How r u doing Psychologically, specially years later?
AnonymousJuly 26, 2007 at 7:59 pm
This is a tough question and I have to think carefully about how to phrase it ….. As I have been speaking to ‘older’ GBS’ers (I’m talking around 40 and older) lately, there is a recurring theme, which i will explain, and I’m curious if anybody else besides the few I have spoken to feels the same way. I do admit to feeling similar at times too.
Let me start off by saying that all the people who spoke to me were either within the first couple of years of recovery, or 20 – 30 years Post and all were having difficulty with residuals. The following was expressed = [B]confusion, depression[/B] – would be a good word to use, and they feel like they are going through a [B]crisis[/B] and they dont know which way to turn or how to deal with it. All of them feel that they just want to walk out and not come back, some even expressed that it wouldnt be all that bad if they never woke up again. Someone explained feeling like there was someone else in their body and that body inside was going [B]CRAZY[/B], jumping up and down with frustration but never getting anywhere because it was [B]locked in[/B]. The ‘inside’, true person wanted to get out and run away. Nobody seems to know what to do, and the majority are are antidepressants etc. There was a general feeling of hopelessness most of the time.
– Im curious, are there only a few of us out there feeling the same or similar or is it more common than we think?
– Is this an age related thing ie do only the people in their 40’s, 50’s and older feel this way?
– If you do feel like this, is it possibly because of the lack of understanding and/or support from family, doctors and friends, or do you think its because of earlier trauma or illness related?
AnonymousJuly 26, 2007 at 11:14 pm
to me my reply is so subjective that i could discount it in a ny second. here goes – i think these folks need professional help. i don’t know if you are running into an anomaly or what, but, although i have heard of this reaction, i think/thought it was a w a minority. years ago i had a few days like you describe, but talked/mantraed myself out of it. never give up. never give in. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 27, 2007 at 12:15 am
You are correct …. I admit to being surprised at having spoken to a few who do feel this way. I was curious if everyone puts on a brave face and plasters a smile on their dial, and secretly deals with this struggle at home, or if this really is an anomaly.
In one of my conversations the day before yesterday, the question was asked if or how many other GBS’ers feel that way …. and if it had to do with psychological problems because of our ‘disability’, or if it was just general depression or a ‘midlife’ crises, or a possibility of the both, one compounding the other.
AnonymousJuly 27, 2007 at 1:19 am
Hi Ali, Interesting question. I’m in that age group, but I have not felt that way. It sounds like depression to me, or the stages of grieving haven’t been gone through yet. I was told by a psych that I smile and joke too much, that I’m in denial of my health situation-this was in the 2nd week of my first paralysis event. I just told him point blank-No I’m Not denying anything-I just am really Happy that I’m still Alive-it could be worse. Since I have already gone to the Otherside and Back, I have the right to be Happy since I can still live. I just have a very different outlook towards Life, and a Positive view on Life. I went through the stages for the upteenith time-have had other health issues that changed my normal life upside down. I have been called the EverReady Bunny by a few drs-I keep going and going… I think support has an equal role in accepting the changes in ones life, but I strongly believe that it has to start within oneself, nobody else can change the way you feel, think and so on, it has to start at homebase first, then let the rest of the team help. Just curious, were those people told they had a psych problem as their dx? For example, conversion disorder, all in their head type of a dx?
AnonymousJuly 27, 2007 at 6:36 am
i was diagnosed with depression a year before i got GBS and this is precisely how i felt. I was diagnosed with endogynous (sp?) depression as a result of a chemical imbalance rather than following a traumatic event. I am on a low dose SSRI which makes all the difference. Since i was diagnosed I have come across so many people who are also on anti-depressants. So my answer would be 1) depression is much more common than most people would think (and i would guess it would be more common in older age groups when the general stress of everyday life has had a chance to catch up with you and 2) i beleive it would be entirely “normal” to experience some kind of post traumatic stress disorder following GBS. Sometimes it takes a while for experiences to take their toll too … a friend of mine has developed PTSD 40 years later
AnonymousJuly 27, 2007 at 9:07 am
ditto cheryl & yolande. i think with some gbsers ‘what you see is what you get’ & others do put on the ‘good face’. i truly believed i would recover & told myself that for hours a day. some may say it was denial, but i called it part of my recovery. in the end i am quite reasonably recovered &, whether it is true or not, believe my positive attitude was instrumental. from years of being on these boards, i can vouch that anti-depress meds are the right thing for almost all who are depressed. they make a difference. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 27, 2007 at 9:53 am
Alison I would fit into that group, I’ll be 44 tomorrow. I do have similar experiences although it’s cyclical and coincides with boughts of fatigue and increased pain as another “residuals” crash comes on. Which in my case is about every 3 months. I would say that I’m about 65-70% recovered to what I was before GBS. I am an athlete and comparing my workout logs (cycling, running, and yoga) now to pre-GBS workout logs shows me in black and white just how much I’ve lost in terms of physical ability.
I have made a fantastic recovery given how bad it was and could have been but that doesn’t do me much good when I’m staring another “residual” crash in the face and have to take yet another month long time out. So I go through the emotional wringer one more time. I find that being aware of this cycle (if that’s what it is) helps me to be watchful when it’s coming on (I don’t always notice right away because I’m busy living my life and I tend to over look the minor inconvience of pain and fatigue). It also helps me to navigate my way through the emotions with less resistance. I feel I am going through the emotional part easier but it still bites that it happens at all.
I can relate to wanting to just dissapear but not to never wanting to wake up again. That would be much worse than putting up with the challenges that GBS have brought me. I’m a fighter and won’t give up. However there are times when I want to scream in the face of the person in front of me who sayes for the umpteenth time “be grateful it could have been so much worse.” Can they not hear me — I need to express my feelings and just be heard. And yes, I do tell them this frustrates me and I just need to be heard but people are people and this urge to paint a smiley face on everything that crawls seems too great for them to overcome. So I scream at them when I am alone and do my best to just let them be. Afterall they are doing the best they can as we all are.
I wonder how many years GBS aged my body. Maybe 10 or more would be my guess. I think there’s a big shock factor that comes with losing so much so quickly. Each time the residuals show up I’m reminded and it takes me to another level of surrender that isn’t always easy to accept.
All of this is true and so is the fact that when I am not upset over this I can walk through my life with acceptance and a fair amount of grace which I thank God for everyday.
AnonymousJuly 27, 2007 at 11:26 am
“I think there’s a big shock factor that comes with losing so much so quickly.” I think this is a big part of this. Life come at us so fast and recovery is so slow. FRUSTRATING to say the least.
To add to that factor of GBS aging us about ten years. At this age group the hormones are starting to let our bodies change and with that we are doubling up on some of the residuals. Decrease of stamina and strenght, foggy brains or senior moments. I have a tendancy to blame alot of this kind of thing on the GBS but also I try to remember that most of what GBS slammed me into my friends are also experiencing with the change in their hormones. Not to mention my hormones are up and down and non exsistant.
It is hard when given lemons to always make lemonade. So come up with new recipes as our lives change. I have put more emphasis on hobbies I had on the back burner and just look at life a little different now. I have lost many friends since becoming ill but the big shock is how much family members think of me as healed since I don’t have any residuals that rear their ugly head. My husband has become my best friend and my best support. Our caregivers hang in there for the full war, just not the first few battles. He can tell that I am tired and suggests we go home. I know he sees my fatigue before I start to feel it. I have tried to keep a very possitive attitude and he has adopted that too. It has been a nice change in our lives that we have been willing to make changes for each other. 😀
I do understand that most don’t have that kind of support at home and it is sometimes not the best of places to find someone to discuss problems. I would always tell people to seek help from professionals when it is depression or confusion. Always a good idea to get it worked out so it does not consume our lives. There is no humiliation in seeking education!
AnonymousJuly 27, 2007 at 11:32 am
Yes I think you probably explained it far better than I did. From what I ascertain from speaking to everyone, it does seem cyclical. I know when I go though a bad patch I do become depressed. I know stressful it is for my family to see me go through depression, and when I speak to others who are hurting so badly, it tares me up.
I think possibly part of problem seems to be the uncertainty of what lies ahead. I know for those who have recently had GBS, this is what was explained to me … its the not knowing how long the recovery will be, if recovery will be complete and obviously what residuals there will be and when the darn residuals will rear its head. Also its the fact of losing a career, or the possibility of loosing a career and possibly not being able to support ones family in the same manner as they have done for decades … this seems to be what causes a lot of frustration and depression. (Forgot to mention .. Family not understanding what they are going through, so its a lack of support)
I know for myself, 21 or so years on, having slowly got worse over the past 5 years, I find what really gets me down is not knowing where it will stop and what 50 or 60 may bring. Most of the time I am upbeat, however it is something I think about, so I can imagine those who have worse post residuals than mine, and may have the propensity to think a little more on the negative side, could possibly fall into depression more easily.
I do want to mention that those I have spoken to, besides for one, are on depression medication. They all try to have a positive outlook, and do when these bouts subside. I think there are those who are positive most of the time, and are able to positive talk themselves out of a depression. However I am beginning to realize that there are far more out there than I ever realized who have awful emotional scarring because of illness, and sometimes however had they try, its not that easy to positive talk themselves out of it.
AnonymousJuly 27, 2007 at 12:09 pm
Personally I think there is a good reason for gbs/cidp people to feel depressed. Look at what one has lost, compared to what one can now do. The rage inside can lead to depression. The fact that this syndrome changes your life from a normal, active one to one that might hold one back from normal activity. Some might not be able to fully accept the change, which is a normal reaction, and of course there are tons who blame themselves internally for not being able to provide, care for, or participate in theirs’ and others’ lives as they once did pre gbs/cidp. I think I handle my feelings the way I do because I’m allergic to too many medications and have taught myself other methods of dealing with life’s ups and downs. Its really one of those trial and error things for me, but since I have been practicing my methods for such a long time, I’m pretty good at it by now. I find that things are soo much better for me when I go head first into my problems, face them, and that makes my life very manageable. The fear of not knowing is the hardest thing to get over, it took me one major life and death experience to see that, which is what really changed my life and attitude for the better. Don’t give up, or give in, just take care.
AnonymousJuly 27, 2007 at 1:09 pm
Amen and more power to you Cheryl. We each have to find our own way but it’s so good that we have each other and our personal support groups to help us when we need picking up and dusting off.
One thing I do now that is new is the practice of yoga and meditation. I think there are many theraputic benefits especially to a person post GBS or CIDP for that matter. It surprises me that I haven’t seen any posts on it but then I may have just missed them.
My practice is strenuous at times, when I can manage that style but my core practice is more nuturing, it’s restorative and meditative in nature. My understanding is that this style of yoga gives the nervous system a deep form of relaxation by getting quiet and focusing in a meditative and healing way on the body during the practice. I think anyone could benefit from it. I always feel better and more rested on the nights I have a restorative yoga class and I think in the long run it is aiding my healing although I can’t point to any one thing–it’s a belief I have that I think it is well founded base on antedotal knowledge.
AnonymousJuly 27, 2007 at 8:21 pm
Hi everyone great topic. I believe some of us have chemical imbalance that causes are depression and we can sometimes control it on our own when it is mild but when events or life stressors happens then it get overwhelming at times. I had some of this problem most of my life. Major stresses like separating from my ex-husband who tells me he is transgender Female is one of them that happen in summer of 2000 got counseling for that but the DR realized I had anxiety which I had dealt with on my own. In 2004 found out I had ADHD got the right medication for that Dec 2006 which helps me a lot. Stop seeing the counselor in 2005 because wouldn’t give me the right medication for my ADHD. Now 2007 since January my body is falling apart and where I work I am being harassed by management and employees and most people I know don’t understand what I am going through with my CIDP possible Raynaud’s,Tendinitis in my hands that won’t go away and now hearing lost getting worse in both ears not sure why and also female problems below that needs to be checked out for precancerous cell.
I just got my first 4 days of IVIG this week and go next Monday for my 5th treatment.
I saw a counselor July 1st and she asked my what changed for me to made me want to go see her and I told her not much support from family and friends and very little from co-workers and management. Now my CIDP seem to have gotten a bit worse. So support and understanding of what we go through is the big thing here. We don’t get enough of it which causes us to get depress and also trying to accept the person we are now when other don’t accept us as we are. I was feeling good about myself but work didn’t like the fact I was on modified work and trying to get me to do regular work which is to hard on me and I can’t do. To them work related injuries are accommodated first and disabilities second. So I walk on egg shells at work.
Right now I see a counselor temporarily until I can get one full time and the temporarily one just rescheduled my next visit which I wish it wasn’t rescheduled. I saw the counselor 2 weeks ago and won’t see the person for another 2 weeks
Medication: My family DR needed to more research on what he feels would work for me and then went on holidays without writing me a prescription.
That is were I stand for now
Sorry for the long post
July 27, 2007 at 10:42 pm
I just walked home from a concert in the park in downtown Arlington Heights.
The moon is almost full and it’s a beautiful evening.
As I walked I thought about the canoe trip I took with friends and family, 2 years ago tommorow. By the following Saturday, I was in CCU and on life support. As I walked I could only thank God for recovery and a bit more time to spend with wife, friends, children and grand children. I was 64 then and now as I approach 67(January), I am able to walk and do most everything.
So I doubt it is an age thing. It could be easy to why me…..my feet feel like I’m walking on bunched up socks, my left eye waters a bit, my upper lip feels “numb” and my hands tingle….but hey I can enjoy the neighborhhod, an almost full moon, a walk home and concert with Cathie.
Granted my recovery is better than many, but maybe some of the folks need professional help.
I will pray for them.
AnonymousJuly 28, 2007 at 10:49 pm
it’s easy to put on a ‘good face’? But hard to explain why. Many have mentioned a ‘mourning process’ and, for some that is so. I do know I went thru one BIG TIME! at one point. Yet, the illness and problems, march on, and that it one frightening set of issues. Going to see a counsellor would do not one WHIT of good, as most have no concept of the differences that our nerves have done to our ‘normal lives’. Family, friends won’t ever GET it, unless they actually HAVE IT. It’s not fun trying to have non-pain/mobility med side effects discussions with friends when that is all your life has shrunk to. It is hard work thinking beyond that BOX?
When my docs ask me ‘How are YOU FEELING?’ I simply reply, as best as one can expect under these circumstances….because that is honest and as straight as I can be. I have good days and bad, moments that change hour by hour and I know I have no control over what happens or how. I just have to be careful how and when I walk, and where….do what I have to do on a sort of ‘paced-out’ basis or schedule then–get on with things.
What really scares me is that we are prescribed medications with the doc usually knowing little or zero about the interactions with any other meds I am on…I have found that many good and bad interactions have/are or could occur but not for their ‘timing’ in terms of taking them. I was almost prescribed a potentially dangerous anti-anxiety med [for another issue from another med] that could have cancelled the anti-seizure med I was taking for my pain….Our Neuros shouldn’t have to know about all the interactions that our other meds can cause, but, some of those meds are soo common they SHOULD KNOW, yet do not. The medication cross reference sources on the net are useless…as we are a total anomoly in these databases…
YES I get scared, Yes I get depressed, but I try to find out about all that effects and affects me to get to the roots of the causes of the depression.
As for the depression? Well, I can’t walk without thinking about it…I can’t even think about going on a plane trip…when would my legs work…or NOT? I really, really want to go and do something stupid and do some hard PLAYING! Like sleep deprivation, even grown-ups need to play and have fun?
AnonymousJuly 29, 2007 at 4:46 pm
Another middle aged woman on depression/anxiety meds. I’m turning 50 later in the year and I believe hormones are messing with me too. However, I have been on meds. off and on for 20 years and believe it was severe depression that put me open to get GBS. I’m slowly growing up… but not much. I mainly feel like a 15 year old emotionally. With the passing of both of my parents these past few years, I feel totally lost except when I am with you all! I go off and on to a therapist I have gone to for over 25 years and that helps when I am really down.
What I feel is most depressing to me is looking at my future being single and having to take care of myself financially. Working 40 hours a week is extremely hard. And I am faced with the possibility of needing to seek new employment due to a major change where I have been for over 6 years. So between career and romance futures unsure, I wouldn’t mind leaving this place a little earlier maybe than originally planned. This is mainly due to getting GBS – or I wonder if I am giving GBS too much credit?
Another confusing day, but NASCAR is on TV and I can escape into one of those cars and go fast, very fast. Ya, a little warped…
AnonymousJuly 30, 2007 at 2:23 am
Majority of illnesses cause a natural secondary situation-sense of loss/anxiety/fear/uncertainly. Doctors see this as depression/the main problem-especially in women and they go no further in diagnosing the real cause. When I have gone to a local MS chapter meetings many have told me that they were diagnosed over and over with plain ole depression or told they were simply crazy.
The same with having severe pain-scares doctors like depression does.
Psychiatric drugs are vastly overrated and over prescribed with untold awful side effects that the medical guys have little if any idea about. I’ve known too many women given prescriptions for depression when it was a real physical problem undiagnosed. Read new book “How Doctors Think”-interesting.
Putting on a happy face is how I’ve been since a kid-I like to smile-that’s just my nature. With CIDP I look okay on the outside so you’d never know I’m trying so hard to not show the pain.
I like to read or dig in my flower garden-doing something I care about makes me feel better. I’m responsible for my own happiness and look to me for it. The periods of it may be vary but that okay. I laugh at myself and the cat doesn’t care what I do.Life goes up and down like my CIDP.
I understand what you are saying.No one who hasn’t experienced some illness like GBS/CIDP has a clue.
AnonymousJuly 30, 2007 at 2:26 am
Ali, you and I have talked before, and I often feel much the same. I think some of us may actually have some sort of Post Traumatic Stress disorder. For myself personally, depression is part of my family so I know it wasn’t the GBS that caused it. But the residuals and worsening fatigue, the lack of support from docs, the fear, and just turning “middle-aged” all compound on one another. For now, I think our best bet is to rely on eachother for support and not to allow our docs to dismiss our concerns.
AnonymousJuly 31, 2007 at 12:18 am
I think a lot might depend on how long each person’s hospital stay is/was and how incapacitated they are/were. Granted, I’m only 9 weeks into this unheard of virus and just a care giver, but my guess is depression of course would be normal. It’s like any major illness you recover from- anytime something seems the slightest bit out of whack, you instantly panic and think, not again. Plus, if someone was in the hospital for months and months on end, unable to move or speak, that would have to lead to some pretty depressing thoughts from time to time.
I know most people do try to put on a happy face, so as not to worry others, especially those who think you’re 100% cured, but just like anything in life, when your body tells you to break down and cry, just do it. That release usually makes you feel better in the long run anyway.
Again, I hope I don’t offend anyone since I really don’t know what I’m talking about. It just seems to me that depression is normal- I think it would be strange for someone to not feel depressed after this ordeal. That’s not to say, I would expect everyone to be all doom and gloom, it’s just the normal emotional roller coaster.
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