July 6, 2007 at 4:27 pm
😡 At work right now, havn’t been feeling the best, I’m a nurse and she asked what was wrong. So I told her. My feet are burning and feel like pins and needles and I feel like my face is hanging in my lap! (I had GBS/MFV)
She says… “I thought you couldn’t get Guillain-Barre more than once.” Tried to explain about my flare ups but in one ear and out the other.
Would like to smack her!!!!
Thanks for the vent!
AnonymousJuly 6, 2007 at 5:59 pm
we need to get a stress ball for all of us to use or even a stress rock for all of us to rub. I used a stress ball that had aroma thereapy in it to squeeze when i got stressed my employees soon learned that if I had the stress ball out to let it alone for a while unless it was an emergeny issue that I needed to take care of right away. and you can always write to us on here too. 😉
Be master of your petty annoyances and conserve your energies for the big, worthwhile things. It isn’t the mountain ahead that wears you out – it’s the grain of sand in your shoe.
AnonymousJuly 6, 2007 at 7:47 pm
I hope things improve. I know what you are going through I am going through the same thing and I have CIDP. Waiting for my first ever IVIG treatment.
If I hold up production because I can’t keep up with the speed then they are not happy. But I had some of those problems before I had CIDP so what makes them think it will get better with my CIDP.
Vent here like I did it made me feel better.
AnonymousJuly 7, 2007 at 12:59 am
At least wait until the pins and needles leave your hands, then smack her! No need to cause yourself more pain than necessary!
Yes, I am joking. It is pretty amazing how people seem to think you’re okay and everything is fine and forget how bad it is and even forget to ask how you’re feeling. Remember- you can’t control others- just yourself.
Hang in there!
AnonymousJuly 8, 2007 at 11:34 am
[B][COLOR=”SeaGreen”]I understand your frustration completely. People around you initially are very concerned about your illness. Unfortunately, we aren’t suffering from the flu which goes away after a week or two.
After several months of recovery, I found that even those closest to me couldn’t fathom why I was still recovering and that the process could take many months, and for some even years before I was “well enough”.
My spouse had to learn a whole new set of parameters. I am at 7 months out now and her support has been very instrumental in me getting well enough to resume work and other activities. She still reminds me that it’s a very slow process.
For those who have never suffered with GB, there can be little understanding, and in the case of your fellow worker, total disregard.[/COLOR][/B]
July 8, 2007 at 6:58 pm
Thanks everyone for your continued support. This weekend has been not to productive for me. Sleep, Sleep, Sleep. It’s hard when my mind says I can do this this and this and then my body says no you can’t! You all know what I mean. Those at work see me all of 3 days a week which is all I can handle and then that is a challenge sometimes. They do not see me when I get home and collapse on the bed or couch after I get home from work. I used to work 40+ hours a week. After GBS/MFV 24 hours a week is a challenge. Lately it has been tough to even do that. Well all take care and thanks for the support!
Going back to bed, can hardly keep my eyes open!
AnonymousJuly 10, 2007 at 12:48 am
Schel, We look so normal on the outside. People tell me “you really look good”. In the am at work I walk almost normal. By 2 pm I’m ataxic and my right foot is dragging. My partners don’t see this and are forcing me to come back to work full time in 2 weeks. I really can’t do it – my legs don’t work in pm. I understand your frustration!! Just wanted to let you know you are so not alone. I’m really trying for acceptance but it is really not my personality. I hope you have an easier time of it. Dr. Shawn
AnonymousJuly 10, 2007 at 9:01 am
One thing I have found out is that using a cane during help signal that everything is not alright. I’ve learned a few “witty” answers to the questions about why I’m using a can. 🙂
My pride told me that I didn’t need the cane. The reality of if is that it helps to stand up from a sitting position. It helps me keep my balance and by the afternoon it has saved me from falling on my face a few times. :rolleyes:
AnonymousJuly 11, 2007 at 7:42 am
There are some weeks I get so frustrated because the people who are supposed to understand, just dont! I have to say that Im getting so tired of the medical community who dont even want to try to understand. Jims idea about a walking stick is really a good one. A quick pointless story ….. we took the kids to the Aquarium in Baltimore, and its HUUUUGe, I was just starting to suffer from a severe bout of flu and was so weak. I told my husband i thought i needed to look to see if they sold walking sticks to help me stand and walk without tripping etc …. well the answer was something to the effect of “I dont think thats necessary, you dont need one.” Needless to say I was hanging onto everything and finally sat on the bench for most of the visit.
Shawn, my heart really goes out to you! I have often thought when reading your posts that it is really such a shame that your collegues dont understand or arent more sympathetic – reasoning behind it is that being a doctor you of all people know and UNDERSTAND your limitations, and being a professional they would respect that more. Human nature is so fickle
AnonymousJuly 11, 2007 at 8:32 pm
I totally agree, we look okay so we must be right?? Can someone please tell my legs and fingers, and arms and thighs etc… And Ali my husband when he’s driving in a full parking lot and we pass a handicapped space for the 3rd time, I’ll speak up and say “Honey I have my placard we can park there,” he always looks at me and says “No, we should let someone who really needs it use it…” One day I think I will make him carry my butt all the way to the car so he knows there are many times I really need it but don’t speak up, I guess I look to healthy and don’t want to complain. Plus I always feel good in the beginning and lose my energy later everyone keeps saying you look great do you still need that cane? Uh, no it’s just that it goes so well with my purse.
Anywhoo, it’s nice to know I’m not alone.
AnonymousJuly 11, 2007 at 8:56 pm
Joyce I agree with you also. We look normal so what is the problem. Lately because of my tendinitis in my hands that has set me back lots. Probably got the tendinitis because of over doing things at work and my hands got hurt.
I try to find close parking spots now. I didn’t mind parking further before but now after a days work or just a day I am really tired. I just hope I get a good parking spot that is close.
I still work but get frustrated with not being the person I once was.
Sometimes I wish I had a placard but I know I not as bad as most GBS/CIDP people so I count myself lucky.
Most of the time I skip my Lyrica in the morning and afternoon because it makes me a bit tired and I can’t afford to get tired more then I already am especially in the heat waves.
Amanda you tell your husband when he makes that comment say “Honey I really need it” and if he says you look fine then say “maybe on the outside but not on the inside. Are you ready to carry me in and out of the store?”
That will make him think twice. He has to realize you have to conserve your energy. You might and up to tired for some adult fun then he loses out.
Ali I am sorry your husband didn’t get the message. I would have said Honey I don’t feel good I need something to hold on to unless you want to carry me.
I don’t have a man now so I don’t know what you both are going through but I was married once and I didn’t stand up for myself and now I regret that. He put me through to much. I still have hard time to speak up for myself some times especially when I am tired and sore at work but I am learning and doing the best I can for now.
AnonymousJuly 14, 2007 at 10:42 am
I too, am a nurse, and you would think that our peers would be more empathetic. I just got to the point where I don’t say a word. I believe they think I’m lying or something, but i’ve learned to find out that they kinda know when I’m having a flare up. When I’m in really bad pain or extremely fatigued I get very quiet, and I also have a very hard time swallowing and can’t eat solid foods. So they either think I’m bi-polar or they get it. Some times I just want to say sc……. you.It’s not worth the energy though so I just keep going on. Good luck! I know how frustrating this can be. xoxoxoxo Roxie
AnonymousJuly 14, 2007 at 12:25 pm
Yesterday morning I worked so hard at work for what I can handle that at lunch time I tried to take a catnap in the cafeteria. Put my head down and tried to sleep for 25min. All I ate was a granola bar because I wasn’t hungry just so so tired. After lunch the person in charge of the production line asked me what time I went to bad last night figured I didn’t sleep enough. No I had enough sleep. I told her the job I just did was to much for me. She probably didn’t realized I was putting aboard in every box but wasn’t flipping most of the boards to check the other side for defects I just didn’t have the energy that is why at break I tried to nap. She told me I didn’t eat lunch that won’t help me.
I we get switched after 2 hours sometimes and I did yesterday but I am sure I will be back on that board on Monday.
Well I am thinking I am on modified duties and she is treating me like I am not on modified duties. People figure you have to work through your pain and if you don’t work hard enough how will you ever get your strength back.
They just don’t understand.
I get so frustrated because I don’t want to be the way I am. I could never measure up to their standards before I got CIDP now I definitely can’t.
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