11 years post GBS
AnonymousJanuary 17, 2008 at 9:54 pm
Yep, eleven years ago today I left the hospital. I remember the ride home because after being in the hospital for three weeks I found the traffic and activities outside my reclusive cocoon quite disturbing and overwhelming, the cars rushing by and the pedestrians running about. I sat in the car on my way home thinking how lucky I was to get out alive with a great prognosis for full recovery. I recall my exit interview with the chief of Neurological Studies; he said “You may feel like you have been through the ringer right now, but in a year you will be back to playing your bass and feeling pretty much as you did before your episode”. I took his word, and later regretted vesting so much of my emotional and physical self to the promise of a full recovery. Is it wrong to resent a man who helped save your life?
While in the hospital I received 8 plasmapheresis treatments, with another 4 scheduled as a part of my outpatient treatment plan. My blood Dr. was a blessing in that she was an older person with 40 years of experience related to GBS. She justified the additional four treatment sessions with a statement I have yet to read repeated on any of the forums I visit. “Your protein levels in your cerebral spinal fluids are very high- in the upper 5% of patients I have treated- so I think we should give you additional outpatient sessions”. Have any of you read that protein levels might be an indicator related to damage of the nervous system? I wonder if there is a correlation between protein levels and prognosis or perhaps residuals.
Anyway, I feel certain that the 12 treatments along with the rapid intervention I received favorably effected my recovery. Quick action related to this disease does reduce damage, but it seems to me they are not related to the residual of fatigue. You see, my particular case was different than most in that it was not an ascending process. Rather, I got struck in the left side of my face first, and in my left arm suggesting I may have had a stroke or heart attack. So, the medical staff was quick to see my condition was life threatening. Once they ruled out a stroke and heart attack they were quick to diagnosis GBS. However, I lived with my first year with one eye open. As the song goes “Sleep with one eye open”, and no one could sneak up on you in the dark of night. This is a good thing, since I could only walk a few steps before toppling over into a quivering mass of disconnected muscle tissue. I needed to keep an eye out because flight or fight response was not an option; in the event of danger I could shuffle to safety because with one eye open all of the time I could see danger well before it became a threat. I drooled a lot, too, because my lower left lip did not want to cooperate with the rest of my body, I assume because it did not want to see my left eye struggling on its own.
Within the first year I did show rapid recovery. I slowly began to walk and graduated physical therapy with flying colors. Did you know that the letter “B” is a real pain in the ass when your lower left lip wants to just sit there? Other than that, my hands and legs were team players and I began to play my Bass guitar after six months. It was strange in that I played for twenty years feeling my fingers connected to the steel, like lovers intimate for such a long time only to find thick sheets prevented them from a true embrace. Yeah, it was like I was playing Bass while wearing surgical gloves. In fact, the skin on the left side of my body decided to remain unfeeling no matter what I promised if only it would comply. It was like a line was drawn down the center of my body, where the right side showed improvement and offered detailed contrast with that lousy left side, where that punk lip and paranoid eye reside. I noticed a trend of revolution over there and I did not like how it felt.
I worked for a great company who was quite supportive. They paid my health care premiums and supported my ability to gradually return to a full time position as a major account executive. In fact, even when they decided to terminate my base salary after three months absence, they agreed to pay me commissions on accounts I set up prior to my illness. I made $82,000 during my first year of recovery without my base salary because I worked hard and many hours the year before, for I had the energy of two people. My effort paid off as those established accounts kept doing business with me despite my inability to visit them in person. What’s more, the fellow sales people and upper management folk felt sorry for me and my ordeal feeling grateful they were not in similar circumstance.
During my second year, the pain mostly resided and I was able to walk half mile treks in the woods without falling down. My sure footedness confirmed the words my neurologist uttered upon my discharge; I was walking toward full recovery. I marched to the tune of a happy man who embraced the shadows of looming death and came out the other side into the sunlight somewhat disheveled, yet determined to get well. Throughout that second year I showed steady progress, but at smaller increments and improvements in motor function set across longer durations. My left eye lid finally joined the team after much support from the rest of my body, but that lower left lip remained disenfranchised, determined to embarrass me at business luncheons by permitting vast amounts of liquids and food stuffs to escape my face. I could not chew with my mouth closed. I thought such an inconvenience was acceptable since from all I read I still had another year to recover my faculties, to become fully recovered and once again the powerhouse of a 40 year young man in the midst of a successful career; I wanted to once again become the productive adult, the person with high esteem and ambition I knew just a few years ago. In fact, I had motivation and drive, incentive to continue to work a strong treatment plan.
My sense of fatigue remains with me, though, and I rationalized that once the rest of my body healed it would go away. After all, full recovery included return of my energy levels, right? I ignored any suggestion that I may have ongoing issues because only losers think as such. I decided to use my will power to get through this tough time, to force my body to get back on track. I exercised regularly, but I knew not to overdo it, too. I returned to work full time, but I was unable to travel, knowing it would nock the heck out of me. My sales numbers began to decline and the President felt concerned in that I was no longer showing progress upwards. Rather, my accounts began to show effects of neglect. I attribute this, in part, to telling my boss I was driving somewhere to see a client, only to go home and take a nap. After all, there are just so many sick days one can take before the red flags of personal begin to waive high. So, like it or not I had to slack a bit, but I thought my feeling tired would eventually diminish. In the mean time, I would use some of my savings to compensate for the loss of income, to keep the mortgage up to date and even with debilitating illness my credit line remained stellar.
The third year was somehow more difficult than that my first and second. Yikes, I can think of this in hindsight scratching my head- did I just say year three was tougher than recovering from the heavy throws of complete disability? I think it was when I started to feel real anxious that I might not fully recover, that my work and sexual drive was not returning as scheduled. I felt tired all of the time, which was as I thought normal for the first two years, but now my energy should have returned. Although I felt concerned I figured it might be a normal process of recovery from GBS. Besides, I had no one with whom to compare notes and doubting the future was absolutely not permitted within my treatment plans; a positive attitude got me thus far and I was no doubting Thomas. I ignored the notion that I might have long term issues and marched along, toward full recovery determined to fulfill my prognosis.
Knowing I was the best door opener he had ever seen, my VP of Sales was quite patient with me as I slowly recovered. Yep, I could kick a door open to any corporation and through persistence and charm receive an audience with whomever I choose to see. However, I had a problem. They expected me to travel a lot in that the position required face to face meetings with decision maker who lived in the big cities. I recall scheduling my first salient into NYC, setting up many appointments and determined to close the deals. My flight from Dayton to NYC totally wiped me out, realizing in reflection that I thought I was well enough to handle the stresses of travel. Nope. I made it to my hotel and had to cancel my afternoon appointments. The following day I went to see clients, but I was so tired I must have appeared disinterested to my potential accounts. I am sure they thought I was sick with the flu or something. Positive energy in sales is real important and instead of brimming with enthusiasm I sucked energy from everyone I met that day. My return flight was just as bad, moving through the airport at a snails pace wrought with distress that I couldn’t travel as I used to. I laughed at myself looking at my reflection in the glass of a storefront window. Apparently, I slobbered half of my Coke all over the lapel of my suit and I looked like Quasimodo dragging my carry on bag. I said to myself, “Master, Master, I can’t climb to the bell tower anymore”. I sat down in a chair and fell asleep. I missed my flight and had to wait six hours for another one. I did not make it to work the following morning.
AnonymousJanuary 17, 2008 at 9:55 pm
As you can imagine, eventually I had to throw in the towel at work. I did so first and quit before I could get fired. I fell into a greater depression than even while in the hospital while being tortured with spinals and conductivity tests or a seeping catheter in my chest, reinforced overnight with sand bags to quell the bleeding until the incompetent twit could return to fix his botched work. My attitude began to change toward the dark side. My family and support networks began to diminish, as I stopped calling friends or rejected offers to do something simply because I felt so tired. I felt so tired all the time and they did not understand. I mean, if you looked at me you would be hard pressed to see any physiological damage. So, how is it that someone with great capacity for work and with such a positive demeanor now decided to withdraw? The reality is I became frustrated with myself and lost faith in my abilities. I became anxious that I was not fully recovering, since I showed no signs of improvement. It seemed that feeling of carrying fifty pounds of rocks on my back would not go away. What’s more, when I returned to my Neurologist he said “There is no sense if putting you through further testing. If you have nerve damage there really is no treatment for it.” I began to do my own research.
It was during my forth year of recovery I discovered this Forum and another in Europe specifically related to GBS. I learned others were experiencing similar problems. I went to see my general practitioner, hoping there might be some magic bullet to cure my woes. But all he could do is shake his head and suggest I see a neurologist. I learned that even the brightest medical people are stumped by fatigue and neurological issues. They are baffling disorders even to those who study these phenomena their entire lives! So, I do respect the professional who says, “I do not know how to treat you”. I ‘ve learned that such words are solace when compared to the incompetent who thinks they know what they are doing. I tried to forgive my neurologist for his error in my prognosis, for most of the literature at the time indicated that GBS was a short term illness that all patients “fully recover”.
I am not sure if I want to expound upon the remaining seven years of my ‘recovery’. Let me just say that I continued to move from job to job in sales, at times showing enough work to justify continued employment, but my depression worsened and I fell into despair. I got fired a few times and a few years ago felt my first full blown anxiety attack. I used my nest egg, once considerable, to offset my ever declining income. Last year, I cashed in my last 401K, and I fear I may have to sell my house this year. A good friend said to me the other day after a candid conversation, “You should feel better about yourself: not many could have avoided financial ruin going ten years without earning a decent living”. Yes, I sure feel proud of my life situation. NOT.
Lax health coverage has left me frequently without benefits, so I go off medications I cannot afford. Most recently, after suffering from bouts of gout and anxiety attacks, I cowered sufficiently to seek out community services. Being brought up in a family fraught with puritan work ethics, I cannot but feel disappointed about myself despite professional feedback that “It is not your fault”. That may be true, but I still feel accountable for my own recovery, which is not going so well. I find it ever more difficult to latch my thoughts onto any sense of accomplishment, but I am sure that is my dysthymic condition getting the better of me. You know, my chronic depression only exacerbates my sense of fatigue.
Last month I had an episode of gout and went to the ‘free clinic’ which only cost me ten bucks- go figure. The attending physician- well, she was actually a ‘health practitioner’- took some of my blood to check my uric acid levels and prescribed Allopurinol- fortunately a $4 prescription. However, the other day I received a $90 bill from the blood testing company. When I called the clinic they informed me that in-house services were free, not blood tests! After calling the lab in question they sent me forms so I might apply for an exclusion. The suckers wanted to run a full financial background on me and demanded I release any and all asset information to them. I threw away the papers because I have no desire for them to inform any creditors I may be applying for negation of my financial obligations. Yikes, I may need to borrow money if I do not find a job soon and I do not want this kind of thing on my credit report.
On a related note, a few months ago I borrowed $10,000 from my aged Father. He is in a position to extend me the loan knowing I have equity in my house if it came to such resolution. Let me tell you, I felt like crap asking him for money because I have always been self sufficient. That, and I do not think he understands my situation even though he makes great effort to do so. Is it just me or do others have a hard time sharing what it is like to live with chronic fatigue and depression? Honestly, I would have rather spent time at a dentist getting my teeth pulled without Novocain. I must interject that Novocain freaks me out because it feels a lot like when I was in the hospital and during the subsequent few years of recovery.
Today, I visited my psychiatrist at the community health center who informed me that they could no longer get free samples of my antidepressants, that I should apply for free meds or pay for them myself. I presented the prescription to my pharmacist: They cost $109 for 30 of the little suckers. The pharmacist said “Good thing they have a generic or it would cost you $169”. Hence, in the mean time, we are exploring an alternate antidepressants. I find it ironic that I finally stooped low enough to call upon community services only to find hidden costs I did not expect. Note to self: nothing in life is free. The only saving grace I received was in a conversation with another patient in the waiting room, another professional down on his luck. He reminded me that I have put a ton of money into the system, that I shouldn’t feel bad about drawing from such resources. It eased my guilt in thinking I am such a low life. After all, this is why such services are available- my pre-GBS tax dollars at work! LOL
In closing, let me summarize that I have had to change my lifestyle so much it pains me to think about it. I spend most of my hours at home trying to avoid spending money and feeling so lousy with fatigue and depression. I distract these negative thoughts by creating cyber-domains and playing team orient gaming with virtual friends- some of whom are in a similar situation. On occasion I write about how I feel or a short story to distract myself. I find writing is a good distraction other than when it comes to an annual post like this one. I still play Bass, but only as a sit-in arrangement because when I am working I do not have the energy to practice and learn new materials, not to mention perform. So, I go out to blues jams and express my feelings there. Yes, I can now play one heck of a blues because I feel it. I have the blues and can share it through my guitar. I hold back at times because expression of my true essence would clear the bar.
Eleven years post-GBS and I am still hanging in there. I feel thankful that I do not feel suicidal or homicidal for that matter. I do have a lot to be grateful for and try not to take anything for granted. I would, however, trade my left arm for my old sense of vitality. I miss my old lifestyle, but I am now ten+ years older, just shy of 50. I have no retirement plan other than doing a hold up at a federal bank, which would get me into the Federal Penitentiary Retirement program. That, or perhaps I might fall in love with some lovely woman who has lots of money. Rats, I ‘m in love with a poor lady who tolerates my shortcomings and is as broke as yours truly.
I’d bet some of you who have read my diatribe to the end are wishing for a happy ending. Well, next year I will offer an update. One can never tell what may happen and I am still swinging. It is just that I have to take a nap after every round these days and I still feel lousy about it. Then again, I am alive and feel I am here for some reason. The way I look at it GBS really screwed me up, but at least GOD didn’t drop a safe on my head. So, there must be a more favorable aspect to my story down the road I hope to share with you someday.
There, I feel better for posting this here with hope some of you might feel empathy because misery loves company 🙂
January 18, 2008 at 9:48 am
Live is a b i t c h and we live it. I was told this same I would fully recover.. now after my secound round of GBS they no longer say you will recover. so yes I understand your feeling and it is **** that in our best part of live when we should be working and meeting people we are stuck home becouse we have no engergy.
xoxooxoxoxo from Iceland, and rember one day at the time and make it the best day you have lived.
January 18, 2008 at 10:36 am
You have traveled quite a journey! I have to admit, the journey scares me, that my 11 year old may encounter the same feeling. I hope this is not what we have to look forward too as Kevin as he has a long life ahead of him. I hope you, my son, all on this site catch a break soon.
Dawn Kevies mom
AnonymousJanuary 18, 2008 at 11:39 am
Rocker, it is [U]so good[/U] to see you around again 😀 There are way to many of us who could edit your story to make it our own 😮 What a journey, eh? No health insurance, retirement or savings and I just “spent” $8,000 in the ER/ICU with a possible heart attack (turned out to be gastritis!!). Having been raised with similar “mores”, this just plain sucks 😡 And it makes me wonder how many are out there, suffering, that we don’t know about . . .
On a bright note ~ my son is going into neuro/muscular medicine as a result of “our” experiences. Just one more year till his residency in physiatry where he’ll be helping others on a daily basis. Yes, I am proud 🙂
AnonymousJanuary 18, 2008 at 1:47 pm
You beat me to the punch on 11 years – it was right at the beginning of February 1997 when I started having symptoms. Bottom line, we are both still here… for better or for worse?!?!:eek:
When this migraine goes away, I will read your ‘book’ and I am looking forward to it.
[I]P.S. I have been getting out a little and going to events for the Oklahoma Blues Society (but leave around 8pm before I go to sleep listening). Apparently, Oklahoma City is very active with local blues musicians! [/I]
AnonymousJanuary 18, 2008 at 9:15 pm
Hi Rocker: As always I was touched by your writings. What a journey. As I near my third year anniversary my only real fear is that my pain will never go away. I tried to change pain meds last week and had a horrendous week and have had to go back to oxycontin which works very well but costs a fortune and is not covered by my insurance co. My fatigue never lets up and I have mostly stopped going out at night. Thank God I can work part time and make enough to support my wife and myself, but some days after working it is all I can do to get in bed and listen to a book. I have rediscovered the joys of listening to rather than reading books and have fun playing with my software and making my own audio books. I recommend audio books to people with fatigue as it is a lot easier to listen than to read. Anyway I enjoyed reading your long posts and am glad you shared your story. Best to you, Jeff
AnonymousJanuary 20, 2008 at 12:32 am
You know, my journey seems so light when compared to others around here. In comparison I am doing OK, so although I am depressed, with sleep apnea, gout and fatigue I still have some spunk! 🙂
Helga, it does suck. I had no idea ho much vitality played in my life until it went away. It reminds me of a scene in The Princess Bride where the hero gets his life sucked out of him by a sinister contraption, rendering him “partly dead but not… mostly dead”, as Billy Crystal put it. LOL My favorite line in the movie was after he and his wife waive goodbye: “Have fun storming the castle”. heheh Anyway, that part of the movie gives me chills.
Dawn Kevies mom, please do not worry. Most get well and do not have residuals of any kind. You know, I always feel guilty posting as above in a general forum, strongly think a closed or earmarked sector of this forum for those with residuals would be far more appropriate because I know folks like you read these threads and it must scare the heck out of you. The sad thing is this is the only place I can post where other GBSers can relate and I do feel a need to express my issues for some reason. So please do not feel anxious because most who are senior members here with POST GBS issues are in the minority!
Hi Judi! A Son who is a doctor! Wow, that is fantastic. Ask him if he would put me up once I reach sixty? 🙂 You know Dad who has always been a hard worker doesn’t like me to complain or grumble. He says “Pull yourself up by your own bootstraps”. LOL Last time I told him that I’ve pulled so hard they are broken and I just cannot get a grip!
Come on Chrissy, clean those glasses and read! I know we share many things in common, and wish you had seen me when I was a dancer at Chip n Dales! LOL
Jeff thanks for the nice compliment. I do need an editor :(. I listen to 3-4 books on tape a week, so we should share each other’s good book list. I guess in review of my story I might add that at that third year mark, when recovery is slowing, if you feel depressed go find a good therapist! I delayed this action and in retrospect I realize if I found help earlier- as opposed to denying the need for professional help – I might be better off today.
AnonymousJanuary 20, 2008 at 8:35 am
You absolutely need to write a book and with your vast expertise in sales why aren’t you teaching sales techniques to those who could gain knowledge through both your selling skills and your life experiences?
I’m not a GBSer but rather a Mom of GBSer who has had 2 rounds, one at 14 and one at 22. At 16 she hit the wall and was diagnosed with Post Traumatic Stess Disorder so I sought help for her immediately. I believe due to that help when GBS reared it’s ugly little head again she was able to over come again. When with this last go round, the neurologist she had told her she simply wasn’t trying hard enough Mom stepped in and cleaned the entire ICU units floor with their heads. Needless to say, thanks to this board and some wonderful friends we have made here, we will able to find a wonderful, knowledgeable neurologist who will be there if Brandy ever needs him again. Brandy is still plagued by fatigue (more so this time then the first time), her walk is different, she picks up more aliments (colds, flu) then ever before but she has recovered again. Brandy truly is a very blessed young lady and I am thankful everyday.
You must be logged in to reply to this topic.