For as long as i can remember i have been saying to Mr Moss and my speech therapist “my swallow isn’t working properly/ im trying soo hard ” and being told to try harder, to keep trying, that most people are further along with their eating. I can honestly say I would give almost anything to be able to have a slice of toast or a bowl of cereal or a fizzy drink (the bubbles hurt my mouth)… so my speech therapist finally says we are going to do a videofluoroscopy .
“This test gives us a clearer picture of what is happening in your mouth or
throat when you swallow. It also allows us to see if there are ways to
make your swallow safer and easier.” (pinched from the nhs website )
So the test was last week and it was in a special xray room — there was a plastic chair, like the ones we used to have in my secondary school. My speech therapist was behind a screen in front of me with a radiologist and radiographer, then there was a second speech therapist to my left who gave me things to eat and drink, starting with a odd tasting liquid which was of a watery consistency it made me cough but was ok – I then had a few different things to try including the pink yogherty thing.
anyways I had a call Thursday from my speech therapist who said could you come in for the results – and im not daft that’s never good… so I said am I aspirating ? she said yes .. I then told her I had a cough so she suggested that I go to my gp to get referred for a chest xray incase I have a chest infection.
So I go in today and we watch the video back and even I could see me aspirating Im told how dangerous it is ..I was also told about a huge amount of swelling around my neck throat and tongue. I was told that I shouldn’t drink water any more unless its thickened to a syrup consistency (which incidently makes me gag) and that I am now only allowed 2-3 teaspoons of yoghurt and not to see it as eating but to see it as swallow therapy .. I am then given some really hard exercises to strengthen my soft pallet and the back of my tongue.
I feel so annoyed that I have tried so bloody hard and told to try harder, which I have and now I have to stop trying to eat and 100% reply on my peg I have chest infections to look forward to and feel I have gone months backwards in terms of my recovery.
Im off to bed now tomorrows another day