I need to vent

Sometime you just have to shout or you feel like you will lose your mind. Don’t worry about it. Everyone here is ready to listen when you have to tell someone.

Hi Tim, you whine as much as you like, it’s better out than in. It can be so frustrating as nobody knows what it’s like to go through this unless they’ve been there themselves. You’re right it’s not an overnight process and just because we tend to look o.k on the outside doesn’t mean the inside has healed yet. Have you tried a family meeting? or is that a no-go zone. Stay positive and you’ll get there in the end 🙂

Hey Tim
I Was Diagnosed In Sept. 06. Balance, Coordination & Stability Is Also Affected, I Just Returned Back To Work Lite Duty. I Know Its A Hard Road When People Around You Wont Take The Time To Educate Themselves About Gbs. However, You Must Not Give Up On Educating Them Yourself. Go To Google And Search In The Video Category And Look For Lessons Of Guillain Barre Its An Informative Video, Hopefully You Can Get The Family To See It. I Know It Can Be Frustrating At Times But You Cannot Let This Beat You. It Will Get Better, Nerves Are Already Bad And Stress Does Not Speed Up Recovery. You Must Stay Focused On Your Road To Recovery. I Was There Too A Couple Of Months Ago, So I Do Understand What You Are Going Through.
I Made My Family Watch The Video & I Read The Information About Gbs To Them.
I Hope This Reply Is Helpful.
May God Bless You & Your Family With Your Recovery.

Tim here is a Huge Hug!!! i know what you mean, been there and still stuck there. you really need to just put all your energy into you for now. i know how hard it is to do that but its harder on you if you just stress out over there shortmindedness. you don’t have anything to prove to them, they will eventually come around if they see you taking care of yourself. whine as much and as often as you want! take care.

Tim,
I wish there was something i could do or say 🙁 . Its is extremely difficult trying to make family understand and a lot of the time trying to educate them falls on deaf or uninterested ears.

tim,

venting is fine! i brought up a thread that you need to look at. it is called ‘pain & fatigue explained by dr. parry’.

[url]http://www.gbs-cidp.org/forums/showthread.php?p=33282#post33282[/url]

rest/sleep as soon as your body asks for it. the heck w everyone else. it is the fastest road to recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

hi tim. i’m so sorry you feel this way. a lot of us have lost friends and even family members who have distanced themselves from us because “we dion’t look sick”. they don’t want to hear about the constant overwhelming fatigue, pain, discomfort and depression because we can’t do what we used to do. that’s what we’re here for. we will NEVER turn our backs on you, and we REALLY do know what you’re feeling inside.
i’m 5 1/2 years post gbs and i lost a friend of over 35 years. she saw me during my chemo. and i.v.i.g. and couldn’t deal with it i guess. i try to say i don’t need friends like that, but it still hurts. especially when it was a life long friend. please feel free to vent, whine, scream anytime you want. please stay well. you’re in my prayers.
with much love,
deb

Tim,

We understand. This site has been a Godsend for me as my (our) friends here are the only ones to relate to what is going on with these residuals. Even a new neuro I just went to doesn’t seem to get it. Please know in your heart you are not alone!

Hi Tim
I know what you mean. Each week when I go to church, everyone keeps telling me that I must be better, because I look so good. I found a little sign that I look at each day to try to keep my spirits up “This disease must do wonders for my appearance. Everyone keeps telling me how good I look!
It is hard, because my children doesn’t understand that I am just tired all the time.

We’re glad you let us know how you are feeling! Don’t be too hard on your family — as Chrissy said, drs. don’t even “get” it. The only way you know is when you experience it yourself.

Wishing you better days ahead!!!

Tim,

What you are dealing with is something most of us experience, but I know how frustrating it feels.

Most people who know me aren’t aware that I have residual problems. I don’t talk about it, because I know that they can’t relate, so I keep quiet. We all have to arrive at our own way to handle it, but this way seems to be less stressful for me than trying to explain constantly.

When people don’t understand, I try to remember experiences that friends or family went through that I didn’t understand, until I went through the same thing myself. I look back and think how uncaring or impatient I must have seemed to them at the time, before I’d had the same thing happen to me. It helps me to forgive and be patient with the people I encounter now who don’t understand what I’m going through.

I hope you can find some peace of mind with this. I know how hard it is to arrive at that point.

Best wishes,

Suzanne

Hi Thray – we’re all with you! Do you have a family member or friend who “gets” it? If so, perhaps that person could be your advocate right now. Sometimes the exhaustion and/or depression does a number on our brains (at least it does to me!) and we can’t communicate as well as we would like to. I know this is frustrating for you – you’ve got enough to deal with just trying to heal. My husband, who used to let me handle “the family”, has become so fiercely protective of me that I don’t recognize him! I hope things work out for you, but remember that you can always vent/whine to us! Good luck and good health!

Hi Tim: My favorite was a “friend” who asked me why I was clinging to my disease-didn’t I want to get better. I should just let it go and get on with my life. I tried to tell her this was my life, but to no avail. thank God my wife understands and communicates a lot that I cannot and especially to my grown children who want me to be better and can get upset when they see me using my walker or in a wheel chair after 2 years. I think family so want us to be better that they don’t want to know the truth-denial is not just for those of us who have the disease. The most important thing is to follow your own needs and take care of your body and your mind, no matter what. I wish you the best. Jeff

My “Two Cents” worth. Just started home health IVIG after 2 full years of 3 infusions every other week. I simply collapsed after the last ones I drove home from-and I was driving at the time…..
One of the nurses works at the clinic and she is coming to help give me the IVIG at home. She actually asked last week if I was going to be returning to work soon. Okay-I’ve gone from driving to not being able to drive-so I’m suppose to be getting better?? I said I really didn’t think I would be working. Who would hire someone who can only work every other week and for 4 hours a day if that. One doctor asked when the CIDP was going away-I set him straight.
Families can be in major denial-I have a physician and a social worker as siblings-they don’t get it at all. One told me I needed to volunteer and the other said it was probably all in my head. I’ve heard this alot from other patients-their family told them the same thing. A friend sez I get so grumpy after my infusions definitely doesn’t want to see the IV equipment in my house. I think some folks think it’s catching like the flu.
I have found my cat is my greatest friend-he doesn’t ask dumb questions and lets me do what I feel like. We both enjoy heavy napping.

Thray, I’m your neighbor from Jonesboro, AR. I had GBS 2 1/2 months ago and I know how we look is not how we feel. I now walk normally(thank goodness) and only look gempy in afternoons when tired. I’m going back to work 6 hours a day next week and it will be hard even though “I look great”. It will be like running a marathon everyday. Then I will come home to 2 young children to my second job. My Dad who is a doctor has tried to get me on my horse twice now and says “just try you can do it”. Well I don’t just have any horse-I have a barrel racing horse-not a slow easy ride. I don’t even have enough quad strenth to get on much less ride. It just makes me feel bad when I have to admit my limitations. I understand what you are going through. I got alot more understanding when I had a caste on my ankle few years ago. People forget I was paralysed 2 1/2 months ago and almost died. My legs don’t forget!! Good luck with your family. I will be in LR in July for the Family Practice meeting and would like to meet you and show you my family. Shawn

😉

I was unofficially diagnosed woith CIDP in mid to late january since then it has been an uphill battle getting treatment and I have still not been successful. I am fortunately getting to see a neurologist that may have seen this before. I have been ill for a long while at first my entire family and friends did not get it then my mom and dad who witnessed my symptoms got it and at times they forget but they get it.

Thray give them time but most importantly do what feels right for you if your feelings tell you this is something I should not do then you have a duty to act on them. Your feelings are your best guide listen to them and even if at times they seem like they misguide you they will still take you to the exact place you need to be i.e. to possibly learn a lesson of life and recognize that lesson was necessary in what may come in the future.

I have been really angry the last week and overwhelmingly frustrated and I began seeking help and support from folk on here and in my circle. Seek help and find friends who understand this forum is amazing and you will find that help will come to you from places you least expect it to.

I wish you a speedy recovery .:)

Hey Tim, try not to let your family get you down or stress you out. As everyone says you may look ok on the outside but noone other than yourself really knows how you feel on the inside. Has your family read anything about Gbs/Cidp? Maybe they need to so they will get the big picture. Try to stay positive and don’t let anyone bring you down. Hang in there and always remember that you have your other family right here waiting to help in anyway we can. Good luck and hugs to you. Dawn C.

Tim,

Hmmm… I got an email that you posted, but now it is not here. You must have deleted it?!?! I’m worried. You can email me direct at [email]cvelte@cox.net[/email]

Tim,

I’m so sorry to hear that your family has taken their anger out on you. I hope when things calm down that they will reconsider what they have said.

Please don’t do anything drastic right now. Decisions made in the heat of passion are usually not good decisions.

Meanwhile, remember that you have people here who understand and can be your support system, even if family can’t be right now.

Hugs,

Suzanne

This is the thread Ive been looking for!!

My wife and I have had a such a hard time lately, because Im so tired and hurt that I withdraw from everyone and crawl into my cave (the guest room) and ride the hard days out with my medication and my computer.

My wife’s point is that she is lonely–and she is. Truly. I know it, but I am limited in my ability. Logically she knows that, but that doesn’t ease her loneliness and the hardship that comes from having 4 kids between 2 and 10 years old.

So, I wish there was a place where GBS couples (where one has it and one doesn’t or unless, God forbid, both have it) they could go for a break together and renew themselves and strengthen their commitments. In a day when it seems like all my email inbox gets is ads regarding male virility and when I watch fooball, I have the great players owning up to E.D., etc…and I sit there laughing because between the GBS and the narcotics and sedatives Im taking, sex is unlikely. 😮 Oh, well for me, but my wife wants her life and her husband back.

It finds us everywhere, this thing. Too tired to go to my kids activities, the guilt of not going and then you have a good day and you don’t look sick and people don’t understand why your herculean effort to load up the kids and go to the park…and people don’t understand it.

i’ve decided that we should paint ourselves green.

“Look Mommy!Look at that poor green man…”

God Bless You as you fce this stern test…

Ty

I know a lot of you have problems a lot worse than I do but I feel if I don’t vent a little I will crack up. I am sitting here at 1:30 in the morning hurting all over my body and unable to sleep. I just want to cry. My neuro. is just accepting that it might be the GBS/MF that is wrong with me, but have been unable to make him understand I am hurting so bad. They don’t want to give you any strong pain medicine, because they don’t think you are hurting that bad. What do you say to the doctors to convince them? I have to be real furgile with my visits. My husband pays $900 a month for health insurance and we still have to pay so much out of our pocket. Husband only makes $2000.00 per month so you know where that leaves us.The pocket is not very deep. Yes, I am depressed but they want to send you to a mental health professional who wants $260 per visit and the insurance will only cover 50% for mental problems. What do you do? I need some help how some of you got your doctor to believe that you are hurting that bad. I know I am whining a lot but I am just so down tonight and don’t know which way to turn.

Sorry to hear your feeling bad but we all can get that way. First I’d try to find a dr (neuro) who is going to listen to you. You and only you know what is going on with your body. What type of tests have they done to think its GBS/MF? I realize it is quite costly for dr’s and specialist but this is your health too. Does Mississippi have any state health aid that you could apply for? Hell its worth the try and who knows you may qualify. If you don’t want to switch dr’s I’d be calling the one you have and explain to him how much pain your having and request some pain meds. As far as mental help you can get that here from all of us. Your not crazy and everyone gets depressed especially having this diease. Try to keep your chin held high and remember things do get better just at a slower rate. Visit us often because it does help knowing people care and understand what your going thru. God bless and remember we are here for you thru the good the bad and in between. Take care Dawn C.

Dawn
Thanks for your words of encourgment. I had GBS/MF about 20yrs ago. The problem was I had a dumb neurosurgeon who kept telling me that I had Bell’s Palsy. It was not until about three years later when I kept getting worse, falling, numb feet and hands, fatigue, and some medical friends saying that it sounded like MS that I went to a neuro in Hattiesburg. He told me that 99% I did not have MS but that I had GBS/MF and that it had left me with damages, example: eyes that won’t close all the way, slurried speech when tired, arms and legs so heavy, can’t hardly lift. He told there was nothing that could be done since so much time had passed. I have lived with this through the years and it getting worse. I have gone to several neuros but blown off with same message. Finally, I have got so bad that I could barely walk. Last Sept. I went to a neuro here in Laurel and he ran every test possible, and told me that he had never heard of residuals from GBS/MF but he had no other reason for it. That I had major nerve damage to my legs and arms and all he could say was that it would only get worse. I applied to my great state retirement teacher insurance for a scooter or electric wheelchair with backing from the doctor but was told if you can walk enough steps to get to the bathroom or kitchen, then you don’t qualify. The doctor told me that I needed to keep walking some but as I told him, I wasn’t going to scooter or wheelchair all the time. It would only be to go long distances.
My walking has improved some but now it feels like every bone and muscle in my body is breaking. I am trying to set up an appt with him. Been waiting until the deductable would be so high because dr office wants all their money at one time. I guess I am being a baby about this but for years I thought what the doctors had told me, it was all in my head. You feel like you are crazy and even now my grown children cannot understand the problems that I am having. I found this forum about a month ago and it has been a god sent to find other people going through the same thing, that I am. Thanks for listening to my ramblings and pity party. Also have a 82 yr, old invalid mother-in-law living with us in a 3 bdr trailer. She never has like me but we didn’t have any choice. Our state said she got $15.00 to much from a small retirement and social security to qualify for Medicaid.

Hi Tim,

I’m still groggy from sleeping 12 hours after a wonderful massage (deep tissue and Reiki), but something jumped out in your post. Some of the things you said reminds me of when I was on Cymbalta last year and my mind got really twisted. I hope you are not taking that anymore. I’ll write more later.

I truely understand your problem. I have been a stay at home mom of 2 little girls and in 3/06 had a paralizing case of gbs. The understanding and help was there for me for awhile, but it didn’t take long for most to forget what you were just through and how it still effects you everyday. My husband tries to be understanding and helpful but often forgets why he needs to be. We will have our fights when the laundry piles up or the house is a mess because I just can’t get up and do it for days at a time sometimes. I try to be patient an understand that even with all he has read and seen he (with the grace of god) will never fully understand how true disabling this can be. But I have found that being very up front and firm about how I feel on a daily basis may not make him understand but it make me feel better just to say it to him and say it loud and clear, “No I am not feeling well and you will just have to deal with it!” Hope the days get easier.:D