelchairs or are
not able to get around from time to time due to this condition. If people
could email me with their situations that would be great: emmasuffolk@supanet.com
Emma
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