AnonymousApril 16, 2008 at 6:18 pm
[COLOR=Navy][SIZE=4][FONT=Book Antiqua]I have been trying to be considerate and keep my bad days to myself and only offer constructive input on this forum but I am ready to burst and I just need to get it out. All day yesterday and today I have been wanting to just bawl my eyes out. I just had about 2 weeks of finally feeling pretty good consistantly and then Monday after taking my medication I went downhill. I am having one of those periods of time where every move feels like you’re hoisting a load of bricks around. I am sleeping for hours and only able to do about one thing and then have to go back to sleep. Walking is a complete chore even with the AFOs and my mind is a torture chamber. Trying to decipher what is attributed to what. This new eyes blurring is driving me crazy and my legs feel like sacks of cement that ache from the marrow to the skin. I have gained 10 pounds this year and hate my body and now my menstral cycle is contributing to these exacerbations of symptoms. Believe me when I say that I have been trying with all my heart and soul to live well, see the positive, let go and live in the moment, find joy where I can, appreciate what I do have and accept everything as it is. But these past few days I am just struggling. I am so tired. Physically and mentally. I am tired of being apologetic for feeling what I do, tired of trying to make a life out of this crap and tired of lugging this body around. I have even been trying to love it just the way it is. I am tired of doctors and especially those who don’t have answers. Just more questions and concerns. I just don’t want to do this anymore. I really don’t. Thanks for listening. Sorry to be a downer.
AnonymousApril 16, 2008 at 6:59 pm
Hi Linda: Believe me I know how you feel, and I am sure many of us do. It is hard to be positive all the time, and it is actually good to ***** and moan sometimes. It is often a struggle and there are times you just can’t feel good. Get in bed and rest as much as you can. As I wrote elsewhere, depression is a residual too and it is a sign you are doing too much. The only thing I would suggest is to try and remember that just as these bad times are unavoidable the good times will roll around again too. Jeff
AnonymousApril 16, 2008 at 7:15 pm
You stated my current feelings perfectly although I probably would not have said them. I am so glad that you did. It is hard that this life is so much a pendulum at this time. I hate the down times. Although one can appreciate the good times more than ever before, they seem so short and sometimes it is so discouraging to know that life is so unpredictable now.
Hang in there. There are lots of people that understand and want to say to you words of encouragement to keep going and hold onto that positive strength that helps most days.
WithHope for this to be all over as well.
AnonymousApril 16, 2008 at 7:28 pm
Everything you are feeling seems to be pretty normal for alot of us. I have the benefit of looking back over 4 years to know this. I was in some pretty dark places during my recovery. It does get better, maybe not back to normal better, but a new appreciation of what I can do better,
I have been fighting myself all this time, depression seems to be a given for us. I just want you to know that we are here for you and many, if not all of us have been through it.
I know it doesn’t make it any better and we are all different. The people I have met here are some of my best friends, and they also keep me going.
If I can ever help or you just need to vent, please email me, I like to help,
AnonymousApril 16, 2008 at 7:50 pm
OMG-you just wrote how I am feeling today! I am also so sick of being tired and tired of being sick! I want my freaking life back. I felt like crap on Monday came home from work and went to bed around 730. Tuesday I felt pretty good but today I actually left early from work because I felt like crap. Not sure if I am going to work tomorrow or not if I feel like I do now I will not be going. I am so tired and weary I honestly do not know how much more I can take. I am so glad I found this board because my friends and family just do not understand. I hope things get better for all of us.
AnonymousApril 16, 2008 at 7:51 pm
I know what you mean…I’ve always have been active, and this curve ball thrown at me has taken its toll emotionally……
I see you are from Rochester, perhaps you need to get out and smell the roses…Literally…! Sounds like a trip to an arboretum, greenhouse, or something you enjoy that doesn’t demand physical stress may help….I’ve been couped up in our house for pretty much 5 months, and only the last couple days has it been nice enough to go outside and enjoy some sunshine….Its finally got in the 60’s today, a week ago was the start of a blizzard! ick….
As for the physical part of your problem, keep getting that sleep during the day… I know i learned the hard way to rest… Keep after those doctors/ get referals for specialists/ whatever it takes till you get the treatment or diagnosis to make you better…..Are you doing any kind of therapy to guage progress good or bad..
I’m sure things will get better…take care deano
April 16, 2008 at 8:10 pm
You are always positive, so I would say it is your turn to ask for a listening ear. I am so sorry you are feeling down. Kevin was in an unusual amount of pain today as well. He was so good yesterday. The up and down gets to him too. I hope your spirits get lifted soon and you physically get your strength back soon. I bet you never thought that you would help others by articulating what you were feeling. Your courage to express yourself gave others the courage to say they too are struggling. See how strong you are!!! Sleep tight tonight and a better day will be in store soon.
Dawn Kevies mom
AnonymousApril 16, 2008 at 9:36 pm
Do you know the “Footprints” story? About how there was only one set of footprints on the beach? Well, let us all carry you. I think we have all been caught up in the cycle of depression at one point or another during our battle with GBS/CIDP. It is so astounding that you have managed to support all of us at some point and have never asked for anything in return. There is such a huge level of trust attached to opening up to virtual strangers, but it tells me that you only said what so many of us have hidden for a long time. It’s okay to ask for help. A quote I use in my training is “Be prepared to offer and give support. Be prepared to ask for and accept support.” It is our turn to “carry you”, to give you what ever support you need from us. You have only to ask.
May you find peace and comfort knowing there are so many of us thinking of you. I will keep you in my prayers.
AnonymousApril 16, 2008 at 11:13 pm
Linda, am so glad you shared these feelings with us. Sorry that it is just a hard time for you, but thanks for sharing. I been in that same place so many times in the past six months and then feel ashamed of myself as so many on the forum are much sicker than I am. But, maybe I’m a whiner or unrealistic, I keep expecting to wake up and be totally normal of the old Beth, seven months ago.
Guess i took the first step in realizing disability by purchasing the used electric power chair today.
But, myself and probably everyone on this forum get tired of being sick, tired and weak.
Hope tomorrow is some better and keep sharing your down days as well as uup days. We have to realize that we are goiing to have both.
AnonymousApril 17, 2008 at 4:18 am
Gosh, I’ll bet you had no idea of the storm you would set off just by vocalizing what many of us want to say. I can totally relate to what you are going through – I feel that way too and want to scream sometimes. What makes it harder trying to conceal my frustration from my husband whom I think has been through quite enough. This is the place where I feel comfortable whining because I know there are so many here who understand, who don’t feel extraordinarily burdened by the information, and who can provide me with a sense of perspective that tells me I’m not alone in this struggle with my emotions.
When I am not depressed about my illness I try to take that time to either mentally or physically list the positives in my life because I know I’m not going to remember them when I’m depressed – or they will look different. That way when I get so depressed I can’t see anything good I can go back to my list and say “oh yeah, it stinks to be stuck at home because I can’t drive – but if I had to choose a place to be homebound this is the ideal place.” That sort of stuff. It sounds silly but truly I don’t see far out of the well of depression when I fall in and each little positive thing I can find to counteract the negative ones helps me climb back out into the light.
Finally, a beloved friend taught me this little trick when you are struggling to find positive things in your life – paste a smile on your face anyway. Force it if you have to – hold it as long as you can – trust me when I say that if you do this regularly just like exercising any muscle eventually your body will respond and you will start feeling happier. There are chemical reasons for the transformation but I prefer to think of it as magic. The magic of “fake it until you make it”. I’ve taught this trick to many people in the last 15 years and I’m always amazed when it works. 🙂
How about a frog to keep you company? They make very good listeners, they don’t talk much and they are low maintenance, not too cuddly though. 😉
Take care Linda and thanks for sharing, it helps when you know you aren’t the only one.
AnonymousApril 17, 2008 at 10:28 am
We actually have “THREE” chronic illnesses, Chronic Syndrome, Chronic Fatigue and Chronic Stress to fight and we do get so tired of the struggle.
Would a Hug from all of us help!
AnonymousApril 17, 2008 at 11:59 am
I hope today is a brighter day for you…I know, as do all the others, what you are feeling. and, I, too, thank you for saying it. I’m having a very hard time right now, too. Most of mine is related to missing my mom…and then mix in everything else and it sucks. I go to her house every day as we are gonna do an estate sale…I’m not resting…we’re also trying to move. I’m not sleeping and when I’m at my moms, when I am alone, I just cry. Then I have to answer a five year old little boy when he asks why I’m crying. I told him I’d do anything to have her back and he said, “me, too”.
Just today at work they were making fun of me for my handicap parking. One said I’d burn in hell for lying. They were kidding…they are ignorant to my condition…but, again…it sucks.
It’s a bumpy ride and there are alot of days that we just want off.
But, just around the corner, there’s got to be something better.
AnonymousApril 17, 2008 at 7:17 pm
[COLOR=DarkOrchid][SIZE=3][FONT=Book Antiqua]Wow! I can’t thank each of you enough for your responses. I am honored to be able to share my stuff and know that it helps others. There are so many jewels I will take from each of you. Dawn, you made me cry and Julie, a frog sounds fun but my little man Michelangelo would have none of that. There is only room for one creature in our house and he’s it! Today I took it easy on myself and allowed myself to nap in the middle of the day. Then I went to therapy and then met my partner and dog at the park. She caught us some dinner (trout) and Michelangelo and I went for a stroll. A small feat for me as my legs and ankles were wobbly but I just went slow. Last night I actually went on line to look up used power scooters because just strolling in the park has been hard. And we have a birding trip coming up that I don’t think I am going to be able to withstand without help so I am seriously considering maybe even renting one. The AFOs don’t really help with the upper leg weakness and duration so…. not sure though. Anyway, today was a better day and I am so grateful for this forum and all of you who take the time to listen and give of yourself. This is such a strangely unique support in that I can’t see you but I know you are there and that can mean the differance between life and death sometimes. Thanks again soo much.
AnonymousApril 17, 2008 at 9:49 pm
I am so sorry you have been feeling bad. I know that springtime and sunshine always help me feel better so I’m wishing for you…
[FONT=”Trebuchet MS”][COLOR=”Orange”][COLOR=”orange”][COLOR=”Red”][SIZE=”6″]ONLY [COLOR=”Orange”]SUNNY[/COLOR] DAYS AHEAD[/SIZE][/COLOR][/COLOR][/COLOR][/FONT]:)
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AnonymousSeptember 20, 2007 at 2:02 pm
I haven’t posted too much lately. I have a 10 month old who is in to everything so please forgive me.
I am just feeling SO tired the past few days. I don’t get it … I am taking extra naps and getting a decent night sleep but can’t seem to shake this sleepy feeling.
I am a year post GBS and haven’t had much problem with being tired in the last few months but all of a sudden! Strange!
AnonymousSeptember 20, 2007 at 7:09 pm
I don’t think it’s strange – you have a 10 month old who is into everything. 😉
Unfortunately you probably don’t get to nap as much during the day as you used to and while I’m sure it’s a joy to spend more time with your baby, you’re probably tired. I don’t have kids so I just watch my friends who have them. I have a friend with a baby who just turned a year old. This girl ran marathons before she had her baby and she is always tired now. She tries to nap when the baby does but as you probably know sometimes that is the only time you can get housework done. Is there some way you could get some extra help around the house or something so you could take more naps to make up for the extra energy you are spending chasing your very active baby?
Just a thought… from someone who is not a parent so take it with a grain of salt.
AnonymousSeptember 20, 2007 at 11:59 pm
Since youve been around the block with this auto-immune
stuff.Because my allergic reaction to ragweed is extreme,
tightness in the chest ,sinus headaches the whole nine yards,now fatique is involved.Still no abnormal numbness
or weakness,just that fatique. Do you have any similiar
experiences with allergies?
AnonymousSeptember 21, 2007 at 5:17 am
Not to hijack Sharon’s thread but yes I do think allergies play a role in how I feel. I had bad allergies as a child but out grew them when I moved away from Tennessee – or so I thought. They have reared up again a couple of times in the last 25 years but compared to how miserable I was as a child this is nothing. Both my husband and mother have worse allergies than I do right now so I don’t even count them. My mother has suffered bad allergies all her life, I used to have to give her shots when I was a teenager. She also had shingles, her brother has Chron’s, my cousin has Chron’s etc.
That being said, just because I don’t get a stuffy nose anymore doesn’t mean I can’t tell when the pollen count is high, or there is mold in a room, or in this season – it’s dead leaves that make me sneeze. I get more tired, more “soggy” and generally feel like I can’t catch up on sleep. None of that contributes to numbness or difficulty in movement but it greatly contributes to my fatigue. I mean after all your immune system is just busy busy busy working on the wrong things so no wonder we are tired all the time.
Since I am mentally resistant to taking drugs I do simple things to keep from sneezing – wash my face and hands often to get the pollen off, blow my nose, sneeze out through my nose, not my mouth (yes it’s messy but the irritants are in your nose so if you get them out rather than inhaling them you have fewer stressors…). And I use honey – I don’t know whether it really does help or not but it sure tastes good in my tea!
Honestly I haven’t found that other illnesses concurrent with CIDP/GBS have made the numbness or paralysis any worse but they DO make the fatigue worse. What does make the numbness and paralysis worse is overdoing it – and that level can change on a regular basis which is what I was trying to tell Sharon but I was too sleepy to make any sense.
Here is what happens to me – it took me and my husband a long time to figure this out – I start improving, feeling better, more energy, legs not as wobbly so I start doing more in celebration of the fact that I don’t feel like a giant slug. But I think I’m smart, I still take naps, I still lie down to rest, as frequently or more and I get crabby and exhausted and whine to my husband that I should feel better because I’ve slept/rested 16 hours of the day. We then go through this process where he picks apart my day and I realize that in between napping I’ve done twice as much laundry as I usually do; or I’ve spent half the day worrying about something (usually my Dad) and that takes a lot of energy; or I went outside a lot and it was hotter than usual. And so on. I don’t realize I’m doing more because I think I’m napping sufficiently but the tell-tale signs are there by afternoon… I change my name to Flopsy, Dropsy and Cottonhead. I probably don’t even need to translate that sarcasm, I’m sure you all know what I mean…
The point being that I think it’s easy to do more and not realize it, add to that a change in routine, even as small as your 10-month old learning how to stand/walk and your body will have to parcel out the energy in a different way. The brain uses a lot of energy so if you spend time juggling your thoughts that is energy not going to your muscles which is why we need sleep – so we can turn that sucker off and let things process and release the energy for our poor tired muscles. 🙂 Given time and not too many changes in routine things usually settle out for me within a few weeks and my body learns how to parcel out my energy again so I don’t trip, drop things, and act stupid all afternoon.
Well… maybe I’d better not brag about not being stupid… 😉
AnonymousSeptember 21, 2007 at 8:51 am
Thanks for your reply.
I do realize that having a ten month old is A LOT of work. And that I have been doing more but I am just confused that I was doing fine as far as fatigue and then all of a sudden I am just wipped! He has been active for the last month and a half. Do you think it just catches up with you over time? Kindof builds up and then wham?
When I saw my neurologist last (which was before I even had my son), he thought I was going to make a full recovery and didnt want to see me anymore.
My hubby doesn’t really get it either and must think I am wonder woman. I try and tell him that when I get tired now it isn’t the same as when he is tired.
It seemed before if I was tired it would take longer to get over but I wasnt THIS tired.
I don’t know how I am going to go back to work too if this keeps up. Plus, my career involves heavy duty exams and studying … not looking forward to that.
Luckily, I dont have allergies.
AnonymousSeptember 21, 2007 at 8:51 am
I would imagine that you are not getting very much continuous sleep expecially if your baby is not sleeping through the night. I know I had terrible hot flashes after GBS which woke me up about 3 times a night. The Dr. put me back on hormones to alleviate the flashes as she felt the lack of continuous sleep was causing me to be more tired. She was right as I my fatigue improved considerably when I was able to sleep through the night.
However, I had a new granddaughter born 6 months after GBS onset. I was afraid to even hold her for fear of dropping her when she was born as holding even 7 lbs was a stretch at the time. I improved and she is now 22 months but when she is at my house for the day I am exhausted from all the bending, kneeling, lifting and such. Getting down on the ground and then back up and lifting her seems to affect me the most.
I highly respect you young mothers who have been afflicted with GBS. I don’t know how you do it. Just be patient with yourself and accept as much help as is offered.
AnonymousSeptember 21, 2007 at 9:15 am
Hi Sharon: It is not so strange really but is the nature of the beast. A year out is not very long and ups and downs with residuals is not at all abnormal. Neurologists apparently like to say you will make a full recovery and don’t need to see me anymore-mine said the same thing and when I mentioned residuals he said he couldn’t help with them anyway. Fortunately I found a doctor who would help me work with them and the answer he gave is the one so often posted on the board-rest, rest and more rest. If you are still tired you probably need more rest, even though your head says you have had enough. Taking care of a ten month old is a huge undertaking. Rest as often as you can and you should start to feel better again. Remember what your body has been through and give it as much care as you can. Best, Jeff
AnonymousSeptember 21, 2007 at 9:38 am
I agree with the other posts, a 10 month old will make a “normal” mom exhausted. When I was recovering my neice came to stay with me and brought her yr old son. He was a good baby but again just active. He made me literally exhausted just watching him play. I wasn’t even caring for him! I needed more naps than he did! I have also realised lately how much energy stress zaps out of you. Stress affects me emotionaly and physically and requires my body to rest more to function. Good luck and enjoy your baby as much as you can as they grow up so quickly.
AnonymousSeptember 21, 2007 at 1:38 pm
[QUOTE=Sharon] Do you think it just catches up with you over time? Kindof builds up and then wham?[/QUOTE]
That’s how it works for me, kind of a cascade effect. I’ll be OK, then I’ll be a little more tired the next day, the day after that I’m a LOT more tired and so on. It’s like having a credit card – you can borrow from the future but you’re going to pay it back with interest and the longer you delay the payback the more expensive it is… :p
AnonymousSeptember 21, 2007 at 3:58 pm
I don’t have much experience with the GBS side of things since I am still recovering, but I would also suggest maybe a trip to see your doctor just to make sure you aren’t anemic or something totally unrelated to GBS. I know children are exhausting, but there are a number of other problems that could cause you to be tired that aren’t children or GBS. It will at least ease your mind a little. Take care, Gabrielle
AnonymousSeptember 24, 2007 at 8:52 am
Thanks everyone for your posts!
You guys ROCK! 😀
It always seems to make me feel more “normal” when I talk on here. Like I said, my hubby doesn’t get it and thinks I am recovered because I can walk now and look almost normal.
I am doing fairly well but there are still some residuals. I guess I just hadn’t been hit with that tired of one before.
But over the last few days I have been catching up on some sleep and I am starting to feel better again.
Thank you guys again!
AnonymousSeptember 24, 2007 at 9:03 am
I am about 18 months post-GBS, and still struggle with energy levels. I now have a 2 1/2 year old, plus a 4 month old, and the two of them keep me hopping (unfortunately, not literally, but close).
With a relatively minor case of GBS, I went through therapy and rehab, and have been back at work full-time (desk job) for over a year. I have even been jogging of late.
However, I have stubbornly learned to accept that this whole GBS thing is not as straightforward as anyone would like. Prior to GBS, I was a sub 6-minute mile runner, generally competitive toward winning running races as a hobby. Then GBS hit, then I felt lucky just to walk again after months with assistive devices. Over time, I got back to regular jogging before work (8 min mile, but still, I was jogging!!!)
Over the past six weeks, neuropathy has returned (in addition to the general weakness) making my legs very, very painful. I am still trying to jog before work, but it is an effort in futility, or my own stubborn nature, as I struggle to complete 1-2 miles, finishing with tears in my eyes due to the pain in my legs from the attempts. As my physician-wife verifies, however, I am more stubborn than most blind and deaf mules, and so I continue to try, regardless of the effects. It is my one way of “rebelling” against this “darn” disease that doesn’t seem to make sense most of the time.
Anyway, experience has shown me that relief and progress will wax and wane, but hopefully we can all continue to push toward improvements over the long-run. If I can offer anything of value, it is that progress may be slow, sometimes it feels like 2 steps forward, 3 steps back, etc … but hang in there.
Wishing you the best,
(Hi to all my friends with whom I have been lax in communication … the past four months have been “busy” … so to speak. Wishing all of you the best as well …)
(Note … I just realized … the picture in the post is with my oldest … hard to think that was 2.5 years ago!)
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