wanting to tell well-wishers to bug-off

I am 7 months post a mild version and I am still not better. I constantly get asked, “you’re better, right?”, by family members. Inside I think, “No I am not better and maybe never will be,” but I just say, “no, I am still having problems” and change the subject. People do not like to deal with situations where people do not recover quickly because that is not how things are supposed to work. It frightens them that it could happen to them. I hear you! Not sure what advice to tell you. You might want to tell them that it can take years to recover from GBS and then maybe they will stop telling you that you should be better in a month!

Hey NGG,

I’ll respond to your post later as I’m at work, but you made me literally LOL!! I’m sure my co-workers already think I’m nuts. I can sense your frustration, however, parts of your post brought much needed laughter to my day. For that, I thank you!! 😀

Take care,

Tina

Martin, Fender, Yamaha,
I have a wonderful Martin guitar that I have not played since I got GBS the second time….afraid my fragile nerves in my fingers might be harmed by it…so I play my piano instead.
Back to your problem…here is how you solve it……tell them the nickname of GBS…it’s French POLIO……that usually sinks in faster….if they are not old eough to know about polio…tell then GBS is what President FDR had and he was in a wheelchair the rest of his life…..so why are they on your case????
I broke my ankle the day my GBS peaked because I fell. The hospital would not admit me for the GBS…but said not to walk on the broken ankle until I saw a bone dctor..I told them I couldn’t stand…..and please don’t send me home….I have no one there to help me…..nope….So my best friend’s boyfriend got me home and in the house..we had to find someone else to help carry me in.. But when I asked him to stay over so I could figure out how I was going to handle not being able to stand, he wouldn’t because His cat TIna would miss him!!! This same guy I let use my house (when I lived out of state )for months when he need somewhere to live. Didn’t ask for any money…..but he chose his cat’s feelings for a night over my need for someone to be around while I figured out IF I could live alone being in such a weak state. And I couldn’t let this stress me out since stress accelerates it.

My daughter has CIDP. Until the seizures got really bad, no one would listen to us, they kept sending us on on way with a person who could not walk, eventually couldnot use her hands, and in the hospital it took a very observant nurse to figure out what I had figured out, she could not breathe, after IVIG and right under their noses. One of the neuros actually had the courtesy to look embarrased in the ICU! Fortunately PE has had some effect, but 2 years later while the paralysis has left, she still cannot walk on her own and her hands are messed up, no small motor skills, AND LOTS OF AND LOTS AND LOTS OF PAIN, which is being poorly handled. Part of the reason is that she is Medi Cal only, most doctors won’t even treat her, fortunately the hospitals must if we go into the ER, which I try to avoid at almost any cost (my cost in $$).

While FDR did have POLIO and could not walk at all (the photos of him standing were defintely staged), [U]I loved the GBS is French polio comparison[/U]!

Yes, we know what you mean, people asking, aren’t you better yet? This is not a head cold or even bronchitis, it is crippling and my daughter, now almost 35, can never look forward to anything close to a normal life any more, too much damage that does not seem to get better, and always wonder if the PE stops will it relapse? There are so many health problems for her and no recognition. I have to fight every year to keep her off jury duty!!!

Hi Northernguitarguy,

I know what you are talking about. I have CIDP and according to my family I look “great”. Unfortunately, I don’t feel that way. From the meds I’m taking they have figured out that there is really something wrong with Dad so they have cut me some slack.

Friends on the other hand do not have a clue. I walk with a cane. It’s made from a tree root and is rather impressive. Since I’m 6’6″ and 295 lbs the cane in both thick and long. When they ask how I feeling, with a smile I tell them I’m doing my best to not knock someone in the head with my cane for asking me how I feel. They usually don’t ask a second time. 😀

I don’t know if that will help you.

Jim C

That makes me laugh, the knocking people in the head with a cane part. My husband is 6’8″ and was your weight, but has lost a few lbs doing yard work and chasing after 2 little kids. Glad to see there is a tall guy on here! 🙂

I’m back 😀

Hope you don’t mind if I call you NGG, but I type for a living and I’m usually tired at the end of the day.

No, I don’t think you’re being overly sensitive because it is annoying, especially as no one want/need constant reminders of their illness, residuals, whatever. I’m sure people mean well, however, they probably don’t know what to say.

I’m not sure how long it’s been since you were diagnosed with GBS, however, I’m 19 years post GBS. Initially, I found myself sounding apologetic because I was no longer the same, healthy, go getter, athletic person everyone knew. I know that sounds crazy, but that’s how I felt; like I did something wrong by getting sick.

Now, I’ll raise an eyebrow and people tend to back off with the constant questions. I recently started wearing an AFO as I have foot drop on the right side. The AFO has been a Godsend as I’m no longer using the wrong muscles to walk and my back pain has almost disappeared. The questions started up again; how long will you have to wear it, etc. Or, in the case of my well meaning sister who goes into a tizzy if a hair is out of place “you couldn’t find capris long enough to cover that brace”? Um, yeah…..”that brace” has helped with the horrific back pain and vanity went right out the window”. She shut up PDQ (pretty darn quick).

So, rambling aside; if it’s the same people tell them “I’ll advise you when/if there’s any significant change, I promise”. Breathe, give them a polite smile (refrain from patting them on the head) and they’ll eventually get the hint.

The “Google” experts….well. Count to 10, breathe, smile and nod politely, until they too get the hint. Of course, people will draw their own conclusions at your reaction, but that’s their problem, not yours.

These days, I’m pretty blunt, but I don’t suggest you chose this route as I’ve alienated a few people. It wasn’t a terrible loss, but I’d hate for that to happen with someone you truly want in your life. 🙂

Take care,

Tina

Good talking with you. As to the well wishers, I just tell them I’m tired and need to take a nap.
Harry

To Tina
Pride and vanity disappeared along with the feeling in my feet. Someone said to me today at work, think you’ll be losing the cane soon, I told them I lose it everytime I put it down so I do not let it get to far away.
Harry

Actually crying is good for you…..it release toxins, negative energy, etc.And it sounds like telling your friends has not worked. Perhaps if you let go with a total breakdown cry, it might get your message across!!! Like the old saying goes, Be Grateful if they call you crazy, because it gives you such leeway!!!!

Nicsmom,
I did not personally make up that comparison about GBS and French polio. I was actually reading a health book and the heading said,
Guillain-Barre syndrome (French Polio)

Hello Guitarman:

You ain’t seen nothin yet – as the saying goes. Wait till you encounter the person who says [B]”it could be worse”[/B] and then proceeds to tell you about someone else! I had a person I know for years who compared his broken ankle to my condition telling me he knew what is was like to lose his independence.
Keep telling these people you feel like s**t until they get the message. It some cases they may never get it. Cut some of the others a break – because they just don’t no what to say. And remember this – there are people here who know how you feel – keep your chin up – each day will get better, albeit agonizingly slow.

[QUOTE=Harryb]To Tina
Pride and vanity disappeared along with the feeling in my feet. Someone said to me today at work, think you’ll be losing the cane soon, I told them I lose it everytime I put it down so I do not let it get to far away.
Harry[/QUOTE]

Good for you!! I’ll bet that shut them up right quickly.

I have been fighting this dreaded disease for 10 yrs and if one more person comes up and asks me if I have tried this or that I will scream!!! My favorite is the person who said if I were you I would not take this sitting down ( I was in a wheelchair) I told her really?? Cause I am just loving this!!!

My other favorite is ” but you look soo good” So what am I suppose to look like **** to prove I am sick??

Most days I can take it and laugh and other days I just want to give people the finger…. I have found it best to stay home!!

Keep up the fight!!

I simply printed out basic info from the NIH on CIDP and the Mayo Clinic on CIDP… mailed it with the Christmas cards! No one has questioned my problems since! BTW here is the NIH synopsis of GBS:
url-http://www.ninds.nih.gov/disorders/gbs/gbs.htm-url
IF that doesn’t get any dents in their craniums, use your cane? {of course I’m being facetious, but….it’s good to imagine at times. :rolleyes: }
I truly don’t advocate physical violence, tho…just imagine it at times-IF I had to? I’d truly fall over and break something new! Highly undesirable.
BTW? I got that ‘reaction’ you got, when I was diagnosed with Cancer. And, I got it from nurses in that cancer ward! Go figure.
Keep a good and wry sense of humor about it all. Nothing gets you thru it better than the “WHAT THE Fudges?” you encounter. And, THEN they go on and on about what a good ‘attitude’ you have? Don’t push any buttons on me here! I suspect I’m not the only one who would react.
But, when the docs pull that ‘you look soo good!’ I can and do get truly steamed! Surpise them keep them on edge and maybe they’ll work for you!
Keep faith and hope in yourself and in finding some relief, soon.

I’m in the funeral business and have found that answering questions about how I am doing with “When I finally get to the grave I’ll be OK” brings a smile to both our faces! 🙂

I hear it all the time. If you were not in that wheel chair no one would know you had anything a wrong with you ! I like the one where everyone or most everyone mentions a job that I could do while in that chair. They don’t know I can’t set for more than 1 hour, thats on a good day, and then I have to go lay down on my side because setting up too long kills my back, and so I have to lay down on my side to get the pressure off my but and back so it will quite hurting. Oh yeah…well, your color looks so good and you look so strong and healthy.
All this kind of talk does for me is bring back memories of me visiting someone I have known has died and I go to the funeral home to pay my respects…when I am well enough to go.
I hear people filing by the casket say, “He, or she, looks so natural”. Or,
their color is so good”. Hears another one I hear all the time too, right along with the others I have mentioned. He, or she, says “They don’t look like they have ever been sick a day in their life”. Hears another I hear while visiting, He, or she, don’t look that old at all. LOL 🙂
Folks,get used to it, because they will be saying all the above about you while you are laying in your casket deader than a door nail ! I hope to goodness I don’t look soooo natural when I am dead, and I hope I don’t look like I have never been sick a day in my life. I hope I don’t look natural, because that means I look pretty bad for the past 20 years now ! lol 🙂
MallardDrake, I know you have heard all of the above in your line of business.

Drummer, I almost died laughing at your post. :p I’m sure all my neighbours heard me. Same with you others, thanks a lot for posting your thoughts on this subject.

NGG, at least they care enough to comment. It could be the other way around; they could just ignore you and expect you to be as before. But they won’t really understand unless they get a whole lot more knowledgeable or if it happens to them; that’s just human nature. If they’re still talking to you about it, it’s your chance to clue them into the facts; because otherwise they’ll relate to you in complete ignorance about your condition, and that’s even worse that dealing with stupid remarks. I was just thinking today that I’ve been in constant pain in varying degrees for nearly 3 years, and though I’ve got more used to it all, pain is still painful. Maybe we should all wear badges or get T-Shirts made with GBS slogans. :rolleyes:

The trouble is that GBS/CIDP is way too unpublicized; too much ignorance on the subject, and lots of misconceptions due to the sketchy, misleading info pamphlets supplied by the medical field.
Well, we’ll show them, won’t we? One way or another. That educational info in the Christmas card is a good idea. Anything to clue people into the facts. People usually have a certain pattern of dealing with the problems or misfortunes of others. Delay, deny, under-react, over-react, say the wrong thing; that’s because they don’t know what to say or do in the first place.

2 3/4 years into GBS/CIDP and I’ve been adjusting to playing my musical instruments. Hands are getting stronger since onset, but very slowly; ability and concentration is still unpredictable, but I find it’s better if I take a day off between practise. I can’t play every day; sometimes it’s there, other times not. Today’s practice was really pointless and frustrating, after gardening yesterday…I spent 7 hours in the yard and garden doing work that would have taken me 1-2 hours before; didn’t even notice the time passing, just plodding along trying to get a few little things done. Today, couldn’t play hardly at all, lots of mistakes, so weary, lots of pain. Tried some simple stuff…same thing. Rest is what I need…about 2 days or so doing something else to give the muscles some time to recuperate. Having more trouble walking today too, even with the rollator. Had to ‘bench it’ twice on the way back home from the down-town errands.

But the front of my place looks decent at last, so it’s worth it to me. I guess that’s the trade-off now; life goes on, and whatever you still want to do will come with a cost; but that’s the way it is. So we’ve still got choices; but we have to factor in the pain and exhaustion that comes afterwards. But still, life is good. This year, I’ve come to realize that I won’t ever be the same as before, so in order to still enjoy life and be able to cope, I’m prioritizing and simplifying and downsizing everything about my life. I want to be able to manage it all better, and still find some joy in daily living, not just be overwhelmed by the multitudes of tasks which are now difficult and painful to do.

Anyway, here’s hoping the people you know will smarten up and quit bugging you, and smarten up even more after bugging you. 😉

I used to mess around with one when I was a teenager…that was about 41 years ago now.
May God bless you with a full recovery…even tho that seems impossible. The new-comers to this syndrome have alot better chance for a better outcome than those in bygone years. Great strides have been made for a more positive outcome.

You know the term “I Know That Feeling”? I think we all do, but I find myself telling people I want to train to be a carpet inspector. That’s why I keep falling on my face. But seriously, I feel that it is best to say I feel great helps. It stops the questions dead in their tracks.

Almost 3 years with GBS and the most expressed term from everyone that knows me is “you look good”.
My reply – “thank you, I feel good,” “just old, slow and crippled.”
I say it in a humorus way, it’s taken that way and we get a good laugh.

Shirley

I love your comment ” I’m trying not to knock some one in the head
with my cane,” when asked “how are you feeling”. I feel the same way.

Love, smitty

I hear you. About people asking “you are better, right?” And ” you look so good”. We all get sick of people asking about your illness, & trying to explain it. The only people who understand it are people who have it themselves, or their families have it. Our fairweather friends will soon be gone.

I have hit people with my cane, & I see my shrink every month. The people I have hit were church people who keep wanting to touch me, when I have told them many times “please don’t touch me I hurt & can’t stand to be touched”. Some one described it as “I feel like my skin has all been sanded off & anything touching me feels like broken shards of glass.”

People at my church, who have known me for many years, & have seen me slowly go downhill, are the ones who make those stupid comments. Now I’m in a wheelchair, & have been asked many times “are you up walking around”?

Love, smitty

Smitty, I love your honesty, but you really have to try to avoid a lawsuit on top of everything else, you know. 😉
Seriously, people say these things cuz they care, and they’re also really dumb.
They listen to what you say, then put their arms around you to give you that church-hug so you’ll feeeel the love, then take hold of your hand and pressssssssssss and squeeeeeeeeeeze it to make sure you know how supportive and tender they really are.
Just get a badge that says: “My skin burns like it’s being salted by the fires of hell; so don’t touch!!!”

I’d describe it as being bitten by a million mosquitoes at the same time.

wow TINA i know exactly what u mean when u said u feel apologetic… im the same way, ! i also find myself apologizing for being tired or not always smiling.

northernguitarguy i thnk all of us have delt with our faie share of well wishers and thers not gona be anything you can do to make the annoyance go away… i have found that with close friends and family people u talk to or see every day. i give them this story if they care anything about u and how ur actually feeling they will read it. if they do they will understand and then i finde often the questions slow down or stop… i found it the best way to explain to people how im feeling people who haven’t experienced it before.

hears the link. its “the spoon theory”

[url]http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/[/url]

When someone casually asks my husband,”How are you?” he responds “Better than I deserve.” Folks give him a quizzical face and ponder what he just said. It is usually just an opening comment. I don’t get hung up on it too much, until folks ask, “Aren’t you better yet? You look so good I just can’t believe your not.” I just tell them I don’t go out when I feel bad. That kind of stops it. I’ve got lots more to conquer than thoughtless comments. I remember people saying brightly to my daddy, “Oh George, you’ll be up and about in no time! – this after he became bedridden for months, and prior to that an increasing progression of limping, then foot drop, then a cane, then a walker, then a scooter – finally the hospital bed at home. It took 20 years, and he just hung in there with the, “I’m fine.” It worked for hime and it works for me – but I am getting better with time, rather than worse.