Reality Check

Hi Linda! Welcome back! Yep, I have days like that, like maybe one every three or four weeks, and I feel like I should run out that day and get a job. Here’s the compromise my HB and I came up with – I can start thinking about getting a job when I can get up every day, take a shower, get dressed and be ready for a day by 7am without having to take a nap afterwards. Then I have to be able to keep up with my portion of the household – the laundry, the dogs, the cleaning etc. without having to resort to a nap several times a day. I have to be able to see well enough to find a job and finally, I have to be able to do that for at least a month without having a “bad” day, or suffering ill effects from the increased activity. This compromise is more for his benefit than mine, overdoing it does make me worse and symptoms come on rapidly. He is concerned that I might get somewhere and not be able to get back. I can’t give you any advice on the PE, my only suggestions is to read through some posts of people who have had it and see how your symptoms fit with theirs.

Mental gymnastics – sounds like what we call “hamster brain” around here. LOL

Take care Linda

Hello Julie,

I am glad to see I am not the ONLY crazy up at this hour in the morn🙂

Hope you are well,

Per (in Texas)

[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Blue”]Linda,
I’m still teaching part time.There are days when I feel so tired I want to walk into the Principal’s office and turn in my resignation. I keep telling myself that I signed on for a year and I’m going to make it through the year. Then in a week or so I feel “better” and I think I can make it through the rest of the year and maybe even think about next year.

Right now I not sure I can really make it through this year. The problem is Saint Mary’s is a small school. I’m not saying that I’m the world’s best teacher, but there would be difficult for them to replace me at this time of the year. So I feel obligated to keep on going this year until I just can’t do it anymore.

I already know the answer about next year. I just don’t want to admit it. After Desert Strom, I had to retire from the Air Force when I found that my mouth was writing check my body couldn’t pay. It look like it is happening again.

The bottom line is that when reality comes knocking on your door sooner or later you have to open it and see what God’s got planned for you.[/COLOR][/SIZE][/FONT]

Its interesting that you bring up this topic. I am going thru the exact same thing right now. I wonder what life is going to hold. Should I try to go back to work or just accept life as it is? I still require naps to get thru most days but is it just a habit now? I do know if I go shopping for instance then I can’t walk very well that night. Could/should I struggle thru life or just accept what I have and try to make the best of it? I have 2 kids that will be going to college soon….I would like to help them out. I too am doing the mental gymnastics! In June my social security will be up for review. I guess I might find out then whether I am forced at that point to find a job or if I can continue to try to figure it out for a bit longer.

All The Time Linda. I look at it as exercise for the mind, either way it almost always wears me out one way or another. I have good days every once in a while, more bad since early Feb, but they are more controlled I’d say. I went on pred bursts in Feb to get a handle on the flare up, it worked for a few days and as I decreased the mg the symptoms flared again. This roller coaster ride is coming to an end, finally I think. I’m on my 3rd pred burst-this time for a longer stretch, which seems to be doing better. I would give anything to be able to go back to work. But since I can’t even make it through a day doing normal daily things, I know I have a long ways to go. As for the pe, if you have a chance for a treatment why not try it and see what comes of it. It might be the magic treatment that your body needs. I’m on pred because I called my dr and requested it, and it seems to be doing more than ivig ever did for me. We have to be able to read our bodys, and do what we can to help ourselves, so that we can get back to living. This is your chance to take your future in your own hands–Power is Yours for the taking! Take Care!

This thread totally says it all. Just what I have been mentally torturing myself with for what seems like the past year. Every day I work, which is part time teaching, I question myself as to whether I can get through the day or not. Do I head to the principals office and admit I can’t do it? Or do I wait “one more day”? Like Jim, I am in a small school and wouldn’t dare leave before the end of the year.
I just keep thinking things will turn around and I will be able to handle it.
Hope I’m not kidding myself.
Have an appointment Wed. with the Doc.
Linda, I’m sorry you have to feel this way, believe me, I know exactly what you are saying…but thanks for putting it in words and once again, reminding us all that none of us are alone in this.
JayDee

Julie that was just about the best description of how tough the day is with getting ready that early, and not having a “bad” day for a month, etc. I am in a unique work situation right now that I am having a hard time with. Everyone keeps telling me to get something else, meaning doing the routine you have outlined and I can’t do that. But I haven’t been able to put it in words like you did, so thanks…….

Well ya’ll I honestly can’t take credit for that description of where I should be before considering a job – that’s all my husband. I have a tendancy to lose my perspective on how well I’m doing and think that any improvement is enough. Last night he said this to me “if 100% is where you were before you got sick and 15% is where you were completely paralyzed in the hospital then you are at about 30% but think you are at 70%.” Then he got all upset because he thought he was telling me something I wasn’t ready to hear but the fact is he is RIGHT. I feel blessed every day that I have this man in my life – what a treasure! I’m not sure where I would be without his constant support, his perspective and his love. 😀

Julie

I, TOO, know EXACTLY, how you feel! I was diagnosed w CIDP 6 months ago, been on heavy Prednisone, since (worked well, at first) Now, did my IvIg 5 day infusion thing? 3 weeks later, worse than ever! (BUT, if you are going there, it works for most)

For my follow-up Doc advised me to apply for SSDI and “next tiime, bring your cane”, I WAS BUMMED! So, the guy who can’t sit and NOT work, CAN’T work. The Guy who can’t sleep (on acct of the steroids) is soo tired, lol. Seems ironic. And, some days, I feel great, start to do stuff (around the yard, on a car, to the house) then start w the staggers or hit myself w a hammer or statr losing eye focus- very frusterating.

BUT, I WILL TELL YOU- while getting my initial IvIg infusions, I had the opportunity to talk w several CIDP-GBS patients. Out of the 9 I met, 2 had other serious health issues (and not working) a couple were like you and I (still figuring out where the “ball lies”) but 4 of them had decent jobs, one was not only an Ins Exec but an EMT! So, I guess, pray one of the treatment options out there works for you? It is working for others (just not me, just yet)

Peace Be With You,
Eric

It’s amazing how our days are up and down. Linda I am glad you are having good days and you have a supportive partner. My hubby is very good, too, and I count my blessings. He’s been there for me through so much that it doesnt seem fair. He sure didnt know what he was getting into when he married me, that’s for sure !

I’m heading back to the nuero as soon as I make an appt. I’m tired of health issues. So tired of it. If it’s not one thing, it’s another and I’m 37. Isnt that suppose to be young ? Why do I feel so haggered sometimes !
Some of the truly much older ladies I work with often tell me “you’ve had so much in your young life” , or “for someone your age, you sure have alot of health issues”. And, you know what I want to say to them BESIDES mind your own business…words I’d better not type on here, that’s for sure. :rolleyes:
I work in an office with 8 women. If it’s not PMS in here, it’s menopause.
17 years in and I can retire at 50 with full benefits, so I’m not giving up yet.

This forum is a great escape. I wish we could all get together someday.

hang in there everyone.

Stacey

Linda, in one of the posts, someone once referred to GBS/CIPD as the “invisible disease”. How true. I know they mean well when I get
“How are you feeling? You look great!” I’m usually too tired to have the conversation…so I just thank them.
JayDee