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Month: February 2018

The Emotional Part of Chronic Illness

The Emotional Part of Chronic Illness

I wasn’t going to post this week, I didn’t even want to write. This is the part we all want to hide. When we feel like nobody will get it and there’s no way to explain it accurately. I could of stayed away, just disappeared till my mind didn’t feel so frazzled and my body didn’t feel broken. Let’s be honest here though, when will that be? When will I feel whole? Where feeling like I am half myself and half zombie wasn’t the normal. I say to myself ok, you’re having a setback, but in truth there’s always some type of something to deal with. This is the part no one with chronic illness wants others to see.

I promise I am trying my best. I tell myself this is okay, that I will progress even if it’s slowly. The hardest days for me aren’t the days I deal with physical pain, it’s the ones where my mind betrays me. The times I feel lonely and sad. Dealing with constant pain is a continuous battle. We fight to love our broken bodies, to smile through the pain. We want others to see us as people and not pity us for our circumstance. The pain doesn’t go away but at least we have our brain, our thoughts, our ability to overcome it because we are mentally “strong”.

What does that even mean? I feel weaker than I ever have. I am annoyed because I am laid out most days, hoping to at least have enough energy to interact with my family, and smile or laugh. I get pissed because I feel so alone. Desperate for people to want to be here but at the same time not wanting anything to do with anyone. Feeling the guilt of putting everything on my husband and to top it off I can’t even deal with stress. I mean what kind of wife am I if I can’t even be there for his needs. I never thought I’d be this person, I am not talking about the illness’s, it’s the mental part.

I am strong, I am capable, I am independent, I am….. none of those things anymore. It’s all been stripped away from me. I have been forced to ask for help, to be vulnerable, to accept the days I can’t do anything. Does anyone ever get use to this or will this always be a battle? There’s a reason this is the side we don’t want anyone to see…we hardly understand it ourselves.

The fears, regrets, and anger that comes with all this is debilitating. I have my days,weeks, or months where I just don’t want to deal with another day of not being “strong”.  I promise myself I’ll make tomorrow better. That there’s a silver lining to any of my worse days. That I know there’s other people going through so much worse. That I WILL get through this. I have to pace myself and remember there is very much a mental aspect to chronic pain. It’s okay to have weak days, the days that hurt to think or feel love.

I realize the power is what you do with those days, how we forge on, what we choose to do next. So, yes I have been having a not so good few weeks, and yes I got caught in the turmoil, but today I choose to not hide from it anymore. There’s no shame in this. Not for any of us. I refuse to let this determine how I value who I am. I will allow myself to feel all the ways I need to so I can recover, grow, and accept my normal.

 

 

***Written freehand with limited edits, Please be kind, Thank you***

The Many Faces of Chronic Illness

The Many Faces of Chronic Illness

People who suffer from chronic pain often have many faces they portray. As much as we don’t want chronic illness to dictate our life, it does. From what our daily plans are to how we interact with others. There’s so many feelings that come with the chaos of never-ending pain. Sometimes I am able to hold it all together and other times there is no way to hide it. When I was thinking about this I realized there are several faces of chronic illness. I think many of us dealing with Lupus, Ehlers Danlos, Fibromyalgia and other illnesses can agree that there’s never a day that we don’t feel one of these ways.

Lupus, EDS, & Fibro  changed everything. Here are some of the faces I wear:

  • The faking it ’till I make it face
  • The WTF is this now face
  • The I’m too tired to move face
  • The everything hurts face
  • The do they really get it face
  • The I’m NOT crazy face
  • The damn! another Dr’s visit face
  • The will I ever function face
  • The I’m trying to positive although I feel like sh*t face
  • The shut up…leave me alone face
  • The will I ever wake up not in pain face
  • The I wish I could be more help face
  • The smile through the pain face
  • The I’ll do it anyway and pay for it later face
  • The I hope they can’t tell how much I’m hurting face
  • The I’m jealous you’re abled-bodied face
  • The I’d give anything to dance, run, jump, walk face
  • The I’m going to get through this face
  • The I am determined to get better face
  • The thank you for loving me at my most vulnerable face

I know this list can come off as pessimistic or negative but it is our reality. As much a we would like to focus on the good there are regular moments of despair. I get very frustrated and angry at my lack of control. Although I can reel myself back in and get to a positive place it doesn’t negate the many faces of chronic illness. The ups, downs, and in betweens cause many of us to feel crazy. Through it all we know tomorrow will be another day, and though we may be in pain, we will fight for our chance at that one good semi-pain free day.

 

 

***Written freehand with limited edits, Please be kind, Thank you***