Vent whenever you need to, that is what groups are for :) I empathise and understand your frustrations. Do you mind me asking what autoimmune you have?

Very normal for you to be a nervous wreck after being out of work for so long and now returning. I would be a wreck too!

Simpley stated. I feel SO badly for you...that you have this anxiety. But it's normal anxiety!! We'd all be scared to. You go there.....you see how you feel. You try! It's the best you can do! Give it your best shot.

I believe that everything has a reason, a purpose. You are going to give this work thing your best shot. If it doesn't work out...it won't take you long to realize this, and I am sure, that there are higher ups in your organization that will understand that you have a chronic illness and they will be ON YOUR SIDE. And they will help you adjust, modify, whatever you need to help get you through!!

I have faith....I want to pass that along to you tonite!!

I understand your fear and it's normal to be afraid.

Rather than thinking how you might put in all those hours in a week, try taking it one day at a time and putting one foot in front of the other.

I think the routine of working helped me a lot and I hope you will fall back into it.

It is hard and scary when you get sick and you only have yourself to depend on. I worked for 7 yrs when I was terribly ill but it came down to survival in the end.

Hugs to you. It's probably good to come and voice your fears so you don't dwell on it. Try to keep busy before then so you don't get in a slump.

Plan, plan, plan by laying out your clothes for each day of the week. Prepare meals ahead and put them in the freezer if you can so you can just come home and warm something up. Pack a bag to take with extra water or whatever you think you might need during the day. Make sure you have your meds in order.

Good luck.

Thank you for the support and some of the suggestions. PoTSie, I have a form of vasculitis. SkinnyBinny, I am definitely already thinking today about what I need to do ahead of time so that as much is ready as possible. Thank you Darla for yr support as well. I am so glad I have found this forum. I'll let you know how it all works out.

(((HUGS))) We all understand what you're going through! Although it is frightening to take back part of your life that used to come more naturally to you (your career), it's great that your employers are working with you and letting you come back gradually.

Pre-planning for Wednesday like others have mentioned here is a great idea. We're all here for you and support you all the way!

Take care.

Hi Anne

I understand your fears. I too have to work to survive and at this point simply cannot accept the possibility of not being able to work. Been there for 8 months .. not a good time of my life.

I now work full time and sometimes I want to give up so badly. Most days I struggle to just hold it together and get through the day. Some days I dont make it. When I have a good day I try to do a bit extra to make up for all the days when I dont meet my own expectations.

Do take it one day at a time, move forward in faith, understand when you need to stop and respect the emssages your body sends, try to take time to recurperate before your body forces you to.

Yes your fears are valid, but don't allow them to trap you. Poke one toe out if that's all you can do and trust that the rest will come together.

Hugs.

Thanks Max, Today was day 1- I made it 5 hours, but could feel the mini crash after abt 3 hours. Feel pretty awful now, but as long as I can wake up tomorrow and work the other 3 hours for this week, I'll take it. Then I can rest for 4 days and build from there. Never been one to take it slow, so this is humbling, to say the least. This disease really takes careful preparation and is not for the faint of heart! Hugs

Congratulations, you made it.

I have found that stress makes cfs worse. It can even bring on a crash. The more you can let it go the better.

I hope this all works out for you. It is good to have a plan B in case you can't keep it up.

When I came down with cfs I didn't know I had it for 2 years. I kept working because I was scared if I lost my job I'd lose my son. I was going through a custody case which is largely why I got cfs.

I didn't keep working because I was up to. I forced myself horribly out of desperation. I also thought that it was from the pneumonia I just had and it would get better.

Even with cfs you can push yourself way too hard and keep working for way longer then you should. I personally believe my cfs is worse as a result.

While work is important to you (and not just for $ reasons) if it gets that bad you will likely welcome quitting. If it gets really bad and you just can't work, after some time without working you will begin to feel better. For me it was just 1 week and I began feeling a little better. Now I feel a lot better compared to working full time.

I gave everything I had to work, mental and physical, to keep from being fired. I faked I was well. By the time I got home my symptoms came at me far worse, a guaranteed daily crash. To give you an idea here are some of my worst day work scenarios.

Being too weak to get out of bed when I woke up and needing to rest for an hour...regardless of how much sleep I had the night before.
Spending most of my shower sitting down because I was too weak to stand that long.
Having to ask my boyfriend to help me dress or undress because I was too weak to do it by myself.
Going days without brushing my teeth because I was too tired to do it before or after work.
Calling my boyfriend on the cell phone when I got home to help me up the stairs and to the bed.
Hiding in my room because I'm afraid I'll snap at my kids for something small.
Having to sit directly on the floor because I can't make it to the bed or a chair.
Needing help walking across the room.
Being too weak to move my feet from the couch to the floor.
Speech coming in slow like a record on the wrong speed.
You know when you should have said something else after a conversation? I had up to an 8 month delay of the thoughts occuring.
Having to practice answers to questions that should be automatic. (How old are you? Where do your kids go to school? What symptoms do you have?)
Significantly slowed thinking, causing delays of silence in the middle of conversations.
Strange memory issues that worsen with increased fatigue.
Being unable to grocery shop more than a few times per year.
Only being able to run a short errand about once a month.
Not being up to leaving the house.
Dreading Sunday holidays because after vising the whole work week will be harder.
Fever and chills, dizziness, headaches and fatigue. (I know fatigue with cfs, surely I must be joking

The good news is now that I have gone 2 years without working (after being sick and working for 2 1/2) every one of those symptoms is less frequent, diminished, or completely gone.

I wrote a cfs and working survival guide. It doesn't get commented on so you have to look back a few pages. It is well labeled in the topic title. It's full of things that helped me keep working as long as possible. Many of the things are small things you can do that will make your life easier.

I'm not trying to be scary or discouraging. I figure if you read that list you will think, well it isn't that bad for me. With some prevention it hopefully will stay that way.

I also have to be very honest, it only seems fair. I spent about half a year with the things that helped me the most and still had to quit my job. It was a desk job and still too much.

Please feel free to ask questions. I'll help if I can. Surely others will as well. Oh yes, and vent all you like!

Take it very slow and don't push to do more than you can; that usually results in a setback. Good luck to you.

FlyingC- When I was first diagnosed with vasculitis in 1997, I experienced some of what you listed. I basically worked 11-7 Monday to Thursday, came home Th, went to bed until Mon am. I lasted until the administration changed and they targeted me and got rid of me. I was off for 6 mos and then started where I am now. I slowly recovered to 80% until this hit. This seems worse, judging by how the last 2 days have gone. I'll be honest, I can't accept that I might not be able to work. I am holding out hope that if I am super careful and build up my hours slowly, I'll make it. I have nothing else: no partner, few friends, no money, not much family; I don't know if I could hang on... So I do want any advice on helpful ways to make it work. I'm going to see if I can find what you wrote. Today, after 5 hrs Weds and 3 Thursday I can not move from bed- feels like I've been trampled by a horse. But this is the 1st week. Anyway, thank you so much for all your info. I need the reality stories along with helpful tips on pacing.