I have to admit that I’m nervous about returning to work tomorrow. I took 6 weeks leave to see if it helped me feel better and reduce the amount of flare ups. Which it didn’t. I’m fortunate that I don’t have to work but I’m hoping my body can tolerate it. I don’t want to disappoint anyone but I need to put myself first which is something I need to work on. I’m better at putting others first.
I’d love to hear about everyone else’s experience with balancing work and home life. And any advice or words of wisdom is more than welcome.
For the past few years I’ve been taking sick days and asking to work from home when I’m having bad times. I have only recently been diagnosed after years of only treating IBS and arthritis. My immune system has taken a knock recently also so I’ve been getting every bug that’s been going round. Doctors now tell me this could be due to lack of beneficial sleep (from fibromyalgia) reducing the effectivity of my immune system.
I notice that people in the office roll their eyes and make snarky comments about me being sickly and not being fit or healthy. I want to scream because I am actually pretty fit and healthy (when I’m not having a month of getting colds and flu). I eat incredibly well and get a ton of exercise when I’m not having flareups. It’s pretty soul destroying when people give me their 2 cents worth… “try eating more healthily”, “make sure you get some rest”. “you should look after yourself better”, “there’s nothing wrong with you”, etc. It can be very upsetting and truly makes me want to scream.
But as my ever-patient partner tells me “why do you care what they think?”. My boss knows my condition and is supportive and very fair. I am clear with her and my HR dept. about what is going on and they know I am still working very well but need to make adjustments to my schedule sometimes.
Take each day as it comes, don’t expect every day to be perfect, and try to stay calm. Please don’t try to please others over listening to what your body needs. Sending you lots of courage and strength x
1 Like
HI Chuckles,
I am currently on a disability leave that I started January 2nd. I suffered at work for over a year with this , and one of my primary issues is terrible anxiety along with all the daily pain. At first doctors thought I had lupus and I was diagnosed officially 4 months or so ago. I am fortunate to have a job where I have been there 13 years and I am able to take up to 13 weeks of disability leave with pay. I took full advantage of that to try and get things under control, as I work in a call center which is a high stress atmosphere. I am going into the 8th week of my disability leave and I feel like I am only very slightly better than when I left.
I saw my doctor yesterday and told him I needed this third month. They started me on Savella two months ago, on the lowest dose of 25 mg twice per day. I didn’t notice any improvement, and I was also going to physical therapy twice per week. They raised it to 50 mg twice per day last month, and the only noticeable improvement was less peripheral neuropathy in my feet and I haven’t had any headaches. My anxiety seems as bad with no change and I still have terrible pain, especially in my lower back (I get a break from it every few weeks for about a week, then it starts back up). I still cant do many tasks at all without suffering for the rest of the day with legs, arms, shoulders, upper back, lower back, you get the idea. I feel like I am in a permanent flareup that varies day to day, but never ends and some days it really ramps up and makes me suffer for days and days before calming down again.
A couple weeks ago I stopped physical therapy and joined the YMCA. I took one aqua exercise class and it was the happiest I felt in over a year. Finally I could move without pain, while in the water. I felt some hope. Of course after the class, I suffered for two days, but I believe if I make this something I can commit to at least 3 days a week, maybe I’ll start feeling better. I slept the best I have in over a year after that class.
I went back to my doctor yesterday and expressed that I needed this final month from work to do that. I wanted to ask for medication changes based on what I have researched, but he is convinced that we just need to raise Savella to 100 mg twice per day. He says it is going to improve my anxiety and pain. So, I went with doctors orders and am hoping for the best. I was terrified that today could have been the day I was returning to work, so I understand your fear. I was fortunate to get another 4 weeks extension, and I am sure that when that ends, I will be just as scared. My hope is that since the weather is warming up here in New York that my symptoms will be calming down and it will be okay.
I wont ever feel bad for taking care of myself. I hope this Savella is really going to work like the doctor believes it will. I will go out on leave annually if that’s what it takes because I have 7 years before I can retire. Whatever gets me to the finish line with this disorder, that’s what I am going to do and I really dont care what anyone else may think. I know how I feel, and if people knew this horrible disorder, they wouldn’t be so quick to judge. So, I will dismiss their ignorance and do what I need to for me. You should do the same whenever needed with no apologies. We need those breaks to regroup.
Sincerely,
Starr
Take it easy when you go back. The main thing is listening to your body. It’s great your putting yourself first, I’m a giver to everyone also. I work part time from home & have found changing positions often w/moving will help also. Wishing you the best!
I have been suffering from Fibro for over 20 years. I have always worked full time and been able to manage my work and home like. That is until the past few years… I have had a couple of surgeries on my hand and my foot and the recovery for these surgeries really took a lot out of me. I have notice a steady decline in my health. I recently asked if I can work from home 2 days a week and was told no even though I explained my health situation. Oh, I can work from home if the weather is bad (I live in a cold climate which doesn’t help) or if I have a good reason for needing to do it but not on a regularly scheduled basis. I see my doctor today and I am going to discuss with her about it and see if she can write a letter for me to give to my manager that says for health reasons it would be beneficial to work from home a couple of days a week. It puzzles me because there are 2 women that I work with that ARE allowed to work from home because they have young kids. Why is that OK and I cannot do it for health reason!!! The 2 women are friends so I really don’t want to “rock the boat” too much but it really isn’t fair to allow them to and me not to. I don’t need to work but I do love my job and am trying to work as long as I can but I feel 2 days at home working would help me extend that time which would be beneficial to the company. Anyway, I totally understand about balancing work and home life. I need to take care of ME for a change. I wish you well on returning to work and I hope you are able to manage your flares. You need to take care of you and not worry about disappointing anyone. Wish you well! 
Good morning Chuckles, I guess today’s the day, you’re heading back to work! I hope the day is positive, productive and pain-free.
I no longer have the luxury (hmm… is that the right word??lol!!) of working full time. Or in my field of expertise. I’d give anything to be earning an ACTUAL living again, contributing to my 401k, having high quality health care options, paid vacation time… but mostly the satisfaction and fulfillment of doing a job I loved and did well.
My body simply will not let me. Before being forced to retire from a 30 year career in nursing, I tried to communicate with my employer the things I needed to be able to continue working, with suggestions and ideas to improve the ergonomics thereby keeping me free of added injury, as well as ways to work around fibromyalgia flare ups. Unfortunately it all fell on deaf ears. I envy your situation in that in seems like you have some good people to work for, who understand the value of seeing their employees succeed to the best of their individual capabilities.
I hope that you find happiness and fulfillment there!
The balance between home and work life; in my opinion, hinges greatly on how well you are looking after YOURSELF. Physically and emotionally. For people with chronic pain, that in itself can be a full time job! I hope that you’ll schedule in the much needed self care to each of your work days, and treat it as JUST as important as being on the job.
Best of luck today!!
Hi Becca,
Thank you for sharing. I’m very fortunate that my boss is so supportive. I’d love to work from home if I could. That’s something I’ll be discussing with our President. My coworkers have never said anything to me other than asking questions to learn about it. Two of them dont. They just go about their business. But because we don’t have a cast or anything people can see it’s hard to express how it feels. And you’re so right about sleep. A bad night or nights can send us into a flare up. Of course I would have a bad night last night. Sigh…
May you’re sleep get better and your immune system get stronger.
It sounds like you have a supportive partner which is wonderful.
Best wishes!
@Starr1
Hi Starr1. I really appreciate you sharing your story. In many ways it sounds similar to mine. I was on vacation last week and found that I too felt great in the pool. I have a hot tub so I use it when I feel really bad but can’t in the summer because I now get hives if I get too warm. When it’s warm enough I lay outside in the lounger.
That’s wonderful that you can take 13 weeks off. Do you have to take it all at once or could you split it in half so you get two breaks?
I hope the Savella gives you some relief. Please keep me posted.
Best wishes
Thank you. I did take it easy and only worked a half day. My arms were extra tired and achy from using my computer. Otherwise it felt good to go back😊
On my. I cannot even begin to imagine how hard nursing would be with fibromyalgia. That’s a lot of time to be on your feet. It takes a special person to be a nurse I always say. I’m sorry that you had to give it up. Fibromyalgia can be ruthless.
I have a lot of concerns about things like my 401k too. My company is generous with their matching contributions and my medical premiums are very low.
I listened to my body and only worked until lunch. Lack of sleep was an issue last night and we know how much that can affect us. Hopefully tonight will be better.
Thank you for sharing. I wish nothing but the best for you.
@ElaineVT49.
It felt good to be back to work. I did cut it short and most likely will for awhile.
I’m sorry you aren’t able to work from home. I don’t understand that especially since others are allowed to and you have a medical need for it. I hope your doctor wrote something up to help you out and your appointment went good. For your own health you may need to push it though. You take care of you too.
Good luck and best wishes!
I was going to suggest not jumping in full time, but it sounds like you’re already easing into a full day. Very smart!!
Hi Chuckles, I’m glad you were able to pace yourself on the return to work. I’m no longer able to do the job I had in the medical field and am waiting for my disability to start. My advice, much like everyone else is put you first and don’t feel guilty about it ! Try to remind yourself when you feel like your letting yourself or co- workers down that your doing the same job but with a body that’s under duress and that no ones performance is 100% when you are ill ( flairing) . I went back to work for 5 months after a hysterectomy , I realized after 20 years in the field that the job survives without you . I also realized that I hadn’t been at my personal best on the job for quite awhile and that I needed to focus more on my health . If financially possible let your body help you determine when enough is enough, the job , family , laundry ect. Can wait till the flair eases. We only have this one life so make it the best one for you too. Good Luck !
Thank you. Still trying to figure out a balance but so far so good. I’m feeling it more even with limited hours.
Have a wonderful day😊
@Jse123
Thank you. That’s great advice. I am putting myself first without any guilt for once. Seeing a therapist and having a great support system at work and home is so awesome. I’m very lucky. We are lining up plan A, B and C so I do have options. I love my job so we’re looking at ways I can still work.
Thank you again😀