Wednesday, January 2, 2013

Welcome to my world

I wake in the morning and lay in bed to wait for my joints to loosen.
I have Rheumatoid Arthritis

I sit up and I grab the pencil on the nightstand (because my hands are achy and stiff) and use the eraser to press the button for the alarm.
I have Rheumatoid Arthritis

I limp to my closet, because my knees are rubbing bone on bone, and get my clothes for the day and a towel for the shower.
I have Rheumatoid Arthritis

I jump in the shower and try to ignore the shoulder pain while I lift my arms to wash my hair.
I have Rheumatoid Arthritis

I get out of the shower and dry off without falling.
I have Rheumatoid Arthritis

Exhaustion already. I lay back down in bed to rest for five minutes.
I have Rheumatoid Arthritis

I get back up and use the hairdryer to dry my hair. My wrists are weak so whatever dries in the two minutes I can hold up the dryer is all I got.
I have Rheumatoid Arthritis

I brush my teeth with a special thick handled toothbrush so my fingers won't cramp.
I have Rheumatoid Arthritis

I brush my hair and let it air dry. Hairdryers are very heavy.
I have Rheumatoid Arthritis

I apply some make up so I can cover up the rashes I sometimes get.
I have Rheumatoid Arthritis

I lay on the bed to rest because I am exhausted already.
I have Rheumatoid Arthritis

I sit up and put my jeans on. I can't stand and do it because of the knee weakness and pain.
I have Rheumatoid Arthritis

It's a struggle to put my bra on because I have to put in on backwards so I can work the clasp then turn the whole thing aroung.
I have Rheumatoid Arthritis

I slip on my shoes and it takes me about 3 tries per shoe to get them tied.
I have Rheumatoid Arthritis

I think you get the idea how many times I am reminded each day that there is no escape from this disease. Not that I want to always be thinking about RA. It's hard to get it completely out of my head. Every thing I do takes an extra few minutes. Those minutes add up to energy used. Rationing my energy is an everyday struggle that I just recently have gotten a handle on. If I go out to physical therapy and to lunch one day then I have to go home and rest so I can be alert enough to spend time with Joe and Julia that night. Knowing your body and your limits is key. Knowing what you can handle and not overbooking yourself is important so you can be the wife/husband or the mom/dad you need to be. I am fortunate that I don't work anymore and my husband supports the household. I can spend the day doing what I need to do to get my energy up so when they come home from school and work I am present in the moments.

It's a constant struggle for people with RA to get their loved ones to understand what they are going through. Why they are so exhausted. Some we can't fault. I mean look at how many times we think about our situation every day. I guarantee our loved ones don't think about it that much. Why would they? Their daily tasks are simple. That is why we need to educate. Make them watch our routines and our struggles. Explain the war going on in your body, in your joints. Tell them what they can do to help. Remember the way you initially start the conversation will set the tone on if your loved one will be receptive. Try not to accuse and say things like "you don't understand". They will just put their defenses up. Say something like "you know, I had no idea what RA was until I did some research. Did you know...(fill in blank)...and that's why I get tired." Make a family plan. Say "if you can let me rest for this amount of time each day then I can help you with things later."

I know this won't work for everyone. I just wanted to share because it worked for me.

4 comments:

  1. You gave me one of those "yes" moments. I can deal with the pain, the adjustment, but it is the constant reminder that RA demands my attention. That is what wears on me.

    My loved ones don't always remember. I am contemplating a daily pain/discomfort chart on the fridge so they can know at a glance where I am at and what I can accomplish.

    ReplyDelete
  2. I need to send my family a link to read this post "Welcome to my world"
    Although you never like to hear of others in pain but it justifies how we feel. Wondering do they really understand? Why do you seem normal sometime but the next day be so achy, slow, complaining and sound like your giving up. I doubt myself sometime. I should be thankful for the few good days I have.
    I recently won my disability case with my attorneys help. It was a long depressing journey. One I doubted sometime. Then one of the "10" pain days came along and I would realize all over again that I'm not capable of holding down a normal steady job. My husband said congratulation on our way out of courthouse to me and it made me sad. Wrong choice of words....I felt like I should be getting a sympathy card instead. Am I making an sense at all?
    In the end my point is I say those things to myself on a regular basis. I have to remind my family/friends that I have chronic back pain thats why I "can't" I am thankful to be here on the God given earth and watch my grandchildren grow and grow but I'd love to be able to do more with them. I guess in that sense I'm perfectly normal...wishing for more than we have. Good day blogger friend. T

    ReplyDelete
  3. Thanks for a nice share you have given to us with such an large collection of information. I really love your blog posts... specially those onArthritis Treatment

    ReplyDelete
  4. thanks for tips and suggestion i visit again for more info

    ReplyDelete