Working with CFS... Management and recovery?

[keepswimming]

Hi all,

For those of you who are able to work, I would be interested to know how you adapt your work to cope, and how you recover afterwards.

I have a part time job which means I work two or three four-hour mornings a week. Fortunately my employer is being really supportive since I've developed CFS over the last year - they have employed someone for 45 minutes of my shift to cover me while I have a lie down, and my employer is OK with me having time off if I have a crash. Even with these things in place it's not easy, I do feel a bit rubbish after my work days - but I'm finding if I am careful and rest I usually recover after a couple of days. My employer has also made an appointment with occupational therapy next month to see if they can do anything else to adapt things for me.

I'm still adapting to having CFS and I would be interesting to hear from others who are managing to work. What are your coping mechanisms and how do you recover afterwards? Any suggestions on making it more manageable?

Many thanks

 

[CreativeB]

Hello @keepswimming. I would describe myself as having mild/moderate CFS/ME and work full time. I appreciate how difficult it can be trying to keep going with work and sometimes wonder if I should be working less. The difficult thing for me has been learning how to manage my symptoms. I usually get to the weekends and holidays and rest. Sometimes I still crash when I stop and rest.

My employers sent me to Occupational Health and what we're now doing is that I work from home at least one day a week. If I don't have a class at 9am i can come in late. Beyond that it's about trying to plan how to use your time, stagger your tasks and take regular breaks.

For me, the hardest things have been to be really disciplined and learning to say no instead of taking on too much.

Everyone is different in how CFS/ME affects them and the kind of jobs we have, but I hope I've helped a little. Goid luck

 

[BeADocToGoTo1]

When I started out again I had to dedicate an hour each afternoon for meditation and a nap. A warm blanket, ear plugs, eye mask, comfy pillow and lying down. Yoga breathing, meditation and relaxation techniques would get my circulation flowing so I could feel my muscles relax, hands and feet getting warm. Not long after in this state I would fall asleep for a power nap. So from around 15:00-16:00 I blocked the time as a meeting. In the evening I would do a hot bath with a few cups of magnesium (Epsom) salts. Of course I had to be on top of my supplementation and food regime for nutrient balancing. No restaurant, cafe, or office food or drinks to avoid those insults. Home made food prep in batches.

 

[Rufous McKinney]

I worked full time, while having what we call mild ME for decades...which gradually worsened over the course of decades..and then abruptly got ConSIDERABLY Worse... rarely able to leave apartment...for the last three years.

Things that allowed me continue working included the home office...the amount of energy that can be saved by NOT having to drive somewhere, get all dressed up, get food together...everything people do at 6 am before work. And after 5.

I would just get up, make a cup of coffee and work for 4 hours straight.

When things intensified, my employer agreed to modify my duties. Driving and going to remote meetings became too difficult so I was often able to participate in those types of things via teleconferencing.

I had control of my own schedule, so pacing was critical. Don't schedule very many meetings... include recovery time.

The last two years I worked, I had federally protected sick leave that I could use when I needed to simply STOP now. That was really important. (otherwise, my employer required doctors notes and "permission" to be off sick. ) I worked about 30 hours a week, towards the end, on the computer mostly. And that is exhausting in its own way.

 

[Rebeccare]

Any suggestions on making it more manageable?

The simplest answer, which is not always easy or possible, is to reduce your hours to the point where you feel like the work is manageable. If your body is telling you you're doing too much, it's important to listen to it. Or how do you think that redistributing your hours might work? Instead of working for 4 hours 3 days a week, does maybe working for 6 hours just 2 days a week sound better, or working 3 hours 4 days a week?

Another strategy, which may or not be possible depending on your type of work, is to work from home more. I work 20 hours per week, and about 10 of those hours are from bed. Not having to get up (or even sit up) in order to work enables me to do more with fewer consequences.

I wonder if there are changes that could be made to your workspace that could allow you to put your feet up, or even recline? I'm glad that your employer is consulting with OT, and is so supportive of you! I hope that you can find some strategies that allow you to continue to work as much as your body allows.

 

[keepswimming]

Hi @CreativeB, thanks for your answer, I found it really encouraging. It sounds like you work in education - so do I, I work with Early Years.

The difficult thing for me has been learning how to manage my symptoms. I usually get to the weekends and holidays and rest. Sometimes I still crash when I stop and rest.

I guess this is similar to what I'm doing at the moment although obviously I work lower hours. Do you feel that spreading your energy like this out over the week is still staying within your energy envelope? So if you do more than normal some days, but then less other days to recover, you find that works and doesn't have ill effects in the long run?

It sounds like occupational health had some good suggestions for you, which is encouraging as I'm not really sure what to expect from them but hopefully they will be helpful.

Thanks again

 

[keepswimming]

When I started out again I had to dedicate an hour each afternoon for meditation and a nap. A warm blanket, ear plugs, eye mask, comfy pillow and lying down. Yoga breathing, meditation and relaxation techniques would get my circulation flowing so I could feel my muscles relax, hands and feet getting warm. Not long after in this state I would fall asleep for a power nap. So from around 15:00-16:00 I blocked the time as a meeting. In the evening I would do a hot bath with a few cups of magnesium (Epsom) salts. Of course I had to be on top of my supplementation and food regime for nutrient balancing. No restaurant, cafe, or office food or drinks to avoid those insults. Home made food prep in batches.

Thanks for your reply @BeADocToGoTo1 . This sounds similar to what I'm doing for my break mid morning. I have a quiet room to lie in, a cushion and I listen to some relaxing music to help me rest. I found it really upsetting that I had to do this to start with - but my colleagues are all supportive and I've realised how much it helps me.

I am trying to eat a good balanced diet too - resisting the staff biscuits can be a challenge, but I make sure I always take a healthy yoghurt pot with oats and fruit to keep me going, rather than reaching for the sugar!

 

[keepswimming]

Hi @Rufous McKinney I'm sorry things have worsened so considerably the last three years. It sounds like you did well to work for as long as you did.

Working from home sounds amazing, but it's not possible with the work that I do. However I have just managed to arrange lifts to work, instead of walking, which took 15 minutes and obviously used up a lot of energy before I even started. I have been using the time I spent walking, to go back to bed for a rest before I leave. In a car it takes less than 5 minutes to get to work so at least I don't have a long commute.

The last two years I worked, I had federally protected sick leave that I could use when I needed to simply STOP now. That was really important. (otherwise, my employer required doctors notes and "permission" to be off sick. )

I recently had a back to work meeting with my employer and she has arranged something similar. She said if I have a crash, instead of trying to force myself to come in, I phone her and we will agree I have a couple of days off or something to recover. I think her saying that helps - before getting ill I was a person who always pushed through and hardly ever had time off. It's hard to change your mindset isn't it - but I know I need to.

 

[keepswimming]

Hi @RebeccaRe thanks for your reply.

The simplest answer, which is not always easy or possible, is to reduce your hours to the point where you feel like the work is manageable. If your body is telling you you're doing too much, it's important to listen to it. Or how do you think that redistributing your hours might work? Instead of working for 4 hours 3 days a week, does maybe working for 6 hours just 2 days a week sound better, or working 3 hours 4 days a week?

I have already reduced my hours significantly... Before getting ill I was doing 14 hours secular work along with a lot of voluntary work - both together would have amounted to full time. Now I'm doing 10 hours secular and very little of my volunteer work.

I agree that manageable is what I am looking for! I think since I have been having the breaks, if I am careful with everything else that I do, and take it easy for a couple of days afterwards, I can manage it... but if I am having a bad week it's another matter.

Redistribution probably would help me, but I'm not sure if I can make it work due to family responsibilities... my husband has a physical disability and some days he needs my help more than others, my work currently fits well around that... However it's something I will discuss with occupational therapy when I meet with them. I think on my two morning week (I alternate the third morning fortnightly) I may be able rearrange it so I have a day off in between, rather than do them both together. That would make one week a fortnight easier anyway...

Working from home sounds amazing, but it's not an option with my line of work unfortunately... I'm glad it is something you have been able to arrange, it must really help you.

I wonder if there are changes that could be made to your workspace that could allow you to put your feet up, or even recline? I'm glad that your employer is consulting with OT, and is so supportive of you! I hope that you can find some strategies that allow you to continue to work as much as your body allows.

I could probably arrange things so I can sit down more and walk around less... Good suggestion, hopefully that is something I can discuss with Occupational Therapy when they come.

Thanks so much for your reply

 

[BeADocToGoTo1]

Thanks for your reply @BeADocToGoTo1 . This sounds similar to what I'm doing for my break mid morning. I have a quiet room to lie in, a cushion and I listen to some relaxing music to help me rest. I found it really upsetting that I had to do this to start with - but my colleagues are all supportive and I've realised how much it helps me.

I am trying to eat a good balanced diet too - resisting the staff biscuits can be a challenge, but I make sure I always take a healthy yoghurt pot with oats and fruit to keep me going, rather than reaching for the sugar!

It is mentally a big hit to accept the new normal, but I am glad to hear that you have support from your colleagues.

Just a little side note regarding the snack you mentioned. Of course it is much better than an office donut or bagel, but to your body oats and fruit are sugar and will spike your insulin. Yoghurt can be good so long as it is plain, full fat with live cultures and no added sugars, fruit or flavors. But keep in mind that lactose is also sugar. A piece of whole fruit is good, but if it is processed it is not much better than candy. Glucose spikes can cause big energy dips not too long after.

 

[keepswimming]

Just a little side note regarding the snack you mentioned. Of course it is much better than an office donut or bagle, but to your body oats and fruit are sugar and will spike your insulin. Yoghurt can be good so long as it is plain, full fat with live cultures and no added sugars, fruit or flavors. But keep in mind that lactose is also sugar. A piece of whole fruit is good, but if it is processed it is not much better than candy. Glucose spikes can cause big energy dips not too long after.

That's an interesting point, thank you. Yes I'm talking about plain yoghurt and whole fruit, but I had no idea that oats could spike insulin, and I'd not considered your point about lactose. It sounds like diet and glucose spikes are something I need to look into in more detail... Thank you for pointing it out to me.

 

[Rufous McKinney]

She said if I have a crash, instead of trying to force myself to come in, I phone her and we will agree I have a couple of days off or something to recover.

My employer technically required that you call and tell them your sick. But I have ME. The collapse, and crash include- being in a coma. And your ill and the last thing you want to do is speak to anyone at 7 am. And if I am ill, I'm supposed to be sleeping, not making stressful phone calls..

Next, if sick for more than one day, they required doctors notes. Actually, I never produced one for 30 years, then a manager changes and they demand doctor notes. So if your sick for four days, you need a doctor note by day 2. the problem- 1) I don't go to the doctor when I'm sick; 2) nothing I get can be treated by a doctor.

So then meanwhile I had earned 750 hours of sick leave over about 25 years. So this federal program allows you to Utilize your earned sick leave..you get doctors notes, describe things, but then ultimately, you have some protection for both the privacy issue (I never had to disclose what exactly I was sick with) (due to these privacy rights).

There is also a federal thing that involves Reasonable Accomodation...you might look into that.

 

[Rufous McKinney]

That's an interesting point, thank you. Yes I'm talking about plain yoghurt and whole fruit, but I had no idea that oats could spike insulin, and I'd not considered your point about lactose. It sounds like diet and glucose spikes are something I need to look into in more detail... Thank you for pointing it out to me.

While I can tolerate eating oats occassionally, oat meal as breakfast leaves me literally starving 1/2 an hour later. So its not good for my lousy blood sugar somehow. I'm not putting sugar or sweeteners in it. Its just too carby. Seem to need more solid protein.

My doctor doesn't want me eating plain yogurt even, due to that lactose. Dang. I mostly don't.

 

[keepswimming]

My employer technically required that you call and tell them your sick. But I have ME. The collapse, and crash include- being in a coma. And your ill and the last thing you want to do is speak to anyone at 7 am. And if I am ill, I'm supposed to be sleeping, not making stressful phone calls..

Next, if sick for more than one day, they required doctors notes. Actually, I never produced one for 30 years, then a manager changes and they demand doctor notes. So if your sick for four days, you need a doctor note by day 2. the problem- 1) I don't go to the doctor when I'm sick; 2) nothing I get can be treated by a doctor.

Oh no, how stressful! As you say, that's the last thing you need when you are having a crash. I'm in the UK so obviously it's different laws here, however I do know CFS is covered by the Disability Act so that's probably something I need to look into. My employer allows a week off before you need a doctors note so that's one good thing.

While I can tolerate eating oats occassionally, oat meal as breakfast leaves me literally starving 1/2 an hour later. So its not good for my lousy blood sugar somehow. I'm not putting sugar or sweeteners in it. Its just too carby. Seem to need more solid protein.

My doctor doesn't want me eating plain yogurt even, due to that lactose. Dang. I mostly don't.

Healthy eating is so confusing! You think you're eating the right things and then you find out otherwise... I guess foods affect everyone differently so some of it is trial and error too... I definitely need to do more research!

 

[BeADocToGoTo1]

...
Healthy eating is so confusing! You think you're eating the right things and then you find out otherwise... I guess foods affect everyone differently so some of it is trial and error too... I definitely need to do more research!

Indeed! I had to learn the hard way even when I thought I was always eating healthily. In case it is of interest, there is a bunch of info on this thread:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

 

[Seven7]

I'm still adapting to having CFS and I would be interesting to hear from others who are managing to work. What are your coping mechanisms and how do you recover afterwards? Any suggestions on making it more manageable?

I have a recliner in my office and I can work from home (I work w computers).
My job is not very labor intensive (but it is mentally hard). My saving grace was the Orthostatic intolerance meds. I think I was able to stay at work thanks to it.