There is a really good article on The Patient Experience website. I want to share part of it with you.
“We all know that Multiple Sclerosis (MS) is a disabling set of symptoms; some of us know this better than others. People who have no experience of MS often do not realize the impact these symptoms can have on people’s lives. People with MS will either disappear from public consciousness or be mistaken for someone displaying erratic behavior, and there is ample evidence to show how people using wheelchairs are either ignored or talked down to.
One of the difficulties for the ‘public’ to understand MS is that people display a variety of symptoms which do not manifest in all in equal measure, so some people display very few visible symptoms; others are severely disabled within a few years and the range of disabling symptoms range from physical to cognitive and emotional. It is difficult for people who do not suffer from cognitive impairment to understand the impact this can have on the life of the person afflicted by it. This article aims illustrates what it is like to live with constant ‘brain fog’, sometimes known as ‘cog fog’ but medically described as cognitive function impairment.
Loss of memory is often one of the first sign that something is wrong, but there are others and different people may have none, one or many of these problems. If you are unlucky enough to suffer a range of cognitive function impairment the impact on your life and that of those who know you, can be devastating. In spite of being an intelligent person you might lose the ability to perform complex tasks such as map reading, mathematical calculations and list making for example. You might have problems multitasking, or planning and executing a simple project such as cooking a meal. But the effects of ‘brain fog’ do not stop there: people can have difficulty expressing their thoughts and emotions, meandering around a subject, struggling to find the correct words to express themselves. They may constantly repeat themselves either through faulty memory or uncertainty about how clearly they communicated. Often repeating the same things as a way of checking their thoughts. They describe their distress at not being able to make a decision; they talk about not being able to formulate their thoughts, of living in a kind of fog that makes it difficult to ‘see’ the problem and consequently the solutions to problems. Sometimes the confounding problem might be a simple question such as: “would you like a cup of tea?”
People with ‘brain fog’ can also be hypersensitive to environmental factors such as light, heat and sound. Hypersensitivity can make it difficult to cope with irritants that others cope with easily. Bright lights and sudden noises, small irritants cause disproportionate reactions which appear irrational and unwarranted to onlookers. To understand communications, problems and propositions as well as learning new tasks takes longer and may require many repetitions of the process before it is mastered.
At the same time people suffering from ‘brain fog’ can lose visual perception which has a double effect: they can appear clumsy because they will not see obstacles, especially small ones like wires and protruding shelves for example. But poor visual perception also makes them unaware of body language and other clues that inform about other people’s responses. This collection of symptoms has a profound effect on social interaction with friends and family.
People who suffer from cognitive function impairment are subject to different but as devastating disadvantages as a person with physical disabilities because employers, family and friends may perceive the sufferer as a difficult or incompetent person whereas their behavior is something they cannot help. These hidden symptoms lead to low self-esteem, depression, and a devastated and lonely life.”
I know this seems like a long blog for me, but this is a very important and often misunderstood part of what most of us with Ms experience. This is not a once in a while thing………….it is an everyday thing. What seems like a normal, average thing to do becomes a major accomplishment.
Sometimes it is all I can do to remember how to comb my hair and brush my teeth. I have sat on the bed in the morning and just looked at my shoes and socks and wondered what to do with them. Not every day, but many days. I try to write this blog each day to keep my mind working, but some days it is all I can do to make a complete sentence.
I know most people relate these types of mental functions as having to do with Alzheimer’s or dementia in older adults. To a degree, that is true. But there are countless numbers of MS patients in their 20’s and up who go through these same things. It makes for some very frustrating days for all concerned.Brain Fog is a fairly good name for what this involves. For me, the mental thought process is more like blown away….…maybe Hurricane MS seems like a more appropriate name!!