invisible

It's an odd mixture: wanting to be seen and heard, but also wanting to just blend in with the crowd.

You see, when you look 'normal,' people don't understand. You get so many questions: Why do you wear a mask? Why do you need to rest? What's that for? Why do you go to the doctor so much? Why do you take so much medicine? The list goes on and on and it feels as though you have to answer all the questions. It’s embarrassing when you don’t want the attention, to be singled out. You just want to look and be ‘normal.’

Then there’s the other questions: Are you really tired? Are you really not feeling well? Do you really need all those doctors? You seem fine; what’s wrong?

What’s wrong? What’s WRONG?! How do I even begin to explain it to you?

See, I’m medically complex. I need about 10 minutes to explain my history to a specialist. To you? Give me at least an hour. I promise you’ll probably check out after the first two minutes though.

See, I look ‘normal.’ You can’t see what’s going on inside of me. You expect me to be normal and it’s easier for you to handle me if I am. So, when you ask and I try to explain, you’ll tune me out because it’s just too much. I know you mean well, but I also know you’d rather not know.

It’s hard to be invisible.

See, I’m so used to being sick that I don’t know what being healthy feels like anymore. And, I’m only 8.

See, I sleep 11-12 hours and still feel tired all day.

See, I have a new infection every month and about 4-6 viruses a month as well. You probably don’t even notice them though.

See, I cough every morning and night. I cry because I’m so exhausted when I get home from school. I choke on my own mucus and cough up big gobs of it. My chest hurts from inflammation. My sinuses are inflamed. My teeth, ears, and head hurt from the pressure. I lose interest in food and often can’t eat because of tooth pain. I’m not gaining weight. My joints are hypermobile so I fatigue quicker than you. I’m so restless in my sleep that I’m never well rested. My legs go numb from sitting in one spot. I’m on an antibiotic that tastes awful for 2 weeks every month. And, I just want to be like you.

So, next time you go to ask, maybe don’t. If I’m brave enough to talk, maybe listen. Because it’s hard to be me.

And if you see me smiling, active, and telling you it’s all okay. It’s okay to believe my mask. But, please remember, you never know the weight that someone else is carrying.

It’s hard to be seen and yet, so hard to be invisible.#ChronicIllness #Rare #immunodeficient #ChronicFatigue #walkamileinmyshoes #invisible

#Fatigue #Pain #Depression #Anxiety #invisible #MentalHealth

The mental pain of neurological illness is exhaustive and physically draining leading to chronic fatigue and putting your body in a safe mode to where it can do nothing but shut down to survive.

This pain is so severe and happens so fast there is no time to prepare for it or explain it to anyone on time for help.

Your body goes into full panic mode, looking for an outlet to get relief from all the chaos it is experiencing.

The problem is all the signals are being interrupted, stopped and or blocked from helping because they need healthy nerves to do so.

The nerves they are trying to use are severely damaged, partially working, crossed over and doing something opposite of what your brain thinks they should be doing, or some are just completely burnt out and doing nothing.

An example would be trying to use a phone's land line and the lines are crossed, the number you are calling for help is correct, but you are getting a stranger on the other end who has no clue who you are or what to do for you.

Or calling that same number for crucial help but all you keep getting is a busy signal because the other line is off the hook for whatever reason.

All this frenzy from broken nerves and painful muscle spasms sends your anxiety to a new high and causes a bird's nest of new worries and thoughts.

Now your body is exhausted (to say the least.) Your fatigue is a flashing red light, a warning that your body is overloaded with pain and at its breaking point.

Chronic fatigue sets in and shuts you down, it does not matter where you are or what you were doing you shut down.

Your body cannot move one more inch or blink an eye at that. You cannot speak or think of a word, and you are deaf to your surroundings, not hearing a word or feeling a thing.

The fatigue has put you in a deep sleep to rebuild some strength and energy while protecting you and saving your life.

Although no one wants fatigue it is really like your body's own saving grace protecting you from more severe brain damage and or physical damage.

In the Silence Of My Tears
Sometimes when I lay in the midst of the night
I can see the darkest corners of my jagged mind
All the memories from demons past and present
come flooding over me
Nights turn to days … and … days turn to nights
As I lay in the silent embers of my burning tears
He lays next to me, Still I am alone,
in the midst of the night as I silently cry
Why must these demons haunt me eternally,
why am I alone in my tears
If all time is eternally present, how can I escape my demons past
How can I reach my future without maddening frustration,
without silent tears
With time past always in my presence
How can I escape the cold darkness of the aloneness
My sadness deepens with each tear that falls on deaf ears
Still he hears me not, in the stillness of the silence
My past and present collide into one
never ending nightmare of isolation
Is this my destiny
Sometimes when I lay in the midst of the night
I can see the darkest corners of my jagged mind
I scream out in silence through my tear stained face
See me, hear me, I am not invisible
As I lay in the silence of my tears
Wildfire 9/19/20

I start to get anxious just thinking about it. It should be something so simple, but it’s not. The careful planning, assessing and attention to details is vital. What’s happening before this? What’s coming up in the week following? It’s not a question of if she’ll get run down. It’s not a question of if she’ll get sick. It’s a question of when. And…is that birthday party, week at day camp, sporting event, etc actually worth it?

But here’s one of the worst parts: you won’t get the weight of our decision. You won’t know why we couldn’t play that night or why we skipped the game. Because, the fact is, you don’t understand that she’s sick. Not really.

You know we have the appointments. You know we get blood draws. You even know we spend nights out of town to see our doctors. But, you don’t understand. Your kids get sick, too. Your kids also get tired and emotional. Plus, she looks just fine.

She looks fine. But, that’s one of her superpowers: invisibility. She saves it for us. She keeps it closely guarded. If you ask her how she’s feeling, she’ll say, “Good.”

What you didn’t see was waking up and complaining she was tired. What you didn’t see was the terror in her eyes when she had blood in her stool- again. What you didn’t see was her complaining her belly hurt, or worse- getting sick. What you didn’t see was her retreat upstairs to lay down instead of play. You didn’t see her struggle at school because she “just couldn’t think “ or she’s “just not feeling herself.” The simplest questions tripping her up. What you didn’t see was her breaking down and crying over and over again from 4 pm on because she's so tired that she’s an emotional wreck. You didn’t see the multiple medications she’ takes to help her feel ‘normal.’ You didn’t see her as she got yet another a fever, yet another antibiotic, yet another doctor visit. And, you didn’t see her sleep a full 12 hours just to get up and do it again.

She has a superpower of invisibility. You may not understand why we’re not coming, but I promise we would be there if we could.

#Rare #PID #Fatigue #invisible #chronic #medicalmom

I'm feeling rather let down and ignored in some places recently. It appears to me that when people just have something wrong with them.

I'm also feeling let down by the mighty group in general. I feel like I'm being ignored and let down in places. People will just join and get florets of messages and love, but when people actually talk on this it's like nothing is actually going in.

It's just another social media where people can talk about their problems and not be ignored. Well thanks mighty. I thought you were different.
This really use to help me, but now I feel like no one can help me.
#depresssd as fuck #invisible #shove your hashtags up your ass.

I am so lost right now. I feel so much pain. I'm so lonely that I can't take it anymore. Please find it your heart to help me. All I have ever wanted was to be liked. I just want someone to hug me and say it will be ok. Please............ 😭#ok #Depression #alone #invisible #noonelikesme

Shared coffee ☕ with a neighbor and her service 🐕‍🦺 BEAR. Went for a beautiful walk to get some fresh air and see things in the daylight. Last weekend of good daylight.
Went to my favorite non dairy treat shop and got some yummy dreamy chocolate chip fudge ice cream. Being non dairy, treats that taste good are rare, so I gave myself a treat today.
#chronic pain #Distract me #breast cancer survivor, seasonal affective, #Depression #Fibromyalgia , #positive thought of the Day, self care, #Anxiety , #Forgotten ,#invisible illness,

I want to thank all the mighties that have wished me Happy Birthday 🎁🎉,!
Signing off mighties