Day 3: RA/RD Blog: Disability

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Discuss your feelings about our position within the disabled community with variable disability.  How do you deal with limitations that are present some days and not others?

It’s a strange thing. One moment you’re seemingly okay and the next you’re in pain. You never know when you’re going to have a good day, a good few hours, or when pain and brain fog is going to kick in. You don’t know what part of your body is going to hurt and for how long. It’s enough to drive some mad, to depression, to anxiety, to God. 🙂

When I perceive I am going to have a good day or a good few hours, I start to do things I normally don’t do and sometimes I do them in a hurry just in case something swells or starts to hurt. A few weeks ago, I woke up feeling normal. I mean after I moved around, I still felt normal. I don’t know how to describe it, except feeling like I felt before RD. I didn’t know how long it would last so I started some intense cleaning of the kitchen, the downstairs bathroom and I made it to the living/den area before I began to lose stamina.

I deal with it as it comes. I no longer get angry. I do however, get upset sometimes. Especially, when it’s really something I want or need to do. I have to put it off or cancel. It’s hard to make plans, but I am a firm believer in making plans and following through. When I can’t follow through is when I am the most disappointed.

We also have to deal with people who may see us doing “regular things” or enjoying the life we have and question if we are really disabled. Disabled people have a right to enjoy their life, family, take vacations, shop, and do whatever they can on the level they can, when they can. You have no idea the things people go through in 24 hours.

~Nikki

Disability and Reality Head on Collisions

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If you have been following my blog, then you know I am real, honest, and sometimes raw about what I think and how I feel. I am not here for the shock value, I am here because I love people that are honest about their thoughts, feelings, etc. Honest, not rude or mean or nasty. Just the plain old truth. So let’s dive in.

I hate being disabled, but I am grateful that I won my case. I hated my last job, but I was grateful that I had one and it could provide some income. I wasn’t making much and that job was killing me on every level. Yesterday early in the evening I thought I was having some sort of breakdown. I was going down slowly and then boom! I was falling down a dark hole that seem to never end. I reached out for help to a friend that wasn’t available. I reached out to a professional associate, she answered and provided a rope to pull me back to ground. I realized AGAIN yesterday, just how being disabled can restrict, constrict, and confine you financially. It can halt your endeavors. It makes me angry. It makes me sad. It makes me fell worthless. It makes me irrational. It brings up things from the past and shoves them in your face. Sometimes, down your throat. I felt like I could not breathe yesterday. It was anxiety mounting up to a panic attack. And depression was hovering around like a drone.

Before this episode, I had an encounter with a relative. Then I discovered just how limited I was  because of my disability with an endeavor I was trying to start up with a friend. And there came these waves of tears in my eyes that I fought back. By the time I talked to my professional associate, I told her 1st of all, I am crying. Secondly, I am ashamed that I am crying. Crying in my childhood was often made fun of or pointed out by my mother. “She’s so sensitive. She will cry if you look at her.” I thought something was wrong with crying. I also didn’t think it was funny. So crying to me can sometimes bring up a need to apologize for crying. In essence, apologize for being sensitive and weak (according to society, some friends, and in relationships). I do know a good cry is cleansing.

Rules and regulations for disability are necessary. They keep most people from getting over on the system. However, for those of us that wish to do things to help ourselves, it’s often a challenge to figure out exactly what we can do. It’s also a shock sometimes to find out you can’t do certain things and therefore you can’t reap the benefits or joys of those things.

This morning my ground is shaky. But, I am still here. I am still fighting and coping with my thoughts and emotions. This is REAL life. This is a MOMENT that I have to work through. I am fragile in this state and I know I have to protect my mind.

“Weeping may endure for a night, but joy does come in the morning,” -Bible

I am really ready for morning.

~Nikki