I would like to extend a very warm welcome to my latest guest ‘C’. She has multiple sclerosis and a few months ago, decided to share her experiences. In this series of posts, she gives us some brief insights into her difficulties and the coping mechanisms she employs as she lives with MS.
This is my first post on my new blog. It is for anyone who has problems swallowing (dysphagia). It will be shared on the M.S. Trust website, but it’s also for anyone with the same problem.
I was diagnosed with M.S. December 2012 and started a disease modifying drug the following July for a year, when I had a bad reaction to it and came off it immediately. I was offered tablet alternatives but I have now developed dysphagia. I have gone from a reasonable 9 stone to 5 stones 10 pounds in about six months.
I find it difficult to eat all the dairy products that they tell me will help put on weight because I also have very bad mucus which adds to the swallowing problem. Fortunately I live at home with my husband who is a great help to me. He does all the food shop, most of the cooking and washing up and occasionally helps with the ironing. We have been hoping to have a new kitchen for about three years now, but this problem has put it on hold.
My last visit to the doctor on Tuesday gave me one week to put some weight on, he says before he will have to admit me to hospital. He doesn’t want me to have a feeding tube as I can swallow but only very slowly, and he thinks it would be detrimental to my swallowing abilities to have a tube or peg. So at the moment I am sitting on the sofa all day (not allowed to exercise as it burns calories) trying to eat and drink all day, as long as they aren’t dairy, too thick or too thin liquids. I eat three dessert-style oral nutritional supplements a day and try to have half a high energy high protein drink. I always have porridge for breakfast, but very rarely finish it in about one-and-a-half hours and try to eat a kids meal of chicken and mashed potato with veg and always scrambled egg with one slice of toast (the crusts cut off, of course).
So it’s getting a bit boring now. I’m thinking of trying some ready made small meals which can be ordered and delivered to the door.
Oh well, I have to sign off now to eat another supplement and then it’s scrambled egg again.
Bye for now!’