Today I Feel

The topic is “Today I Feel....”. Day 3of this FND challenge.

That is a question I get asked so often and I struggle to answer it every time. How do you feel today? It’s not a simple question because it depends who is asking it or do they genuinely mean it? Is it just about my mental state or my physical? How much have they read on my page? Or do they not know ? Do I tell them everything or just say “I’m fine”.

If I say too little I am just shoving things down but say to much then it seems like I'm complaining.

That mess alone makes explaining feelings so difficult but then you throw in the stigma. Stigma of certain symptoms and diagnoses. Judgement of chronic illness and pain. It makes everything very uncomfortable so I noticed when I get asked that I say I'm fine usually or I seem to ramble. I talk with little eye contact, an with a shy voice. Usually not making sense. I don’t know why.... it’s maybe because I am flustered, with how I feel cause its complicated an so many factors.

I shouldn’t be but that’s because of the stigma that has been put on me and that I have to carry with me. On top of my disability..

Here is just a clearer picture of what’s happening to us and why answering that simple little question might turn me into a one of the seven dwarves ..... specifically bashful.

“Many patients with FND are not even told the name of their disorder. Sometimes patients are told what they do not have, or they are told their symptoms are due to stress. This disorder has a name. this Disorder has a name, Functional Neurological Disorder.

Do you remember in the Harry Potter books that most people refused to say the name of Voldemort? Harry wasn’t afraid to say it and he was able to conquer the enemy. There is power in speaking a name. But its also a very miss understood Disorder an not alot of research has been done but there starting to. there is so many un knowns with this disorder it's hard to share with people but that's what this month is about. sharing an education are friends, family, an stranger about are Disorder.

Too often, once a patient has been diagnosed with FND, they are treated with suspicion whenever they are faced with a new medical issue. Patients with FND, like all humans, can develop other illnesses. most patients with FND have other illnesses an medical condition!

Often patients with FND are thought to be attention-seeking. Sometimes families are instructed to ignore and help to get them to take there mind off what's going with them, "patient symptoms".

That’s stigma for you. This is why I build awareness though. Part of this process is also me breaking down some walls. Breaking down the stigma. Having this open conversation and allowing people to see inside my world. I want you to ask questions. There are no stupid questions. I am also trying to get past this scary concept of whatever I’m battling. So I can actually answer this silly little question. Without being ashamed or shy or bashful or whatever that made I go into. The stigma weighs heavy on my heart When asked that but I’ll try my best to answer it.!

So let me answer this “simple” question.

Today I feel...

Today I feel like it is a not so good day. Most days I wake up and I can tell if it’s going to be a good day or bad day. First off I know this because it depends on what time I went to bed. Secondly I can feel the status of my brain. It’s like looking at the energy bar on your phone. You either plugged it in overnight or you didn’t. I have a bit of a headache, I definitely feel more tired than usual but less tired then I have this week. I have internal an external tremors and for some reason they have been going on an off this last week.This will definitely be an interesting day. Im always cold no matter if I am sitting under one blanket or ten. Today is no different. I feel like I want to do something crafty today or something new . I’ll let my brain be the lead on that one and see where it goes! Gotta start trying new things more. Who knows one of these nice warm days this week I might try to go on a walk or roll around. I can’t stop my symptoms from letting me move forward.

Ok that wasn’t so bad....