This week Emma talks about what Quality of Life means to someone living with MS and what it means to be brave.
I love tea, in particular ‘Irish’ tea. From morning to late afternoon a cup of that golden-brown liquid deliciousness is usually enough to cheer me up and set me ‘right’ even if just for a little time. I like mine fairly strong with almond milk (dairy-free) or black with a slice of lemon. In many ways, tea is the best social lubricant at any event, never mind what people say about alcohol.
But not everyone likes strong tea with lemon. You might like weaker tea with sugar, prefer herbal tea or, like so many people, you just don’t like tea at all. You choose something else because it suits you better. So it is when we try to measure Quality of Life, it’s the same but different for all yet…. What does it mean when we’re all coming from very different experiences, cultures, backgrounds, diagnoses and MS symptoms?
In the 1940s Abraham Maslow, discussed in a psychology research paper, theories of human motivation that have been popularised by a pyramid shape with the most basic needs at the bottom. Once the first needs were met, a person would then be free to consider the second and so on.
- Physiological Needs- air, food, water, sex
- Safety Needs - shelter, security, freedom from fear
- Love and Belongingness Needs - friendship, intimacy, affection, love from family
- Esteem Needs- confidence, achievement, independence, self-respect, respect from others
- Self-actualisation- realising personal potential, to become the person you would be
Quality of Life (QoL) refers to the general well-being of people and society. It has many facets to be considered including environment we live in, our emotional, physical and mental health, education and sense of social belonging.
Multiple sclerosis messes up every theory. My life was turned upside down and measurements fell by the wayside. Problems in life, problems dealing with the symptoms, problem reactions, problems with others, problems with relationships, we think we are our own problem and we daren’t imagine that anything different, something better, is possible.
We fluctuate between apathy to life to compassion for ourselves. Relationships MS takes hold of a person and scares the rest of what was the ‘self’ into hiding. How do we ever get back from that? It doesn’t change by accident, it does take a lot of time and it can be exhausting. But there is no other option if we are to have a good Quality of Life based on our own personal design.
Yes, MS was once the very worst thing that could ever happen to me. What I’ve discovered is that the only way to have any good/great Quality of Life is to have a sense of ‘self-worth’. It means confidence, being focused on what I need to thrive, respecting myself and others and not being distracted from being the best version of myself.
A friend, who has since passed away, used to knock joy out of every moment. No matter what, he’d have me cracking up from the moment I collected him and his wheelchair accessible van to go to a branch meeting, to when we parted. He was never afraid to be afraid, to be happy. He reminded me to be brave. Viktor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. Now, where’s my tea?
Let’s talk more about this and other MS/life stuff. Join me on Twitter or http://republicofemma.wordpress.com
Add new comment