I’m new too!

Welcome LindaG! You’ve found a “family” who really does understand what you are going thru 🙂 I am sorry that you had to experience the inadequicies of the medical community but there are good people out there ~ we just have to find them (what a challenge when one feels so poorly and scared 😮 ) I’m glad you’ve found help here. Please tell us more about you and vent all you like about this “stuff” we all deal with in various ways. And know that you will share with us info that will be helpful to someone. Again, welcome.

Welcome Linda,

The subject of people not understanding or thinking we are faking it, is a topic that rears its head often. Just so many posts on the forum it probably just slipped by. A very big problem is the fact that so many family members and close friends of the patients dont understand, even though they have gone through the initial ‘bad’ part of the illness. We wont even go into the fact that doctors think we are faking it to. Unfortunately some families have split apart because of this, and I speak with patients everyday who are depressed and frustrated because of the lack of understanding from those around them. A great many dont understand that its not a matter of getting over something like flu. Problem is that so many of us look ‘normal’ to a degree, and if I didnt suffer from post symptoms, I’m not sure I would understand that people go through this.

Hi LindaG, Welcome to The Family. There are alot of drs who never dealt with GBS/CIDP before, those are the ones who really need updated education. Alot of Us have heard the its in your head, just anxiety, depression etc talk, just know there are actually some drs who really believe patients and actually care about patients. Feel free to ask any questions or just vent when you need to, we understand where your coming from. Take care.

Linda,
I think it’s something we all experience at some point but I try not to dwell on it much. I sort of look at this experience as an opportunity to whittle down my “friends” list – those who think I’m faking it or lazy are automatically off, I don’t have the energy to waste explaining it to them. Those who say “but you look so good” deserve education but I try not to overwhelm them with the minutae of my daily gripes. Those that say “you look better but you still don’t look like you feel good” will get a share of the lottery if I ever win it.

And then the other side of the coin is – those people who treat you as if you are mentally ill because you are physically ill. Now that’s even more annoying than the people who think I’m lazy or faking it.

Sometimes I tell people that I wish they could walk a mile in my shoes but that it would take them too long and they’d fall down a lot. 😉

Try to have some patience with people who have never been this sick – they truly cannot understand what your daily life is like even if they live with you and see you all the time. I might be sitting there looking perfectly normal but my right eye is completely blurred and throbbing, my foot is tingling and I feel like I’m going to fall over – they can’t see that, especially because I do try to hide my symptoms most of the time.

And keep coming back here to vent, most likely someone has been through it and has decent advice for you – maybe even me! 😀

Julie

welcome! This forum really is a wonderful place.

I agree with the “you look normal” and others not understanding. When I am feeling awful due to residuals I feel like I am whining or that my family thinks it is an excuse to take the day off. Which I shouldnt because even when I was at my worst I tried doing everything for myself and broke down when I had to ask for help. I stick pretty close to home…except for errands….so I usually dont have to explain myself to anyone but immediate family.

I was thinking of water workouts myself. I have heard it is great for GBS. Let us know how it goes. It is so good you got treatment so quickly and have done so well!

Lori

[B][I][U]Hello and Welcome LindaG![/U][/I][/B] I am glad you were able to find this forum. You will enjoy the water exercises and the freedom the wonderful feeling you get from being in the water. Just be sure not to do too much. When you get out of the water you will feel gravity working against the GBS. I am glad you are doing well. Keep up the good work and keep life possitive!

Welcome Linda,

I was diagnosed with GBS nearly 16 years ago and still have “family and friends” that think I’m faking it or trying to get out of attending functions, etc. After years of trying to make everyone else feel better by overdoing it and suffering the consequences, I stopped. Now I go to work, run a few errands and if I have the energy to do anything else that I want to do, I will. I rarely explain my position or apologize if someone is upset because your health is more important than anything else. As Julie stated, let them try to walk a mile in your shoes…or better yet, let them try to walk across the room.

Be well,

Tina

[QUOTE=LindaG]In all the discussions, I note one important aspect missing. The frustration with people who don’t understand the disease; or worse, the people who don’t believe you have problems and are just faking.[/QUOTE]

[B][COLOR=”SeaGreen”]welcome LindaG…….I went through the same thing with my immediate family. After 2 or 3 weeks they don’t think you’re “sick” anymore. Chin up. The one’s closest to you will adjust and learn…..those that don’t weren’t that close to begin with. Water therapy will be great for you. Just take your time and don’t push too hard. Everyone here is pulling for you to get well![/COLOR][/B]
🙂

Welcome to the forums LindaG!!! Nice to hear that you are progressing so well in your recovery. Keep up the good work! I wouldn’t worry to much about those who just don’t get it. This can be especially hard when someone you have really felt close to in the past, just isn’t there for you any more. Just remember, for all those in your life who just don’t seem to understand, there’s a whole bunch of people on these forums who do!! So post often. We love to hear how things are going, good or bad!!!:)

Welcome…I too just joined the forum after reading posts for a few weeks. There is a wealth of information, support and compassion.
I can relate to people not understanding what you are going through.
I had several people ask me “come on don’t you want to get up…you will feel better if you get out and get some sun on your face.”
When all I could think about was how am I going to get that cup to my mouth when my arms will not work. I could have cared less about the sun!!Welcome again!!!

Ok this is so rare I had to post it – yesterday I was feeling pretty bad but I had to go to the grocery store anyway – you can’t live without toilet paper right?

I drug myself around the store and after check out time this ancient fellow bagged my stuff up. I came to take control over the grocery cart and haul it out to the car when he said “it’s OK miss, I’ll load your car for you, I can tell you don’t feel good.” I was kind of embarrased to burst out crying but it’s SO RARE to get that kind of positive attention I was shocked. Plus he looked as if he could barely lift a bag himself!

Man I plan to savor that memory when some snot-head soccer mom whips in the handicapped parking ahead of me, or runs into the back of my ankles with their grocery cart because I’m walking too slow. There ARE nice people out there. I found one and I’m adding him to my “you’ll get a portion of the lottery if I ever win it” list. 😉

Hi Linda and Welcome!

First I have to comment on Julie’s heartwarming post. That was so great!

I just had a conversation the other day with a friend of almost 20 years. She has recently been real short with me in conversation and I called her on it. She said I am always complaining how something hurts, and on and on, and that she has felt that way and many times way worse, and on and on. Big time frustration. I have plans with her this Saturday night and I’m thinking that this may be close to the end of us doing things together. I think since 10 years has gone by, everyone must figure I should be okay and I am just whining.

I don’t know what to say about “they just don’t get it”, but we have each other here! And this forum is priceless. I haven’t been around here the past couple of months much as I seem to go in periods when I don’t even feel well enough to write. It’s been a long hot summer and I am ready for a cool down!!!

Take Care,

P.S. You may notice our join dates – this forum crashed last summer so May, 2006 is very common.