Support Needed for Patients

Hello Ali,

Just wanted you to know that I sent you a PM. Hope you find it and read.

Hi Ali,

Your thoughts are rolling through my head. I’m not sure what the answer is. When my husband was ill last year his own mother didn’t even come to visit him and only one out of seven brothers and sisters visited and called. His mother called twice to “check in”… it was heartbreaking. She hasn’t called since. It’s been a year. I think the whole thing revolves around education, but creating an interest in receiving that education is difficult. Everyone in our society seems to understand the devastation of cancer because it’s out there… so prevalent… every one knows someone. But, when someone says they have Guillain-Barre` or CIDP it may as well be a rare toenail fungus… it doesn’t even ring a bell. We explained the disease completely to one of his sisters and her husband. Their next question was… did he miss any work? Maybe it’s just one of those things you can’t possibly understand until you’ve been through it. I hope you all have one person who “gets it”!

I got a letter of a support group that is comming up here in MN and I am really excited about it. My mom has been trying to understand what I go through and she will be going to the meeting with me. My boyfriend has been great but unfortunatly he is the type that wont read any literature or go to a meeting or support group (unless it is in Jamaica or something 😀 ). I know both my mom and I are excited about this group. I see in the letter that Dr Perry will be there too which is beyond cool. I think groups like this, regionally or other would be a great idea. I dont believe my mom would pay for a plan ticket to fly to say California once a year but she wuold drive with me somewhere within reason. So if there are enough people in geographical regions, maybe even having more support groups like this. I really dont know what to expect but just getting together with others like this seems like a great idea.

I have heard of these meetings being held but honestly my onset was 9 months ago and this is the first meeting I have heard about so it sounds like its not very often that they are held.

My point I was trying to make about going to meetings though about someone comming and talking to them is jsut this… certain people such as my boyfriend and others that I know would not go to a meeting, nor would they be interested in someone comming to talk to them. Some people that I know would be set that the person is slacking off and they sure arent going to sit there and listen to a stranger come and tell them differently. I have fears of this happening to me. I am 9 months post onset and get by the best I can but I fear there is going to be a day where I am being accused of just being lazy. Or maybe it is being said by some people behind my back now, who knows? But the more people that can be informed the sooner, I think the better off things will be in the long run. Trying to talk to families after they already believe that a person is slacking off is going to be harder to convince them otherwise than if the education was made available to them up front.

The reason I mentioned regional groups is because since this is the first meeting I have heard anything abuot in 9 months that leads me to believe that there arent enough people to get together on a regular basis, so was thinking that maybe 2x a year or quarterly even if done regionally would have enough participation that they could be done more often.

Howdy Alison,

This is so wonderful for you to put your energy toward this. I’m thinking how could I get my family to get interested enough to understand what is wrong with me, and I come up blank. I have told my sisters about this forum and frequently mention it to them as if you all were my friends I see daily. Gosh darn it, I don’t know {sigh}. I will keep it rolling through this sloshy brain of mine and will certaintly let you know.

We almost need a famous actor to support us – I know Andy Griffith (?Griffin) had this as I have an old Reader’s Digest where he wrote about his experience.

At least we are together here to support ourselves. But I can relate to what you write about families breaking apart, etc. because of our hidden residuals. And in my case, it doesn’t help when the neuro. is blind as a bat too. I just got through telling my supervisor about my neuo visit and only told her he confirmed I still have neuropathy. I got my usual 4% raise (whoopy – though I am thankful for anything), but she said the only thing wrong is my absences – I told her that wasn’t going to change. Maybe we all should start wearing bandages over our noses or someplace obvious and write “neuropathy” or “I hurt” on them???

You are such a sweetheart – don’t give up on this!!!

Ali,

You hit the nail right on the head in regard to my greatest fear. As a caregiver, and mom, I worry what will happen, and who will understand the difficulties my daughter faces, after I am no longer able. Usually I push these thoughts into a black hole in the back of my mind and focus on the here and now.

My daugher still, to this day, does not talk about it, except in a “functional” type response in a health care setting. She knows and understands this is a life-long situation that will always have to be front and center in her choices in life, but I sometimes feel that she secretly thinks she will beat this thing. She never has to ask anything of me – after a year and a half of devastation, I respond to her needs reflexively. Unfortunately, other family members think I should just let her struggle to get “control” of it.

So, here we are. You came in when I wasn’t looking, and opened up that black box – this is a good thing (TM), and I thank you for bringing up this difficult topic in such a kind and empathetic manner.

As I type this response, it occures to me that communication is key to maintaining an “involved” relationship with others. I am not refering to the technical information about gbs that we all pass on – but the daily give and take, ups and downs in the little trials of daily living. Ask, barter, bargain, or beg -if need be- for acceptance as you are. Be an active participant and expect that others in your family will be active in helping to solve or alleviate the little problems that put distance between you.

With this perspective, I realize that possibly I have been assuming too much – mabe family and friends want to understand; they have been there for us, they have just not been involved.

cd

this post is ment as a relfection of our personal experiences; I hope it will not offend anyone.

Ali you have a great idea. I know with my mild case of CIDP that it still affects me. I don’t have the energy like I did before CIDP and my strength isn’t the same. So at work at work I got modified duties. But to some people it’s not the same as light duties so I would do as much as possible but I would burn myself out.
Recently I found out I have Raynaud’s disease and trying to deal with that. Well today I wore a glove to do a job that didn’t needed because the cold hurt my hand. Well somebody thought I was stupid for wearing one and she said I was exaggerating things when I told her it was because of my Raynaud’s. Right now I am on light duties because I got Tendinitis in my hands. Overdoing it and my hands paid the price. Was trying to be as normal as everyone else because I didn’t want my fellow employees complaining about me doing easier work.

So some people are already making snide remarks because of my light duties.
Lots of people think I am making things worse then they are. I was crying last week at work in the washroom because I was in so much pain and I can’t do as much as I could 6 months ago.
This week my Rheumatologist gave me a note for light duties. My CIDP is affecting me more then I realize.
The support from coworkers would help also. Some do and some don’t. Also family members the same some do and some don’t.
It’s learning to accept ourself for how we are and realize they don’t live in our shoes they don’t know.
In Canada were I live I don’t know of any support group for me to join. I tried emailing somebody who suppose to be in charge of having meetings but he never returned my email.
Great topic Ali
Thank You
Sue

cd: My mother was the only one I felt understood. She died 8 years ago. No one else in my family wants to learn…

Hi Ali

What a caring soul you are and great topic to bring into the open for debate.

It’s hard to find a solution to such a massive problem that we all seem to experience when we go through our GBS journey. I think at the end of the day it’s all about communication and education. I think Chrissy had a good point of looking at somebody high profile to jump on our bandwagon and get this syndrome out there to the general public (that could be a good starting point) and then like anything else it’s convincing your government that this is a worthy cause to recognise. At a local level I think our hospitals and medical staff need to take a more proactive approach to this illness and have really good procedures in place for both the patient and their family/friends ie GBS support people to visit or attend meetings, counselling services, financial support in the form of a benefit of some kind just to name a few. Too many hosp’s are doing their own thing and it is very pot luck where you end up as to how you are treated not just medically but also physically and psychologically.

Let’s see what creative things we can come up with.

I guess my history/background has had so much medical adversity, that I can see things from many different perspectives. I have come to the conclusion that people in general do not do well when it comes to illness. Even things like cancer, although we know a lot more about it, after a person is ill for any length of time, the help & interest in that person seems to wane.

When I was just 27 I gave birth to my 3rd child, a boy with spina bifida. Although he was full-term & healthy (and also the most beautiful baby I had ever seen), I did not get the cards or baby clothes that I got with my daughter & first son. Instead I got more like Thinking of You type cards. I’m not saying it was easy raising him, but I was always proud of all of his accomplishments. All was great socially until junior high when I guess it was just too much trouble to invite someone with crutches & braces out with the gang. After college, he accepted a job in sports journalism, which he has done for 4 years. He still has really no social life; I guess young people are afraid of wheelchairs.

When I first got sick over 5 years ago now, I had over 12 bouquets of flowers in my hospital room. Initially people at work signed up to cook meals, donations were made at our old church for food take-out, ect. But the longer I was ill, the less we heard from people. I was hurt for quite awhile, but now realize that maybe I would not have acted all that differently than they did. After all, no one wants to get involved in a committment that might last for years. But I was lucky in one respect, I had a wonderful husband who took care of me through 2 1/2 years of almost total paralysis, as well as the support & care of my 3 children.

They do “get it”, they remember when mom had too much energy & never knew when to quit. Now when I say I am tired, they believe me, no questions asked. I do really feel for those out there whose children are too young to remember their parents at 100%. I also really feel for anyone who has to face these illnesses without a significant other, or one who does not try to understand. As for my brother & sister, they don’t get it, & still treat me like my old self. It is up to me to just say no, that I am too tired.

My husband has been through 3 surgeries in the past 1 1/2 years, two painful & serious back surgeries, & is now in the position of recovering from apendicitus, where the appendix had ruptured & many of his organs were paralyzed temporarily. He will have a 6 week recovery. His numerous relatives called me constantly during the 9 days that he was in the hospital, even though I tried to tell them to talk to each other, or how tired I was from being at the hospital all day. He got home on Monday, & strangely the calls have stopped. I hate to say it, but I think a lot of the calls are actually what I called “morbid curiousity”, & now that he is better, he is old news. The only get well cards he got were from his own children.

I am glad that I have been well enough (just barely) to take care of him during these surgeries. Our children have been there for us & a few of my close friends, but I have learned that each family has their own issues & that my husband & I can only count on each other, & our children. Trying to educate someone’s siblings is impossible, unless one has been seriously ill themselves. I wish I didn’t feel this way, & believe me I am a happy person & not bitter. I just believe that this is the reality of being seriously ill.

As for support groups for the patients, I believe that those are great. I hope to make the one in MN in May & see Dr. Parry again, as he is my neuro. How wonderful it would be to meet people who have actually experienced what we have gone through, but also feel the way we do on a daily basis. That is why we have this active forum, because so much of the time the people here really do “get it”, when others just possible cannot.

Since I recently started home IVIG I no longer worry about passing out from fatigue on the way from the clinic.Today a friend unexpectively dropped by. The nurse let her in and said I was probably sleeping. I got up and dragged my cart into the living room. My visitor gasped as she saw how bad I looked. My dirty hair and hooked to the drip cart. She said I looked terrible-what did she expect?? I’d be all made up and dressed nicely for medical treatment??? She looked down at the floor and mumbled some before she quickly left. I’ve told her MANY times about CIDP. She’s only used to seeing me who I was feeling good or pretending to. People see what they want to.
We have a local group but it’s speakers- I’d really like to talk with others who have CIDP. Compare. Laugh. Share. Educate. Listen. Support.

limekat,

my wife who works in a hosp reminds me never to go to the doc ‘all dressed up & not looking how i normally do’. it gives the doc a false impression of how sick you are. take care. be well.

gene gbs 8-99
in numbers there is strength

Ali: I have been blessed with a wonderful brother (he is all the family I have left) and wonderful friends whom I can share my GBS experience with. They are both supportive and yet encouraging. My boss and co-workers couldn’t be more understanding and helpful. I have a boss who knows I sometimes need a day off to regroup and he always tells me not to worry but get better because I am a vital part of the organization. On days when I feel like I am not a “whole” person, it means the world to me to know that people think that I can contribute as much as someone without my limitations. Tho I can do most things fairly well, I still have trouble with neuropathy and tingling and my writing looks like a two year old’s. I would certainly be interested in finding (or starting) a support group in the St. Paul to Woodbury area in MN. I think those of us who have had these experiences would get great benefit out of learning how others have coped, or help those who are having trouble, to cope. I know my wonderful support group of family (brother) and friends would be more than willing to help. Anyone who is interested can PM me. Please keep up the fight!!!!:D

Hello everyone:

This thread is of great interest to me. The Foundation liaisons – about 160 of them – hold meetings as often as they can all over the U.S. and abroad. Family members are always welcome to attend. There is usually a speaker of note – such as Dr. Parry. Is there any way that the Foundation can help you on educating family members who do not want to be educated? I am open to your ideas.

Barbara Katzman
Executive Director
GBS/CIDP Foundation Intenrnational

I think for me the biggest problems have been:

1) People responding that “oh I know so and so who had that and its no big deal, you’ll get over it” Just because they knew someone who had it young and doesnt appear to have residuals. Some people are worse than others, I use a wheelchair most of the time, but I can walk for a few feed it needed. I am also blessed that I have quite a bit of upper body strength back even though my lower body refuses to “wake up” 🙂

2) There is so much literature out there on various web sites like webmd, etc that people go to for info on this when this happens to someone. And unfortunatly it says that most people have a complete recovery. From what it sounds like that is not the case. These sites need to be updated to state that most people have some kinds of residuals and list things like fatigue, etc. Other than my partial paralysis of my lower part of my body I still have issues with proprioreception, numbness, tingling, etc. It seems like this is more common than not with varying degrees. However, people close to me all wanted to read about this when I got it and they all hit various websites all of which said most people have a complete recovery and they just assume that this the case (I cant fault them) but them knowing up front that I could have these residuals or that incomplete recovery is what seems to be very common would have been good.

I realize we cant change everyones web sites but they all seem to say the same thing (many of them word for word) so the main ones must have the same resource for their articles.

Hello Ali,
This is a thread that should be brought up to the top from time to time. Many times I’ve felt like I was the only one who didn’t have support from their family and friends at home. My first year with CIDP, I had my mother and father who showed that they were there for me. My mom and dad would take me to the hospital clinic for my infusions and they were with me when I had all those necessary tests done. My father even crawled on the floor to get to me during one of my falls. Then during the second year of CIDP, my dad died. My mother is still living and she would do anything possibly for me (her children were her whole life), but she is no longer well, confined to bed and declining as the years go by. My sister died eleven years ago, but I know in my heart, that had she lived, she would have been my help and support. That leaves my brother in the immediate family and it is so very hard to understand what is wrong there, because he’s never helped me. I cannot talk to him about this syndrome I have, though he has been told what I have. I don’t think he has tried to learn about it, I don’t think any of his four adult children know anything other then a name. If they were asked what is wrong with your aunt, I don’t think they’d even remember or have a knowledge of CIDP. No-one in my family knows who my family doctor is or who my new neurologist is. It seems like they just don’t care enough to talk to me about it. I THINK THEY ALL REALLY DO BELIEVE I JUST SIT IN A WHEELCHAIR AND FEEL NOTHING AND HAVE A FUN FILLED LIFE.
Ever since my rock, my father died, I take care of myself. I provide my transportation by using a homecare agency because if I depended on family and that includes near-by cousins and nieces and nephews, I’d NEVER get out of the house.

Hello Ali,
Of course you know I feel your are a main backbone of this forum and I don’t want to put too much stress on you but this is a terrific thread. I know you have heard about my family in turmoil. I’m folding clothes with weights on my wrists . This is a therapy that was invented by my family. All the clothes and clutter thats around the house seems to be “Mine” because “they” all have other things to do. I did some yard work and was prunning a climbing rose that had been mentioned it needed to be cut back. I procedded to give it a limb cut and left all the main branches but when I turned around my Wife was standing there just bawling her eyes out. I asked what was wrong and she said she didn’t mean to cut it that much. It just seems as if they would only understand or try to educate just a little of the basics and some of the communication skills needed in this “disease” we could all learn to cope better. Right now there are dishes to be put up and reloaded, clothes to be folded and more to be washed & dried, childrens toys to be picked up and floor swept, leaf blower to be used on the deck then the mower put up with the blower, go to the bank and make deposit,come back and organize EOB’s to verify there were drugs bought with flex spending account,get the program set up for IVig plan to help with it, go to the Dr.’s office and get a form filled out and sent in to help with extended coverage on my insurance…… But you know what? I look fine! I never was a lazy person and still am not but when I get all of this done it will take it’s toll on me and then it will be the why are you so moody or grouchy, why won’t you get up and do something it will make you feel better! Ali your one of the most tireless and careing people I’ve ever had the chance to know. Even though your body and mind is exausted your still doing work for this GBS family. you deserve a Great Big Squeeze
Tired Tim

Yes, I know what everybody means. I having been feeling fatigue, ect. but was talking to my mother a few minutes ago and was saying how great it was that I knew what was going on since I had started getting worse the last six months. She ask “Are you sure you are not getting worse from reading about all the problems”. I was so hurt that I just told her goodby and hung up. I really need a cyber hug today. I know as I get older in age that there will be problems and if you can’t count on your mother, who can you count on.:confused:

AJR I understand. I know my Mom has been good lately but my co-workers think I am making up my problems. I was told I should stop looking for problems on the internet. I told them I have a DR who told me this. Also since I got my Tendinitis I know people are not please with me. This morning my lead hand ask me if I could do a board yet. I just got put on light duties from modified duties last Wednesday. I am tired of trying to please them and do more then my body can handle to keep everyone else happy.

I am having to deal with the residuals I have from my CIDP and now my Raynaud’s and also Tendinitis. My hands and fingers swell up and hurt and I work on a fast production line.
Somebody asked me this afternoon if I was OK she said I look depress. I said I was OK but I wasn’t really.

I give you a Cyber hug.

Sue

Reading through all the posts regarding friends and family understanding what we are experiencing…the posts have already helped. Once again I am reminded that there are people who really do understand, and that lots of others suffer the same residuals I keep trying to convince myself are not so bad.
I have always been the one to lean on in our family. I’ve felt I needed to be strong and supportive and always “be there” for everyone else. I can look back to my sister’s diagnosis of MS when she was 12 and I was 10. I threw everything I had into pleasing my parents and trying to help my big sister get better. My arm-chair psychology scares me some time, I am so good an analizing myself.
I am blessed to be married to an amazing, hard working man, but I hate to think I am a burden on him. I have 3 adult children who have made us very proud parents their entire young lives. But I feel very strongly about not wanting to mess up their lives by not being the “wonder mom” they have always known and expected. So, in my case, it is my own fault as I continually make excuses and try to hide the fact that the residuals I experience have changed who I was.

Ali, this is a wonderful thread. Maybe I’ll come to realize the importance of sharing what I’m going through with family and friends and in that, maybe I’ll be able to say “no” when I need to.

I received a flyer last week about a meeting in Elmhurst, Il on GBS/CIPD.
My husband was the one that suggested we go. It is a bit of a drive, but after reading all the previous posts, we’re going.

Let’s keep this going. I feel it is a very important topic towards all our healing process.

Doby made an excellent point in that all the Docs and literature state that most patients make a full recovery. I beg to differ. But I do remember myself re-assuring my own family and friends at the time that I would be
“over” this thing soon. What a joke that was…3 years is hardly ‘soon’.

Take care,
JayDee

It is so hard to explain to people what I am going through and sometimes I just don’t feel like explaining. I have come across so many people who didn’t want to hear from me about my residuals, but who were all too eager to tell me what I was experiencing or how I should be dealing with things. The times I was told not to focus on my handicap so much when I finally had the courage to talk about it… That’s what hurts the most: it is hard enough that people cannot really understand what I am feeling, but it makes me angry that many of them think they do without even listening properly. Especially therapists and such, apart from the good ones, who think they know so much.

I am very fortunate to have a caring family, but for many years they didn’t know the severity of my pain and fatigue, because I didn’t tell them about it. I didn’t even acknowledge it to myself! My mother had a hunch though. Even now I am pretty good at hiding the pain and fatigue, but as my residuals are pre-dominant most of the time now, it has become harder. Sometimes I don’t want to talk about my pain because I want it to go away and not to play any part in my life. I don’t want to be Eva-with-problems, but Eva-who-is-fun-to-be-with. But I have found out that I am better off sharing it with the ones who love me, because then I don’t have to put my energy in pretending, and they are better off too, because it hurts them when they know I put on a brave face. The problem is it only works when people are prepared to acknowledge my pain.

AJR: when you think there is no one you can count on, know that you can count on us!

Thanks Ali, for starting this thread!

Edit: I couldn’t quit thinking about this thread this afternoon. What can we do? I really don’t have any answers, but I just wanted to add something from my own experience. For a long time the only one who understood me was my mother. My sister and my father have only recently become more open to my struggle with GBS-residuals, but it was not because of indifference that they didn’t want to hear it before. It was because it terrified them. They were in denial. I still have to be careful how I put things to them. Knowing this made it a little easier to deal with seemingly unfeeling remarks…