April 3rd - Infusions.

Usually I look forward to my infusions. Infliximab is working great for me and the 6 week wait is certainly worth it.

11 o'clock appointments, a perfect time for me, not too early - I don't do early mornings. A two and half hour infusion, not too long, so should be plenty of time when I get back to walk the dog and do other things.

This time, 2 hours in the waiting room, then I was called in and told to take my infusion seat. A lady who arrived 1 hour later then me to the waiting room was called in at the same time and they set her infusion going within 10 minuets of her arrival. It wasn't for almost 2 hours after she had started her infusion that they started mine! My infusion time should have been before hers and was the exact same infusion, so no reason why mine should have been delayed or even done after hers was.

Oh well infusion done now! Didn't get back until 6pm. Shattered as always. Due to having been sat in a chair for the extra 4 hours, was unable to move my leg and was in agony - not sure if EDS is the reason for that. Something isn't right with my leg - think I need another appointment with the Rheumatologist, however I have been told I am no longer on his list and Swindon are no longer taking on new patients, so I'll have to travel up to Bath - not easy for a non driver, nor someone who finds traveling distances makes them feel very ill!