Tuesday, 12 February 2019

The Actress i have become.

Okay here it comes, i have become the actress in social events. No this is not a choice of mine because i like to be up front and say the truth. I am from Rotterdam,Netherlands, and they are very direct . Although i grew up in Australia i still carry some Dutch in me and that is honest and direct and taking no bullshit.

 So how can it be that i am acting? Not sure really, besides that it seems easier then the truth sometimes.
 I find myself at another gala ,yes another one!!! I really do not like these gala's but here i am in London at a gala. I must say this one was very casual. I attend these gala's with my husband and this one was work related.

 Having MS there are lots of things to take in consideration at these events. Do i need to stand too long, am i close to an exist for when my anxiety sets in, due to the overwhelming feeling of crowds and sometimes the heat. My lovely husband always makes sure there is a seat available for me and  some water. Cognitive issues are usually a problem on these nights because i am tired, overwhelmed by too many noises and my brain goes on strike. On top of this my memory is terrible thanks to one of the MS symptoms of memorry loss. Lucky this night i had no issues with my speech and the flow of the conversation. What i did have issues with was remembering people or events that occurred a few years back. I would meet people and they would say " great to see you" it has been such a long time can you remember when we met at so and so"?? My answer to these were " oh yes, how are you. Great to see you again. Yes i remember last time we met although a long time ago".
Reality: I cannot remember the person. I cannot remember the event. And i cannot remember from years ago. I am sorry to those i cannot remember but my MS has caused me to forget things due to damage. I am also sorry i am not standing up talking to you. No i am not tired from shopping or just tired, i  am in pain and i cannot stand up on my feet for too long. Excuse me if i seem rude by not joining in the conversation but my brain is tired and i can't seem to follow the conversation very well.

 This is my life but yet i find myself acting as if i am a healthy person. Why? Because it's easier .
 A lot of people do not understand and even if they did, do  you really bring this up at a work gala???

 So as i sat down i hear my husband say" yes she has pain in her leg. I followed this lie as it seemed the most easy option. Am i really going to tell everyone that i have MS during this event,No. That would be awkward and a lot of energy telling everyone. At the same time i hate it!!! To be honest  by saying the truth, Yes i have MS!! It gives awareness of the disease.

 I am certainly not the only person with MS acting or hiding her or his disease. It's ashame it has become this way.

 I may look like i am holding up pretty fine, but i am struggling acting to be normal.
Here are some invisible signs that you may not see why i am struggling.

I am holding my arm or wrist due to spasticity.
I say " oh yeah" a lot because i really don't know what you are talking about.
No i don't drink because i do not like it. Truth is i don't because it makes my symptoms worse.
I sometimes shake your hand with my left hand because i have pain in my right hand.
No sorry i did not see you because my vision is not always good due to light and less vision in my right eye.
I put my drinking glass down sometimes because my hand has tremors.
I need  directions to the toilet because my orientation is not so good, and yes often get lost finding my way back.
I try to eat with my knife and fork except when it becomes too difficult and i use my hands. My hand hurts cutting whatever i need to cut.
You will not see me staying long, if the music is too loud. The music gives me pain in my ears. I also cannot focus on two things and by adding loud music i feel lost and confused.

These are just a few things that make my life challenging but i will keep fighting and challenge these situations and for now will be the actress when needed.

Please follow :)

Best
Mas x

2 comments:

Judy Oz said...

Oh boy. Yes! Yes! I too have had to act "normal" for years. I am naturally loud, opinionated, outspoken, gregarious. But I too have had to pretend I know people and remember events when I am lying through my teeth. I always wait till someone else says a name before I use it. It is a tiring game. But I was an actress for years so I put it to use daily.
I have just found your blogs and and think you're a breath of fresh air. Look forward to reading more...Jude. 🤪

Mascha blogger said...

Well that will certainly help if you were an actress!!! Wow!!! That must have been fun aa a job.
It’s definitely tiring acting especially if you are not an actress but I think it also gives the wrong message. More and more i think telling the truthmight be better. Definitely gives awareness. Maybe i can say it casually like “ hey i have MS” kind if way? ����

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