Nervous about going back to work

yolande,

make sure you do not over exert yourself. get as much rest as you can. take care. be well.

gene gbs 8-99
in numbers there is strength

Absolutly know how you feel. Women don’t want to stand out in a crowd. That is not a scar it is a Metal of Honor…show it with pride! You have earned it! I had one friend that said “Ahhhh you are wearing a turtle neck sweater to hide your scar!” I quickly added that that was not the reason for being in fashion. I just got my hair cut to make that easier for me and forgot how cold I get when the cold air hits the back of my neck! Besides it is Winter now! Not that anyone can tell that from the weather maps with these mild temps!

Are you going back for just a few hours those first days back or going to try and work the whole 8 hours? I did see a post before the site deleted our posts that someone went back to work and her boss worked with her to let her take breaks when she felt tired? Make sure you pack a healthy lunch and take in two snacks too. One for the morning break and one for the afternoon break. Eat a good breakfast! You can thank yourself later for that when you get home to the kids! Also don’t be afraid to ask them to help out a little more too, so you can spend more time with them in the evenings! *wink*

Have a great day at work! Paydays will be such a reward! Remember to collect those hugs from all the kids when you get home! You will be happy to see them at the end of the day! Be good to yourself and listen to your body!

Hi-

I’ve been out of work since 4/1/05. Now I have to go back to work by 5/1/07 or I lose my health benefits (no choice). Trying to get my union representative to talk to the HR Director on what I can or cannot do ASAP. Then I have to go to my doctor’s for a permission slip to clear my status for work. My arms are about 80% back to normal but I can’t drive yet. Have to learn how to take public transportation. After 19 years of doing the same lovable job, I wipe the slate clean and prepare myself for another title to add to my belt. I’ve come a long way since day 1. On a scale of 1-10 from the GBS illness, I rated a 9.5! Take a deep breath and move one foot foward and don’t look back. Going back to the rat race is another part of living in the real world. You can rest all you want when your six feet under or cremeated but I choose to live.

Peace “+”

Udaman and Yolande, please take things easy. It is difficult to find a balance between obligations and your own well-being, especially if you have to work to avoid losing health benefits, but if you really choose to live with GBS you will have to find a way to get as much rest as you can. You also have to realise that what you think is a normal life, or the ‘real world’, cannot be the norm for GBSers. Even if you think you are fully recovered, you will always be vulnerable for overexertion. As for me personally, I can’t work although I would love to, but I really feel alive when I am able to go to the store on my own. Makes me feel independent! There are many ways to live a fulfilling life other than participating in the rat race. I don’t feel cremated or buried yet;). I wish you both good luck!

Going back to work full time for me was hell. I am single and had to keep a roof over my head. My job did not understand what was wrong with me even though I gave them many notes from my neurologist. Within a few weeks they fired me. The next two full time jobs I got I got fired because I could not keep up the pace. I mention this as you are going to be working 3 days a week from 9-3. I think it will be perfect!

About half of the time the mental exhaustion is just as tiring as the physical part. So keep a good attitude and know to yourself you are valuable and have some great smarts to offer. Don’t be surprised how tired you will be, so take it very easy at home for the next year – oops, that really doesn’t work with 3 kids, does it? Well try your best so you don’t get too exhausted – it will catch up with you and surprise you. So sleep well and get your extra naps in!

Good luck!

I have just returned to work full time this month (was part time since mid May), and I am doing well with it. I came down with gbs feb 06. My best advice, is of course, pace yourself. You will have good days and bad days. I must say, the fatigue is now few and far between, but sneaks up on occasion. I am lucky, I work for my uncle’s business, and I am at a desk most of the day.

Yolande, I teach Physical Education. It was months of therapy before I went back to work. I am working in a private school and the staff has been wonderfully understanding. My schedule is Monday, Wednesday and Friday, so as difficult as a day may be, I always know I am off to rest the next day.

Two years later I still have days that I think I can’t possible finish the day. Some days I come home and totally crash. But doing the thing I love to do is as good for the soul as it can be physically. I have had a few times where I missed a week at a time, but by the end of the week I wanted to get back. Being in a good mental state of mind helps to combat the physical part of GBS. So you have to weigh the odds.

Good luck, take it slow, if those you are working with are good people, you’ll do fine. Don’t be afraid to share what you are going through. When we ‘look okay’ people don’t understand what is going on inside. Share it.

Take care and be well.

JayDee

I know how you feel. I’m returning to work next week on a part-time basis for a few weeks then on to full-time. I’m also feeling anxious. Why, I’m not sure. Take the advise given by all these wonderful people. I wish the very best. Good Luck and keep in touch and let us know how you are doing.

Hi

I just wanted to say to Yolande that I really understand about trying to get up on time to get the children ready etc. I personallay don’t like gettng up in the mornings – especially before the sun is up. But I have done it recently – and it’s not as bad as I had imagined

I wish you the very best of luck with returning to work. I know that same days you will be exhausted but sometimes, you will fly it!

God bless

My name is Dave and I was diagnosed with GBS in Sep 06. I was only hospitalized for 2 weeks and have made a good recovery with the exception of nerve pain in my toes, residual weakness in my lips and the to be expected fatigue. I feel fortunate with my progress but am struggling with returning to work in the next month or two. It would be part time to start but I also have two year old twins and a two month old baby. I know everyone says rest is imperative but I am somewhat of an exercise fanatic and want to get back to where I was previously. When I exercise strenuously I pay for it the next day. I wonder am I doing more harm than good? I guess I am still learning how to manage my fatigue. Any advice from anyone?
Thanks.
Dave

It can be helpful to pay a couple of visits prior to the actual first day back, to reaquaint yourself with staff, the environment, and to break the ice for going back. Having a support group to bounce ideas and any possible challenges off of, is important to the readjustment. Additionally, please consider contacting the Job Accommodation Network (Dept. of Labor site online) to inquire about reasonable accommodations for GBS. Rests, ergonomics and pacing yourself are immediate things that come to mind. Having the equipment closer to you sometimes is necessary, being allowed to sit instead of stand for prolonged periods of time, are other examples of accommodations. A letter from your doctor stating the need for the accommodation may be required by the employer. Sometimes settings on the computer (MS Accessibility) that enlarge the fonts, change background to black with white type, adjustments in screen resolution, and specialty software such as readers, JAWS, Dragon Dictate, Zoomtext, can augment eye fatigue, double vision, and tracking problems. One of the biggest challenges can be looking normal and assuming everything is back 1oo percent when the body needs time to build endurance again. This is where accommodations can make or break the success. Best wishes!

Disability Program Navigator

Dave,

I sort of know what you mean. After several years of battling against my fatigue, a few years ago I quit my job (before I got fired) and spent the next six months trying to build myself back up to being able to work. I wanted to get in shape, so I started taking walks. This is in the University District in Seattle, WA so walking is perfectly normal and at that point, I had no access to a car. So I’d walk 20 minutes up, 20 minutes back as my “starting” point. It killed me every time. I couldn’t figure out the problem (the UW students tend to walk at least three miles a day, on average, so my idea of standards were slightly skewed). Finally, my aunt suggested that I start from absolute zero. She said, start with five minutes: 2.5 out, 2.5 back. It was humiliating and cumbersome, but sure enough I was able to progress very well and I never felt as though I overdid it. I had to go from 5 minutes to seven and so on… Took quite awhile and there was a ton of frustration involved but through many other trial and error situations I’ve consistently proven (often on accident) that this is the best way for me to build up.

The thing is, I kept trying to start “low” compared to where I had been at before. It’s a fun little trick our minds play on us. So when you start, you literally have to start from square one. Not what would have been square one before you got sick.

Also something to consider for your exercising: At least for me, and from what I’ve read (and THINK i’ve understood) it more or less follows the pattern, my muscles tire out faster than they used to. Thus, I can do relatively hard activity for short spurts, but that doesn’t mean I can do really easy activity for long spurts. I’m only somewhat more winded walking a mile as running it. See my point? So when you’re trying to get back into exercising, consider tuning your program to accomodate. Instead of going for five mile jogs, try shorter jogs that include sprinting. But above all, listen to your body. It doesn’t take long (once you’re really paying attention… if necessary, write down the exercise on a calendar and the next day how you feel) to discern the tiredness that comes from pushing yourself a little in the spirit of exercise versus the tiredness that signals that you are going to be too tired to leave the house for a day or two.

Especially if you go back to work, I would say wherever in your exercise routine you’re at, dial it back a level or two once you begin work again. It can suck up a lot more energy than you expect. Also, consider finding a personal trainer or sports medicine type to review your routine with you. I lucked into someone at a local gym a few years ago who had studied to work with special populations.

Most trainers, though, are salesmen with some physical fitness knowledge. One trainer at the same gym ended up with a woman with Chronic Fatigue Syndrome. She told him she used to be able to jog three miles a day. So he just went ahead and worked her at a high level. She literally couldn’t leave the house for the better part of a month. So definitely check their backgrounds, and make sure they have degrees in the stuff — not just APEX training which is a joke when it comes to people with special needs.

Hi Yolande-

I hope this message finds you doing well at work! I was diagnosed in December 2005, and after the better part of a year in and out of rehabilitation institutions, I return to work on December 1 2006. I started off working 24 hours a week, and bumped it up to 32 hours a week at the first of the year. It’s important for me to pace myself, because I am not quite as far along as you can physical recovery. Still using AFOs to walk due to foot drop and weak calves, and my hands are frozen open, meaning I can’t grip anything or perform any fine motor skills. Such is the hand I’m dealt, and I definitely make the best of my situation.

Let us know how you doing at work now; it’s important to hear the success stories!

Hi Dave

Fatigue and pain are the commonest residuals of GBS. You had GBS less than 6 months ago. You’re returning to work at what, for many, would be a very early stage.

You said “I know everyone says rest is imperative but …” Be careful with that ‘but’. If you plan, expecting to meet fatigue, and it doesn’t happen too bad, well that would be a great bonus but (I’m saying it now!) if it does happen, you won’t be completely floored by it – both figuratively and literally.

To me, fatigue was rather cunning and I simply wouldn’t see it coming.

I’d think it would be better to go steady as regards work because it’s easier to build up gradually than to have to backtrack later.

Best of luck

God bless

Hi Yolande

That is good news!

It sounds like you have a sensible balance as you try to get a nap on your days off.

I hope you go from strength to strength and continue to post here as encouragement for others.

God bless