I have been Dx with MS for 10 years now, and up until the past year or so i have been working full time, and even studying for my Masters FT! A little over a year ago I suffered a major relapse that has left me with enough fatigue that I can't keep up the pace. I have tried everything, but I can't seem to manage working full time and still "living". My daughter is suffering, as I need to take a nap when I get home, and she sees little of me until dinner time. This nap also interferes with my nighttime sleep, as I can't go back to sleep so soon.
Also, until this relapse I was physically active and now I can't manage to do anything other than walk the dog. Its not that I can't do anything, its that it gets ruled out in favour of going to work, making dinner for my child etc. I just cant DO everythign I need to.
I have contemplated reducing hours at work, but that will affect the pension I will be able to draw later. I don't want to go on disability, as I am still quite "able", just not able to do 100% of what others do. I am a single mom, and reducing my income is going to significantly effect my ability to provide for my child, and I am likely to end up living with my mother. I love her dearly, but I want my independance.
Up until a few months ago, I had some stability on this issue, as I had a wonderful boyfriend who was intimately knowledgeable of MS (his mother passed away with PPMS) and he was fully supportive of me. Though he encouraged me to work as long and as often as I could, he also said he would be there for me if I couldn't some day. Alas, that relationship is now in a hold and I can't rely on him anymore.
So I guess I am asking what some of you have done, or have planned when dealing with a similar situation. Any suggestions of how to think about this? What helped you? I really don't want to stop working, but I am faced with continuing to let my physical health decline in order to support my child, and I just dont know which one is going to win here. Please share with me anything that may be helpful, I feel completely torn in so many directions.
There are medicines specifically designed for fatigue in MS patients. My nuerologist suggested some for me when I was having a bout with fatigue. Maybe you could check into this as an option. As far as anything else goes, I am not the best of help....
I am sorry that you are so wiped out the way that you are. I do hope that you can find a way to cope with your fatigue. Keep your chin up and hug that kiddo of yours.
Tom, thanks for your reply. I guess I forgot to mention that I am already taking fatigue medicine: 100mg of modanifil a day. I have leave to take up to 200, but then I can't sleep at night.
It has been an unrelenting fatigue now for 15 months. Before I got it intermittently, and a good nap would take care of it enough. But now it is ever-present, and also a muscular/body fatigue when I exercise or do a lot in a day.
After my flare in 2007, I had horrible fatigue for several years. I had to take short naps during the day to keep from falling asleep at my desk. It also affected my output, as it's hard to get things done if you're trying to keep your eyes open.
Part of the problem is that your last flare left you with neurological damage. Many theories have been posited about MS fatigue, but the most logical one is that because of invisible damage, the brain is having to work around the areas that once were easy to get through. Think of it as a path in the woods - the old path is now all muddy and torn up, so to reach your destination, you have to walk this much longer path. It's no wonder that you get tired!
The best thing to do is sleep. Sleep helps you heal. Exercise does too - I understand completely about the all-over fatigue. And give it time, too. It took three years for my vertigo to go away, and five for my fatigue to retreat to a manageable level. It's still a problem - I don't think it'll ever go away.
I too am a single mom that is struggling with working full-time while dealing with fatigue. I feel your pain both empathetically and litterally. How flexible is your work schedule? Is it possible to take a 30-45 minute nap around lunch time? I am extremely fortunate to work in an office and get a 60 minute lunch. On days when I am completely out of sorts, I am able to sit in my car or in the board room and take a short nap. I hope life gets easier for you. Stay positive.
I feel for you girlfriend, I honestly hate feeling fatigue!!!!!! What I found to be helpful were getting massages.... I have'nt been able to afford it lately, but I feel I have more energy and my spirits are much higher when I do.
I had to leave work in 2008 because I just couldn't keep up anymore... my neuro was concerned that if I tried to keep working I would get fired for my inability to keep up and lose my private disability ins that I was paying for. I have PPMS. I have cognative deficits. Good luck!
~Live as if all your dreams came true~
Welcome to the forum. The dilemma you are in is so familiar. Expending your energy during the day, and when it's family time, too shot to really "be" there. It's just so hard especially financially, and then the aftermath of the pension reduction.
Is this the first time you've had the crushing fatigue? My thoughts are that, if so, maybe it will take months to subside, and return to something more bearable/doable.. And, if not, try switching meds, or work hours. Not necessarily a reduction, just something a bit more flexible when you can go in later a couple days a week to have more rest in the a.m. I find when I get that extra time in the morning, I'm better throughout the day.
Though I admit, when I had crushing fatigue there was nothing I could do. It was all I could do to get through the work day, then into the shower, and bed. Same thing, no family dinners, no help with homework, and felt like a big piece of crap of a Mom. It's horrible. Took the better part of 5 months for mine to lift to something bearable.
I hope it passes, and if not, hope you find some combo that helps you get through what you need to. Are you crock potting dinners? So, you don't have to stand and prep dinner? Just dish it and spend that quality time w/fam? Just secondary thoughts - something I wish I had done.
Thank you for joining us :) Hope to see you around.
well here I am again, it's January and nothing has changed. I am still fighting the fatigue, though I have managed to get more flexible hours at work it means finishing up on weekends and never really getting that full recharge,
Add to that the end of my work contract next month and the worry that comes with it. I am just barely holding on now and am contemplating a career change in hopes that I may find something less mentally draining. I just ***** since I am a smart cookie!
I really appreciate the feedback. I am using some of your suggestions and it just feels better to know I am not alone in this struggle,
My main problem all along has been fatigue. I am still physically very fit, with little neurological deficits, from the outside I "look good" most of the time. I have been off work for three years or so now, because of ms and other health problems and the need to take care of my son. I am lucky because I still have a job where I can return ( I am a civil servant), atlhough my career as such is of course gone now.
I had a turbulent period with the diagnosis, divorce, custody battle and the like which almost drove me to a very dark place and depression. Now things are much better and I have recovered from depression, too! My ms is active but I manage.
I've been thinking a lot about going back to work. I've been on temporary disability for three years and although I manage and am not a materialist type of person, it does hurt to think I would be living with such a little income for the rest of my life. It would be better if I had a husband to support us, but I can't rely on that ever to happen. But if I go back to work, I will be drained of all mental and physical energy by the time I get home. What is left for my 9-year old son? I feel I can not do that for him. He needs a living, functioning mother! The poor kid already has suffered parent's divorce.
I have a Master's degree but I have been completely satisfied being at home. With the health problems and fatigue I have had and continue to have, I cherish my memories of intellectual debates and working life, but I have come to accept that my route in life shall be different as it is. Perhaps working part time could be an option. I just don't like the idea so much as I think I will get all the stress with a lousy compensation. But there are good sides, too, so I will keep thinking about it.
Tell us more about your current situation! How are you managing fatigue?
I am diagnosed with cis only at this time.
At the moment I'm taking 400mg's of provigil(modafinil) a day. I'm barely getting through the days that I work normally i'm finished for the day by half 6 by which time i've managed to get home and in to bed.
I'm a single parent with a teenage child I work 30hrs a week only over 4 days . Financially i can not stop working. My 15 yr daughter does not get home cooked meals the days i work she often cooks for me! Some days i can't make her lunch for school the next day (she makes mine instead).
It breaks my heart to see her doing these things for me. In the last couple of weeks since the fatigue has gotten so bad I've even been thinking of asking her father to take her so that she'll have some sort of a normal life .
I'm up out of bed now after a 4 hour nap!
No work until Monday thankfully
It breaks my heart to hear what you are struggling with. Is your fatigue constant or do you have better days in between? It seems to me that Provigil is not working. Modafinil did nothing for me, although I could try again for a longer period and double the dose or something.
How long have you suffered from this kind of heavy fatigue? I have had easy fatigueing ever since I was a child. In my twenties I could not be in denial anymore, it was obvious there was something wrong with me. Six years ago with the diagnosis I finally got the answer I think.
At least you have been able to live with your precious daughter and you have gotten to know each other. Even though the fatigue is there. You are still there. It is important. There are parents who die. There are parents who have to give their children to an institution or a foster home because they are so ill. This happens every day somewhere. We shall be grateful for what we've got.
You have a clinically isolated symptom? So you are basically just waiting if there will be more so that you would get a diagnosis? With the fatigue only, I never went to the doctor, because I thought that nothing will come out of that. Later I have thought that maybe I should have gone to see a private neurologist at the time who would have sent me to MRI of the brain - it would have been interesting to know if there were any lesions then (without any other symptoms). Could you do that?
Sorry about the self pity last evening . I actually feel much better today , fatigue yes but nothing like the days that i work.
I really think that the privigil is working as the days i dont take it is much worse from earlier in the day it would get really bad from 11 in the morning otherwise. i have fatigue all the time but really only at this extent for 4 weeks
I did see my neurologist less than2 weeks ago and have scans booked for less than 2 weeks time,.
I have 3 lesions in my brain only and other symptoms and possibly another totally new symptom that started 3 weeks ago.
As for my daughter I'd never ask her too go really but i do feel sorry for her that she has to see me like this at times
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