Aa
To those with MS
I don't usually do this, because I read most of the posts and can usually answer my questions. But, I need to know if any of you with definite MS feel the way I often do.
I feel carppy. Therre is no other way to say it. I feel crummy, almost all of the time. My head roars, I feel weak, so fatigued that a trip to the store has me in bed. Along with it I'm irritable and impatient. I'm running to the BR with bladder cramps and everything down under feels strained and raw and achey (no UTI). It's not nausea, or sweating, or anything that I can relate to a specific illness, like I don't feel like the flu, or a cold or alleriges, or GERD. In fact, eating is one of my few pleasures. I have felt this way for the last few months.
My brain is working okay.
Other than the urinary, I have little pain, except for what breaks through with the TN - lots of little jaw pains recently and I see the dentist Monday, but no teeth are tender, gums are good. My gait has slowed and I'm tripping alot and it just makes me mad. Well, I am having really bad eye pain in both eyes intermittently for the last couple months and I am staying in a humidified room and using moisturizeing drops all the time and it is better today.
So, I hate going to the doctor and saying "I feel crummy" and not having anything to tell him specifically about why.
Do any of you just feel lousy?
Is it just a bad attitude?
Quix
I feel carppy. Therre is no other way to say it. I feel crummy, almost all of the time. My head roars, I feel weak, so fatigued that a trip to the store has me in bed. Along with it I'm irritable and impatient. I'm running to the BR with bladder cramps and everything down under feels strained and raw and achey (no UTI). It's not nausea, or sweating, or anything that I can relate to a specific illness, like I don't feel like the flu, or a cold or alleriges, or GERD. In fact, eating is one of my few pleasures. I have felt this way for the last few months.
My brain is working okay.
Other than the urinary, I have little pain, except for what breaks through with the TN - lots of little jaw pains recently and I see the dentist Monday, but no teeth are tender, gums are good. My gait has slowed and I'm tripping alot and it just makes me mad. Well, I am having really bad eye pain in both eyes intermittently for the last couple months and I am staying in a humidified room and using moisturizeing drops all the time and it is better today.
So, I hate going to the doctor and saying "I feel crummy" and not having anything to tell him specifically about why.
Do any of you just feel lousy?
Is it just a bad attitude?
Quix
Q,
You were one of the first to post to my MS Question yesterday, while I do not have an actual dx of MS (yet?) I too experience many of these exact same symptoms.
I have come up with ways to tell my GP, like I have this feeling of extreme exhaustion just wash over me without warning, I can be just sitting in a chair watching TV and this occurs and I have to go and lie down and then I sleep for hours even if I have only been up for a couple of hours, how do I tell him what that feels like, simple. Doc this feeling of exhaustion feels like I've just run a 32 mile marathon without getting up out of my chair and no rest breaks.
Feeling crappy? Hard to explain that one I know, I try to pull together some of those crappy feelings into some semblance of order, like do I ache all over, do I feel weak, unsteady today, more jittery than usual, is my heart racing today, etc. Then I come up with something to kind of paint a picture of what I feel like, also sometimes I just start up the web cam on my laptop and take a photo of myself feeling "crappy" and compare it to a photo of myself on a "good day" and share those pics with him.
Sometimes you know pictures speak louder than words. I don't know if this helps, but I do realize what you are going through, even though I personally haven't truly been diagnosed with this MonSter I really believe that it is what has been going on with me since August of 2007, that's when this MonSter started it attack on my person. (Not sure I can really say that without (I can't think of the word, but it means that I have been diagnosed with it) I know now, confirmation!) confirmation, see I told you I had mental problems! :)
Keep your head up, don't give up, I and many others here need your guideance and support and I know I'll be here to support you.
Prayers and Novenas
Suzie
You were one of the first to post to my MS Question yesterday, while I do not have an actual dx of MS (yet?) I too experience many of these exact same symptoms.
I have come up with ways to tell my GP, like I have this feeling of extreme exhaustion just wash over me without warning, I can be just sitting in a chair watching TV and this occurs and I have to go and lie down and then I sleep for hours even if I have only been up for a couple of hours, how do I tell him what that feels like, simple. Doc this feeling of exhaustion feels like I've just run a 32 mile marathon without getting up out of my chair and no rest breaks.
Feeling crappy? Hard to explain that one I know, I try to pull together some of those crappy feelings into some semblance of order, like do I ache all over, do I feel weak, unsteady today, more jittery than usual, is my heart racing today, etc. Then I come up with something to kind of paint a picture of what I feel like, also sometimes I just start up the web cam on my laptop and take a photo of myself feeling "crappy" and compare it to a photo of myself on a "good day" and share those pics with him.
Sometimes you know pictures speak louder than words. I don't know if this helps, but I do realize what you are going through, even though I personally haven't truly been diagnosed with this MonSter I really believe that it is what has been going on with me since August of 2007, that's when this MonSter started it attack on my person. (Not sure I can really say that without (I can't think of the word, but it means that I have been diagnosed with it) I know now, confirmation!) confirmation, see I told you I had mental problems! :)
Keep your head up, don't give up, I and many others here need your guideance and support and I know I'll be here to support you.
Prayers and Novenas
Suzie
Wow, you just described me! I pretty much feel crappy all the time too. Somedays less crappy than others but still crappy. Thursday night I went out with my daughter and we did a little shopping and then on to a movie. Well I bet you can guess where I was for the next 2 days. That's right, in bed.
I think that's one of the things I hate the most is knowing that if you try to enjoy yourself a little your gonna pay for it a lot. It's damned if you do and damned if you don't. Needless to say I choose to stay in most of the time for this very reason.
Quix, you have inspired me in so many ways. You always seem to have something positive to tell us when we are down and out and you very seldom complain to us even though we know that you suffer a lot. I just wish there was something I could say or do to help you like you have always helped me.
One thing I do want you to know and that is, I value our friendship very deeply. You have went above and beyond for me in many different ways, and now I will try and do the same for you by lifting you up to my GOD and praying for you every day. I will also pray for your doctors so that they may understand what your telling them and also know how to help you. I wish I could do more but you do know I'm just a phone call away or a post away. I love you dearly and we all need you to be a part of our lives. Hang in there my friend I know the LORD is going to bless you.
I'll be praying,
Carol
I think that's one of the things I hate the most is knowing that if you try to enjoy yourself a little your gonna pay for it a lot. It's damned if you do and damned if you don't. Needless to say I choose to stay in most of the time for this very reason.
Quix, you have inspired me in so many ways. You always seem to have something positive to tell us when we are down and out and you very seldom complain to us even though we know that you suffer a lot. I just wish there was something I could say or do to help you like you have always helped me.
One thing I do want you to know and that is, I value our friendship very deeply. You have went above and beyond for me in many different ways, and now I will try and do the same for you by lifting you up to my GOD and praying for you every day. I will also pray for your doctors so that they may understand what your telling them and also know how to help you. I wish I could do more but you do know I'm just a phone call away or a post away. I love you dearly and we all need you to be a part of our lives. Hang in there my friend I know the LORD is going to bless you.
I'll be praying,
Carol
You don't know me, but you have, in the past, answered to desperate posts of mine in a very warm-hearted and truly helpful way.
I just wanted to say I'm sorry you feel like this so often- and probably right now, too, and I definitely don't think it's a bad attitude- of all people, you are the least I could possibly imagine they would just whinge around, even by just having read your posts and a lot of the great stuff you've written here, I get the powerful impression of a VERY strong person- maybe that's what makes it even harder when you feel like that.
I really hope you will have more good days soon- my thoughts are with you!
Rike
I just wanted to say I'm sorry you feel like this so often- and probably right now, too, and I definitely don't think it's a bad attitude- of all people, you are the least I could possibly imagine they would just whinge around, even by just having read your posts and a lot of the great stuff you've written here, I get the powerful impression of a VERY strong person- maybe that's what makes it even harder when you feel like that.
I really hope you will have more good days soon- my thoughts are with you!
Rike
Hi,
I couldn't understand any better if we were twins, I don't think. If you recall my situation, it is different than most, but, to answer your basic qualifying question - I have definite MS. I believe I survive by not thinking about much as far as symptoms - little ones anyway. It is very hard to know which disease is causing which symptom, so I don't try to see specialists - though Medicaid won't let me see many outside the hospital anyway.
I've noticed lately, though, that I have felt more and more "BAD". Fatigue has hit like a freight train - reminds me of when I first became ill. I always described it as periodic times when my fatigue was so overwhelming - I couldn't rise above it. All my joints hurt - my body was inflamed everywhere, with joints swollen. Eyes hurt and so dry and blurry. And my GI and Lung problems all seem to flare up. There is a mood change as well. I always prided myself in being able to stay mostly filled with joy - looking at the humor in life and enjoying my kids and my Lord, and delighting in learning new things. But more and more, depression and irritability are creeping in with nothing offering relief.
I know my doctor is thinking I won't live that much longer, which means I don't get pep talks from him. He's sympathetic, but although he's always been the optimist, I don't see it in his eyes anymore. I don't mean to bring you down - I know you have a lot of life to live and are still able to be active. BUT, I hear you saying you're getting less and less able to keep your activity up. I want you to know I understand that transition (hopefully temporary for you) and change and how difficult it is.
Denial - even though not really real denial - in other words - we both are aware of the truth of what's going on! Allowing yourself to not focus on the seriousness or permanence of the illness sometimes is what keeps us going. No one with the dx of MS knows for sure the path their disease will take. I do know a bit more because of all the other diseases and problems, but still don't know for sure. Miracles happen, and I don't know exactly how things will play out.
I do want to say to you, though, and to myself - I think its OK to mourn and take a moment to be angry with your circumstance. Life isn't what you wanted nor is it always easy to accept. When we try to always wear a smile - it isn't being truthful to ourselves and the grief backs up and becomes poison. Let it out and THEN move on and think how you can use the latest crappy thing to help others or yourself.
I don't know if I can say anything right now to be helpful but I am very down right now. I have a son who is suffering terribly, horrific financial problems, nothing works in my home - nor cars. My body breaks down more and more each day and I can't bear my children seeing their sole support dying before their very eyes. I can't even make food or clean up my surroundings. I don't even want to bathe or see anyone - except for church, which I still try to make it to almost every week. I felt myself thinking iffy thoughts about it too lately.
OK - point is. GET your FEELINGS out. Tell us - or someone. Be vulnerable and honest about your fear and disappointment. You'll be more help to yourself and others as well if you don't pretend to always be strong. I've always been the strong one. People expect it from me, which makes it hard sometimes. I'm working on being more honest with myself and everyone else. Hey - I can't do it all (or even much or any of it). I have a strong faith in Christ and so I try daily to give my concerns to Him - and then try to not take them back!!! lol
I apologize for rambling and hope you know I'm just trying to make you realize you're not alone and that it's a good thing to express your down times. I'm thinking of you, and want you to know it. Blessings, Jan
I couldn't understand any better if we were twins, I don't think. If you recall my situation, it is different than most, but, to answer your basic qualifying question - I have definite MS. I believe I survive by not thinking about much as far as symptoms - little ones anyway. It is very hard to know which disease is causing which symptom, so I don't try to see specialists - though Medicaid won't let me see many outside the hospital anyway.
I've noticed lately, though, that I have felt more and more "BAD". Fatigue has hit like a freight train - reminds me of when I first became ill. I always described it as periodic times when my fatigue was so overwhelming - I couldn't rise above it. All my joints hurt - my body was inflamed everywhere, with joints swollen. Eyes hurt and so dry and blurry. And my GI and Lung problems all seem to flare up. There is a mood change as well. I always prided myself in being able to stay mostly filled with joy - looking at the humor in life and enjoying my kids and my Lord, and delighting in learning new things. But more and more, depression and irritability are creeping in with nothing offering relief.
I know my doctor is thinking I won't live that much longer, which means I don't get pep talks from him. He's sympathetic, but although he's always been the optimist, I don't see it in his eyes anymore. I don't mean to bring you down - I know you have a lot of life to live and are still able to be active. BUT, I hear you saying you're getting less and less able to keep your activity up. I want you to know I understand that transition (hopefully temporary for you) and change and how difficult it is.
Denial - even though not really real denial - in other words - we both are aware of the truth of what's going on! Allowing yourself to not focus on the seriousness or permanence of the illness sometimes is what keeps us going. No one with the dx of MS knows for sure the path their disease will take. I do know a bit more because of all the other diseases and problems, but still don't know for sure. Miracles happen, and I don't know exactly how things will play out.
I do want to say to you, though, and to myself - I think its OK to mourn and take a moment to be angry with your circumstance. Life isn't what you wanted nor is it always easy to accept. When we try to always wear a smile - it isn't being truthful to ourselves and the grief backs up and becomes poison. Let it out and THEN move on and think how you can use the latest crappy thing to help others or yourself.
I don't know if I can say anything right now to be helpful but I am very down right now. I have a son who is suffering terribly, horrific financial problems, nothing works in my home - nor cars. My body breaks down more and more each day and I can't bear my children seeing their sole support dying before their very eyes. I can't even make food or clean up my surroundings. I don't even want to bathe or see anyone - except for church, which I still try to make it to almost every week. I felt myself thinking iffy thoughts about it too lately.
OK - point is. GET your FEELINGS out. Tell us - or someone. Be vulnerable and honest about your fear and disappointment. You'll be more help to yourself and others as well if you don't pretend to always be strong. I've always been the strong one. People expect it from me, which makes it hard sometimes. I'm working on being more honest with myself and everyone else. Hey - I can't do it all (or even much or any of it). I have a strong faith in Christ and so I try daily to give my concerns to Him - and then try to not take them back!!! lol
I apologize for rambling and hope you know I'm just trying to make you realize you're not alone and that it's a good thing to express your down times. I'm thinking of you, and want you to know it. Blessings, Jan
Oh and Ufrustrayed2, I can pretty much say your days and nights sound pretty much like mine, even down to the toilet paper thing, hehehe lol!!!
Hi Quix!!! I hope you are feeling better!! I know you want to be the one here to support everyone and carry there beasts for them all while dealing with your own syptoms!!! Just hang in there!!! you are human and you are allowed to have your time too!!! I too have been feeling crappy everyday for too many months to count!!! I come here for soooo much, it's support, validation and wisdom!!! We all owe you sooo much!!! Give and take and I'll scratch your back and you scratch mine!!! We're all in this together!!! So always ask the forum family when you need help !!! Thank you Quixf all for all you do and to everyone here!!! I hope you feel better real soon!!
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