Things I wish they knew

Sounds good Alison – I’ll add the folllowing…

It does NOT help to rub my feet or hands! In fact, it only aggravates the pain and pins and needles sensations. This one really bugged me because my mom used to try to do this and there were occasions it actually made me want to scream. When I would tell her not to do it she would get her feelings hurt. There is nothing personal about not wanting to be touched – it just hurt a lot.

Also – I would have loved to have someone come do my hair so I didn’t feel so disgusting. Add to that leg hair removal. 🙁 I hated all those doctors looking at my furry legs after weeks of being unable to do the most basic things for myself…checking the lack of reflex (yup still nothing) and poking me with those needles (nope still can’t feel that).

Anyone else?

Oh Gosh…I have to add that it doesn’t always help to do everything for the person that is ill. Ask if they want help first.

There were many times that I wanted to try to do things on my own (even if it took me 10 times longer) rather than have someone help me. I hated feeling so completely dependent and I wanted to get those muscles to learn to respond again. I didn’t like having everyone fussing over me like I was incompetent (well, okay, I was for a while but I still wanted to try).

Thats why I added it…I figured there must be more people who felt the same way. We can’t be the only vain ones out there. 😀

Besides, with the massive weight loss I had and the muscle deterioration – I felt bad enough about myself to add that to the mix. It would have been a nice pick me up. Not sure if I could have tolerated the touch but I probably would have put up with it just for the satisfaction of feeling a little more normal again.

[QUOTE=2pznapod]Sounds good Alison – I’ll add the folllowing…

It does NOT help to rub my feet or hands! In fact, it only aggravates the pain and pins and needles sensations. This one really bugged me because my mom used to try to do this and there were occasions it actually made me want to scream. When I would tell her not to do it she would get her feelings hurt. There is nothing personal about not wanting to be touched – it just hurt a lot.

Also – I would have loved to have someone come do my hair so I didn’t feel so disgusting. Add to that leg hair removal. 🙁 I hated all those doctors looking at my furry legs after weeks of being unable to do the most basic things for myself…checking the lack of reflex (yup still nothing) and poking me with those needles (nope still can’t feel that).

Anyone else?[/QUOTE]

Frank couldn’t stand to have his legs and feet touched either, the pain was so incredible. If we even bumped into his bed, he would yell with the pain it caused. He had the pain that would shoot up from his feet and go all the way up into his stomach. We had to be very careful where we touched him.

[quote=ali]Oh Kathryn I remember is talking about the hairy legs! Before it all came out in the open, I remember not mentioning it to anyone because I didnt want to seem too vain. [/quote]

Oh my God, that is so eerily reminiscent! I have been on the GBS board for 4 years and don’t think I ever heard anyone complain about the hairy leg situation, but it really really bothered me! It mortified me so much that I created an online blog titled, “Because I Have to Shave My Legs …. and other reasons I sweat the small stuff” where I detailed all the [B]little[/B] indignities of dealing with GBS. We all know the big ones, so this was just something where it was okay for me to rant about the stupid stuff without feeling petty about it! :p

Oh, and yes, I did start the other thread, basically with the same premise. [B]I wanted to let [U]caregivers[/U] know some things that a GBS patient might not feel comfortable telling them.[/B] For me, I ranted the most about being treated like a hat rack or something when I was in the wheelchair. People would just put their coats and purses on me so I could “hold them” while they did whatever they wanted to do. Man that was the easiest and QUICKEST way to set me off! 😡 Usually if someone did it once though, they didn’t try it again. 😉

That thread kinda devolved into [I]nursing[/I] horror stories, which I think is really a completely different issue. It’d be great to keep this limited to advice for caregivers – [B][I]friends, family, parents, kids, etc[/I][/B] – since those are the people most of us have trouble telling this stuff to! They are already helping so much, you hate to feel demanding by telling them more things.

It would work out so much better for all involved if we could just hand a list over to them and say, [I]”This was on a GBS message board so I figured I’d give it to you. I think it has some information for caregivers on how to help patients.” [/I]

Then [B]you[/B] are in the clear, you don’t have to feel guilty, and your caregiver will learn something that will avoid discomfort or arguments in the future. 🙂

[quote=Brandy]Frank couldn’t stand to have his legs and feet touched either, the pain was so incredible. If we even bumped into his bed, he would yell with the pain it caused. He had the pain that would shoot up from his feet and go all the way up into his stomach. We had to be very careful where we touched him.[/quote]

I think most caregivers would be shocked at how painful ANY touch can be. I know MANY of us on this board spoke of how our feet hurt so much we couldn’t even stand the feel of a [B]sheet[/B] touching them. Having someone rub them would have had me screaming! 😮

I remember being so drugged for the pain that I couldn’t scream (out loud) when someone rubbed my feet because they were “cold” so I ended up doing it in my head. 🙁

I think a lot of the little things for me were about just feeling human and in control again. My body felt like it didn’t belong to me anymore, and it certainly didn’t respond when I wanted it to, so being able to feel better about being stuck inside it was actually kind of important to me. So was being treated with dignity. To most people I supppose it sort of sounds like complaining about nit-noids but when you don’t have control over anything, the little things become quite important.

Now I know the GBS US Board is back for real!

Because I am going to be the awkward one – again.

When I was in hospital and the pain started in my legs, the only – the absolutely only – relief I got was to have someone rub my legs, reasonably strongly. Just thinking about it 13 years on, makes me tense. And nobody would do it (probably bcause I would not ask the staff). But there was another patient – the yellow canary – who I said it to just once – and from then on, when I was in the smokers’ corner, she would simply bend down and rub my calves – it was delicious relief, indescribable.

I post this simply because: some people with GBS cannot stand the merest touch and some need it. Or maybe I’m the awkward one that proves a rule.

Hi Birdie,

Frank couldn’t stand to have anything touch his feet or legs either, it caused to much pain. Yet others like Teresa could handle a massage of the legs or feet. Each patient is so different in what they are experiencing from GBS/CIDP.

I wanted to add this also, when we had the other forums, I use to try and tell the caregivers not to rub, massage, or touch the patients legs and in some instances their arms too. I felt that was important for them to know.

Teresa My Friend,

You are not the awkward one here. Everything you have to say is so important to any of the newcomers who are looking for any information they can get. How’s my Sarah? Did she enjoy her birthday?

Hi,
This is something that bothered me and still does. I wish a physical therapist would LISTEN to what the person getting physical therapy wants. I’ve gone to PT off and on and intend to go back to it and I know “I” need them to move my arms and legs and stretch them to loosen very tight muscles, but they do what “they” think I need.
I am extremely numb and if I touch myself it’s a sandpaper feel, numb hands touching numbness, so when I do touch myself, I can’t tell how far the numbness goes. I asked a therapist to trace up the leg from foot past knee so I could feel from someone’s normal touch how far it went. She wouldn’t trace, she just spot touched, which told me nothing.

Hi Brandy – I answered on a new Thread (brave old me!) cos I thought it would be better than hi-jacking this one.

However, I’ve a moment (specially as I’m drinking – and seeing a neuro tomorrow) that stands out in my memory.

I was not overly concerned abaout hairy legs – though I totally understand it. Those of a squeamish nature – look away NOW.

I got GBS 6 weeks after Sarah was born. Eventually it dawned on me that sooner or later my periods were going to start. I didn’t know when it occurred until I was informed. Read between these lines as much as you choose. I can say this because I am P.A.F.

Liz, I can relate to you as regards the spot touching instead of tracing. I suspect it probably drove you up the wall. I suspect that many of us actually met at that point – halfway up that flaming wall!

I was sent by 911 to a really mediocre hospital with mediocre doctors and Oxford would not ok IVIG or PP. The result: treatment with steroids. I became the size of a small blimp and had to be lifted out of bed with hyatt machine (spelling). It often took two nursing assistants to work the machine, and I was left dangling for far too long…sheer hell.

Regards,
Marge

Hi Everyone.

I’m from over the water and registered yesterday but didn’t have time to post on this subject last night. Seems to be a popular thread.

I remember like it was yesterday being laid in hospital in so much pain. One thing I did like was when my guests held my hands and feet. The warmth of their hands on mine was pure heaven, I would often have one person on all four corners of my bed, holding a hand and foot each. But…. If any one rubbed my feet or hands it felt like my skin was being ripped off.

My Mum especially felt at ease when she gently stroked my hands the way any Mother would stroke her child when they weren’t feeling well. It broke my heart to tell her that I didn’t like it. (When in fact I hated it so much I could scream) She was just as happy to simply hold my hand. I never told her how bad it felt for me.

On reading today’s post, I remembered another time. One where I was so out of it that I couldn’t respond to my pain at all, I just lay perfectly still in complete agony. My IVIG monitor would bleep to indicate insufficient flow or an empty bottle. Nurses would complain about the number of times my monitor required attention. It was not my fault and I could hear every word of complaint but could not even respond in my defence. I was not able to lay down flat at all for almost two weeks due to medication and feeding through tubes, day and night alike.

I was placed on a ward where one patient stayed awake all night, shouting continually about being stuck in his bed bars, while I tried to sleep, and sleeping all day when I had to be awake for treatment or tests. It didn’t seem to bother the staff on my ward that I was in such pain and was desperate for even the smallest amount of sleep.

I really wish they knew how they made me feel when they tutted and complained about medication monitor. When this other man was making so much noise it was impossible to switch off from the pain.

Thank you for bringing this thread to the board and hope you don’t mind me crossing the water to join you all in the Great USA.

Just read your post Teresa, trust you to be different. Glad you’r e over here too.

Take it easy.
Gary

Welcome from across the pond to our forums Thomm’s berre.

We do need our tavern up and running soon. 😉 😉

Just wanted to throw out my 2 cents and let you all know how useful this is as I head off to visit my father every day. I hope you all don’t mind, but I’m printing out a lot of this information and leaving copies in my father’s room for my family to take home and read. They’re not much of a computer crowd so I doub’t they’ll pop in here for comment.

Again, thank you all very much, this information is invaluable!

Dear Gary

Bet you thought you wouldn’t run into me here! You certainly went through it. I have trouble understanding the caring profession (nurses) becoming annoyed when monitors bleep because that is what the monitors are for! I think it just comes down to GBS being so little known.

As awful as it sounds, I really relate to your Mum because being stroked is brilliant to me yet it drives my beautiful healthy daughter nuts. Yet I stroke her hair as almost a reflex action. I take my hat off to you – because whilst it caused you discomfort you saw how it helped your Mum. God love you.

And the sleeping thing? Oh yes, total sympathy with everyone as regards that.

I am 13 years on but today some of what has been said came back to haunt me just a little. Ah well, so what? I could be one heck of a lot worse.

Teresa, I knew I’d bump into you over here.

Thanks for your comments, I remembered a lot from the past today too, some things that I forgot to put into my story. I’m going to spend some time tomorrow updating and finishing it. Think I’ll need more than a day though.

It’s good over here on the US site. I’ll try to divide my time.

Take it easy.
Gary

My Monica was 7 when she was diagnossed (she’s now 10 and doing wonderfully!!! 🙂 ) and she has always been a cuddler and liking to have her feet rubbed, tummy rubbed, etc. When we first got her home from the hospital, I was trying to help her get comfortable and I remember trying to rub her feet and legs – they were so cold and I thought I was helping her. She just started crying and telling me to stop because it hurt so bad. I ended up crying with her because it was just awful to not be able to make her comfortable. She described it to me later as if she was on fire and no matter what she did or we tried to do for her, it just made it worse. And I’m supposed to be able to make her tears go away, not make them worse, ya’ know? We learned to try several positions for her to lie in bed, sometimes heating pads helped – but then again, they also at times made the pain unbearable.

Eventually, she did come to a point where it was a good feeling again – especially after a bath – to have her feet rubbed. She still is touchy about the rest of her body though which is quite sad……such a bonding mechanism taken away…..

I think GBS is a chameleon of sorts…..for what my Monica has been through, it seemed like just when we figured out what worked and what she needed to do, something changed and we were at square one again. It was a long road and every so often, she takes a step or two backward. Stress and fatigue definitely play a role in how she does from day to day. She has learned to really listen and tune in to what her body is telling her – and I’ve learned to watch and see what she is not listening to…..those silent signs that her body is needing quiet and rest. Her eyes drooping, her shoulders kind of tightening, her walking turning more cloddish. And that’s when I step in and make her take a break for awhile…..which isn’t always easy with her active spirit and independent nature. LOL 🙂 But, it’s those signs to watch for, and even if she says that she is okay, be aware enough of who she and what her limits are to step in when necessary.

My Monica’s teachers the last three years have gone through a learning curve as well. They have to realize and trust that when she says that she is tired, or cannot participate in the phy-ed class activity or playground activity, that it is truly the case. Some have had the notion that she was trying to get out of whatever the activity was – and it’s then up to me and her dad to be her rock and make it crystal clear to them that even if on the outside she appears to be fine, she has to be given the benefit of the doubt and if she says she needs a break, then she needs a break. So, teachers, please listen to what the patient is telling you – gripping pencils at times is difficult; climbing stairs one day will not be an issue, and the next will seem like an impossible feat; standing for long periods of time is not always possible, etc.

Oh furry legs! LOL Gosh, that was awful. I had swim therapy and hated it for the fact that I felt so disgusting and hairy!:o I was so thankful when one of my favorite nurses actually asked if I’d like her to shave them for me.

Hi Kathryn!

Gosh I had the opposite problem that happened with my “furry” legs…… I had a nurse in the ICU come in one evening and annnouce that she was going to shave my legs……I had literally been taken off the vent that day(day 44 since my dx), and I was able to communicate to her that I absolutely did NOT want my legs shaved……I had so much pain and was so sensitive to touch (couldn’t tolerate bed sheet on my feet for over 3 months). She told me not to be “silly” and proceeded to shave my legs anyways………..dry. Just a disposable razor, no soap, no water, nothing. I just about went out of my mind. It was [U]horrible[/U].

best wishes to all,

cg

For several years before my diagnosis, when people would touch me I would tell others how it hurt, it burned. I always thought it was because of my anxiety disorder and the fear of touch made it burn. I was wrong. It still hurts. But I am not in many situations where touch is done, so for that I am lucky.

The hairy legs. I have a hard time shaving them now. It does not really hurt, mostly I don’t feel it. I do miss large areas on shaving them. I notice it later. My vision is going sour..lol…But I guess I am lucky in that I don’t have much leg hair now. Menopause or CIDP did that. I am not sure which as they both seem to come at me around the same time.

I can’t imagine how hard it must have been for you all, having all that pain and not being able to tell someone. I consider myself fortunate and am sad that you went through that.

Blu

Hi Blu,

I have very minimal hair growth below the knees now, it grows but very slowly, I kept asking my doctor if this was because of the nerve damage(my damage below the knees is extensive and permanent), and he couldn’t seem answer that for me……..then one night I was watching “House” and Dr. House confronted a patient who had not disclosed that he had diabetes, House told the patient that he knew he had diabetes due to the fact that the patient had no hair on the backs of his hands, he said that diabetic/peripheral neuropathy caused the hair not to grow….yeesh, I had to find it out from a fictitious television doctor!….lol….:)

best wishes to all,

cg

oh, I love that show. I can’t always watch it cause it doesn’t tune in very well. I get about 3 stations, only one is clear. But I missed that episode.

I had gestational diabetes when I was pregnant. I usually have glucose, a 2 or 3 hour test about once every 5 years. But I have not done that for about 10 years now. Perhaps it is time. My random studies have been normal recently as far as I know. umm, thanks, think I will see about getting it checked again.

Hi again Blu!

Ooops, I didn’t want to give you the impression that you only have the hair loss with diabetic neuropathy, it’s just that CIDP and GBS are peripheral neuropathies and so is diabetic neuropathy, so it just made sense to me that my lack of hair growth was ultimately due to my peripheral neuropathy, as I don’t have diabetes. The hair on my head also grows very, very slowly now, and I imagine that that is due to all my residual cranial nerve damage also…….here’s a link to an article on Peripheral Neuropathy, (Link deleted by Administration)

This is from that article:
“[U]If untreated, peripheral neuropathy can lead to[/U]:

Loss of reflexes and muscle control
Muscle atrophy (loss of muscle bulk)
Foot ulcers
Injuries to the feet that go unnoticed and become infected
[I][COLOR=Purple]Hair loss in the affected area[/COLOR][/I]”

best wishes to you,

cg 🙂

Hi,
Okay, I’ll get up on my soapbox again because I can step up now. This is just the TIP of my iceberg!!!!!!!!

I am now caregiver to my mother (I do what I can without question, out of love), even though “I” need my own caregiver for some things. Why can’t family see that too much should not be put on me! I live with daily stress now.:confused:

Hi Liz,

Have you talked to family members about this? Tell them that you cannot do this all alone and that your Mom requires the help of the family. If you don’t tell them what “you” need” they won’t know. Maybe they are assuming that you are ok taking care of Mom by yourself. Try to have a family meeting and discuss this with them. I know this is so hard on you.

Hi Donna,
Yes, I have tried to talk to family and YES, we have had a family meeting where I’ve told them “don’t put too much on me”. Hasn’t accomplished anything yet, after about five years of trying to tell them.

Hi Liz,

I’m really sorry that this is happening to you. It’s a shame that most families don’t listen.

[QUOTE=2pznapod]Sounds good Alison – I’ll add the folllowing…

Also – I would have loved to have someone come do my hair so I didn’t feel so disgusting. Add to that leg hair removal. 🙁 I hated all those doctors looking at my furry legs after weeks of being unable to do the most basic things for myself…checking the lack of reflex (yup still nothing) and poking me with those needles (nope still can’t feel that).

Anyone else?[/QUOTE]

*thinks hairy legs are sexy*

all I can say Soapy is ewww

From Frank’s first year of illness, “please don’t touch my legs or bump into me”

” No I don’t want to be massaged or I will scream with pain”

“Please don’t make stupid suggestions, when you don’t know a damn thing about my illness and how painful certain things are for me”

“When you ask me about my illness, please really listen, just don’t nod your head and say I know, when you don’t know or give a damn”

All of those statements were Frank’s, not mine.

I am glad you mentioned weight loss and muscle weakness -How much weight did you lose and how long did it take to recover your muscle strength?

Being male I didn’t mind hairly legs. But in the rehab we would have to take turns getting showers which usually meant once a week. I hated not being able to take shower by myself. And talk about being left on the wheel chair-how about on the little toilets they would put by the bed. I had to be carried back and forth for a while and my bladder was paralyzed so I never knew if I had to go-I would try every three hours and it was very difficult. Sometimes the staff would put me on the seat and forget about me even when I rang the bell-that was painful and embarrassing as I never knew if a visitor would walk in. It is hard to realize how dependent I was for every little thing. I tried to keep a record of my experience and all I wrote about was how to get to the bathroom! Finally I had many male staff just pick me up and throw me on the bed like a sack of potatoes-which is just how I felt. Love to you all, Jeff

Oh about being touched-I had a dear friend give me a message in the hosptial and I felt like my body was made of electricity and every touch was a lightning bolt. It was like being on lsd and definitely a horrible experience. Jeff

I lost almost 20 pounds and on a 5 foot 3 inch person that is a lot of weight. Although Lyrica took care of putting most of it back on. 🙂 Also I have been trying to exercise to get some of my muscle tone back. It is slow going. I was lucky … my GBS took a long time to peak (I was still going downhill at 6 plus weeks when I was diagnosed) but I seemed to respond almost immediately to the IVIg treatment, but I got a 5-day treatment in less than 3 days. It took me about 6 weeks to get back on my feet and learn to walk with a walker and eventually get off the walker. At about 4-5 months I was able to drive again. I still don’t have my full strength but it is gradually improving…slowly…

This thread brings back memories of July 1990 I thought I had forgotten.
I was turned every two hours when fully paralysed to avoid bed sores. On one occasion a finger of my left hand was bent backwards underneath me as I was put on my left side. Unable to speak or communicate in any way I lay like that for the next two hours in indescribable agony until I was moved again. The only outward sign as I moved in and out of consciousness was perspiration running off me as a result of the trauma through which I was going. A nurse noticed this and removed the blankets to try to help.

Been there and felt it all. But was hospitalized and in a nursing home in Florida for so long, I was “new” to all nurses, CNA’s etc. As scared as I was, they were much more. I have such a respect for the medical field now that I am doing “Volunteer Work” at the hospital(in Alabama) a few hours a week. I walk in there in my sneakers with a slight limp and my feet are still numb and I smile and make people smile and think to myself…..I am so happy to bring a little sunshine to their day today as all those did for me day after day.

hai every body……… i wanted to share the feelings and the difficulties i had suffered while i was in the hospital…..i was unable to go for a piss while i was in the ICU in front of every body.i used to ask the ward boy to close the curtains….he used to wait for me to piss in the urine catch….i could not do that .iused to ask them to make me stand………..they are afraid to do that………….i used to beg them atleat make me sit on the bed…….that made me to piss………..so i thought not to troublethem and finally managed to piss while lying on the bed…………i did not take any solids not to go for the toilet which made me difficult to do on the bed……i took fluids for a week…when i got some strength i took solids…the experience i had when i was carried to the toilet room…i took the suport of the ward boy and was seated on the toilet……….which was horrible…..the pains in the thigh which were not supporting…so i had a thout why not the manufactures of the beds have an idea for making a toilet in the bed were it can help the disable people can handle themselves for the shy people like me………………

The one thing I felt, but seldom said for months during and after GBS was

LEAVE ME ALONE! I WANT TO SLEEP!

Also, this:

YES IT IS RELATED TO MY GBS. I’m tired of doctors telling me that my residuals have nothing to do with GBS.

I remember back in 1983, at the age of 20 when I got GBS, that it was like living in a dream. This couldn’t be happening to me. The doktors back then new zero about GBS, and I had every test in the book the time I remained in the hospital, because they didn’t know what to look for. the only pil I got was an aspirin. Now, 23 years later, I know I have CIDP, because I had the illness back a few years ago. I guess what I’m trying to say is that I don’t know where I stand. I trie to avoid talking about it to anyone, cause they don’t understand anyway. The only ones who really know what I am going through are my parents. I sometimes feel isolated, and it’s probably my own fault. Could be I don’t want any attention from anybody, who knows…………………..

One thing that really bothered me was that during meal times in the hospital, most persons delivering the meals didn’t know I couldn’t feed myself – so they would bring the food in and lift the lid and say “enjoy” and leave. I was left to look and smell until someone noticed that I wasn’t eating and asked if I was okay. I would then tell them that I was paralyzed and couldn’t feed myself and they would offer to feed me, which made me uncomfortable and them uncomfortable. I asked family members to be sure to have someone there during mealtimes so that I didn’t have to suffer that indignity. We as GBSers need all the dignity we can hang on to.

Cipdvic,

You are not alone. This forum is all about helping one another – that means with advice, information, or just emotional support. We understand and you don’t have to feel alone with your feelings about GBS anymore.

DeborahF-

I went through the same thing when my arms were paralized, but I was too proud (stupid) to ask for help. I just let them take the uneaten meals away, if nobody from my family was there to help me. What an awful feeling.

I don’t know why the people who bring the meals are not better informed in hospitals about the condition of the patients they are serving.

I remember when my father was hospitalized with throat cancer. He was not allowed to eat or drink ANYTHING because he couldn’t swallow (he was being feed via a tube in his stomach). Because he also had some dementia, he would forget that he couldn’t swallow. I was afraid to leave him alone at mealtimes in the hospital because one day I came in just as he was about to take a big bite of lunch. Had I not been there to stop him, he would have choked. Very scary.

Alison,

Your post nearly made me cry. I’m so sorry you had to go through that.

I keep thinking about my own experiences of lack of dignity, and those of so many others who post here, and hope that one good thing that will come from our bad experiences, is that we will be much more compassionate (I can’t spell!) and careful to be sure others are treated differently.

Because my lungs were in such bad shape before and after onset, I was treated with steroids and blew up like a blimp. Sometimes the aides left me hanging in the Hyer lift…it hurt dreadfully and left me feeling even more vulnerable. I kept telling them not to start the process of getting me back into bed until they had two people but they rarely listened.

There are some people on the forums who turned lemons into lemonade, and I wish they had been around when I was first diagnosed.

Regards,
Marge

Thanks Suzanne, I know, that’s why I’m here. And I thank everybody who wants to help. I hope I can help others too, but it’s a little difficult for me, because I’m Dutch. I stumble on a lot of words and expressions here, that I can’t follow. Maybe you say, go on a dutch website, but it’s really not as big as it is here. And we have a little country offcourse. Thanks again for your words, and I will try my very best to become a member of this family, because I feel comfortable here.

i remember getting my feeding tube removed after approximately 2 and a half months. everything had a weird taste. i had been craving a cheeseburger, and had expressed this to my family many times. when i was finally able to eat one (after nearly a week of pureed chicken, and turkey alternated for every meal), i couldnt even enjoy it because the taste was skewed and the mustard burned in my mouth. another thing i will not miss is the hallucinations. a fentanyl, morphine, oxycontin cocktail can really play tricks on your mind. and it barely masked the pain. sometimes wonder what really happened for those first two months in nicu, then i realize that i probably dont want to know any more than i remember now. my wife did keep a journal for me though that detailed each day, up until i was conscious enough to grasp hold of reality on my own. this was a great tool for me to come to terms with time i had missed.

The journal is a great idea. Good thing to suggest to caregivers.

I wish I could recall more from when I was really at the worst part of my own illness. My husband remembers a lot, but a lot of the memory has faded for both of us.

Cidpvic,

Don’t worry, you are doing fine with communicating. If there is anything you don’t understand about our replies. please don’t be too shy to ask. I doubt many of us could do as well as you are doing with communicating in another language. You are welcome here anytime.

Things I wish they knew….

Yes! So many good points. I need to make a list. I too remember not being able to feed myself and waiting….until the “meal” was cold until someone would come to feed me. I was on restricted liquids and restricted diet, there was so little to choose from on the hospital menu, one time all they sent was applesauce and crackers!!

The hairy leg syndrome seems to have hit many of us. I also had the long toenail syndrome. They finally sent a poditirist (sp) to see to that.
Time would seem to stand still, I was aware of every minute. I did not sleep well and the days were so long. Visitors were few because of my distance from home. I received so many cards, what a blessing knowing so many were thinking and praying for me. If you visit and I am sleeping, leave a note or wake me up, I can sleep later visitors are too precious to miss.

One of the most frustrating things was not really knowing what was going on.
This Dr. told you one thing, another told you something else. I had never heard of GBS before, nor had my family. Just knowledge of what I had and what to expect in language I could comprehend would have been a help. Best case seniero, Worst case seniero. Not the “most people” version I was given, I now know that no one case is the same. Fear of the unknown.
When I tell you I am in pain, I am in pain!! I don’t care how much or when I had my last pain meds. Call a Dr. do something else to help.

Have someone in the family keep a log of the Dr.’s that see you and what they tell you. The tests they give you and why and the results. Medications given, when started, when stopped and why.

I had some great nurses, there was one who washed my hair after two+ weeks of no shampoo. How good it felt. The bath I was given everyday when I could not wash myself, how good it felt to be clean. The nurse who would stop in just to see if I needed or wanted anything in the middle of the night when I could not sleep, or the times she let me take my shower at 4:00 am to relax my legs enough so maybe I could get some sleep. The young nurse who sang for me, after finding out how much she loved to sing. The nurse who came in to check on me one night who had been crying and told me not all patients were as kind as I was. I hope they knew what a blessing they were to me then.
Bonnie

I wish Doctors were more informed. Hopefully it’s better than it was when I had GBS in ’97 but I remember being 17 or 18, in college away from home. Losing strength, numbness and pain in my face, hands, feet, legs, and having efforted breathing. Going to the doctor was an unpleasant experience at best. My first visit was the worst! After explaining all of my sysmptoms the doctor wanted me to do things that I could in NO WAY physically do. Jump up and down!? Are you kidding me? I can’t pull myself out of the tub you idiot!

Simply put. Do the tests you need to do, but take the patient at their word! Don’t inflict more pain, and while I’m at it. . .be considerate. If I tell you it hurts to rub my feet, legs, hands, whatever. . .STOP IT!

😡

[COLOR=red]I wish my doctor/surgeon knew what he was doing before he carved into me seven years ago and ruined my life! 😡 [/COLOR]

How do they take your blood pressure without it hurting? Mason screams, he said it hurts so bad, please put a bandaide on it.

Trish, make them stop.doing.it.

OK … here is a very, very blunt list. Sorry if I offend anyone.

(1) I am not here by choice. I am strong, proud, independent, athletic, responsible, intelligent, and fun. It is not by my choosing that I am stuck here battling this disease. It is not by choice that I need your help to survive right now. So [U]please, please, please [/U]don’t whine and complain (caregivers) about how much you hate your job, how tired you are, how much the hospital administrators have put on you so you don’t have time, or how much you don’t want to help me with restroom activities or any other problem that requires your time and effort. If I could help you with your activities and make life easier for you, I would jump at the opportunity. I want to be the best / easiest / most enjoyable patient you have ever had … but there are just some things that I cannot do. No matter how hard I try, my legs will not move. I am sorry. Please dont make me feel worse about my condition.

(2) I am awake, coherent, and intelligent. Please don’t talk about me with somebody else in the room as if I am not present.

(3) If I say I am in pain, believe me, I am in pain. If it were just a headache, mild discomfort, or an irritation, I would be too proud to ask for your assistance. I would much rather bear mild discomfort than appear weak. Trust me, if I am asking for pain relief, starting me off with 1 tylenol and telling me you will check back in an hour to see if I need another tylenol is NOT going to solve the problem.

(4) Please do NOT come into my room with a loaded heparin shot (stinging stomach shot for the non-GBSers reading) smiling and joking with stupid remarks like, “This is really going to hurt … get ready cause this really hurts” while grinning from ear to ear. Joking is fine … spiteful joking is just not funny (especially for those who are either thin to begin, or have lost so much weight that the fat layer for the shots are tiny).

(5) Hospital beds are not comfortable … look at them … the mattresses are plastic. Please don’t make it worse by using sheets with holes in them (the discontinuity causes pain for GBSers), using ratty pillows, torn-up pillow cases, etc.

(6) I can’t move. If the IV starts beeping, if the heart monitor patch falls off, if the oxygen sensor slides down, if the blood pressure cuff blows apart, or if the light bulbs in the room blow up, it is not my fault. Please don’t get upset with me when the alarms start beeping … I can’t help it.

(7) I am a proud, previously independent, intelligent, professional person. Please help me to appear so. I need to brush my teeth, wash my face, shave (face for me, legs / armpits for the ladies), get regular showers / baths, comb my hair, etc. Please help me to do this in the morning, before any visitors show up in the afternoon.

(8) Please don’t bring me piles and piles of puzzle books. The thought is appreciated, but the energy is deficient.

(9) Family members (especially medically trained) – please do not come in and tell me and my entire family everything that I am feeling … just because you have heard of GBS, you are not me. My aunt (Nurse Anesthetist) told my entire family that there was no pain associated with GBS, 95% of patients make full recoveries, and life goes on as if nothing ever happened. I actually had to argue with her in front of my family that I had pain … and she fought vehemently that I certainly did not. I am having enough of a struggle fighting the disease, don’t play “know-it-all” just to look important to others, or to belittle me.

(10) Don’t rub my feet!!! I know this is a personal choice for many, but at least ask prior to touching any part of me. I have been home for 8 weeks, and touching my feet will still make me leap higher than Michael Jordan ever did! (Hmmm … maybe there is an opportunity in the NBA brewing here?)

(11) Please don’t just make yourself at-home to my fruit basket / care package. Please ask … we get very few good meals in the hospital, so please don’t take away our saving grace of fruit or homemade cookies while we are sleeping. Besides being tasteful sustenance, it often has emotional value to us as well. I will likely share, but please be mindful that you can go home at night and eat anything you like … I do not have that luxury.

(12) Do not yell at me for the mistakes of the previous shift … it is not my fault.

(13) For family members – please dont go through a list of all the things that need to be done at home (mowing, laundry, cleaning, leaky faucet, plumbing, etc.) … I feel badly enough about my inability to help already.

(14) Do you know what a portable DVD player and some new movies would be worth to a GBS patient?

(15) I am scared … please don’t keep telling me it will be all-right. You are just making me even more anxious.

(16) Please don’t tell me of all the difficulties at my workplace … I cannot do anything about them right now.

(17) If possible, please take me outside, or for a stroll (wheelchair) through some different areas, through the lobby, by some different windows, or basically anywhere different. I can tell you that there are 1,783 holes in the tiled ceiling above me, and I would love a chance to look around without triple checking my counting again.

(18) In my mind, my relationships are very, very fragile, and I need to hold onto reminders as closely as possible. Please don’t ask me to give up my wedding band right now.

(19) For medical staff, please do pop your head into the room to say hi, even if for literally 10 seconds. It helps to think that we are friends rather than simply patients or work.

(20) Please do turn on some music during the daytime if I am awake and alone.

(21) Please surprise me with a “picked-up” meal (not fast food) sometime … that would be wonderful!

(22) Please do provide me with all the research and information you can find on GBS … the doctors and nurses tell the patient surprisingly little, and what they do tell you is generally incomprehensible to a non-medical background.

(23) When you can see me getting tired and struggling to keep sitting up, please let me know you wont be offended if I lay the bed down.

(24) Please understand if I am tired, groggy, frustrated, or depressed, but also feel free to kick my butt if you see my attitude going downhill.

(25) Please don’t just throw new blankets on the bed … yes, my skin really is that sensitive.

Hope this helps.

Doug, Very Well Put!!! I could not have said all that any better!!!:)

I relate to a lot of what has been said. On a personal level, the biggest Things I Wish They Knew are:

As many said, if I said I was in pain, I meant it. I waited until it got serious before mentioning it I did not scream because it had gone beyond that somewhat

Leaving me sitting on a commode just gave me time to figure out how to fall off it without (hopefully) breaking any bones

Not being turned regularly and having to wait for an unspecified amount of time after the pain started and the button was pressed is rather terrifying. For a nurse to then come in and say ‘I’ll just get someone to help me’ was seriously scary because I did not know when or if I might see her again. All I needed was a push – anything to relieve the pain.

Oh yes, two nurses coming in to get me out of the bed and saying ‘what’s wrong with you – haven’t had time to read your notes’ was the only thing that did make me scream. Because I knew that they were about to move me in a rather painful way and screaming was the only way to stop them! It worked a treat mind you!

Great list Doug there were a few on there I had not thought of. I try and advocate for new patients when I first meet them in the hospital, this thread definetely gives me lots of things to pass along.

Jerimy

I wish that people knew what is meant by “bend my leg at the knee”

Hubby came to visit when I was in hospital. The pain started and I asked him, n an urgent tone, to please, bend my leg. He looked at me puzzled. In the end I remember shouting (very impolite I know) “Bend my Leg” – “At the knee!”

But instead of bending it he asked “Which way?”

I didn’t have an answer.

Doug ~ your list was super great! I think that the foundation should include it with the package for new-to-us people. They could always add to the list and ask family, visitors and staff to read it 😀

Thanks so much, Ali, for bringing this back up. I have really learned a wealth of information here today. Thanks, Doug for the blunt, direct list, and for all the other coments. I hope there might be some new ideas posted.

I do have to give myself a pat on the back: I was at the foot of Jacob’s bed one day, and started to instinctively reach for his foot for a foot rub. Before I grabbed it I STOPPED and asked if it would feel good or not. 🙂 He said sometimes he likes it and sometimes it hurts, but that day it would hurt, so thanks for asking. Woohoo! I did something right!!!

Linda

Oh yes! The hairy leg thing! I remember starting sentences with “excuse my hairy legs” until I thought I would scream. My wonderful husband played “Shampoo Man” and washed and (tried to anyway) dried my hair – and although it was kinda painful, it felt WONDERFUL to be clean again. Oh, and being able to shower. My husband got me a little bath stool and a handheld shower head – HEAVEN! He sometimes tried to do too much and I agree that it became testy at times, because I couldn’t communicate very well. I wish he knew how much I appreciate all the things he does for me, both physically and mentally! I tell him all the time, but I don’t think he really understands just how much it means to feel safe while all of this scary stuff is going on! Sometimes just a hug (lightly, please) makes it better. Good luck and good health.

I wish they knew that even though you look normal that you still have problems!

This is great. I can echo concerns about misguided help and I want to add a few things that were wonderful.
I loved that my friends and family:
made a sign for my room that said “please don’t touch her. It hurts”
shaved my legs for me using just a towel, shaving cream and wet clothes
bought me a camel back water bladder so I that I could get myself a drink even when my hands didn’t work
spent the night with me when it was really, really scary and didn’t say anything but were so completely there for me
loved me through all of this
do my laundry and change me into clean clothes
never made me feel embarrassed that I needed help with everything!

Thank you everyone for being a part of this board. It makes it alot easier.

Claire
Santa Fe, NM

This is a great thread for caregivers. It’s also great for patients letting them know it’s not abnormal how they are feeling.
The thing that gets me most is people say I look fine and think there is nothing going on. If they could see the nerves firing inside maybe they could understand.
I also wish they could understand the stamina issue. I used to be very active and strong, well everyone that has GBS knows what happened to those skills.
The jealousy factor and resentment because I’m not at a 8 hour a day J O B !
It gets really hard to deal with because the same people and (family) were so behind me , but now that I’m out of inpatient it seems like they expect me to be like I was and be able to do what they were used to me doing.
I want to thank Ali for starting this thread again.
THANKS ALI!

Tim

For me…it is for others to understand that sometimes I undertake tasks that I think I can do…hope I can do…pray that I can do… and crushingly realize that I can’t… not because I am lazy (not that others thinks this, but I think they do!) …but because it is beyond what I can physically do… When this happens, it hurts.

Danny

Danny,

I can relate so well to what you said. I’m constantly over estimating how much I can do, and as a result often cannot complete something I’ve started. It gets very discouraging sometimes.:(

I try to remind myself of how much more that I can do than I could even just a year ago.:)

Suzanne

Yep Suzanne…and then, for me…the anger comes…

Same here…

I hate it when I become enthousiastic about something I have achieved and people telling me I should stop right there. They may be right and they mean well, but that makes me even more frustrated because I can’t get mad at them. Oh, and I don’t like it when people encourage me to do more than I know I am capable of doing either:o.

Sometimes I want to scream: leave it to me to decide what’s good for me, and just for once don’t spoil my illusions about having the life I so desperately want, but I know I will never get.

I wish well wishers could know that we don’t feel the way we look. It is just too repetitive to try to explain how I feel physically when the comments are “You look great! How do you feel?” I’m tired of being tired and trying to explain. I have found that “Okay” works best for the inevitable question “how are you?” And for the question “Would you say you are back to normal?” My pat answer is …”This is the ‘new’ normal”

I have a friend that – in a situation very different from gbs – taught me that there is a big difference between a public “how are you?” to which you give the public response “I’m doing okay”, versus the private, truly concerned “how are you?” To those people she is willing to share more.

I like the response that this is the new norm.

Small issues of personal hygiene and privacy are often overlooked in the hospital, in favor of more critical health issues.

Family can help by providing little courtesies and dignities that hospital staff are often too busy to take care of.

This is a great thread. I just posted some questions regarding caring for someone with GBS. I have absolutely NO IDEA why I thought I knew better than him, that a foot massage or back massage would be [I]just greeeeaaat[/I] for him. How could I be so annoyingly dumb???
Please keep adding to this. I want to know anything I can about helping him. We have some language difficulties as he is Italian and I am American. He speaks a little English and I speak a little Italian, maybe that’s why I thought I didn’t have to listen to him…….
Anyway, reading these tips here, in my native language is such a huge help.
Thanks for sharing, you all are amazing!

Hi cvillecmd,

Have you gone back and read all 9 pages, such a wealth of information.

The more you read, the more you find out about everything about this wicked illness.

Take care 🙂

Oh I remember the hairy legs that was sooooo bad and don’t forget the underarms, that wasn’t too sharp either. My dear old 84 yr old Nana used to come in every week and she used to give me her version of a massage and she was so hard and rough it really made me feel uncomfortable and sometimes it started hitting the painful side too and I just couldn’t tell her cause I didn’t want to hurt her feelings and when she talked to me she would be about a cm away from my face talking really slowly to me like I was deaf and dumb. I remember I used to look back and her and if I could’ve laughed (helps to be able to move your face) I would’ve because it was really funny. She’s such a sweetie, I still giggle with my Mum about that one.

Another classic moment was in ICU they used to flip me like a pancake every two hours to keep those dreaded bed sores at bay and every time they rolled me (I had up to 4 Nurses at my worst for every roll cause my pain was that wicked) my trachy would pull and irritate my throat and then I’d have to have to get suctioned for the next 5-10 mins which was just the most disgusting thing.

what I wish they knew…
I wish my co workers wouldnt say “now what is wrong with you, or you are so young to have so many problems.” They truly dont even KNOW what is wrong with me. I try to explain and they only hear parts of it. I’m tired of trying to explain and now I dont even tell them what’s going on. I have two close friends that I work with. I tell them. They listen without judgement.

Also, I wish that when I tell my husband or family that I am tired…that I really AM tired. I’m not being lazy. I just cant go any more. Let me rest for a minute.
I have a small child that I adore to spend time with…I push myself every day.
It takes alot for me to say “I cant play right now, or mommy doesnt feel good”…it hurts my heart more than anything.
I really do get tired and I really do need to rest.

I wish they knew that fatigue is real.

I wish that others could understand residuals. It doesn’t matter that I am 12 yrs. post “the event”. There are days that life is just plain tough 😮

I wish my kids would stop saying “oh mom, you’re playing the GBS card again”. I know they don’t really understand because when I spent 3 months in the hospital I only had them visit a little to not upset them. My family expects me to be back to normal. I still take 2 hour naps daily. I try to work when I can to help with the expenses. My husband isn’t as supportive as I’d like. I wish after 2.5 years that I didn’t have the tiredness and tingling feet but I have come a long way from being totally paralyzed!!! My family will just have to live with it. I’m so glad for this forum.

Caroline

[QUOTE=ali]Oh Kathryn I remember is talking about the hairy legs! Before it all came out in the open, I remember not mentioning it to anyone because I didnt want to seem too vain. :D[/QUOTE]

I hated this too, lying there every one taking my blanked and watching my fury leggs, and save underarms that was one of the first thing I let take care of when I got to the rehab center and my fury leggs.
xoxoxoxoox
Helga

Lot of things got into my nerve when I was paralized, and had this terrible pain in feet and hands. and still I somtimes hate my blanket for it is burning my body. And my doctor told my hubby pain was somthing it was rare condiction in GBS. I was not turned over regulari I had to ring for the nurse to do that, and when I was geting paralized in my hand I could not ring for theim and I was geting much pain lying on back, I got then a MND bell to call theim it was only one touch bell and what that feelt good and secured. And one thing that was the bath thing, I got not a bath firthst 2 weeks even thoug I was not in vent. And I felt like I was stinky corp.
when at last I could sit in wheelchair then I was put in there and yea they wanted me to be in it forever. How tierd I got in it and I tryed to use my hand to roll the wheel to get some one to take me to my bed. and after this I was so tierd.

Im one of those pathient that have pain and puting on shoes can be hurting, some clothing are also hurting for my skin still, my numb fingers cant do all things they used to do, I hope that will change sooner then later.
well enough of this rambling take all care, I love this forum it have help me alot knowing Im not alone feeling diffrent from what doctors tell me how I should feel.
xoxoxoxoxoo
Helga