Friends,
It has been exactly one month since I returned to my high stress corporate job following 10 restful weeks of FMLA. I knew it would be an adjustment, but I really thought that I'd be more settled in 30 days later.
I find that I get really tired around 2:00 and can barely hold up my head. Then, when I get home I can't do all the things I used to do, like emptying the dishwasher, vacuuming, cooking, etc.
I am really worried. Do you think this is normal or a bad new sign? Any energy boosting suggestions that won't wire me up or dry me out?
Thanks so much!
KellyG
Hi Kelly,
I have been exhausted almost entirely for two years. The only time I feel better is completely resting at home. I have missed 50% of work over the last 2 years as a result. I had to retire from the Navy as a result and started and new job and the exhaustion, pain, and all around crappy feeling has caused me to miss the last three weeks.
Saw doctor today and he is starting a predisone treatment to try and boost my energy. They did this awhile ago and it works for a short time but I slowly go back to feeling exhausted.
I haven't found a cure or any help. I really has affected my quality of life too and not sure what to do. Looking for advice as well.
Chris
Kelly, try 6-8 oz of Carrot Juice per day. If your fatigue is from pain this should start helping.
Sounds like pretty much par for the course. Wish I could tell ya different...
I'm right there with you! I had to drop my working hours from 30 per week down to 17-20, and I still feel like I work a normal full time job!! After about 3 months of reduced hours I am starting to feel human enough to have a real life, at least somewhat. I can enjoy myself at a moderate level as long as I take it easy and not push too hard.
I eat well, sleep as well as I can and take as good care of myself as possible and it doesn't get rid of the exhaustion all the way. I am at a point of acceptance, Love, Laugh and appreciate what you can everyday...then let the rest go!!
Kimber
Hi Kelly
I only work 5 hours a day and have virtually no energy when I get home. In fact recently I asked my boss if there was any way I could work just 2 or 3 days a week instead of 5 - and job share. He's looking into it - or at least he said he would.
I'm sorry you're struggling but fatigue just seems to be part and parcel of this thing.
Take care - Scottie :)
Hi KellyG,
I feel sympathy for you being worried, but I can understand. I can't say if it's any worsening symptoms; for so many of us the fatigue can be one of the worst things.
I will make a kind suggestion that you may need to look at any way you might reduce your work hours. I also understand that your position may make that difficult. At your age, (still young, but with much experience ;) I'm assuming that you may be at the "top of your game" in the corporate realm.
Others will have other suggestions, I'm just throwing this idea out there...you can respond by telling me I'm crazy.
One thing I think I've learned is that instead of thinking we are "giving up" or "giving in" to our illness by making decisions like this, in reality we are taking action for our best health and emotional well-being.
Sending you a soft hug,
Melinda
I'm tired of being tired! After much hesitation, I just started FMLA to cut my work week from 5 days to 4. It's like I didn't want to give in to it, but now am so happy I did. I'm going to do this for about 3 months. I'm sure I won't want to go back to 5 days at the end of it. I'm hoping that maybe my work will let me go 4 days (without FMLA) at the end of the 3 months. I am always tired, but lately I have been REALLY tired. It messes with my ability to think straight and remember things. It makes work difficult as I'm sure you all know.
I am always exhausted too :( I work part-time and have two very young children. The unrelenting fatigue has been the most difficult thing for me so far.
Hi KellyG
What Meld said makes a lot of sense are you able to reduce your hours?
Another thing that I thought of can you afford to get someone to help with the housework? so you aren't doing so much when you get home it might take some of the pressure off.I really feel for you this fatigue is the pits.
Take care
Lots of hugs
Cheryl
Hi Kelly,
I'm sorry for your fatigue! I don't know how you do it. Now that my youngest is in school I have a little down time but it still is so overwhelming. And painful. Good luck in deciding what to do and how to live through this.
MB
There are a couple of medications that can increase energy. Help me here gang cause I am having a brain fart. Is it Cylert and Pro----something or other. I know that when I first joined the forum years ago people were taking these to help with the energy. Did the docs quit prescribing these meduications now. Provigil, that is what it is called. Maybe talk to your doc about using these medications in a very low dose.
I was exhausted for years and for a long time I would come home and change clothes and go to bed for a nap for at least an hour and a half. My hubby thought I was being crazy and when I got diagnosed I was so thankful to know why I needed that sleep.
Fatigue is so insidious. It really makes us lose our life because we can't tolerate being up and around. I am to exhausted all the time that I can't even enjoy visiting with friends because after an hour of conversation and I am crazy with fatigue. Irish ;D
Thanks for all the support. Yet again, at least I know I'm not just crazy...
Melinda, I sincerely appreciate your suggestion, but in my position I am needed FT and then some. And yes, you are perceptive. I had to work my rear-end off for years to get this position, so I don't feel ready to give it up yet.
Plus, since I look "good" except for underweight and dark circles, people think I am OK. I bought a simple book on SJS and will ask all close family to read it.
Irish - you have NO IDEA how many times I have come home mid-day, put on "comfy clothes" and took a nap. It wasn't even a choice - I had to do it.
Thanks to all. I'll ask the doc next time I darken her doorway. sigh.
:-\ KellyG
Hi Kelly,
Yes, don't give up anything that you've worked to achieve.....I did that.....gave up 4 licenses and basically reinvented myself on my job which was lucky but it left me stranded as far as climbing any corporate ladder. Prior to diagnosis, I had my two degrees and 4 licenses and all that work behind me and just didn't understand why I wasn't interested anymore... >:( depression maybe???
I am thankful I still have a job!
It seems like everyone on here who starts Plaquenil seems to feel it helps with fatigue. I know my docs don't want to prescribe it for me unless I'm getting more joint pain or fatigue. Is there a reason you can't try Plaquenil? Hope you hang with it and forge ahead with your wonderful position!!!
Jill
Plaquenil has not helped with my fatigue. I have been on it for 9 months now. Everybody is different. Everyone's threshold is different. It depends on the kind of work you do. I found that I had to be really honest with myself. I did not want to leave my job. I changed departments, went from full-time to part-time, all that I could. In the end, I had to apply for disability.
Duchess
Things to make it easier for me after working a full day:
I try to arrange it so I unload the dish washer in the morning so all I have to do is put the dirty dish in and turn in on at night.
I went through and decluttered my house a while ago and it makes it easier to keep clean, I don't care about dust anymore.
I take Saturday to recoup and Sunday I get groceries when everyone else is at church so it takes less time.
When I come home from work I take a shower put on my jammies and hope the hubby is cooking dinner. ::)
I don't worry about anything but getting through the workday because I have to work if I want to keep my health insurance, house and car.
I did start Imuran in May and have felt less fatigue since getting up to the full dose, and I still take plaquenil as well.
SueAnn
I also medically retired in 2007 due to the fatique of sjogrens. I now work Monday-Thursday only in the mornings. This is a perfect work schedule for me. I really have learned to take better care of myself.Resting when I am tired is very important.
They still have provigal, and another one that is about the same thing called nuvigal.
susanep :)
I'm on Provigil for sleep apnea and hypersomnia, and now (since two days ago) on 5 mg/day of Prednisone. Still I fall asleep in front of the tv at night -- did that tonight. Still I have a two-spoons day, as I did today. That was with about ten hours of sleep last night.
All right, that only happens roughly 12 days apart, but it is notable!
On the other hand, two days of minimum dose of Prednisone and suddenly my eyes are tearing and my mouth is watering.
Kelly, I think you would be enough different from me that Provigil and/or Prednisone at a low dose would help you more than they do me. If you still get a to spoons day, lay low and do nothing -- shift stuff to others, to a different day, reschedule, whatever you need to do. But you know that,
The toughest thing for me is summoning the mental energy to meet a challenge. It isn't there any more, and I miss it.
What are you doing right? (Rather focusing on what isn't happening)? Sure, we here to listen to how tough it is, but I'm hoping you are giving yourself credit for coping with an even tougher work situation.
Best,
Soycoffee
Soycoffee - thank you for the nice message. And you know, you're right! I have gone back to work, full time and then some. Even though I am tired, I HAVE been able to slip back in and get caught up on my projects. I have also learned that I CAN delegate some of my work to others - they had to do my work while I was gone and it went just fine. So even though I sometimes have to pack up early and do the rest of my work from home (in jammies with a hot water bottle) I am still getting it done, plus taking care of my 10 year old son, hubby, two dogs and a kitty. That's a lot, and I still do OK> Thanks for inspiring me to focus on my accomplishments instead of just my limitations.
Hugs!
KellyG
Dear Kelly,
All the work you do would be exhausting to everyone, even people who are NOT dealing with a chronic condition.
When I was in graduate school one of the deans told this story:
"We all set out to climb the mountain of life.
And we choose some suitcases to carry up the mountain with us.
The suitcases are: WORK, MARRIAGE, FAMILY, COMMUNITY, and others, perhaps more individual.
It is a rare person who can really carry them all up at once! Some people give up on one or more of the suitcases.
Some people leave a suitcase and go back and get it later. (I did this by not working a serious corporate career until my younger son was 14).
It is important to know that you don't have to carry them all up at once."
This talk was the result of research that the dean had done on successful women in corporate life. Most of them had either not married, married and had no children, or were divorced or widowed with children.
The combination of marriage, children and work can be overwhelming.
You are amazing to me, carrying each suitcase and dealing with illness.
I don't have a suggestion for added energy. I wish I did.
I do understand that for some people prednisone can be a huge boost, at least in the short run.
Exhaustion and depression are co-conditions of auto immune diseases like Sjogren's. NOT the result of the illness, but actually PART of the illness.
I find this very hard for any of us to accept.
Life is difficult and making decisions about balance and change is one of the hardest things we have to do.
Please keep us posted on your journey!
Hugs
Elaine
Kelly,
You are doing great! SueAnn gave good suggestions as did others. I am going through the same issues. Coq10 has helped & dribose gets me through the afternoons. I'm still tired & achy but not as much (plaquenil has helped me tremendously too).
I've been so tired that even though I check in, I rarely have the energy to reply.
Carolina, great analogy!
Good luck. ;) Carie
Carie - CoQ10? I'll try it. I am a big proponent of natural/organic/homeopathis stuff. I guess that's why I struggle with guilt over taking real pain meds, but honestly I can't do anything on days I don't take at least one.
Elaine - LOVE LOVE LOVE the story. I never thought of it like that. Thank you for the posting and the kind words. I am still trying to take one day at a time. God fives me grace sufficient to get through the day, but if I look too far ahead I get depressed.
Thanks for all the support, I really need it.
KellyG