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Permalink Reply by Larisa Diephuis on August 29, 2010 at 9:19pm

read this, the spoon theroy! I asked all my friends and family to read, and it helps them get it!

http://www.butyoudontlooksick.com/articles/written-by-christine/the...

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Permalink Reply by Mare on August 29, 2010 at 9:24pm

I posted something similar...no one responded so I deletedit. I am a nurse and so so tired...I had my embo August 3. BUt I missed my job...slept most of this weekend..... Its so weird mentally you want to keep going but physically...... :(

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Permalink Reply by Toni Yeomans on September 1, 2010 at 1:49pm

yeah , i know exactly what you mean. work decided to have a meeting at some hotel at 7am this morning which meant getting my happy but up at 5:30am , and then they expected me to work a 7 hour shift after that. I only made it through the meeting and ended up calling off for my shift, which I'm A)either going to getting written up for my 8 or 9th absence this year, or B)going to be okay with since they decided to allow me one extra sick day every 2 months since I didn't qualify for FMLA, but be screwed because it's the first of the month, and now I have to wait until November until it's okay again.

This is so frustrating, I hate explaining this to my sups or managers. They just simply don't get it. Coworkers who happen to be my friends have a greater understanding, but I feel like I'm talking to walls when I try talking to higher ups about this. I am so tempted to put together so much information relating to this condition because even though the AVM is gone, doesn't mean I still won't have problems (or that anyone wont) after. Just because I may look fine on the outside doesn't mean I feel the greatest on the inside. I want to take that information, throw all the sups and managers into the office with the store manager , and educate each and every one of them. My friend also suggested doing this about my anxiety disorder too, since that's another hugely misunderstood issue there as well. He even gave me his psychology book which goes into some great detail about it to use toward the cause.

I don't want to create problems at work, and I feel like I'm screwing up big time by missing so much work just to go home and go to bed, but I don't feel well. I feel so tired, it makes me feel like I'm being lazy, I still panic even being on meds for it, and sometimes it feels like everything's out of my hands. I used to have the energy to clean my apartment twice a week on both my days off. Now I can barely muster it once every two weeks (thankfully my brother helps out). I just went on a whole rant on your comment , but I completely understand what you mean. It is absolutely frustrating.

Mare said:

I posted something similar...no one responded so I deletedit. I am a nurse and so so tired...I had my embo August 3. BUt I missed my job...slept most of this weekend..... Its so weird mentally you want to keep going but physically...... :(

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Permalink Reply by Mike McCann on September 1, 2010 at 2:26pm

I had just under two months as well. I had my craniotomy back in Dec of '08 and was back to work on Feb 1st of '09. I was not permitted to drive so I had to get a bunch of friends to assist, but I was back. My surgeon let it be my decision and told me that if at any time I was not up for it I could come back to him and he would say it was necessary to be back on disability. I was so bored at home. When I went back it took me a long time until I felt my new "normal." At least 6 months. I also had an understanding VP who I reported to that told me to take a day when I needed it. He was very involved in getting to know what happened. Don't cut out exercise, but cut back. That was another thing I had to do. I was used to going to the gym and throwing the weights around 4 times per week. I had to go very, very light and make sure that didn't take away too much from the work energy.

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Permalink Reply by Toni Yeomans on September 1, 2010 at 2:29pm

thanks for this, i loved it! it is a frustrating thing to have to remember that people tend to just assume you feel well since you don't physically show any signs of anything else. i feel like i come into that position often at work, which is why i think having a meeting with the people who aren't understanding may help.

Larisa Diephuis said:

read this, the spoon theroy! I asked all my friends and family to read, and it helps them get it!

http://www.butyoudontlooksick.com/articles/written-by-christine/the...

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Permalink Reply by Toni Yeomans on September 1, 2010 at 2:35pm

That sucks that your job wasn't able to accommodate for you. The only thing I managed to do was ask my scheduling manager to cut my hours back so I could function, because I'm still not taking 40 hours a week very well. I offered to do a rotating 24 (we can't do any less than that) one week, and 30 the next, but now I'm thinking I may just ask to be cut down to 24 completely til now. I totally get what you mean by feeling afraid that they think you're just lazy, I get that same feeling, and I feel like when I have my issues like not being able to remember what someone said to me a short while ago they think I'm just being stupid. Hanging in there is hard, especially when it feels like there's so much against you, but thankfully when I get frustrated I become almost competitive in a way to where I want to do everything possible to help this situation and others.

I hope you are doing well minus the work issues!

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Permalink Reply by Toni Yeomans on September 1, 2010 at 2:40pm

I was just thinking about the exercise thing again while replying too. I have a lIot of friends who just got into it and we've all been at it, but something hit me...I have a feeling I may have been too into the whole thing with trying to run the track every other night with a friend of mine and kicking my butt completely. I don't know why it just occurred to me that that could be my other problem too. I'm finding that I get carried away often, and it's really hard to sit back and remember that I need to cut back and slow down when it comes to anything anymore because I;m so used to being the get up and go at it for hours type, but I just have to remember that it helps.

Mike McCann said:

I had just under two months as well. I had my craniotomy back in Dec of '08 and was back to work on Feb 1st of '09. I was not permitted to drive so I had to get a bunch of friends to assist, but I was back. My surgeon let it be my decision and told me that if at any time I was not up for it I could come back to him and he would say it was necessary to be back on disability. I was so bored at home. When I went back it took me a long time until I felt my new "normal." At least 6 months. I also had an understanding VP who I reported to that told me to take a day when I needed it. He was very involved in getting to know what happened. Don't cut out exercise, but cut back. That was another thing I had to do. I was used to going to the gym and throwing the weights around 4 times per week. I had to go very, very light and make sure that didn't take away too much from the work energy.

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Permalink Reply by rick barber on September 2, 2010 at 8:45am

i had the same problem toni. i returned 3 months after my crani, and like you have a physically demanding job (auto worker). disability wanted me back sooner, 6 weeks post op, but my surgeon said absolutely not! he was really great about it. asked me and my wife if i thought i was ready after 3months and i rushed to say yes. my wife said no. hindsight tells me she was right, had exactly the same problems your describing. it took some time for me to tolerate this better, but i can go most of the night without a crash, 10 months post op is where im at now. i was recently taken off seizure meds (keppra) that helped a great deal! that stuffed drained me! still have a ways to go i guess but its getting better for me, just hang in there it will get for you too im sure. dr. says its expected and will last up to a year year and a half. every situation is different i suppose hope things ease up for you!

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Permalink Reply by sheree d ellison on September 4, 2010 at 6:31pm

HI, TONI, I WOULD LIKE TO KNOW WHY THEY SAID U DIDNT QUAILFY FOR THE FMLA AS WELL, ON MY JOB WE HAVE FMLA AS WELL AND IF U WORKED 1,200. THE YEAR BEFORE U QUALIFY, I DID GET A LETTER THAT MY TIME WAS GOING TO RUN OUT BECAUSE I WILL BE OUT SO LONG BUT WHO CARES. I USED ALL MY SICK LEAVE AND VACATION TIME, BUT MY HEALTH IS MORE IMPORTANT THAN WORRING ABOUT GETTIN INTO TROUBLE WITH THEM. MY JOB REQUIRES A LOT OF LIFTING AND RUNNING AROUND I WONDER DO WE WORK FOR THE SAME COMPANY JUST IN DIFFERENT PLACES. GO BACK TO YOUR DOC. TELL HIM HOW U FEEL AND GET HIM TO PUT YOU ON LIGHT-DUTY AND SEE IF THAT HELPS. GLAD YOU POSTED NOW I KNOW NOT TO RUSH BACK TO WORK TWO MONTHS MAY NOT BE LONG ENOUGH. LISTERN TO YOUR BODY IF IT SAY'S REST THEN REST. THAT JOB WILL BE THERE IT GOT DONE WHEN U WERE GONE AND IF SOMETHING HAPPENS TO YOU IT WILL STILL GET DONE. GOD BLESS TAKE CARE OF YOU

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Permalink Reply by Armand on September 4, 2010 at 8:28pm

Two months is not that long. It was not that long for me. I worked half days for two weeks. Then, I went to full days. Engineer job sitting at a desk and it was exhausting me. Sounds like your job is a lot more physically demanding. then, I went on a plane trip. It was a little six person plane going on a short ride to Kansas from Illinois. When we got there, I crawled out of the plane and lay down on the ground for an hour.

Two months is not that long.

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