What Would Rheumatoid Arthritis Awareness Mean? This is the subject I am to write about for Rheumatoid Arthritis Warrior's Blog Carnival on Rheumatoid Awareness.
Did you know that there is an Rheumatoid Awareness Day? It's February 2, 2014.
I want to start by saying that, in general, when we are standing in a room filled with other's, it is guaranteed that many are battling...something. And I am sure that many desire to have some light shed on their something. I can only speak of my something. And it is Rheumatoid Arthritis.
I would want others to be aware that people with RA/RD are fighting every day to function to the best of their ability, just like anyone else with better understood/researched/talked about diseases.
Also, sometimes, RA/RD comes seemingly out of nowhere and whips the rug out from under you, your family...your entire life. And even at it's eventual diagnosis and treatment, things are slow to recover...and never actually recover to the point your life was at when you were standing happily on that rug before (yes, I know this is redundant) IT WAS WHIPPED OUT FROM UNDER YOU! Everything changes. And rarely for the better. You suddenly find yourself having to adjust to being dependent on others for the simplest of things. You find that your home has many obstacles that threaten your independence. For me, I feel like I lost my identity. I was the do-er. I worked hard and was able to accomplish many things in a day, and then suddenly, taking a shower became a monumental task.
RA/RD can be all-consuming for the patient and the family dealing with it. It is an life-changing event. Period. Be supportive, not judgemental and never assume that you know everything about the disease or how it or the drugs affects someone. Because honestly, you have no idea. RA is different for everyone, affects everyone in a different way and not all patients respond the same to the medications. Those damn commercials are so misleading.
I think, in the end, what I would like most to come out of Rheumatoid Awareness Day would be for people to recognize the day and if they know someone who is living with RA, that they take a bit of time to learn about what it means to have Rheumatoid Arthritis. And how to be supportive. The last thing I ever want is for someone to feel bad for me. What I really desire is to be understood. And instead of getting upset with me for doing to much or not enough, realize that I am trying to find a balance, again. Honestly, it is no longer the disease hurts, it is the people that don't understand it. There isn't any medication for that.
Showing posts with label acceptance. Show all posts
Showing posts with label acceptance. Show all posts
Wednesday, January 15, 2014
Tuesday, March 6, 2012
Acceptance & Change
Moving forward. No looking back, no more wishing for what was. Learning to appreciate what is. A lot has changed over the years. When I look in the mirror, the person I see is entirely different in so many ways. I am no longer thin. I no longer have the ability to move the way I used to. I could choose to look at everything as what I can't do or don't look like any longer. But that would just be silly. And downright destructive.
Not too long ago I was completely overwhelmed with all that was happening. I've been scared, angry, frustrated, in complete denial and simply defeated. Or so I thought. Momentary insanity. I am not easily defeated. I have always been a fighter. The problem is, I had been fighting myself and not even knowing it. I was so determined to keep on as though nothing had changed; even though it had, drastically. It took me to run myself right into the ground to understand how utterly stupid I had been. And even though the words had been spoken to me several (several, several, several!) times before, I was finally ready to listen. It was strange. I was better than the year prior, but somehow, beyond weak. Acceptance had truly set in. It was time to slow down and possibly stop for a bit. The words were said differently by many, including my doctor, but they translated to the same message to me. "You have never given yourself time to get better." And like I said before, these words were spoken many times to me. Yet, I never heard them.
If it is expected of me, I will deliver. I hadn't been honest with myself and many others. I wanted to keep going like nothing had changed. No resting, no excuses. No disappointment. The results weren't what I would have liked.
Pushing myself didn't make me any stronger. It only made me more sick. Sick. That is what the general feeling is. Pushing and resisting what my body was trying to tell me, took away from what I wanted to give to my family. Me. I wanted to be with them. Not just physically present, but mentally. And really there. Masking the amount of pain I deal with daily is an exhausting chore. I can overcome it and rise above it most of the time. I reserve pain medication for bedtime only so I can be alert during the day. This does not mean that I am not in pain during the day. Good God, it doesn't mean that at all. I spend a considerable amount of time rising above and sucking it up. It is a preoccupation of the head. Playing a game of SORRY, can be hard for me. But I do it.
Things are getting easier. The infusions seem to be doing something, which is more than those painful (but worth it, if they had worked) injections. It is hard to say how much of this has to do with the changes we have put in place. Now, our home is "shut-down" by 6pm. That is when my workday ends. Period. "I am sorry, but I cannot..." are new words added to my vocabulary. I am not a napper, but when I feel the exhaustion setting in, I settle down and enjoy this new thing in our home, called cable tv. And the acceptance. It doesn't come all at once, but rather in waves. And my acceptance by no means, is defeat. To the contrary. I am learning that it can make a person stronger.
Today, I can honestly say that I feel more like myself than I have in a long time. Even though yesterday was a rough day, I can still say that. That says so much. Acceptance means making changes. I am learning to look forward to them instead of resisting it. It helps that my husband is on-board to. He had been having some of the same resist issues as me. That was hard for me. Mostly because, no one is harder on me, than I am. So when he was initially resisting the idea of moving the laundry room upstairs, it bothered me. Because I was right in my assumption. He thought I would get angry enough and will myself to be able to use the stairs to get to the laundry more often. Because, that is who I am. I felt I was disappointing him. We both needed to accept some things. It is hard for me to be less independent and feel more of a burden.
In the end, he is all for it. And more. Our bathroom needs a new shower. While I am adamant about not having one of those tubs for people with arthritis, it will be a safe place. Even our bedroom is going to have some change. In color. I spent so much time in there, sick, that being in there makes me uncomfortable. The early years of my OCD, the idea of change paralyzed me. Now, it is what I need to survive. Kinda funny how that worked out.
A year ago, I would have never asked for or accepted these changes. I would have been angry at the suggestion of them. Because it would have meant I would not be better or that I wasn't strong enough. I understand now that is far from the truth. I am capable of doing everything I put my mind too. Even if it means accepting help and change.
First, get stronger. Second, obliterate some LBS! I am coming back!
Not too long ago I was completely overwhelmed with all that was happening. I've been scared, angry, frustrated, in complete denial and simply defeated. Or so I thought. Momentary insanity. I am not easily defeated. I have always been a fighter. The problem is, I had been fighting myself and not even knowing it. I was so determined to keep on as though nothing had changed; even though it had, drastically. It took me to run myself right into the ground to understand how utterly stupid I had been. And even though the words had been spoken to me several (several, several, several!) times before, I was finally ready to listen. It was strange. I was better than the year prior, but somehow, beyond weak. Acceptance had truly set in. It was time to slow down and possibly stop for a bit. The words were said differently by many, including my doctor, but they translated to the same message to me. "You have never given yourself time to get better." And like I said before, these words were spoken many times to me. Yet, I never heard them.
If it is expected of me, I will deliver. I hadn't been honest with myself and many others. I wanted to keep going like nothing had changed. No resting, no excuses. No disappointment. The results weren't what I would have liked.
Pushing myself didn't make me any stronger. It only made me more sick. Sick. That is what the general feeling is. Pushing and resisting what my body was trying to tell me, took away from what I wanted to give to my family. Me. I wanted to be with them. Not just physically present, but mentally. And really there. Masking the amount of pain I deal with daily is an exhausting chore. I can overcome it and rise above it most of the time. I reserve pain medication for bedtime only so I can be alert during the day. This does not mean that I am not in pain during the day. Good God, it doesn't mean that at all. I spend a considerable amount of time rising above and sucking it up. It is a preoccupation of the head. Playing a game of SORRY, can be hard for me. But I do it.
Things are getting easier. The infusions seem to be doing something, which is more than those painful (but worth it, if they had worked) injections. It is hard to say how much of this has to do with the changes we have put in place. Now, our home is "shut-down" by 6pm. That is when my workday ends. Period. "I am sorry, but I cannot..." are new words added to my vocabulary. I am not a napper, but when I feel the exhaustion setting in, I settle down and enjoy this new thing in our home, called cable tv. And the acceptance. It doesn't come all at once, but rather in waves. And my acceptance by no means, is defeat. To the contrary. I am learning that it can make a person stronger.
Today, I can honestly say that I feel more like myself than I have in a long time. Even though yesterday was a rough day, I can still say that. That says so much. Acceptance means making changes. I am learning to look forward to them instead of resisting it. It helps that my husband is on-board to. He had been having some of the same resist issues as me. That was hard for me. Mostly because, no one is harder on me, than I am. So when he was initially resisting the idea of moving the laundry room upstairs, it bothered me. Because I was right in my assumption. He thought I would get angry enough and will myself to be able to use the stairs to get to the laundry more often. Because, that is who I am. I felt I was disappointing him. We both needed to accept some things. It is hard for me to be less independent and feel more of a burden.
In the end, he is all for it. And more. Our bathroom needs a new shower. While I am adamant about not having one of those tubs for people with arthritis, it will be a safe place. Even our bedroom is going to have some change. In color. I spent so much time in there, sick, that being in there makes me uncomfortable. The early years of my OCD, the idea of change paralyzed me. Now, it is what I need to survive. Kinda funny how that worked out.
A year ago, I would have never asked for or accepted these changes. I would have been angry at the suggestion of them. Because it would have meant I would not be better or that I wasn't strong enough. I understand now that is far from the truth. I am capable of doing everything I put my mind too. Even if it means accepting help and change.
First, get stronger. Second, obliterate some LBS! I am coming back!
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