Sometimes Life is Hard to Swallow - Guest Blogging

Not a lot of people know the word Dysphagia.

The dictionary defines dysphagia as difficulty or discomfort swallowing as the symptom of a disease or condition. Dysphagia is perhaps the largest reason preventing the adequate nourishment of many people and can be life threatening.

I do some voluntary admin for Dysphagia Matters who aim to raise awareness of this and offer training courses to combat this.

They are launching their new blog 'Dysphagia Chronicles' to coincide with European Swallowing Awareness Day and I am their first guest blogger!

Please follow this link and have a read: Dysphagia Chronicles

also contact emma@dysphagiamatters.com for more information if you are interested in being a guest blogger.

Quality of Life

My close friends will know that I have had issues with my Care recently and I have had to have my number of agency calls and my care budget significantly increased.  This is no one’s fault and indeed, would have inevitably happened anyway.

However, it left me with two things.  A sense of not being in control of my life or anything at all (an extreme fear of mine!) and having to directly and openly assess what my quality of life is and what I need to maintain it at the level I want.

Quality of life (QOL) is the standard of health, comfort and happiness experienced by an individual.  This can be measured using many factors including physical health, family, education, employment, wealth, the environment, religion.  Social services produce an annual care plan to not only ensure that my basic physical needs are met, they also ask many questions in an attempt to quantify and record my QOL in accordance with their own agenda and using their own general criteria.

I am not going to say that this is wrong, I think this is a good way to begin assessing an individual.  A great starting point in figuring out someone’s needs and what must happen for that person to be happy.

My problem has been that my social services assessed QOL and my opinion of my QOL do not match.  Although general indicators can help point procedures in the correct direction, every person is an individual and must ultimately be treated as such.

So, what makes me happy? (not in order of importance though family and friends do come first!)

·         Family

·         Friends

·         Watching films (bring on the Hanx challenge!)

·         Reading (my Goodreads challenge)

·         Cross stitching

·         Dillon and Lily (tortoises)

·         Making my own decisions

·         Having a choice

·         Watching The Walking Dead

Though some people might relate to some of the items on my list, this list is personal to me.  I also have to take into account my actual abilities.

I feel that my care plan should have the ultimate goal of helping me achieve a satisfactory, if not perfect, QOL (as well as the basic needs part obvs!).

I am quite lucky because even though it was stressful dealing with all the red tape and filling in stupid forms and at one point being completely stubborn, I was listened too and despite the changes in my routine I can now continue doing the things I want, when I want to (sort of)!!

I guess the moral of this story is there is only one person who knows how to make you happy.  That person is you.

Don’t ever be afraid to argue for the things that are important to you.