RSD and Good and Bad Days

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From: byrd45 (Original Message) Sent: 8/18/2005 7:05 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 6/7/2004 12:31 PM
Hi everyone,
Once again it is time for our weekly discussion and today I would like to discuss our good and bad days living with RSD. Some days I wake up and rolling out of bed doesn't even seem to be on my list of options. I'm sure you have been there too. Body is in agony and I literally have to roll out of bed. Burning pain, numbness, stiffness and pain to the point it is a struggle to move at all.Does this sound familiar to you too? On a good day the pain is there but not to the same degree. On these days I definitely feel more optimistic. On these days I can be my own enemy. I have learned alot over the three years of living with RSD. Beware of doing more than your body can handle on these days. I feel I am living in a balancing act. You want to go have fun, yet end up paying for it for two or three days later. I personally am referring to what normally before RSD I took for granted.Everyone is different however, just going shopping can mean a couple days in pure agony for me. I know that now I have to pay attention to my body. When I feel tired I rest. I take my medication on time because if I don't I will regret that decission. I try my best not to overdue yet strive to move enough to keep my circulation ok. Sitting too long is as bad as moving too much. I also noticed how my pain levels fluctuate during the day. I try to take advantage of these times to do what I can. I have goals everyday even if it is only to get dressed and enjoy sitting outside and on a better day enjoying lunch with a friend or going to a movie. I would love to hear your comments or experiences about your days living with RSD.Just add it to this post.
Have a good day,
Robyn


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From: byrd45 Sent: 8/18/2005 7:48 AM
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From: Debbie58 Sent: 1/24/2005 4:26 PM
Hi everyone, Robyn has hit the nail on the head when she talks about good and bad days. I myself have day were it really hurts just to walk. Because my R.S.D. is in my legs and hips and trying really hard to climb up. there are those days when you would rather stay in bed then get out. We all have to go to the bathroom in time so means we have to walk boy can that hurt. For me it is like needle and pins on the bottom of my feet. the legs get numb the hips feels like someone is pulling them apart,then the back kicks in there for good measure with stabing knives in it all the way down to your feet. I guess for all of us it is just a little differnt. But it all boiles down to the fact it really hurt to move. But welcome to our lives!!!!!!!!1 Then there are those really good days that make you think you can do anything that you want to. I guess thats whats keeps us going. I'm not sure about the rest of you but i myself bruse very easyly yeasterday i was sitting on my chaise lounge doing one of my favorit things which is needle point. My pointer finger started to hurt and I looked at it and it was black and blue. Go figurer, just my luck so I can't do that for a few days until it heals up . There is always hope that tomorrow you will feel better I hope so? Debbie58


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From: <NOBR>glendapullum</NOBR> Sent: 1/25/2005 8:15 AM
Yep I know those good and bad days well
On a good day I feel like superwoman and will try to get sooooooo much done around here then I pay for it for 2 or 3 days and am down .You'd think after 12 yrs with this I'd learn but oh no .Guess my motto has been just take 1 day at a time and do the best I can without killing myself oh well if things don't get finished that day anymore theres always tomorrow .
hugs
glenda



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From: <NOBR>byrd45</NOBR> Sent: 1/25/2005 10:08 AM
Hi Debbie and Glenda,
I think what you are both saying in your posts hits home for me too. Some days it feels like you are climbing the highest mountain just getting out of bed. Even after 3+ years I still overdue it on my good days too! They are infrequent lately and when they come I try to do more than I have been and end up paying for it. Well the way I see it is take each day as it comes,do our best to deal with it and that is how we survive our days.
Robyn


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From: laceheart Sent: 1/25/2005 7:11 PM
Good and bad days, to speak for my husband, his bad days it hurts too much to move so he lays around and sleeps an unrestful sleep. His good days he follows his routine. Get up take son 1 to school, come home rest for an hour, take son 2 to school, there after keep himself busy with what ever he enjoys or needs to get done. The few moments he spends one on one with our sons taking them to school is the most important thing to my husband. He figures it is a good day as long as he can do that.
Myself, I have had those days wake up stiff in the morning, by body making me aware of where every bone in my body is. So far I have been lucky and those days aren't many. I get myself up and tell myself let's see what this day brings. My husband is an inspiration to me, especially on my bad days. I watch him and think to my self, if he can get moving with the pain he suffers, then there should be no reason that I can't do the same. We cheer each other on, pat each other on the back and say it is ok hun, if you are hurting to much today then I can get what needs to be done done, you just rest. We realized being fair and even in getting things done isn't possible so we agreed that we wouldn't say I am sorry all the time if one of us need rest more than the other. A great day for my husband would be taking care of his fish tanks, running errands, do a little house work, visit a friend, or taking our kids to the park. A great day for me is leaving the house at least once during the day, sweep the floors, folding laundry, or the greatest day of all being able to go to the park with my husband and our kids or driving some where. Each day is a challenge that we look forward to and even the smallest things are as important to us. Let's just say, we prefer to forget our bad days as soon as they are over. As far as the RSD goes, you hit right on the head, Robyn. Only on the bad days my husband says it feels like some is ripping his spine out. Today has been a good day .
Michelle


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From: <NOBR>byrd45</NOBR> Sent: 1/26/2005 3:25 PM
Dear Michelle,
I think it is great you support each other that way! Understanding each other keeps stress levels down which can help keep pain down some. It is good to listen to what your body needs and I am still trying to learn that completely. I try to and I guess that is all any of us can do.I hope today has been a good one for both of you!I don't know what I would do if my husband wasn't supportive and I am thankful he is.I think we all miss the person I used to be. I am learning to be a person who lives her life differently but try my best to enjoy the life I have.I still get frustrated and angry but not as often as when I was first diagnosed.I guess it takes awhile to get used to the changes in life as an RSD/chronic pain survivor.I really do believe we are all survivors!
Robyn


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From: GalenaFaolan Sent: 1/26/2005 8:58 PM
Ahhhh, good days and bad. My bad days, I just don't want to walk at all. If I could cut myself off from the hips down I would!!! On these days, I try to pamper myself a bit more. I relax in a hot bath for a bit to ease the pain a bit. I keep my nightclothes on all day if I feel like it and just stay comfy all day as well. I tell me that I hurt so nothing is hurt by me not doing anything today. It'll all still be there tomorrow!! No use in feeling guilty over anything when pain has you in it's grip.
My good days are wonderful!!! I actually enjoy riding my bike to meet Serena after school. Feeling the sun warming my skin and breathing in the fresh air of a brisk day. I love hearing about her day and ask lots of questions and laugh!! I usually laugh everyday, good or bad, but it feels better on a good day. I try to get any shopping done I need to, laundry done, clean up the house and really enjoy spending time with Serena and James. I feel better for having done what I needed to do and nobody expired because I had a bad day or two and the house had to wait to be cleaned. A sense of humor is what gets me through the really rough spots and the reminder to self that I have RSD everyday, all day, all year, etc. LOL On those good days, it feels sometimes like I'm imagining the whole thing and don't really have anything wrong with me at all. That it's been some kind of bad dream and I'll be fine now. That's not denial, just wishful thinking of course. It took awhile for it to sink in and not feel like I had lost my mind because the pain flucuated. I did feel quite crazy for awhile, but not anymore.
I'm lucky I have such a great husband for support. He is wonderful and keeps me going. He babies me and pampers me so much when those bad days hit. He makes me go to the couch and won't let me up except for bathroom breaks. Even then, he'll walk me there and back just to make sure my legs don't give out and I fall or something. He'll massage my legs and arms when they really hurt too and try to relieve some of my pain that way. A good massage really does help!!! It's a good mind distracter and is also very relaxing which in turn helps ease the pain cause the muscles aren't all tightened up and making things worse.

Love and Hugs,
Karen J


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From: <NOBR>byrd45</NOBR> Sent: 1/27/2005 10:01 AM
Hi Karen,
I have quite a few times in the beginning thought the same thing that was I losing my mind. Your way of looking at RSD is really great. I am slowly learning not to feel guilty when I am not able to do something.God bless your hubby I am so glad he is nurturing to you. My husband is the only person I would let rub my back but it really does help. He knows just how to rub my back so it doesn't hurt instead of helping.Every night at bedtime which is my absolute worst time of the day. He is always there for me even when he is sick or not feeling good himself. Next time I am having a major flair I will think of what you posted and just relax and let things go until I can handle it again. Thanks Karen,your post really hit home for me.
Robyn


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From: GalenaFaolan Sent: 1/29/2005 10:29 PM
You're so very welcome Robyn. I'm glad my words have given you a new outlook! I have found that is the only way I can live with this and stay sane!! LOL I have always refused to let things get me down or beat me.
If you can, meditate too. Put on some music you like and block out the world. I do it often and have found it to be a great help also in dealing with those frustrating days or even high pain days. It can be hard to concentrate sometimes, but even then, just closing my eyes, and "making" my muscles relax from head to toe helps a bit, even if it's just the tension.
Hope your weekend is going well and the weather isn't bad.

Love and Hugs,
Karen J