Sorry I haven’t posted much over the past few days. Unfortunately my illness had gotten the better of me and after thinking I’ve been managing okay in the New Year, my body started saying otherwise. I am getting a bit better though and building my strength back up.
Today I visited the hospital for a gastric emptying study. I had two markers placed at the bottom of my ribcage. I had to drink 500ml of liquid which was a combination of radioactive stuff, water and vanilla fortisips. I had to drink a cup every 2 minutes for 10 minutes and then stand in front of a scanner for 30 seconds facing forwards and then 30 seconds facing backwards. The first scan was right after I finished the last drink and then every few minutes to start with. After the initial scans I had to go and sit in the reception area and go back to be scanned every 10 minutes. This went on for a few hours and then I was told I could leave. I have no idea how it went or when I will get the results so I just left a bit confused.
When I got home I had received a letter from the consultant Rheumatologist that I saw at the hospital last week. I have been referred to the Ehlers-Danlos Service at the Northwest London Hospitals so it looks like more trips to London this year. I am hoping that the London hospitals will be able to help me further on my journey with EDS. The consultant has also arranged for me to have a echocardiogram on my heart and I should receive an appointment for this in due course. I had no idea what this meant but after doing some research it is an ultrasound scan of my heart. I hope that I get appointments soon so that I can get help soon.
Hope you are all having pain free days. Charlie x


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