I feel like crying
AnonymousJanuary 19, 2009 at 4:26 pm
I am struggling. I have no energy whatsoever. I could literally lay in bed all day and night and still don’t get enough sleep. I have tried to push myself, get myself on a good schedule so that I sleep through the night and can function in the day but unfortunately it’s not working. I am awake until about 2 am even if I take a sleep aide. Then once I fall asleep I can’t seem to wake until 12 noon. Then I can’t seem to function until about 2pm and even then it is with effort. I am so bummed and am beating myself up. I hate not having energy and just wonder if this is part of the whole CIDP thing or if it is the Diabetes or the Sleep Apnea. I just feel like a useless waste product and feel like such a loser. I am only 42 and I watch people older than me doing so much more. I used to be so active. Yoga, xxsking, working and such but now I am so unable to get myself going. I try, I try and do modified yoga, I try to paint, I try to crochet, I try to clean and can’t seem to be o.k. with even those efforts. I just wonder if anybody else struggles with this. Thanks.
AnonymousJanuary 19, 2009 at 4:44 pm
I wanted to mention this part first…you certainly are [B]no[/B]t a useless waste product. You are someone suffering from illnesses that are taking a toll on you physically and emotionally. The very fact that you try to do what you can to function is proof that you have something worth fighting for, therefore, you are not useless or worthless.
Please, please focus on the things that you accomplish regardless of how small. It’s difficult to go from being extremely active to sedentary, but you do what you can and rebuild from that. Treasure those good days, hours or even moments.
I’m not sure I want to suggest a therapist as you probably don’t want/need another prescription. If you can find a counselor that won’t automatically prescribe medication, that may help a great deal.
To answer your question, yes….I struggle with my limitations daily. Regardless of how awful I feel or the fact that I’m exhausted from having to literally plan every step can be overwhelming. But, you press on because you have no other choice.
I will definitely keep you in my thoughts and prayers.
AnonymousJanuary 19, 2009 at 5:14 pm
I feel so bad for you and the struggles you are going through. I have GBS and it was nothing for me to sleep hours at a time through the day, evening and night. I felt like I was sleeping my life away and cried a lot of tears over it. With your CIDP, Diabetes and Sleep Apnea, they are probablly all factors in your sleep issues. I sleep a lot less now and try not to fall asleep during the day or evening except for short naps.
You are not a loser or waste product but I can understand your feelings as I have told my husband several times that I just feel so useless.
We should accept the new us with our illnesses but we don’t always have to like what comes alomg with them.
Try not to feel so bad about yourself or beat yourself up so much.
Sending you a BIIIIIIIIIG hug!
AnonymousJanuary 19, 2009 at 7:21 pm
Please try not to feel so badly. We all get these thoughts from time to time and hopefully shake them off. You have been very supportive to me and others even with this intense fatigue. You must be a very strong person.
Hang in there and keep working toward resolve.
Are your main health items under control and the fatigue is getting worse, or are you still working toward resolve with some medical issues. I was at a point were I would feel like giving up trying to get answers but then pushed some more. The fatigue is aweful and I don’t even know how what I have rates with others but I do know we are all suffering.
If things were thought to be under control and the fatigue is getting worse, Linda, it sounds like you may need to start looking into it further. Gradual changes are the worst because you don’t know when to start to complain.
All the Best to you Linda–tim–
January 19, 2009 at 8:15 pm
Sorry you are having a bad time. Kevin is very exhausted some days as well, sometimes he does not even want to play with friends.
There is this over the counter, actually online I think, product for sleeping. It has triptofan, melatonin and something else, maybe it is called alteril, not sure, I will look for the comercial again. I really can’t think of any suggestions, I am sure you do the no caffiene or drinking past 5pm thing, how about external interg=ferences, TV, computer, reading etc. stopped by 6pm? I had to set a routine for Kevin, dinner, shower, veg out at the same time, lights out by 10, if he cannot sleep by 10 30, I let him come in bed with me and I tickle his back.
I am so sorry about this sleep issue, I see the difficulties it causes Kevin. I hope you can overcome it soon, so that you can get back to feeling positive about things again. Best wishes!
Dawn Kevies mom
AnonymousJanuary 19, 2009 at 8:36 pm
Hi Linda: Sorry you are having so much pain. I too have sleep apnea and residuals-are you on the cpap machine? Do you know what number it is set at? Sometimes if they are not set at high enough a number you can still suffer from apnea with daytime fatigue. I can tell the difference between my residual fatigue and sleep apnea; with the latter you find yourself falling asleep all the time and being very groggy in the morning. Fatigue is just exhaustion. If you think it might be sleep apnea call your doc right away. For helping get to sleep I take valium which always works well for me-I only need it once a week or so but it works.
Enough advise-just be aware that there are others in the same boat. Because of pain and fatigue I must lie down 75% of my time, even when I am working with clients. As so many have said, the best thing we can do is work on being ourselves and accepting our situation. I wish you well and if you want any other info on sleep apnea feel free to pm me. Jeff
AnonymousJanuary 19, 2009 at 8:52 pm
Hi Linda, when I read your message it made me cry. This is my first post. I had a mild, rare strain of GBS as of May 1, 2008 and although I am so much better than I was several months ago, I’m still struggling with residual fatigue/exhaustion and not able to do what I could before I was sick. I came to this site to ask if others are experiencing this issue…I see that there are. I’m so sorry that you are going through this and I will pray that you get a good night’s sleep tonight and have a good day tomorrow to help lift your spirits. Julie
AnonymousJanuary 19, 2009 at 9:24 pm
you have described my life to a T…I have to take any kind of sleep products because then i can’t function the next day..It seems like I just push push push until 3-4 in the morning until i am ready to drop over and i am sick from exhuastion and then finally i fall asleep. But then I don’t want to wake up the next day..so it is just a vicious cycle. I don’t know what to do about it and I am tired all the time.
I get very frustrated and can never seem to catch up on everything.
But I am not going to give up and let this stupid illness win..
So hang in there. We’re all here for you
AnonymousJanuary 19, 2009 at 9:26 pm
I had a severe bout of GBS over 30 years ago and still get terribly fatigued and I do not sleep well. I have read several studies that have found that over 80% of GBS patients experience bouts of fatigue the rest of their lives. Try not to get frustrated. You survived! Take each day as it comes and be thankful for the things you can do. And remember, you are not alone.
AnonymousJanuary 20, 2009 at 5:19 pm
Thank you Tina, Shirley, Tim, Lindsay, Dawn, Jeff, Julie, Shirley, and Susanne for taking your precious time to answer. It helps so much to know that at times like this I can turn here and know that people get it. Thank you for all of your suggestions too. Tina, I am in therapy thankfully. I can’t imagine having all of these chronic challanges without it. And Tim and Jeff, the fatigue is that overall exhaustion and lack of energy. I am still in the middle of resolving the sleep apnea so I know that is a major part of it. Some of it too is not having a set schedule and being able to just go at a slower pace in general. I also think I am fighting winter blues, but I keep reflecting back to a recent post from Julie who gave a list of tools for picking yourself up. I do try the gratitude list every day. I think too, that I was doing really well this past summer and I think I have slipped a little and it is a bummer. I am still learning how to go with the punches and not settle on one state of being. You know how it is when you get in your head,”Oh, I’m better now. Thats behind me.” I guess better doesn’t mean cured. So frustrating:mad::mad::mad::mad: Anyway, onward and upward. Thanks again every one. All my best.
AnonymousJanuary 21, 2009 at 1:15 pm
I know the frustration you speak of when you feel better for a time and then have a setback. Unfortunately, this is the “residuals” that doctors always mention. I was 19 when I got GBS, and pregnant. I was hospitalized for 4 months and went home in a wheelchair. I was told that I would totally recover and just have a few “residuals.” For a long time I felt pretty good and ignored the fatigue and bouts of tingling feet, back pain, loss of balance,etc. I raised a family, ran a business and rode my bike about 80 – 100 miles a week. Then, about 25 years after having GBS, I had a spell of increased symptoms and went to a neuro for the first time in years. After testing, she said that I had slow nerve conduction in my lower legs and feet. She felt that it was from nerve damage from the GBS and talked about a post-polio type syndrome. I was devastated. It was then that I started going on the internet and reading everything I could about GBS. What I found is that no one is ever 100% after having GBS and that those of us who had it severely are more affected. More and more studies are showing the long term effects of GBS. The reality that I had to come to grips with was that there is absolutely nothing I can I can do about this but rest, and learn to live with it. I look at it this way……I survived, was able to walk again and had a healthy daughter who has blessed me with two wonderful grandchildren. When you get frustrated, try to cling to the good things in your life and remind yourself that it could have been worse.
AnonymousJanuary 21, 2009 at 5:27 pm
i got my gbs in 2006 before i got sick i was very much like u, always on the go my highschool rugby team captin… since being sick i havent hade a full nights sleep……. i wake up every couple hours and if left home alone i could sleep all day….. i just wnt u to know ur not alone… take everything in stride… if ur body feels tired and wants to sleep it probably needs it ….. healing takes alot of energy. i hope u feel better soon and know that just because u arnt doing what u were before ….ur still doing SOMETHING:o
AnonymousJanuary 22, 2009 at 1:02 pm
You answered my post a few days ago, under, “My neuro is sending me to a Sleep Specialist”.
You said that you were in the same boat as I am, that we are in the 5% that the normal protocols of treatment did not work.
Well, I heard from the “Sleep Center”, and all is being set up now.
But, as mentioned in that post, I am suffering from great fatigue and weakness. My neuro wants me to try “speed” to get me through the daytime.
See some of the posts what people here put in–the good and the bad.
I won’t know if it will work on me yet, until it is all set up.
I will let you know what happens to me, but, like I said–look at what some people put in. Maybe the speed WILL help.
All the best,
AnonymousJanuary 23, 2009 at 5:12 am
You know I understand about the fatigue but you might not know that I struggle with feeling like a waste product as well. I find it very easy to flip things around in my mind and accuse myself of being lazy – completely disregarding the fact that I’m actually sick. I can beat myself up one side and down the other for not being able to do all the things I used to be able to do. And what does that get me? Depressed, angry at myself and both of those result in even less energy for me. I’m really trying hard this year to NOT waste my energy on non-productive, negative emotions. It’s a struggle but I’m trying hard.
As for the sleep thing… this goes back and forth for me. Right now I’m in the perfect set-up and I sleep from 7pm until 3am every night. I sleep on an air mattress, one of those cheap ones you get at Walmart, because a regular mattress makes me feel like I’ve been run over by a truck when I get up in the morning. A regular mattress is too hard on my joints and muscles but the air mattress has some give to it and molds itself to my body. Just a thought… I actually have mine on the floor but you can get one the same size as your bed… just don’t blow it up all the way so that it’s hard, let it have a little ‘give’ to it. I made this recommendation recently to a friend who just died from cancer. He said it made a huge difference in his quality of sleep. The other thing that seems to be helping is I got a sound machine and while it’s not very loud it’s enough to block out all those little creaks and groans from the house. If you aren’t sleeping well even little sounds can wake up up and keep you on the edge of REM sleep. And finally I can’t recommend enough that you get into a routine and train your body to recognize when it’s time to sleep. At this point all I have to do iis turn the sound machine on and pick up a book and I go right to sleep – it’s conditioning. I’ve been reading myself to sleep for more than 30 years so my body knows that’s it’s cue to sleep. It works every time, I don’t even have to read the actual words, just hold it in front of my face.
There are times when I can’t [U]stay [/U]asleep but I really try hard not to stress out over it. No my schedule isn’t normal anymore but the main thing is that I DO get enough sleep, it’s just not the typical hours most people with a job have. If you sleep from 3am until noon that’s a decent amount of sleep – don’t worry that it’s not a ‘regular’ schedule… you can get back to that when you are well… just sleep when you can, as much as you can. If you’ve ever had to work any kind of shift work you know you can make your body change it’s habits or else we’d never have people on duty in hospitals at night. :p
Maybe we should all get together and write a book of advice on dealing with chronic fatigue … that way none of us would feel useless and we might actually produce something that could help other folks down the road… 😀
Hang in there Linda… you aren’t alone… we’re right there with you.
P.S. Sometimes the Provigil/speed just doesn’t work either… I took 1/8th of a dose yesterday, usually enough to get me off the couch, and it did nothing but make my eyes hurt… I didn’t have anything in reserve for the speed to use so it didn’t work.
AnonymousJanuary 23, 2009 at 8:06 am
You always make me feel better. You hit the nail on the head when you talked about “Normal” hours. I can’t get it out of my head that if you stay in bed past 9 am you are being lazy. Especially when I see my partner get up at 5am and work until 4pm. Even though she tells me she feels better that I am home sleeping, I feel like I am being perceived as the house wife who sits at home eating bon-bons while my spouse earns the money. Little do they know that bon-bons are a no-no and that my partner wouldn’t have a clean house to come home to. It’s all in the mind I know and I too am trying to change these perceived notions. I figure that by the time I get comfortable with being home full time, I will be old enough to officially “retire”;).Or at least say I am without getting those perplexed looks from people when I say that now. Thanks again Jules.
AnonymousJanuary 23, 2009 at 11:46 am
You know I have to say a lot of my attitude comes from the constant reinforcement my husband gives me. He tells me over and over “getting well is your job” and “You never get to take a day of vacation like I do. you never get a day off etc.” It makes me realize that getting better is actually work and that my first focus should be on my health, not on appearing to be normal. I spent a good part of my energy in the first few years trying to make it seem like nothing was wrong with me – telling myself to ‘buck up’ and create all the appearances of a normal life. I realized this was a total waste of energy, I am sick, I do struggle with normal activities, and it takes more energy than I want to spend to try to hide that from people. So I do what I want, when I want. If I feel like taking a nap two hours after I get up then I do. If it takes me four hours to get moving in the morning then that’s what it takes. I don’t try to live my life to someone else’s agenda or perception of normal – I just try to live my life the best I can.
I’m glad I helped Linda, now go take a nap. 😉
AnonymousJanuary 24, 2009 at 2:46 am
Lori I think you have put into words many time what I have been thinking! I think we all have had these same thoughts. I agree keeping it possitive and I don’t get everything done each day like I used to. It takes me a month to do what I got done in a week or a day! But I get it done. Somethings have been on hold for three years! SoOoOOOOO? It will get done! I look back at my journal which at first was just a word on the calendar and has developed into a post on these forums or a sentence in my journal. The entire time it shows such slow improvement that if I had not wrote it down I would have forgotten how bad things actuall were. When I got home all I could do was get to the bathroom, let the dog out at Noon and make my lunch and go back to bed. I slept 20 out of 24 hours. I could not fight it and I did not try! I let that take it course. I did try to get things done but it did not work. I would start them and 5 minutes later I was laying down because my eyes were droopy and vision was blurring. That heavy feeling would just comsume me and out I would go. People (family members) could come into the house and I would not hear them walking around. I would not hear the phone ring. I would try to watch the news and make it to the first commercial. I never could watch an entire program on tv or could not think of watching a movie! I to am lucky that my husband filled in on the important things. I might take all day to plan what was for dinner. He would make it and wake me up when it was done. We both kept a shopping list and he would go buy the groceries. He worked overtime to be a loving caregiver! Still does! Now I have to say…….let the dishes go I can do them, just do the pots and pans! On the outside you might not see I was ever ill but on the inside the residuals daily do their thing. It has been three years since I come home from the hospital and think to myself! WOW look what I get done each day! It is not much to others but to me it is something I never thought I would enjoy saying! I got the dishes done all at once! I ran the sweeper in the whole room before I had to go sit down! I walked around the back yard with the dog and we actually got to play ball today! I am grateful for each day and every brag I can tell someone. It does not seem like much to them but it is a giant step to me! Everyone walks thru life the same…….one step at a time! I am still celebrating when that heavy fatigure feeling left me last Summer…….2.5 years after my onset! I get tired and I can not do as much as I used to but that extreme fatigue that is beyond exhausted, way beyond tired is not there anymore! What a reason to celebrate……….I celebrate the struggle, I face each day! Like everyone says….IT COULD ALWAYS BE WORSE! Now my energy is life, sunshine, music and friends……..many of my old friends are gone, but now I have friends like Julie that understand and put it into words so meaningful! It is like you can read my mind! Thank you 2009 is going to be a good year for us all! Happy New Year and Happy New Life!
AnonymousJanuary 24, 2009 at 3:19 pm
You are soooo right. Celebrating the good moments and allowing the others to be what they are. I am really working on the latter and thanks to you all I have permission to do so. So I am not going to beat myself for still being in bed at 2:30 p.m. on Saturday and will get up at my leisure and paint. No more guilt. Hope youre well Kit.
AnonymousMarch 1, 2009 at 9:28 am
When I read this thread, it brought back memories from when I first became ill in 2005. On Jan 1, I went to get out of a chair and I couldn’t stand. 21 days later, I was paralyzed from the throat down. Within a year, I had to quit working, I had to give up the house that I had just built, I had to give up my dogs, I couldn’t play sports, drive, fish or do anything I loved, and I couldn’t even use the college education I just completed 6 mos prior. I ended up in several nursing facilities, and my dignity was constantly being assaulted by people who thought of me as a quad rather than as a person with a physical impairment who had emotions, hopes & dreams. It definately was a time of adjustment. But now years later, I feel blessed. I’ve learned to give myself grace for not being able to do what others take for granted. I’ve learned that asking for help is just part of being a vulnerable human, a condition that most everyone will experience at some point in their life, whether from age or disease or accident. I’ve learned that the death of previous hopes & dreams is not the death of all my hopes & dreams. I’ve learned that I’m a person with a disability, not a disabled person. I’ve learned that its okay to take Lorezepam once in awhile if I need it to sleep and I’ve also learned its okay to sleep in whenever I need to because with CIDP I earn that right everyday. I’ve learned to see my world differently & it actually doesn’t look all that bad. At 42 years of age, I get to be retired, which I never thought I’d get to do until I was 67 …I’ve become more computer inclined…I learned how to invest in stocks because it stemmed off boredom…I know more about politics, history, reality tv, medicare, health advocacy, hollywood gossip, cooking, how to find coupons & bargains, green energy, religion, etc., etc., etc. because I have time to learn about it. I’ve learned that even though I can’t physically go volunteer at a site or maintain a regular work schedue, I can still volunteer, even if only a few minutes a day…a week…or a month, by writing letters, calling, researching or doing nonphysical things for causes I believe in. I’ve learned that sadness, darkness & the valleys in life have a place, but so do the mountains, the joy & the sunlight. I guess what I’m trying to say in this long winded manner is that feeling like crying is natural because the road is long & the path is challenging. However, you are more than your disease and you have much to offer.
AnonymousMarch 1, 2009 at 10:28 pm
How is your thyroid? You might be hypothyroid – underactive. Sometimes the bloodtests do not show what is really happening in the body. Do you have cold hands or feet? Autoimmune diseases and underactive thyroids go hand in hand. One in four Americans have thyroid problems and most of them are women. You can take your basal temperature by putting a thermometer under your arm immediately after you wake up……trying not to move and being silent and your eyes closed. Do this for several days to make sure that your number is correct. Your temp should be between 97.9 – 98.2
IF it is lower, then your thyroid may be underactive. If you find that it is, then it is easily fixed. Do not let your doctor give you Synthroid – it is synthetic and has side effects. You could take Armour or Thyroid Caps which is the wholistic way to go.
It may not be your thyroid, but it would be smart to find out if it is. It would be a shame to blame it on nerve damage, etc. when it might be fixable. Just a thought. I also had trouble sleeping. I find that if I eat something (especially a complex carb)before I go to bed, I have no problem falling asleep. The body needs carbs to make melatonin at night.
I wish you well.
AnonymousMarch 5, 2009 at 1:00 am
[QUOTE=L Cala]I am struggling. I have no energy whatsoever. I could literally lay in bed all day and night and still don’t get enough sleep. I have tried to push myself, get myself on a good schedule so that I sleep through the night and can function in the day but unfortunately it’s not working. I am awake until about 2 am even if I take a sleep aide. Then once I fall asleep I can’t seem to wake until 12 noon. Then I can’t seem to function until about 2pm and even then it is with effort. I am so bummed and am beating myself up. I hate not having energy and just wonder if this is part of the whole CIDP thing or if it is the Diabetes or the Sleep Apnea. I just feel like a useless waste product and feel like such a loser. I am only 42 and I watch people older than me doing so much more. I used to be so active. Yoga, xxsking, working and such but now I am so unable to get myself going. I try, I try and do modified yoga, I try to paint, I try to crochet, I try to clean and can’t seem to be o.k. with even those efforts. I just wonder if anybody else struggles with this. Thanks.
Cala: Just dropping in for a minute. My husband does not have cidp as he was misdiagnosed however they have some of the same symptoms. He has amyloidosis. I am not suggesting you have that at all but he does have sleep apnea and that in itself causes you to be very tired. He is not using it and I am tired of him putting it off. I know he hates the mask but he needs to check on a new one as they come out with new ones every so often that are more improved. He is a mouth breather which does not help since he is not using it. Also not a diabiatic but I have a dear friend who does. She is not taking good care of he eating habits, is over weight , not getting enough exercise. Now skip the exercise for now but you do need to watch things carefully. She sleeps alot. Again my husband gets more tired if he has does alot. It helps him to take a nap during the day. There was a time when he could not stay awake after dinner. He must have slept 12 hours or more on some days. I believe some of this was depression. He and I are both on an antidepressant pill which is helping alot.
His sleeping is better and I as you can see is due to my work on the computer in regards to his disease. He no longer gets on it so I have to pass on info to him. I need to get more sleep that I have been getting but I am working on it.
Hope I have helped somewhat. I know his disease is not the same but that is one reason he was misdiagnosed as well as the fact the neuro does not do dna’s as he stated because Medicare does not pay for them which was totally wrong. But I feel more confident now that we no longer go to him and my husband being on the trial is at least some hope for us.
You need your rest!!!
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