Work/Life Balance with MS

[Corriel]

Good day folks, I am struggling with continuing to work full-time. It was a conscious decision made when I got my DX in April 2013 and I knew that it would cost me most of my social life but I thought I could handle that if it meant I could continue to work. I changed careers and now have less overtime and work stress so I did what I could there.

Now I am noticing that in addition to the lack of social life that I am also too tired after working all day to do the exercises that I need to do for my spasticity which is now in my calves and ankles and not just arms. It seems silly to stop working because I can't find the energy to exercise but I do not have the option of working part-time where I am. It is either work full-time or go on long-term disability. I haven't looked to hard into the long-term yet because I am still mobile and while I have a lot of appointments, I am not out sick more than 2-3 days per year. I should be able to make this work.

I do well most work days until about mid-day and then I lose a lot of drive and energy and honestly don't produce what I should and that is frustrating for me.

Can anyone offer any tips that can help me out so that I can keep working and get my exercises completed (at least 4 times/week)? I only need about 45 minutes/day and there has to be a way that I can get this accomplished that I haven't found yet and I am just too tired to figure it out.

Thanks,
Corrie

[Corriel]

Thanks Alex! Like you, I need a buddy but it looks like I am on my own for a couple of months. One friend has another commitment that will keep her from joining until Feb and the other 2 prefer to work out in the early evening and that doesn't work for me. Gotta do it anyway. :)

You are so right that MS and certain jobs don't mix. I switched careers about a year after my diagnosis and while it has been less stress in the new job, it requires a lot more reading which is something I don't do well anymore. I used to be an avid reader but now I just don't have the focus for it.

You've given me additional inspiration. I know medical folks always say I will have more energy with exercise but hearing it from you based on your experience gives me hope that I will have more energy too.

C.

[HVAC]

Exercise is an odd thing. I am very anemic from the chemo. My doctors do not understand how I walk around at all with my blood levels. My neighbor walks with me three mornings a week. I do yoga once a week or ride once a week. My husband and I also walk the dogs. In the summer I swam an hour a day when I was not on chemo. I am a believer in some exercise.  I feel less tired during the day. I also take Belsomra a new sleeping pill. It keeps me a sleep. Before the walking I stayed in bed until noon or later. Of course I do not have a job.

I was never a jock. I did do physical labor commercial HVAC, plumbing and working with animals. I could never do those jobs even part time these days. I had a lot of guilt about no longer working. Certain jobs and MS do not work.

I will not exercise on my own I have to have a buddy.

Alex

[Winstoncat]

I am still working full time but am too exhausted to excercise at all. I have an hour lunch break and rain or shine I spend at least 20 minutes of it walking. It gives me more energy in the afternoon and stops me feeling guilty about having done nothing physical all day. I know it's not much, but it has kept me going and now most of my colleagues come out for a walk too, because if it it works for someone with ms it must work for them too!

[Corriel]

Thank you! It is good to know others struggle with similar issues have ways of coping.

[TLC1104]

Hi,
Going to the gym with someone may definitely be a benefit,  when I'm doing my physio, I'm chatting to the therapist & not realising how quickly the time has gone (only the time going quickly though hahaha) & the exercise is done!
As the gym is so close, maybe assess when it's not so busy and you can get to go when YOU will be most comfortable,  hopefully you can still work around going there during a working day............those energy levels on the up Corrie!
Take care
T.

[Corriel]

Thanks T! I hope the ladies' suggestions will help you as well.

I had a friend ask me to join a gym with her and it's a cheap one with just the basics but I think if I have someone else going with me I am less likely to not do it and I can incorporate my other exercises into a workout.

Maybe the exercise will give me more energy (and less time to eat). :) I can go after work too because it is close to my office although that is likely it's busiest time...

Good luck!

Corrie

[TLC1104]

Hi,
I too think the suggestions from Cheryl are great.
I haven't got back to my job yet,  I do work part-time so I'm hoping I can get there without as little stress as possible, hopefully you don't mind, I'll take some of these suggestions too haha.
Take care corrie.
Hope all are well.
T

[Corriel]

Thanks ess!

I have sleep apnea and I grind my teeth so I am never refreshed when I wake up. Modafinil is all the docs here are willing to prescribe right now and it doesn't work for me.

I thought when I was diagnosed at almost 42 that I could hang on until at least 50 but I will be 45 in April and don't think I can continue with the work/sleep cycle. I currently take vacation days if I want to do a social activity on a week night and if I have one on the weekend I can't do my housework.

The cycle is looking quite vicious at this point because I don't think my MS is as stable as it should be and I worry that by continuing to work I am harming my health.

I need to ask myself some serious questions and was hoping my counselor could help but I found out recently that she is no longer covered by my insurance and I am not looking forward to trying to find another. She was a great help to me over the last 5 years and the thought of starting all over and clicking with someone new is dreadful.

I hope your TN is healing nicely and not a problem. Hugs for your dog too.

C.

[Corriel]

Thanks so much ladies. I knew there had to be some simple things that I was just not seeing so I was hoping objective points of view would help and they have. :)

Not sure yet what my boss is open too and I admit to being scared about asking because I have so many appointments already and there is already a culture in my office of people not being at work (although not for illness). It has left folks pretty bitter so I would rather not go that route just yet.

The 15 minute chunks of time should do the trick. Some of the stretches I can do at my desk so as long as I don't have a lot of meetings/traveling to do I should be able to maintain 15 minutes during the day.

I may have trouble in the mornings and evenings but only because I have 2 cats and both have health issues that take up a small chunk of my free time.

I've recently started a fair amount of volunteering for the MS Society recently too because they were initiatives that really meant something to me and I couldn't pass them up for another year.

I need to be more balanced so I may have to forsake an extra 15 minutes of sleep to get the morning exercise done.

I don't get my fatigue right now, it's worse than it is in the hotter months so I was not prepared for the big energy drain happening right now.

C.

[essdipity]

I think Cheryl's suggestions are excellent, and I hope you can incorporate some into your life.

As for me, I retired early and acquired MS late, which kind of complicates things in terms of the fatigue factor. All I know for sure is that I get wiped out way way sooner than I ever used to. Some of this could be simply the weariness of age, yet I know a great many people my age with loads more stamina than I have. On days I absolutely must get a fair amount done I take 40 mg of Adderall. That more or less works for a number of hours, nothing spectacular, but when it's over I really crash. I've gotten too tired to cook a decent dinner most days, which is not a good thing for my health.

At the same time, my sleep is pretty awful. It's a miserable thing to be so exhausted yet unable to get good rest. I'm lucky to get 6 hours most nights, and often it's a lot less. Yet every few weeks I zonk for 12 hours or so. This all is definitely related to MS, and no medication really helps.

Anyway, this is all to say that in my experience there are no easy answers. I'm fortunate not to have to earn my living anymore, and to have to simply work and sleep, work and sleep, day after day, would be unbearable. Corrie, I hope that's not what you're contemplating. If things don't improve and your finances permit it, stopping work might come as a wonderful relief. I can't imagine how young mothers with MS as well as a paying job can manage.

The number one reason MSers leave the workforce is fatigue. The second  reason is cognitive decline. Sometimes these factors join forces and the decision is taken out of the MSer's hands. My heart goes out to anyone in this situation. At this point I'm incapable of salaried employment, and just hope I can keep on with my few volunteer hours.

ess

[HVAC]

Cheryl had all my suggestions.

Alex

[cjtmn]

Hi Corrie,

Thanks for sharing your experiences. I, too, am planning on continuing my professional life as long as I can, and I appreciate your mentioning about switching up jobs to reduce the overtime.

As to your question, I have struggled to fit exercise in BEFORE being diagnosed, so I completely understand your dilemma. I don't know what your routine entails, but here are a couple of ideas to noodle on in case something sticks:

1. Can you break up the 45 minutes into three 15 minute blocks? Maybe 15 minutes in the morning, 15 over lunch, and then 15 that you have to push through when you get home?

2. Is it possible to spread out your work schedule to have six 6.5 hour days so you have more breathing room?

3. Is it possible to shift your work schedule to start later so you can get your exercises in when you are freshest in the morning?

4. Can you work part of your day at home? If you could get those exercises in first thing, then work from home until your lunch break & commute in over lunch, would that help?

5. Do you have any option to reduce your schedule to 75% time? Five 6-hour days would really help with your time crunch if your employer is open to it?


I am sure others have more creative ideas. Please let us know what you decide to try. I am really struggling with the fatigue & working full time + family. I am finding that my body will force 7 hours of sleep if I don't figure out how to get it. This is a huge change as I have been going on 5-6 hours/night for years!

Best,
Cheryl