My gut and bowels stopped working again earlier this month. They have now involved the neurology team. A lot of people with charge have Neuro issues including me.
Neurological type problems don’t just involve the brain but the nerves all over so for me they are starting to believe that this plays a part in my problems.
They tried nausea meds which gave me terrible seizure like activity that required tests. The tests came back normal but when I was little I did have them.
Some people need meds to help control neurological problems but I am lucky i just need my meds for reflux and anxiety.
For me there are no obvious neurological answers to my tummy but they think there is some kind of nerve involvement that no one can see and this could be why things slow down and stop working. Many people with Charge are the same as me.
Sometimes they can remove parts but they cant remove everything so they find other ways around it.
Some things that have worked for me are cranial therapies like oestepathy kinesiology and also massage to loosen everything up. i find if I miss a few treatments everything doesn’t work as well.
Every year on the 21st of September the CHARGE syndrome foundation hosts a day to remember. This is international day of kindness. On this day we remember those gone to soon and it is an opportunity to something nice for someone.
2020 is an extra special year because in the time of the COVID pandemic many have worked very hard to keep everyone safe. So I want to acknowledge some of these people who have helped me this year.
First there is my wonderful family and friends who love me unconditionally and put up with me in my worst times.
Next there are my amazing carers and support workers at home and at Life skills and respite. These lovely people support me to be a better person and have helped me have a life during a lockdown. Northcott gave me the opportunity to see my friends online and do something nice. My personal carers take me out and help me at home.
I also am very thankful to my Drs and nurses and all the staff at hospital wheather its a radiologist or the wonderful people at the entrance,cleaners porters and the rest they are truely amazing.
In this time it is good to tell people you appreciate them. You never know how much better they will feel. I love all the people in my life and don’t tell them enough how i feel.