Three Months of Guillain-Barre Syndrome… and Counting
Today marked the 3 month mark in my battle with Guillain-Barre Syndrome. Well, actually, yesterday was the 3 month mark of the first symptoms, but it wasn’t identified as GBS until the next day, so we’ll call it good and move on.
At this point, I’m working about 6 hours a day, though I think that lately I’ve been pushing it just a bit too hard, and back-sliding health-wise just a bit. GBS is like that. It lets you push, until it doesn’t, then it laughs at you for overdoing it, and you feel like crap for a day or two or three. Then you start feeling good again, go a little bit further, and it whip-saws right back at you. At the beginning of last week, I felt like I could take on the world. So I did, and I’ve been paying for it ever since.
Today, I had an appointment with a neuro-opthamologist—an eye doctor who specializes in neurological issues. He put my through a long series of eye tests, including a series of strain tests that gave me a headache that I still have, 10 hours later. The news was good, for the most part. I seem to be recovering, and the new prescription my optometrist gave me a few weeks ago, seems to be the right one for the job. I do still have some muscle control issues with my eyes, both in focusing them, and keeping them in alignment. The muscles tend to tire quickly. My brain then steals energy from other parts of my body (i.e. my nose and fingertips) to compensate and allow my eyes to continue to work. Hence, when I work or talk, the tip of my nose goes numb, followed shortly thereafter by my fingers, then my arms if I push too hard. I spend a lot of the day either expecting to sneeze, or having an itchy nose, because one part of my brain is so confused from the lack of signals it gets when another part shuts down the sensation. It’s pretty annoying.
I have started to get outside just a bit more. Walks to the mailbox, or to the park around the corner with the kids, don’t completely wear me out, though I do walk more slowly than I used to. I’ve spent a few minutes each weekend pulling weeds in the flower beds. The fresh air and sunlight feels good, but I usually pay for that exertion later in the day.
I have been getting back to editing my latest novel. I’ve been doing a chapter a day during the week, just to feel like I am making progress. Not being able to write consistently for the last three months has definitely impacted my mood, but I think it has also made me a better writer because I am pacing myself, and taking my time. Last year I wrote 80000 words in 50 days. This year, I’ll be lucky if I write 5000 new words total. But they’ll be good words.
The only really beneficial thing about being home so much is that I have been scheduling in people to do work around the house. We had someone come out and seal the ductwork and add some insulation to the house. The carpets are being cleaned tomorrow. And, I’ve been getting estimates done on installing a photo-voltaic system on the house. I’m not sure I’m going to be able to afford it right now (hence the estimates), but it is something I would like to do. If we do it, it’ll make some great material for blogging about.
I still haven’t read a book since the end of January. My eyes just can’t take it, at least not as long as I am working six-plus hour days. I miss it, especially when I see that some of my favorite authors are releasing (or have released) books this spring. Hopefully by summer, I will have the energy to get back to it.
I think the biggest mind-shift for me in the last three month has been to lower expectations, and to not let that depress me. I’m a type-A personality. I’m go-go-go all the time. I expect to be able to rehab my way out of any illness or injury. I tend to forget on Mondays that I’m not supposed to sit for more than a couple hours at a time, and I sit down after dropping the kids off at school, and the next thing I know it’s lunch time. By Friday, I am a dead-man walking. I have to learn to take care of myself better during the week, and to learn that sitting and watching TV in the middle of the day, or taking a nap, or a hot bath, is not a luxury—it’s a requirement. I will not heal if I push to hard. That’s a hard lesson to get through my thick skull.
So I keep the NetFlix queue updated on a daily basis. I do have a hot bath every afternoon. I take a short walk every day. And hopefully, at my six month anniversary, my life will be back to normal.
> Then you start feeling good again, go a little bit further, and it whip-saws right back at you.
In aviation, they call this “pilot-induced oscillation.” I suppose it’s just the general human tendency to over-compensate for any deviation from the nominal.
Hm. Seems like there ought to be a novel hiding in there, somewhere…
If the novel is about GBS, people will be bored. Reading about someone watching TV all day isn’t very exciting reading. But a novel about over-reaction in general… that may have possibilities.
U r like only 3 months and u walk, im had 10 months with GBS im walk with walker, im feel soo tired after im walk a little bit, but im continue with my theraphy and good actttud soo God bless u and tkxs x share your experience!
One week before i got GBSim had a stomach ache, but i didnt pay attention. in June 22 i woke up with doble vision and felt weak but i thought it was normal. I tried to open the key to take a shower and i couldnt. i decided to go downstairs to drink tea but i coulndt turn on the stove. At this moment i felt pressure on my chest so i started to cry. My son drove me emergency. they thought it was a stroke. I spent the whole night in the hospinal the next day im couldnt move from my neck to toes. I spent 5 days in ICU and 2 weeks on regular room. I was given special antibiotics and plasma feresis and 3 week in physical theraphy.
Im stay 3 weeks in theraphy every day, they tray a diferentes way to how im walk with help but every ways were soo painfull, the only way im can walk was with a belt aroud my cintura. My vision steel doble they coverdone on m eye
They send me at home with a little by of moving like 20% in home my kids help with every thing, they were my support in evrything thans God!.
From know im have 10 monts im move a lot im things one 60%, im walk im ca feet me by my self, m can wash my teeth
Now im in home with teraphy 2 times a week im have rocovered a lot of movements
Wow, Ana. GBS affects everyone differently, and I consider myself so lucky that I have recovered this well. Every time I feel a little worse, I worry that I might be relapsing. I hear about people with CIDP from GBS, and I get concerned that I might develop that. But so far, so good.
Keep fighting. Take it one day at a time. Appreciate the little things. If you are on Facebook, there are some good support groups there willing to listen. Sometimes, you just need someone who knows and understands what you are going through. They really helped me through the first few weeks.
Incredible pc of work. (but there is a typo) LOL – had to point that out because I’m a stinker like that :)) I will share this, as May is GBS Awareness Month. Your three month recovery blows me away – and probably makes the rest of us look like quitters in some eyes :(( But it’s completely different for each individual…
I re-read the piece… where’s the typo? Can’t see it… though I do see places the writing could be improved… I wrote that pretty quickly last night while the kids were getting ready for bed.
I do consider myself very lucky that I have recovered this much so far. I have to believe that getting the right treatment very quickly, saved me. I also wonder whether on not the fact that I already had CMT (a hereditary demyelinating disease) gives me a much lower baseline to work back to. I had already lost most of my muscle mass in my hands in feet, and have adapted to life without thumbs and feet that don’t work right. I didn’t have as much to lose, so I didn’t feel it quite so bad. Just a theory.
Thanks for posting this! Every step forward in recovery is something all GBS fighters can cheer on. Keep on driving forward! \o.o/ 😀
I was admitted to hospital in November 2006. Iwas in a coma for 9 days and was put on dialysis due to kidney failure. Spent 30 days in hospital and went home for 2 weeks only to land up back in ICU paralised from the neck down only to be told I had GBS. 109 days in rehab and another 8 months in outpatient rehab. Then surgery to lengthen my achillies tendons. Started driving 4 months later.
It is a long road but the good news is you will get better every day…… I have the amazing opportunity every day to see people with GBS recovering. Hang in there and take each day as it comes, just being able to walk after 3 months is amazing.
my husband got GBS in Feb 2008. at 3 months he was still totally paralyzed and on a ventilator with a trach and still in ICU, so your being able to use the computer and walk around the corner to the part is nothing short of amazing to me….my husband is lucky if he can walk 300 ft holding onto my arm and using a cane even now. Congratulations!
You can read his story on caringbridge.org……….bobpinney.
I appreciate your blog so much — I hope you keep writing. I was diagnosed 2 months ago. Searching for info about small things that are bugging me, like why my face all of the sudden is numb, is driving me crazy!! Your idea about how over doing things makes the body compensate by taking energy away from the face nerves makes sense. My story in short: I had a baby, the nurses pestered me every time they came in my room to get the “pertussis vaccine” so after a while I said yes just to quiet them. 8 weeks later I was in the ICU completely paralyzed. I am one of the lucky ones who managed to get home, walking, after 3 weeks of intensive hospital care. I think it is nothing short of a miracle considering how incredibly bad it got for me. I wish people understood that even though I look fully recovered, the exhaustion is REAL! And, it’s not just because I have a baby “exhaustion”. Best of luck to you, I’m happy to hear you are recovering and have a positive outlook.
Glad you found the blog, Melissa. I can’t even imagine what it’s like having a newborn and GBS. I’ve been very lucky and have a very supportive family and supportive bosses, so I’ve been able to go from working full time to part time, and gradually ramping up the hours. Yesterday I did some gardening, and I know I overdid it because I woke up at 2 AM with my skin on fire. Today will be a down day, even though it’s Mother’s Day. I hope you have a good day too.
I’m a 3 year survivor of gobs mf variant. Came on in 1 day and lasted about 1 year. Was able to see non double in 4 months. Lots of shaklee vitamins got me healthy quicker than normal. Did push myself and had my ersonal trainer come in every day to stretch me for 1 hour.
Hi Lou, good to hear you are recovered. Three years from now I hope this is just a faint memory. Thanks for stopping by.
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Hi Joe. I hope that you’re recovered from your bout with GBS. I am on my way to the urgent care with symptoms of it that started coming on over the last couple days. First in the backs of my legs and feet, then in the fronts of my legs too, and and now in my upper arms and finger tips. My face feels funny and I have really loud tinnitus as well. I kept brushing it off as, maybe, restless legs or something, but it’s gotten unbearable so off I go. I hope it isn’t GBS, but it would fit. Something hit me. All the best.
Shawn Marie… I hope the urgent care sent you straight to the ER. If this is GBS, you need to start treatment as soon as possible. Don’t wait any longer. I hope this turns out well. Let me know how it goes.