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"Use It Or Lose It!"
What's that mean?
Your finger? Toe? Hip? Knee? Brain? Yep. All those things, and everything that you "live in", / Your Carcass! That's how I explain me. I am NOT my Carcass, yet, I am for this short time on Earth, I AM stuck inside this "Imperfect" Carcass! So, we Pile it up occasional.(Accident) Right? That's why we prefer "Big cars". Detroit Iron. But, there's always someone with "Bigger". You can try to GTheckOutta the way! But, sometimes, you just can't! What then? Some of us die. Some of us are just injured, for a week/month/year/s. Life. I and like many of you, are lifers. "Use It Or Lose It"! It means, no matter what hurts, don't "Park" the rest of your carcass! Move it, exercise it, but, certainly USE IT! I've been here for about 6-8 months. I'm really tired of the same question. OMG! It's gone from my little toe, to my big toe!! To my Ankle! To my Eyelash!!! Then, right to my ***! Well, if you've done your reading, what did you think it was gonna do? Now, you got it in your foot and ***, what's gonna happen next if you sit on that sofa? (Yea, your knee, then you'll have a VERY EXPENSIVE AND EXASPERATING LEG!) Move your ***! Every Day, No elevators! STAIRS! Walk at least a few blocks a day! Carry your milk home! IN PAIN! Whatever you can do, to add to your exercise. PAIN WILL MAKE YOU TIRED< YOU"LL SLEEP! Here's my next Favorite. (I have it too, just like the above)... I can't sleep right! Something's crapped up with my sleep! OMG! Well, One guess why that is? And, you're right again! Not enough Exercise!! Walk to the store for a half gallon of milk, and a half of OJ! (NOT JUNK FOOD!) The longer the better! (within reason). If you don't burn your calories, then all you need, is a very small bowl of Oatmeal / day! Other than that, you're just gonna pack on the pounds, especially with the Meds we're taking! Oh, and there's my last one.... STOP TAKING SO MANY FRIGGIN; MEDS! Don't need them all, All the time! Take it easy, move around, and move Everything! BE TIRED when you go to bed! (Ask your Dr. for a Minimum amount!) Isn't that, after all, the goal?? Now, I'm a realist also. I know we cannot always do this. BUT AND HOWEVER> We can't come running here, or to our doctors because WE've MISMANAGED OUR, CARCASS / EXERCISE / SLEEP / MEDS.! Right? This is OUR RESPONSIBILITY! To keep our selves, "Right"! Yes, we get "off the tracks occasional, and either we know what happened, (exercise that brain!), or, call the doc! Just think, of what you've done the past few days/week, that has gotten you off track? For instance, Last Friday, a week ago, I visited my attorney. Hour and a half away, one way, who holds my entire life in his hands (sorta). A half hour meeting settled me down, but, I've slept for the past week.. Who's fault? Mine! I should have know it would do that! I know my "Carcass" by now! Call it your "Body" or what ever you want. But, you know by now, how it'll behave. Then, we'll advance the cause here I do believe! And, Hope and pray for! BE well, to all! Hope Everyone had a Spectacular Thanksgiving, no matter what, or nothing that you did! Pete asb |
Hi Pete,
I do agree with what you are saying about 'Use it or lose it' however for some people, that is really hard. I spent 13 months in a wheelchair after a nerve block caused me to lose my coordination (PM Doctor injected into my leg that has RSD - something which you aren't supposed to do). During that time, I couldn't do anything hardly and had to rely on my mum and dad to take me everywhere. I did try and move as much as possible but it was really hard when I couldn't coordinate my legs properly. You have to remember that some of us have other issues other than RSD which can stop us from moving as much as we'd like. I have Dystonia which means I can't move my foot at all so weightbearing can sometimes be a real issue. I also suffer from Dyspraxi which means I can't co-ordinate things well so when my PTs were giving me exercises, I often found them hard to do. When I went on the intense PT program, the PTs and Doctors there made me realise that I am in pain whether I am sat or moving so I may as well be doing something. It was a real eye opener to realise that and I think it takes a while to get to that point - you have to try and "accept" this disease first. After realising that, I try and move as much as possible even though it can be extremely hard at times. If you notice on my Facebook account, I try and go out as much as possible, even though it's hard! RSD has took a lot from my life so I don't want it to take anymore (even though it does!). I do agree with your comment about pain meds. I really don't get why some people are on them if they aren't helping. I used to be on LOTS of meds and all they did was mess up my body. They didn't help with the pain - they just caused more problems as I couldn't function due to even more fatigue then I now have, sickness etc. When I went onto the PT Program, they weaned me off all my meds to see if any were actually working. It was really hard coming off the meds but it turned out, none of them had been helping and were just causing more problems. I often get comments from people such as "How can you possibly have RSD and not be on any meds?" which really annoys me. The fact is, none of the meds worked and after so long, your body starts to get more 'tolerance' to pain. A girl that's on a placement in the Care Home i'm currently at was talking to me about tattoos a few days ago. I asked her if they hurt and she said, at first they do and after so long, your body starts to get used to it a little. I guess that's a bit of whats happened to me. Just remember though that some people have problems moving due to mobility problems and other issues not related to RSD. I do agree that no matter what state you are in, you should move as much as possible but for some people, it's really hard and RSD has a mind of it's own and will do what it likes, when it likes! I hope all is well with everyone! Sorry I haven't been around much - have been so busy with placements so that has took a lot out of me so I hardly ever get time to myself anymore!:hug: |
I agree with a couple of your points of view, however I have to chime in with some of the points you made. I agree with only a part of this sentance:
" that is it is our responsiblity to keep our body's right." Yes we should all keep working as hard as possible to not allow RSD to ovecome our daily lives by trying to continue living on with our life as we did before the RSD ( I still manage a fast paced, very demanding career, and take care of all the responsiblities I had before I my body ( "carcass") went hay wired. The thing I think you are forgetting about in the above quote of yours, is that the human body (or carcass) is extremely complex and a lot of things go wrong even when we do everything right. I’m sure what brought you to this statement: “I've been here for about 6-8 months. I'm really tired of the same question. OMG! It's gone from my little toe, to my big toe!! To my Ankle! To my Eyelash!!! Then, right to my ***!” I think you have forgotten how scary it was when this disease spreads. In fact, the whole reason I joined this forum was to listen to what others are experiencing and also share (When I can) what I have experience. To me, the above statement, it goes against the whole purpose of what we are all doing here at this forum. In addition, when RSD spreads, you should “run” to the doctor to see how you can prevent the spread from being permenant. But, I agree that we as patients should not forget to do our part (by excersising and just living our lives to the best of our ability). My whole point is that I just think you forget that we are all at different stages with the RSD. I feel that on an individual basis the odds are stacked against us RSD patients because of the small amounts of research that is available. However, together..I think we can fight this thing. So please, to everyone don’t feel that you have to censor what you write because if we do that… then the forum will no longer be the tool that we need it to be. Lastly, AintSoBad, I hope that you remember that I think you had some great points and often I enjoy what you post, so please don’t take all of this the wrong way. Sarah |
Ali, and Sarah, I thank you both so much for your response(s)!
I suppose and can see, that you both figure, that I'm trying to look for the correct words to put what I'm trying to say, together here. I can certainly be "slow" that way..... I want to be on a positive "note", and certainly wish the best for everyone. I know how difficult it can be, after 26 years of this. Yet, as often as I feel like just "giving up", if and when I do, my body rejects that notion, and, it won't let me sleep! I've got to get moving, and doing something! I think, that sometimes our bodies just want to "reject" this illness and try to fix it it's own way. Ever think that? Well, I don't know for sure, but, one thing I know is, if I sit around all day, my body is NOT happy. I (my carcass) has been used to hard work, since I was very young! I'm 53 now, I watched my father go into diabetes, a little older than I am now, then a heart attack induced by the medication. He quit it all, and got back to work. (Made the rest of us a nervous wreck). But, I think often, that we set a "tone" or "tempo" for our bodies young, and we've got to keep that up! I may be completely wrong, but, I don't see a thing wrong, with walking to the store for some small sundry items daily, or, walking the dog, like that. If we don't go out, and talk (b***h) to ourselves, and be one of "those people", who's gonna do it? pete asb |
I agree...
with you all!! Yes, we must continue to stay active..but to the degree that our bodies limit us to..indidually.... but yes.. push the mark as not to freeze up.. Some can continue the fast pace working life style.. others must call it quits after giving the fast pace life the ole scouts try but be sure to go for a walk each day and move about... just as RSD pain affects us differently .. depending on the area of our body that is affected... it also dictates our life styles and it also depends on how quickly it spreads.. if it does.. some it does rather quickly... so we have to react differently... I am one of those who always said.. I will never give in.. but now.. I am having to give in as I am getting tired... it is a daily struggle.. I am only re-evaluating my pace and taking back a notch as it is for the best..for me. I tip my hat to those who can manitain the fast life and not bending.. but time does take its toll and so does RSD.. that is why we all need eachother here.. staying steady for eachother... sounding praise for the good things or tilting our ear and listen attentively for eachother when life with RSD becomes a bit more than we bargained for... we have great support and friends here! Mostly we need eachother..:grouphug:
Keep smilin.... |
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Next Thursday there is going to be a repeat of a TV movie called, "From Homeless to Harvard" It is so very good. And the life of Michael J Fox is encouraging. When I was 25, my mother was dying from colon cancer. We went to Houston to the M D Anderson Cancer center and she had emergency surgery, and surgeon told my dad and me she had 3-6 months to live. I'm so grateful I was able to spend the last 4 months with her. She had so much grace and dignity. There was no hospice in 1973, so I learned to give morphine shots etc.She wanted to know how much time she had, and my Dad didn't want to tell her, but she kept asking and I felt she had a right to know and told her what the surgeon said. On some things people have different views. A couple days ago, I had a meltdown, and today is a very good day. I am so grateful to everyone here-it's so difficult for people who don't have RSD to fathom what it is like. Thank you all for your kindness and support, your friend loretta with lots of soft hugs:grouphug: |
Loretta,
Thank You so much, for adding not only your kindness, but, your true felt emotion to this forum, that means so much to us all!< We can ALL feel your heartbeat!, We can All feel your Smile, we feel your tears! WE take a huge amount of comfort, and we take a huge amount of loss, from yours! Because, we ALL LOVE YOU! Pete ASB XO |
This is very timely advice.
I've known this instinctively all my life and was told this at a young age. I knew when I got the RSD that it was no less true than before. Indeed, it's probably more true now. My big problem is that my biggest trigger is exercise. Almost any use of my hand at all can bring on the pain and symptoms. If it would merely hurt when I used it then I could quit and I'd learn the specific triggers very quickly but the pain doesn't come for 24 to 48 hours usually. This means that it's scary to do anything rather than painful so it severely limits activity. What makes your thread so timely is that yesterday I felt good enough to do some work for the first time in a little while. I started with cleaning the gutters. The aluminumladders are light enough to handle with one hand and I climb them with my right leg. Today I wake up and my right leg is sore from overuse. This is pretty frightening for me since I used to be able to run long distances or use my legs for hours at extremely difficult tasks and just climbing up 125' over a twenty five minute period has made it sore. This seems to be a warning that I'm not getting nearly enough exercise. It's so hard when you don't know what the effect of your actions will be. The doctors are always sating not to worry about the pain since it can't make you worse but there's always that little gnawing doubt that they are wrong. But you will lose it if you don't use it and of this there is no doubt. Maybe I'll try to go swimming today, afterall. |
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I've read on the RSDSA site the water needs to be 86 degrees. I continued massage therapy even after I got my shoulders back moving. Getting the right person- really does help keep our muscles toned and soft. Stretching is also something I continue to do. Ladder- wouldn't trust myself up there. What does your Dr.suggest? Perhaps a physcial therapist could give you some exercises to do at home. There are the wide rubber band that work muscles, they come in different strengths-colors. Thanks again for posting your experiences. Take care, loretta |
I don't feel entirely comfortable on a ladder but I know it's paranoia rather than real danger. I'm extremely careful to have it set properly and then keep it well balanced. As a child I'd set this same ladder in the middle of the yard and climb up one side and down the other before it fell! It took practice. ;)
I do a lot of things that I probably shouldn't. The big danger really is that I forget things. I've forgotten floor plates behind me which I backed into and a clothesline above me which caused my axe to fly up and come down on my ear. I'm extremely careful and am getting better at making allowances for a poor memory. Working is hundred times better for me than exercise. Playing is even better yet. When working I can make allowances for weaknesses and it feels so good to be getting something done. But I never know where to quit at exercising and it seems it always gives me trouble. No matter how careful or how few repetitions then the next day the pain will be bad. I did go swimming but couldn't stay in very long and couldn't do too much today but it's good to get out and the shopping is done now too. The water was right at 86 today. I don't get spreading from overuse so far as I know; just pain later on. Hope you're having a great day. |
Use it or lose it is my mantra. I live by these words, and always overdo it LOL!
A couple of months ago I had my annual physical, which was about 2 years over due LOL. The doctor checked me over thoroughly, and then told me he was surprised by how much muscle was present in my right leg. He thought it would have been much smaller than the last time he checked it out. He then told me that it was still in pretty bad shape so dont get any ideas of going mountain climbing or anything. He then asked me what I thought was the reason it hadnt shrunk up worse. Use it or lose it was my reply. It has been almost 10 years with this monster, and I am getting pretty good at knowing how far I can go with using it. But I still overdo it because my mind likes to finish things, so im constantly pushing the pain envelope so to speak. I remember way back when I found this place, it helped me to figure out my boundaries. It was good to find people dealing with same issues as me, and I know they are looking for the same things I was. This is a scary life changing ordeal, and might take some a few years to adjust to just the changes in their lives. Not to mention what they deal with in pain on a minute to minute basis. I remember how mortified I was to find out that life was permanently altered, and there was nothing I was going to do about it. I prayed for miracles, but found that this place was the miracle. It was what helped me to adjust to my new life, and also gave me a purpose, to help those that I could that found their way here. I dont get on here as much as I used to because I have learned to keep busy, set goals, and enjoy life as much as I can while I still can. It hasnt stopped the spread, or the pain, but has let me see life in a much more positive way. Quote:
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I want to say something about my initial post in this thread...
I certainly did not mean to sound cold or uncaring to those who experience the spread of RSD. I know, it can be horrifying, and I didn't mean in anyway to belittle any new folks, or anyone who is experiencing the spread at anytime! But, as most here know, I can get a little rambunctious and come across harshly..? Everyone who's replied has been great. I just wanted to point out that, if you choose to just "sit around", without "getting around", and get out and see some friendly faces, and move your body, it will deteriorate. Depression will worsen, and that becomes a pain cycle that will require more meds. By "Use it", I didn't mean lift weights! In the very painful areas, we should try our best to maintain our entire range of motion, unless a doctor directs otherwise. About the Meds. I occasionally go over with my doctor, what meds can I cut down on, or discontinue? You might be surprised, how many folks I meet occasionally who are still taking "orphaned" meds, that just aren't any longer necessary, or necessary at so high a dose! Thanks, Be good, and remember to eat your vegetables! pete |
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I'm thinking too about those who are in so much worse shape than I. Some people don't have the option of even walking much less trying to get things done. But we probably all need to do what we can even if that just means a few leg lifts in bed. Unless the doctor tells you otherwise it's almost certainly best to try to do as much as we can. I really hope no one feels worse as a result of anything that's been said here. When you lose some function it can be extremely difficult to get it back as most of us here have some sense for. |
I'm also still very frustrated with the medical services supply system, not knowing enough about this dragon.
Doctors have become "dispensers of cures", which means meds. That they (both the doctors and PT's) don't know, care or have time enough, or get paid enough to find out and instruct especially any "newly diagnosed" patients on how to care for themselves and what to watch for, is infuriating. We look to our doctors often as if they're little gods and they're not. Has anyone gotten their meds from a pharmacy like Rite Aid, and their computer gives you a print out on the medicine? What to expect, watch for, avoid? I'll bet someone, somewhere is working on something like that, for dx's. I know that would be difficult, which is why we don't have it yet, but maybe someday. A doctor just can't afford the time it takes (for ins. payments) to give the kind of service this sort of complicated diagnoses takes. New Health Care? We ought to have, and the doctors should have "difficult DX" classes of something like RSD, or TOS, as compared to a more simple , common type thing. Diagnoses, can often be (in any service type business) the more costly thing, even more than the repair, (I speak of mechanical things). And, something like rsd, well, you know. There are too many "cracks" in the system, that so many people (I was one) fall through. I thank God for some of my luck, not that I got this, but for having good insurance, and Finally, finding good doctors! Life is up and down, and it has "weather". Sometimes it really can be stormy. Sometimes it can be a sunny day. And, usually after the storm, comes the sun. After the dark, comes the light. Sometimes we need to step back, and realize that our doctor, "is not for us". Rather than blame ourselves, and or the disease. Just as I said a re-eval on our meds is in good order occasionally. Hope this finds all well as can be! Pete |
do not have this syndrome but want to say, I noticed this thread...
and I LOVE IT! I am in pain due to something going on either MS or fibro or whatever else the dr wants to say... either way spasm pain... pain always... I work full time on my feet managing a McDonald's... and my mom sometimes says I need to quit..well I would love to.. as I have five kids and busy busy life... too busy....ok... but sometimes the less I move the more I hurt... so I am thinking if I ever quit I would be in trouble... I know I could my carcass use less hours... but we can not afford that... anyhow.. my point.. I am in pain enough for tears too many times in life... but then I pull self together and stretch with some yoga...and move what I can... feel if I move less and less I would curl up in pain worse... hugsssss, and I know too... everyone I understand when you just can not... I think point can be even if you can not do much moving.. exercise etc... to do a bit...take good care of yourselves.. hugss,sarah |
Hahaha! Yep! That's what whe all deal with. BOO! All I can say is "Walk A Mile in My Shoes" I would be MORE than happy to share my pain with them for one hour. I don't want to scare them by giving it to them for any longer! Sorry for your frustration and hurt...
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ASB and Sarah:
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Hope all is well. :p |
P.S. Just kick me in my "good" butt please! Haha!
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I'm still doing a little more but the pain is up a lot. Yesterday I mulched a few leaves and repaired a kitchen cabinet drawer. Also I took care of several little odd jobs.
The doctors always tell me not to worry about the pain so I'll try this a little longer and will take some of the pain killers if it gets to be too much. It feels so good to get things done that I can stand more pain. |
I tend to view my energy and painlessness as a bank account of some sort. There is only so much of either. My ex used to get so mad at me if I would go for a walk or go sit at the beach and not do the dishes. I would always tell him that I knew I could do one thing before my pain would be out of control, so did I want to do something enjoyable or fold all the clothes? He seemed to think that if I could do one I could do the other. (This doesn't mean that I wouldn't take care of the house... but sometimes you have to pick and choose or you will be miserable.)
And if there is something that I really really want to do, I will rest up beforehand, take meds preventatively, and be ok with being worse off the next day. I call these my "Disneyland days"- as in Disneyland is so worth the next day pains. There was one day when I was in high school that it snowed here in SoCal. Really snowed. And I knew that the next day would hurt like crazy, but I ditched school with my friends and went and played in the snow. The next day was not so fun, but I don't remember that day. I remember playing in the snow with my friends and having literally one of the best days of my life. Lynns |
Lynns,
That's a great example of "Pay to Play". You're right, it is like a bank account. If we want to go to "Disneyland", we've got to buy a ticket. That's anyone. If WE want to go, we've got to buy that ticket, AND, some combination of: rest beforehand, take "Pre-Meds", Take it slow (meaning, we'll get less from the ticket), take breakthrough meds, crash and burn afterwards, possibly missing the next day at the park, and probably being less fun to be around! EXPENSIVE TO BE IN PAIN... You pay in some way, that nobody else really notices, unless they're close to you, and experience it firsthand. Pete |
This is where I have trouble alot. I keep trying to do all the things I used to. The psychologist keeps telling me to pace myself. I used to be able to clean my whole house in one...maybe 2 days but now i am exhausted after vaccuming 2 rooms. I just keep feeling so stupid. Kids and hubby expect me to run errands and drive everyone around all day and then my husband wants me to go out with friends and to holiday parties etc. He doesn't get it. Sorry if I am venting I guess I'm just feeling a little down lately (on top of scared and frustrated). Wish my arm would just fall off so i could get back to being supermom.
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Awesome! Think of the "snow Days".
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