A DAY IN THE LIFE OF RA. . . .m

iVillage Member
Registered: 03-19-2003
A DAY IN THE LIFE OF RA. . . .m
21
Tue, 03-25-2003 - 1:22pm
Dear Holly,

I think this is a wonderful idea! Let's start it now, so that it can help people with all of this. I will document my day tomorrow--which should be especially good since I am in a pretty good amount of pain with these weather changes. Everyone is welcome to do the same, so that we can help one another out. I agree with Vicki that it is great to bring your dh to the appointments with you. I will certainly do that when Gabe and I get married. I will post the name and a synapsis of the book Sandra referred to in her post:

In his book Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife, Gregg Piburn – a husband, father and “caretaker” – weaves together the vignettes of his life trying to make sense of the 14 years since his wife got fibromyalgia. Here is an excerpt exploring his thoughts on being the well spouse of a woman with chronic illness.

Beyond your marital relationship changing, your relationship with your children changes too. Your kids might not understand why you tire so easily. Children can also think that you are dying or that they did something to cause you to get sick. It is important to talk openly with your children about your disease, how it will change your family and what they can do to help.

As my wife came to the final turn, the Death Valley of the 440-yard dash, two women with slim bodies nipped at her heels. The other women’s slender legs stretched, hit and glided in unison. Sherrie’s legs were more muscular in shape, causing little explosions of cinder dust as they pounded the track.

All three were dead even into the 40-yard straightaway, until Sherrie kicked into a gear I didn’t know she had. The next day the local newspaper ran a photo of my 25-year-old wife crossing the finish line with the anguished expression of a woman in childbirth.

I can’t tell you the exact day the wife of my youth died because her death didn’t come nicely packaged with an obituary or a coffin. Sherrie still lives, but the woman I married, the woman who won races and climbed mountains, doesn’t. Once I mentally put “the healthy Sherrie” to rest and grieved that loss, then and only then, was I able to journey with Sherrie beyond the Death Valley of our marriage and our lives.

So began an essay by Gregg Piburn that Arthritis Today published in 1994. Since then, Piburn has continued to explore his role as the well spouse married to a woman with chronic illness. His wife, Sherrie, was 31 in 1985 when she came down with flu-like symptoms – exhaustion, muscle pain and migraine headaches – in addition to depression. Piburn says, “We expected the symptoms to go away within hours or days. But they did not.”

Five years later, doctors finally determined that Sherrie had fibromyalgia, a musculoskeletal disorder that affects the muscles and muscle/bone connections. Her fibromyalgia symptoms have fluctuated over the years but have never vanished. To complicate matters, she has also undergone two major gynecological surgeries and three spine surgeries, none related to fibromyalgia.

In his book, Piburn has gathered thoughts, feelings and experiences from his life with Sherrie and their three children. Here, from his book, is a collection of essays on the theme of the “caretaker”/partner.

Here's a link to more information on this book:

http://www.arthritis.org/resources/Relationships/AHusbandsStory/Intro.asp

So dear Holly, I will put in my day in the life of RA for you tomorrow!

Love to you,

Amy

 

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iVillage Member
Registered: 03-22-2003
Tue, 03-25-2003 - 2:47pm
Hi Holly and Amy, I think this would be a really good idea - I'm in some pain this week - I think I have been overdoing the house clearing at weekends, and I'm now paying the price - my hands are very sore in the mornings and I'm having some warning twinges in my shoulder. So, I resolved to have a relaxed evening tonight and do nothing...until my neighbour who's helping me decorate came round and decided we should start stripping the kitchen walls.

Me: "I really don't think this is a good idea tonight, I've got pain in my hands and my -"

Neighbour: "Oh, don't worry about that, it's really easy, you just wash the walls down and then scrape them with the palette knife!"

Me: "Nooo! No washing! No scraping!" Sigh.

I can't help wondering what Gregg Piburn's wife feels about the way he writes about her. Personally, I feel I am more or less the same person I was before the RA. Obviously it has changed my life drastically, but I think I would be upset if someone that close to me talked about the 'old me' having 'died' when I became ill. Maybe I'm being too sensitive, though.

{{{{gentle hugs}}}

Ang xxx

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Registered: 03-19-2003
Tue, 03-25-2003 - 2:53pm
Not too sensitive at all, Ang. I feel the very same way. In no way do I feel like the old me has died; in fact, I think that having RA has made me more of the person that I am at heart. It has just brought out my strength, determination, and optimism and emphasized them. In fact, dare I say that it has made me even better than I was?!?!?! HAHAHAHAHAHAHA!

 

iVillage Member
Registered: 03-19-2003
Tue, 03-25-2003 - 3:23pm
Here's my day--which actually began last night--as I had to go to bed early so that I could get up early enough to allow my body to move and to get dressed.

Last night: I put water in the kettle on the stove, so that my swollen hands and fingers (which will be worse in the morning) could actually complete the task (and yes, I do NEED coffee or tea in the morning to get moving). I put my clothes out so that I have enough time to get my aching body into them in the morning--so that I can make it to my 8:30 class on time. I packed my books, papers, and computer (because I won't be able to do that with my wrist splints on in the morning). I put on my heated mattress pad so that I can actually move in the morning and get out of bed. I take a Trazodone, Zoloft, Flexeril, and Vicodin before going to bed so that the pain does not keep me up during the night.

This morning: I wake up at 5:00 am. I lay in bed for an hour before I could get up and get out of bed. I shuffle to the bathroom and get into a hot shower so that I can move around to get dressed. I have trouble drying my hair because my hands and wrists are swollen and stiff--as it is I have to use a dryer brush because I can't hold a regular hairdryer and the brush at the same time. It takes me half an hour to dry my hair and another half an hour to get into a skirt and stockings--and this is with the clothes already laid out for me. I put my wrist splints on to help support my hands and wrists so that I can carry my bag and my purse. I arrive at school at 8:00 am.

I have to use a rolling book bag to transport books and papers from class to class, and I already need a Vicodin before I even teach that first class. The pain is already so bad that it takes a concerted effort to convince myself to be patient with students and to be civil to people. These things don't necessarily come naturally when I am in pain. The Vicodin gets me through until my final class ends at 4:00.

Even though I haven't eaten since the early morning, I know I won't make dinner tonight when I go home. I hurt so much that I am not hungry anyway. I only eat before bed (dry cereal) so that I can take another Vicodin. If my jaw is in pain from the RA, I have to forego the dry cereal, as it's too hard to chew (though I can eat it right out of the box; no dishes!!) I open a jar of babyfood instead because it's easy to prepare and to clean up after, and it doesn't hurt my jaw. Of course, opening the *^^%$$$#* jar is another story. I would love to take a hot bath, but my hands hurt too much to make it worthwhile to go through the trouble of drying off and getting in to the tub itself, so I don't. I talk to my family to assure them that I am alright and that I have everything I need. I ask them about their day and listen to their concerns; I don't say anything about my pain, as I don't want to upset them, and I want them to treat me "normally." I also have no desire to re-hash the pain that I felt during the day; I am tired of myself and my pain, and I don't want them to feel that same way too. Before bed, I feed the cats and play with them. It takes me a long time to do this because I have to go down the basement stairs to scoop the litterbox and to wash and put clean dishes down for them. It takes me awhile to do stairs because of my ankles and knees. To be honest, even sitting down and getting up from the toilet hurts enough to make me dread going. I have to set out my tea, breakfast, clothes, and pack my things to get ready for tomorrow. --And it all begins again. . . This is how it is during a "normal" day for me; flares are a completely different beast.

Sheesh, I feel naked writing all of this, and embarassed too. It feels like I'm revealing things I never told anyone before. I hope this helps at least one of you though, and keep in mind that I just do this as routine now. It doesn't make me sad or angry on most days. It is just my routine, and it's part of who I am. I don't feel bad about this, and I certainly would not want someone else to feel bad about it.

Hugs, Amy

 

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iVillage Member
Registered: 03-25-2003
Tue, 03-25-2003 - 8:51pm
((((((((((((AMY))))))))))))

Just wanted to give you a hug and say I love you.

Claudia
iVillage Member
Registered: 03-25-2003
Tue, 03-25-2003 - 9:29pm
Oh Amy, I can't make sense of this new board thing, but can post a reply to you. Thank you, I'm going to gather my energy and add my day to yours tommorow. Your an angel. Holly
iVillage Member
Registered: 03-25-2003
Tue, 03-25-2003 - 9:42pm
Amy you fly with the angels, thank you from the bottom of my heart. Holly (hugs)
iVillage Member
Registered: 03-25-2003
Wed, 03-26-2003 - 2:19pm
Dear Amy,

This is a big step for you to admit your daily problems due to RA, etc. I am so proud of you and at the same time so sad (sorry) you have to face this. You are an angel! Sending you hugs, my brave friend and Goofball. Love, Vicki

iVillage Member
Registered: 03-22-2003
Wed, 03-26-2003 - 2:45pm
{{{{{{{{{{{{{{{Amy}}}}}}}}}}}, I just wanted to give you a great big hug after reading that - and not a cyber hug, either, the real deal! Thank you for being brave enough to tell it like it is - I think anyone who wonders what it's like to have RA/FM should read your post and then be very grateful that they don't have to do that day in, day out.

I am worried about you, though, Missy - you need to take more nourishment than just breakfast and some dry cereal or baby food at night. I know sometimes you don't want the hassle and pain of cooking and opening jars, but how about those milky drinks, I think they're called Build-Up over here, to give you some extra energy? Bananas are fairly easy to eat, too, and yoghurts. I know I am being bossy here, Amy, and you can tell me where to go if you like, but I'm worried about you and I'm considering sending you a food parcel ;-)

{{{{very gentle hugs}}}}

Ang xxxx

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iVillage Member
Registered: 03-19-2003
Wed, 03-26-2003 - 2:57pm
Vicki, you know we all go through the same thing, if not worse! love you too, my dear friend! Hugs, Amy

 

iVillage Member
Registered: 03-19-2003
Wed, 03-26-2003 - 3:01pm
Dear, dear Ang,

I just love you! But don't you worry about me! When my jaw is behaving, I can eat more than Gabe--believe you me!!!! So no food parcels, Missy! You've done enough already!!! ; ) Thanks for your supportive words, Ang and for just being you!

Love to you and Rosie,

Amy

 

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