Has it really been twelve years?
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January 7, 2009 at 4:40 pm
Has it really been twelve years?
Last year I posted a detailed note about my GBS experience, post GBS eleven years. It has become a ritual for me to use this time of the year after the holidays to do a personal inventory, for it seems only fitting since I was discharged from the hospital on January sixth over a decade ago.
Yes, it has been twelve years since my GBS episode, yet at times it seems like only yesterday. I am thrilled to death to have the capacity to write this post, but feel sad while doing so. I have heard it said that we do tend to remember significant events with vivid details even if we want to forget them. Such is my case as I recall my experiences twelve years ago. It seems like yesterday , laying in the hospital bed looking out on a Christmas eve, watching the CareFlight chopper take off from the roof adjacent from my room to help some poor soul in need. I remember fantasizing that Santa was the pilot and he was off to deliver gifts to the children- I wanted to go with him and help place the gifts under the tree…if only I could raise my head from the pillow. Alas, I was immobile with a catheter in my chest, as if shot by an arrow it pinned me to the bed.
I found it especially difficult to sit down and write this year because unfortunately I have nothing good to report other than I have survived yet another year. With such sentiment one might correctly guess I suffer from depression. I am a dysthymic by definition, with fun anxiety attacks thrown in from time to time. I can identify times this year when I felt joy and happiness and sheer terror. It seems my nature these days to forget about how I favorably impact the lives of those I love only to remember the negative stuff that reinforces certain low aspects of my self worth, which seems to grate upon my self-esteem as time goes on. I guess this is why I am having such a difficult time thinking clearly about my goals in life and confused as to how to achieve them. I know I have helped at least one family member this year and feel proud to have the capacity to do so. Yet it seems that since I turn fifty next week I cannot help but feel at a loss as to how to proceed toward self actualization and bliss. I try each day to turn my life over to GOD, to ask for divine guidance. However, prayer does not get the laundry clean or make mortgage payments, for I lack adequate energy to get so many things done I want to do. If you go over to Wikipedia and look up the term chronic fatigue you will see what has become my essence, as if my core has turned from Rocker the Contributor to Rocker the Fatigued. Yikes, I do apologize to those who read this and think, “What has this guy to complain about… I can’t even walk” or whatnot. Yes, I am like a child at times, an immature sole who takes so much for granted. I feel guilty for not being a stronger character when there are others who suffer so much more than I, but once a year I must express my feelings of frustration and despair despite knowing others have it a lot worse than me.
I struggle to come to terms with my life situation and a personal inventory each year is part of my trying to keep my own sanity in a world that, at times, seems quite insane. My lifestyle has changed me so much I do not feel like I am the same person I was prior to my illness. Each year I move further from that existence and resent the fact that I have had to make such changes. I surmise that my GBS experience has been so traumatic I have had a personality reorganization similar to what an adolescent experiences after the body begins to change drastically. I find writing is a great outlet for me since I find it difficult to express my feelings verbally other than sounding like some bantering oracle, but the medications I am on ease my depression and clutter my thoughts so I have not written much this past year. Also, I have short term memory issues and tend to forget what I was trying to express. Have I mentioned I have short term memory issues? Oh, so I have. DOH. Hey, at least I remembered to do an inventory! LOL
Unfortunately, my family and most of my significant others have forgotten about me being sick, since it was so long ago. You know, they say that self worth is based upon how you think others perceive you, but that is a half truth because even if they have a great understanding of my persona it might be skewed by their lack of understanding. What I mean is that I get the sense that many family members- my Mother included- must see me as lazy. The other day I asked my aging Mother if she sees me as disabled. She replied, “No- you just have to find the right job in sales and you will be fine”. I was taken back by this comment and meditated upon it, coming to the conclusion that few who love me understand my plight- even those whom I had assumed understand my life situation. If I relied upon feedback as to how I think others perceive me I would have shot myself in the head long ago. I conclude that self worth is based upon how well you can trick your mind into a belief that your presence on Earth is of significance. The thing is that since I do not live as a productive life as I would like I need to find better trick to fool myself. 🙂
It is hard for others who do not suffer from fatigue to understand what it is like to live with a five hundred pound gorilla on your back all of the time. For some, it is impossible because they lack the ability to feel empathy. Rather, such folk exude sympathy, which does little for understanding or comfort. My closes friend can relate because she experiences fatigue related to injury from an auto accident, so we bond as fellow fatigued, compare notes and try to support each other. I thought of facilitating a support group for the fatigued, but how many would have enough energy on any given day after work to attend? hehehe She thinks I should apply for SS disability, but I am still in denial. Besides I am too borderline to receive benefits, especially after reading how much difficulty GBSers who are a lot sicker have with receiving benefits. Yes, I have not had any one job longer than twelve months over the past twelve years, that I suffer from severe Apnia and dysthymica, but I can walk and talk… I look too normal for most to conceptualize I am partly disabled. At times I even fool myself into thinking I am not disabled, just a lazy son of a ***** who wants a free hand out! The truth is I am borderline, not sick enough to be fully disabled and not healthy enough to work full time, which I will continue to try to do out of necessity. So, I will lie on my resume and try to offer a coherent picture for potential employers, even though while interviewing I’d like to say, “I’m . %*)#@ tired all of the time and doubt I will last here too long because I probably will need a lot of sick days”. And when a friend says, “Rocker, all you need is some exercise to feel better about yourself” I restrain my desire to punch him in the face. I am sure I could have mustered enough energy for just one good chop, which would be great exercise, then I could take a nap! But what good does it all do? I bite my lip and feel that authenticity has once again escaped me.
My plans for the new year? Well, unemployed again effective December third, so time to recreate another resume. This time, I plan to use “self employed” to BS the gaps in employment, omit the two jobs I had for three months each and talk about how self employment did not fit my lifestyle. Tell me how doing such a thing is good for my self worth! Hey, such is life as a fatigued person who has no significant other to provide care and financial support. Such is my life post GBS. Any rich women out there interested in a fatigued man who has a good sense of humor? Please send her my way. In the mean time, I will have to figure out how I might work part time and earn enough to live on, for those six figure income days (along with my savings) seem a distant memory as is my sense of vitality. That said, so many others have such greater issues I will go on the rest of the year without complaint, thankful for what I do have. After all, each day is a gift post GBS and I do realize this and appreciate it. I know I have purpose in life and will make the best of it, with great motivation to help someone else when I can.
In closing, I must apologies to the the recent forum visitor since such notes may raise anxiety for the future. I still think this Forum needs a closed area for us residual folk, a place where the new comers cannot get to so those of use with residuals might be candid without concern for painting such a rosy picture. Anyway, I do think the overwhelming majority of our GBS fan club recover fully and you should not concern yourself with long term issues.
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January 7, 2009 at 8:14 pm
Hi Rocker,
That was a very profound, heartfelt and well-written post. It blew me away as I can absolutely relate to thinking pre-GBS to post-GBS and the huge difference.
You may want to consider a career in writing. You can work from home and make plenty $$$. 😀
Take care and best wishes!!
Tina
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January 7, 2009 at 8:31 pm
Rocker.
Oct., Nov., and Dec. of 2007, I lay in my hospital bed watching CareFlight chopper land and take off from the roof adjacent from my room. As I watched I closed my eyes and fantasized that I could feel the wind from the blades on my face and blowing my hair. We must have been in the same hospital (MVH). I am not fully recovered but hope for more improvement.
In your account of this past year you have expressed many things that I have experienced and thought of myself.
Thank you for writing your account of this past year.
I wish for you a better year in 2009.
Take care
Shirley -
January 8, 2009 at 4:01 am
Hi Rocker
I can relate to many things you’ve said in your post. I read your previous posts a while ago and I’m glad you came back to share your thoughts with us.
Thank you for your beautifully written post. I wish you all the best for 2009.
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January 8, 2009 at 6:04 pm
Hi Rocker: You know I can relate as fatigue is so much part of my life. And I know you have heard before how well you write, but let me say it one more time-you write and express your plight and ours very beautifully. Self-worth is very often based on what others tell us about ourselves, but at some point we realize that nobody knows us like we do ourselves. Self-worth does not have to come from what we do or who we help but just from who we are. If we can be the best version of ourselves that is enough-and maybe who we are means resting a whole lot more than others do. My couch is curved to fit my body proportions by now and that surely is a heck of an accomplishment! And my cat is sure my destiny in life was to keep it company resting all day.
I always gain something from yours posts and I think it so important to remind others that we all don’t get well, that one way or another many of us have to live with residuals or CIDP every day of our lives. It might scare some, but residuals are a fact of life for almost all of us. Some escape for a long time, some have only mild cases, but the truth is not always so rosy. I think you help keep us real and grounded. I hope in the new year that, whatever happens in your outer situation, you come to value yourself as a caring, suffering and compassionate person. Jeff -
January 9, 2009 at 8:56 am
I can surely relate to your post and it was very well written. Almost sounded just like me and many others. The Chronic Fatigue issue we all get is a hard chore to deal with. But everything you wrote I can relate too! The memories never go away. Every year I too think about my diagnosis and what I went through. Scary thinking back and also scary thinking what could have happened back then. Meaning it could have been a whole lot worse. I hope that this year brings a much brighter future for you and you start getting energy that you have not had in a very long time.
Hugs
Linda H -
January 10, 2009 at 2:07 am
Thank you for the post. I can relate to your fatigue and feel like others see me as lazy. Yeah, even from my own family. It has been longer for me and have not been able to work a day since GBS. Oh, I get disability SS, but that is just a servival kit compared to what I should be making. That gets me depressed as much as anything. I feel like I have cheated my family from having so many things that I should be able to afford to buy for them. I think you can get disability SS if you would just apply; with an SS attorney. You could definitely write for magazines or newspapers or write your own books …if you have enough energy ? Rocker, I will tell you what my alcoholic brother was told when when he could not stay away from a drink long enoght to work. When he went to the attorney about this, he was in early fiftys then, the attorney told him right off the bat, “You talk too smart, and that will make it harder to get your SS”. Rocker, sometimes it helps to get your SS if you are willing to play dumb. I know, it is dishonest and you may not want to do that. I thought of a answering service for you, if you can stay awake that long, because you talk smark and it would be great, for say; something like a Doctors office and other similar places. Just a thought Rocker as like I say only you know your limits. God bless you and a special prayer for you my friend.
Drummer
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January 10, 2009 at 4:04 am
Hey Rocker, I want to say [I]CONGRATULATIONS![/I] 12 years is a long time for all that you have had to deal with 😮 But you have survived and you have given of yourself to this “wacky” (said with love 😉 family. I am so grateful for your postings. This post was super as it put into words what the rest of us would like to express. This is not an easy journey, whether it be a short time or a long time (14 years for me), but with the support of this family each of us keeps moving, one way or another 😀
So, I say [SIZE=”5″][COLOR=”DeepSkyBlue”]THANK YOU ![/COLOR][/SIZE]
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January 10, 2009 at 5:59 am
Rocker,
I just read in [B]I.G. Living [/B]magazine that Chronic Fatigue is associated with Celiac Disease. I know one of the ladies on the forum said she is being tested for Celiac Disease. I would have thought with the many tests that we go through, Celiac Disease would have been included. It was for me, but you might want to check to see if that has been eliminated for you.
I know the incredible fatigue with CIDP, but mine has greatly improved with IVIG. Just maybe, you could have an additional cause.
Good luck.
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January 10, 2009 at 9:32 am
My Dear Rocker Friend,
Twelve years for me next month… If I had the skill in writing that you have, this post could have been written by me. I know we talked this way a year or so ago – I’m not rich, dang it.
I’m unemployed now (by choice in September) and am scared to death on finding a new job (which I have to do by next month with no more savings). So I guess we don’t mention anything about our ‘condition’ to a prospective employer??? I am thinking of letting my Cobra insurance go as it is so expensive and such a hugh deductible. What do you think?
I too have a friend who says I should apply for SS. I think Jeff has the right angle of not being too smart when this situation is approached. I wish someone in our shoes was a lawyer that would assist us ****dreaming****
I have really been thinking of putting out a post just like this one and will closely watch responses.
A toast to you 😀
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January 12, 2009 at 12:27 am
Rocker,
WOW, as exhausted as I am right now, I couldn’t quit reading your post. You definitely have a gift for writing, & I was a high school English teacher before I came down with a severe case of CIDP almost 7 years ago at age 48. I did not make the “great recovery”, many of us do not. I can walk with AFOs & take a cane when I go out, but fatigue continues to be my worst residual. Of course I miss playing tennis, running, downhill skiing, cross-country skiing, etc., but needing 10-12 hours of sleep a day is still the hardest residual to have to try to explain to my family.I am not rich, but financially secure, & if I weren’t happily married for almost 35 years, I would take you up on your offer, LOL! My retired husband can watch TV until 1:00 in the morning, get up around 8:00 & not need a nap; I would love to live with someone who needed a nap every afternoon. Keep plugging along as you have been, what choice do we have?
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January 14, 2009 at 9:05 pm
Thank you all four you kind comments. I know we GBSers with residuals can relate to certain themes, which somehow makes them more bearable. You remind me that I am not alone although I wish I were because no one should have to suffer. Alas, we are human and must circum to all the trials and tribulations thrown at us.
As far as writing for a living, well, it would be nice but I have no idea how to get started. Additionally, my understanding is the writing requires a great deal of effort even though it seems easy. That is, writing as a professional who must write about so many things. That said I would find such a career rewarding, as I would so many other careers if only my situation were different.
/me hopes a rich person send Rocker a fat check and he will write them a story:) 😮
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January 16, 2009 at 9:45 am
HI Rocker: I wrote 4 books that were published and many articles before I got sick. Since then I have not been able to write anything but a few book reviews, because, as you say, writing is intensely hard work. I can’t concentrate nor sit that long any more. But I wonder if you have tried journal writing. I can do that lying down and do it just for myself and find it very helpful and interesting. It is a way to process problems and work through physical pain using writing as a way to talk with oneself. You might try it some time if you have not yet-in fact, I recommend it to anyone who has chronic pain and fatigue. Jeff
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January 16, 2009 at 10:30 am
I would love to write a book but don’t even know how to get started. Were your books published and I would love to know the titles. Who knows? I might find your book in Ebay and decide to read it! I do enjoy reading alot! I actually tried writing a book many years back but ended up getting mind bogged and just could not get my words right.
Maybe one day my son will take my notes and get a big fat check Ron! LOL! Looks like I will just stay poor! -
January 20, 2009 at 3:19 pm
I had no idea how hard it was to write, and said only you knew your situation and what you could do. Someone once said, “We made our mistake when we first went to work. If we never had went to work we could be getting a SSI checks and food stamps. We would have the best medical, prescriptions, dental, and eye glass insurance of any working person”.
Well, that said…I would still prefer to be a dummy and go to work each day !!! Just think about it…who is really the smart one in this case ? lol 🙂
Jeff, I did not know that you were a writer. God’s best for you too my friend. I never did have the patience to sit down and read a book. My mind would always think of so many other things I should be doing. lol 🙂 I wish I did like to read books now that I am sick.
Rocker, you take care of your health the best you can and just try to overlook people who may judge you, and don’t know a thing about your health problems. I will be talking at you later. 🙂God bless,
Drummer
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