Well with the Dietician's visit over with, I can relax a little in the confidence of knowing that she wasn't too scornful but quite concerned none-the-less! It seems my problem is quite common in people with enteral feeding. In her assumption I'm still quite a young person who should still have an active part in society -- you can probably see why I like her so much! She fully understands my duty as a Wife, Mother and Daughter's role in the family network and that my backpack gets in the way of a mercifully normal life. Not that my life is normal! I have sclero to cope with and the torture of not eating a meal in the way normal folk would expect.
My problem lies during the day. This is the time when, let's face it, you need to be up and about doing what you have to do. I can't do anything with the heavy backpack strapped to my aching back and the tube is so long that I could easily get it caught and believe me that's painful. I can't count the number of times I've jumped out of the car with the tube wrapped around the gear knob. It's like being on a piece of elastic, catapulting me backwards and falling back into my seat. It's not nice either when shopping. It hangs beneath my coat and provides much whispering at the checkout!
A simple visit to the market or chasing my goats up the road, which whacks me out actually, is a major task and whilst I appear normal, folk wonder why I'm so reluctant to pick up our little Jack Russell Terrier which runs rings around their feet as I battle to hear what they're saying --- yes, it's sheer pandemonium!
The answer to all my woes lies with overnight feeding. In true vampire fashion it would be so fitting for me to undertake. Unfortunately, the last time I did that, I ended up bent double in excruciating pain and needing the toilet rather rapidly. It wasn't a great situation at 3am in the morning and I was still at it at 7. With my plight on the table, my dietician thought that the problem lay with the gloopyness of the liquid -- too thick due to the high calorific value.
She's suggested a lighter liquid. I joked "Fat Free" to which she laughed and told me "Not exactly." This formula would only give me 1 calorie per 1ml of feed and I can't calculate it into fl oz because we've gone metric -- gone bonkers I'd say! My current feed provides 1.5 calories per 1ml. I'm not splitting hairs but surely any calorie is better than none at all and she agreed!
So maybe this is the answer -- who knows? I'll give it a try before I disappear down a grid or a crack in the road. Great to see her again and Phew! she wasn't too harsh.