I have trouble understanding why I can run around at work for 13 hrs (I'm a nurse), and not really notice my pain and fatigue, but when I am home it becomes overwhelming! Anyone else experience this? How do you deal with it?
Hi, I can relate to this. I think for me, at work I am stimulated and too busy to "notice" a lot of pain and fatigue. Especially on the really busy days, the pain and fatigue don't set in until later. For me, I find this a positive thing, to remain as active as possible and keep my mind and body busy. It is when I have too much "down" time I am more likely to notice more pain. Of course, you do have to be careful not to overdo it but I know often the "fear of overdoing it" is more of a hinderance for me than actually just taking action. Yes, sometimes flares happen but I refuse to let Fibro stop me, otherwise what point is there in life? Like the famous saying, "I may have Fibro but Fibro does not have me." Thank you as well for your profession, I am sure many people appreciate your assistance. Hugs.
I think we just push through. I have been blessed lately with little to no pain due to some natural supplements but even I deal with flair ups and they always show up after a major responsibility. Key word AFTER so it is true it’s once you take a moment and breath
I am retired now but I notice this same reaction when I travel. Whenever I am away from home (trips, not errands) I always feel better. More energy, busier. But when I return home, the same old fatigue and pain return. It must have something to do with stress at home, even if we aren't thinking about it, and being away from all the usual stimulants. Being a nurse is certainly stressful but as you say, you are busy and not thinking about how you feel at the time. Hard to deal with, as pain can be controlled a lot with meds but the fatigue is overwhelming. It's what I hate most about Fibro....that and fibro fog. If anyone has any good suggestions on dealing with fatigue, please let us know :))
It has been proven that the more
You can move the less pain will have.
But like those with physically demanding jobs they are pushed daily
With out adequate rest time’s during the day to allow for pain management.
When they get home their bodies are in over load mode and start screaming to protest its pain and fatigue.
Stress relief in any form needs to
Applied to at work to help with relief from too much over load.
I am also a nurse with the same issue. I have not figured out a good way to handle my home life after a work day. The pain and fatigue is awful. Like you said, I can make it through a day, but afterwards, forget about it. I am a pile of mush. I’ve needed to cut back on my hours and change from my 12 hour days into 8 hour days.
I’m not helpful with figuring out how to solve it, but, I will give you sport to know that you are not alone. We are in this together.
- Jennifer
I understand what everyone is talking about being at work all day going flat out and pretty much being deflated at the end of the day. I also work in health care on an extremely bust unit, I’m not a nurse but administrative so everything gets given to me to take care of. I think that working in our busy environments is again that fight or flight mode which wears out our whole being. That being said instead of watchingTV after work I have made a space for me where I can relax, listen to music , meditate do sodoku puzzels (to keep my brain busy), color etc. I’ve taken many kinds of programs to help with retraining my brain to focus on the positive in my life instead of my pain, fatigue etc. It doesn’t make things perfect but it really does help me.I still don’t have energy to do much housework but it does help keep my depression from taking over as well.
Linda
This has been a mystery to me. If I am around people I find I can function and rise to the occasion. If I am out and about I can do so much more. Although if I am out by myself pain and fatigue returns much quicker. I've had people over and can manage until quite late, but the last hour or so I begin to feel pain.
I tell myself that this is because I am focused on others (I work part-time from home as a therapist/counsellor).
Or, I simply "push through" which is true for other activities.
Or, that I am engaged in something positive that "gives me life".
Or, that I am having a good day with minimal pain and fatigue.
Or, that I simply don't know the answer to "Why?".
There is certainly a difference for me between being active and involved and overdoing it. I am always trying to figure this out. Once a month I volunteer at a Clinic in Tijuana and it can take two days to recover since I need to be up at 4:00 am and I may get home as late as 7:30.
But, yes, when I am home the symptoms are worse. For me, it is the stress of so many things that I cannot do and feel frustrated about. Or, other issues that are heavy on my heart, like family, that seems to be unavoidable in the quietness of my home.
Thank you for bringing this up. All the responses helped me with support and suggestions.
Blessings to you.
Mariposa said:
This has been a mystery to me. If I am around people I find I can function and rise to the occasion. If I am out and about I can do so much more. Although if I am out by myself pain and fatigue returns much quicker. I've had people over and can manage until quite late, but the last hour or so I begin to feel pain.
I tell myself that this is because I am focused on others (I work part-time from home as a therapist/counsellor).
Or, I simply "push through" which is true for other activities.
Or, that I am engaged in something positive that "gives me life".
Or, that I am having a good day with minimal pain and fatigue.
Or, that I simply don't know the answer to "Why?".
There is certainly a difference for me between being active and involved and overdoing it. I am always trying to figure this out. Once a month I volunteer at a Clinic in Tijuana and it can take two days to recover since I need to be up at 4:00 am and I may get home as late as 7:30.
But, yes, when I am home the symptoms are worse. For me, it is the stress of so many things that I cannot do and feel frustrated about. Or, other issues that are heavy on my heart, like family, that seems to be unavoidable in the quietness of my home.
Thank you for bringing this up. All the responses helped me with support and suggestions.
Blessings to you.
We all seem to agree that being away from home makes us feel better and being home is worse. What does that tell us? I am a widow and live alone, so for me, it's not that I can't rest when I'm home, but it doesn't seem to help. Most of the time I'm fatigued. I hate it but haven't found any long term solutions. Interested to know what others do. Mostly, when I have guests, or am volunteering, etc., I think I must just "rise to the occasion" and collapse when I get home. There must be a better way.
Hi ceesmom, know what its like, I used to work 13 hour shifts and collapse when I got home too. I had to negotiate a cut in hours which was part of the reasonable adjustments at work. I now work 27 hours (at work 10 hours but we’re not paid for breaks). Its not easy financially and there was some resentment on the management side for a while but its all ok now. I also have fixed days which means I can rest in between shifts. Its still just as busy a shift (dialysis unit) but I don’t collapse in the car in tears anymore either so its much better for me. As I run my own bays of patients and staff I find I can arrange my work to suit how my body is coping without others realising I’m doing it.
I had to face the fact that I’m not wonder woman anymore I could not continue as I was, I’m much happier now and believe I’m more productive too.
You have probably all heard "It's all in your mind".... well, my doctor let me borrow a very simply written book that tells how pain IS all in your mind. I found it really helpful as I also notice when I am with people or at a grandson's ball game I feel fine, and when I get home I feel like crying the pain is so bad. The booklet tells about how your nerves SHOULD just be scared when you step on a nail, or a full grown lion enters your room and then go back to normal. But if we "allow" our brain to be on the lookout for pain all the time, it grows more sensitive to anything. it gave an example of if a baby lion cub wandered into our room, would we be terrified or might even want to PET IT ! it's a message of how we can begin to retrain our thinking and focus. I know I cant write much on here, but it showed me that I am not crazy. When my mind is occupied with other things, travel, a movie, talking on the phone, even being at work around people, I do not feel nearly as bad. everyone please give it a try to re-focus your brain. I have started to say out loud to myself, this isn't so bad, its not a tornado, I think a soft breeze just blew a leaf across my face. !
I was very interested to read this discussion, and how we experience things differently. In my experience, the key thing that emerged here was our relationship with the pain we have. Sometimes we are able to deal with it, push through. The same with the fatigue ( this is often when people say it is all in the mind), sometimes we can , sometimes we can't. For me this is where mindfulness comes in, it does help to change our relationship with the pain, and impact on other things. There is a group here you might like to join to find out more. Of course everything is in the mind, so don't take that as a bad thing, and it doesn't mean it's not real!
Take care, Anne
I have the same issue. I work 10 hour shifts x 2 days in a row and generally can get through without too much trouble but if I try to go in a third day I simply can't. I can't focus, I don't have energy and I'm in pain. It's not a matter that I don't want to be there either, I really enjoy my job. I usually have to take an entire day or day and a half (if I'm lucky) to recover (do nothing other than what is absolutely necessary). I have realized just because others can work "x" number of hours in a week and feel fine doesn't mean I can as well. I'm finally okay with understanding my limits rather than questioning them. The grace I've finally granted myself makes getting through that recovery day or two much easier (and less painful).
Thank you all so much for validating how I feel and all the suggestions and support. It really is good to know I’m not crazy or alone.
I was glad to see this discussion come up, too, as it is something we all deal with constantly. I still work fulltime in a very emotionally charged job - I work in a cemetery office and any given day can just drain me. Sometimes that is physical and lots of time it is emotional. We are a small office of 2 people, but we work hard and at top speed most of the time we are there. We deal with the families at one of the worst times in their lives and that can't help but wear on a person.
I, like so many of the rest of you, can go flat out for the entire workday and get home to only feel completely hollowed out and like I have been run over by a truck. During the day, I even have thoughts of, "I can do this when I get home" or "I can go grocery shopping right after work and then go home to cook." Those are really only pipedreams in my current circumstance. Sometimes, I manage to push through a couple of chores before I have to sit down (sometimes lie down) and then that is all she wrote! I will still be there, or asleep, by the time my husband gets home from work to a dark house and no dinner planned/fixed. He has gotten so tolerant of me and how I feel, but I feel as though I am not keeping up my end. Too often we order take-out or have something delivered, which, of course, is not the most healthy way to eat.
Every other weekend, I work on Saturday morning until noon. That tends to really shoot my weekend, too. I get home and I am already exhausted just from that half day at work. All the household chores tend to get pushed to Sunday's agenda only to think that I really need that day to regroup and energize for the coming work week - so, again, nothing really gets accomplished. It does tend to mess with one's psyche and make one feel like a failure at home. The house is always dusty, the kitchen floor is in a constant state of needing to be mopped, the laundry gets done on an "whatever is currently the most urgent to be washed" basis. Usually when we have put on the last clean pair of underwear or socks; can you relate?
I do understand the concept of trying to refocus our thoughts about the pain, but it still seems a bit insulting to me on a certain level. When one is not the one in pain, it is generally easier to downplay the effect it should have on one's day to day life. I am not disagreeing that there is some validity in trying to not dwell on how bad one feels, but it is still relevant that the pain is very real - not just in our minds. So, the coping mechanisms come into play and one finds "work arounds" to make one's way through a particularly painful day (flare) and sometimes that simply means shutting down as many distractions as possible and waiting it out. The idea of pushing through the pain (read ignoring it) is possible for limited amounts of time and under circumstances that require that push, but I don't personally feel that I can keep making that effort every day after work. I feel like I can either still be competent in my job, that pays the salary that we still require until retirement, and let the things at home slide, or I can fail at both things (work & home). My boss is fairly understanding, but can get into a snit very quickly If she feels that I don't "give it my all" in the workplace. She feels quite justified in pointing any failings out to me in a very public manner, so I do try to limit giving her any instances at which to gripe at me. And, again, my husband is so supportive of my circumstance, that it is quite easy to let things go at home.
So, ceesmom, that is my perspective, for what it is worth. I hope you can find what works for you. You are certainly not crazy or alone in your struggle against this insidious illness.
Oh yes, you put so much in your reply quite accurately. I know all about the plans to make one stop on my way home only to be disappointed because I simply cannot do one more thing. I recently fractured my foot and the healing is taking a long time (more than 3 months). I start physical therapy today and hopefully the PT therapist will have a knowledge of
Fibro so as not to hurt more but heal and strengthen more.
My husband helps a lot and I am able to continue work part time - I have an office in my home and work as a family and individual therapist.
Some of the ideas shared by others do help - for me I need to go about it slowly at my own pace. However at times just the thought of trying something new feels overwhelming. I try to remind myself that if I can do one thing that will help me, though it may seem a very small step, I believe it will be helpful in the long run.
I hope you'll get hope as you see time getting you closer to retirement - a light at the end of the tunnel. Is cutting back your hours and hiring a part time person an option? I did this in the past, working with my employer for a win/win solution. I just couldn't handle working so many hours.
I will keep you in my thoughts and once again, thank you for being candid and expressing what you are going through. I so relate to your comments.
My exhaustion was tremendous! I even thought that maybe I wasn’t getting enough protein (stomach stapling in 2001), but my vitamin levels were checked and it was very low…7.5. Took 50,000 weekly for 3 months now daily 5000. the exhaustion is better. Get your vitamin D levels checked.
comotoisattic said:
I think we just push through. I have been blessed lately with little to no pain due to some natural supplements but even I deal with flair ups and they always show up after a major responsibility. Key word AFTER so it is true it's once you take a moment and breath
Hello,
Well I like many who have replied feel that at work you are forced to perform and have a high demanding job. So when you are at work you your mind pushes you on and you put your body into the work mode which causes you to have that mode over ride the pain mode. I have also seen studies on how keeping yourself moving actually improves your overall pain. I find if I am in pain at home I want to veg. And just lay in my Laz- boy so when I feel that way I force myself to get up every half hour and to do something even if it’s a small task. The longer I stay not moving seems the worse I feel.
I know everyone on here has different levels of pain, different means of coping strategies and we all have to create a plan to feel better even if it means forcing ourselves now and then.
My hat goes off to you for the job you do each day as a nurse. It seems to be one of those thankless jobs, long hours, less staff and req hired to do more and more each day. I hope you can hold out long enough to earn your full retirement. Just know that there are some of us out there like me who appreciate you 100%.
Ron
Great discussion, all. Is anyone familiar with the “push/crash cycle”? I think for those of us in the workforce, we often give our best energy, emotional and physical, to work and crash when we get home.The “push/crash cycle” is a cycle adapted by those that are chronically ill with fatigability aspects to their illnesses i.e. Fibro, MS and CFIDS. Here’s an interesting article on the cycle and tips to help manage activity levels throughout day… I think it’s an excellent supplemental piece to the beloved Spoon Theory.
http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussio…