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Community Voices

Invisibility Is (not always) A Superpower

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

Community Voices

Creativity is Key

<p>Creativity is Key</p>
4 people are talking about this
Community Voices

Reshaping my beliefs about my "brokenness"

<p>Reshaping my beliefs about my "brokenness"</p>
9 people are talking about this
Community Voices
Community Voices

How honest are you about your health at work?

<p>How honest are you about your health at work?</p>
9 people are talking about this
Community Voices

Emotional Numbness again

I'm almost 2 weeks in this state of emotional numbness . I don't care about anything ,things that make me happy before are not joyful and just an automatic task . I love music ,but now , I'm often annoyed and change the songs very often. I can still feel anger and even have tears or feel sad , but if something should make me happy .. I feel just nothing , but a hurt heart ,it's like with every emotion I feel a hurting ball were my heart is . Even worse today I saw something that make me normally very happy . I had the physical reaction ,but felt my heart squeezed very painfully and tears came into my eyes .

I want to feel love for life again . It's actually not new for me to walk like a zombie through life . With no feelings except pain ,anger and sadness, being empty inside. Faking smiles until it weighes you down . I had this for 18 years going ,no break . I came out of this . I really could enjoy things ,words had a positive feeling for me and I even felt a light within me when I sang songs . I had deep connections . It was getting better with my mental health . I want to get rid of this numbness . My whole mindset is like it's upside down . From trying to be positive and doing the best I can everyday to rock bottom hopelessness. It's like a spiral of negativity .
I'm still trying to do the things that got me out in the past . Like self-care , being good to yourself . I just always have problems with motivation due my conditions and now it's worse . Most of the time I don't want to move not even to the bathroom . I desperately want to feel something positive and joyful . #MentalHealth #emotionalnumbness #Depression #ChronicHeadaches #Fatigue

3 people are talking about this
Community Voices
Community Voices

Balance and Compromise

I find that I have to constantly compromise with myself just to stay balanced. For example, I have to find a career that I CAN do, rather than what I would genuinely love because of my POTS, anxiety, depression, and chronic fatigue. I can't do some of the things I used to do because it's physically and mentally too draining. I'm tired of needing to wear my compression stockings and monitoring how much water i drink. I wish I could just do whatever I want without having to compromise with myself. Making adaptations and accommodations feels like a chore rather than a positive thing, even though i should feel grateful that accommodations are more available nowadays. Im just frustrated and needed to vent. Can anyone relate? #Anxiety #Depression #MentalHealth #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Fatigue

8 people are talking about this
Community Voices

A horse and me🐎🤍

<p>A horse and me🐎🤍</p>
50 people are talking about this
Community Voices

After a busy morning with the kids and a meeting with my cpn which always drains me talking about my mental health. I felt the burnout after lunch time and my partner picked up the kids all I could do was rest which I constantly beat myself up for. I ate healthy all day and am determined to carry on. I need a way of keeping my energy levels up throughout the day, I hate that when the kids get back I’m always resting. I started on the chore or tidying my daughters room when they got back but could only manage a bit. I made them dinner which is always really rewarding for me to see them sit at the table nicely together and eat a meal I have cooked without any complaining. It’s probably something to do with how my therapist says I see everything with “perfection” glasses on and everything needs to go the way I think it should with the house. I started to get really tired, stressed and agitated which easily can lead to self harm. So I used opposite action and decided to make a really healthy salad to go alongside my dinner. My partner loves to do the cooking as normally I’m dealing with the kids or having to rest about that time. But it was really rewarding and I’m hoping to keep up the healthy eating today and possibly get in the kitchen this evening. Have a very busy day ahead of me today so let’s see how today goes.

3 people are talking about this