Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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How do I know if I am capable of working ?

Discussion in 'Finances, Work, and Disability' started by Dechi, Mar 7, 2017.

  1. Dechi

    Dechi Senior Member

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    For those who went back to work, how did you know you were up to it ?

    I have been on disability for almost 2 years. I mostly stay home and rest, except when I have medical appointments. I can go out and go grocery shopping a few times a week. I have a specific exercise program that I adapted and I do 8-10 minutes of exercise per week, with lots of rest in between sets (it takes me 45 minutes to exercise 4 minutes). In the summer I can walk for 30-50 minutes 3-4 times a week or bike 1-2 times a week at monitored speed (sometimes I get worse from it). At least last summer I did. Maybe once a month I go out for lunch with a friend.

    I can read and write. I can work on the computer for a few hours every other day. I have mild/moderate symptoms and have insomnia for 2-3 hours per night between 2-4 times a week. I need to sleep in the afternoon maybe twice a week, sometimes not. If I am not careful, or if I have hard medical tests, I will crash and get worse for many days, usually 3-5 but up to 12.

    Lately I have noticed I started having brain fog and memory problems, which I didn't really feel before. My psychologist has noticed it too and I was just tested by a neuropsychologist who said there is no way I could manage the job I had before (I was working as a business analyst with lots of responsabilities and stress). I will get a full report in a few weeks and know about my cognitive problems in detail. I know in some areas I am above average but some other areas are really problematic. Because of that I have a feeling I am getting worse, not better.

    I have been thinking about it for months, it's on my mind 24/7 : should I try going back to work or am I fooling myself, there is no way I can handle a day of being active for 10-12 hours ?

    What impressions do you get from reading my story ? Should I try ?

    Working part-time is not really an option because I will lose my disability payments and won't be making enough money to live on.
     
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  2. *GG*

    *GG* senior member

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    My impression is that you are not Healthy enough to go back to work Full time and be gainfully employed. If you are not being forced into this, then I would not do it!

    How does the system in Canada work? Is the 2 year mark some kind of limit? Is this a Gov't arena or are you also talking about Private disability insurance?

    GG
     
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  3. suseq

    suseq

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    I can empathise with your uncertainty as to what to do, and I think the question you need to answer is whether you could sustain any activity reliably or repeatedly without causing a deterioration in your health. From what you say this sadly seems unlikely and I hope you will trust in your own instincts as to what you are capable of, and be kind to yourself. Take care. x
     
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  4. Skippa

    Skippa Anti-BS

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    For each hour of work, I imagine you'd have to drop some of the other activity you mention.

    And since you're doing "brain work" (eg non active) your fitness gains would suffer (not to mention brain work can be even more taxing than, say, light walking).

    Why not attempt to find some volunteer work that needs a limited amount of hours per week (up to 12?) and see how that goes? If you suffer, you can politely quit...

    Or start an educational course for self improvement (preferably free or cheap) and see if the commitment affects your quality of life?

    Oh, but to me, based on what you said you can do, I don't think you're particularly useful to anyone... imho

    ETA: that last sentence might not read the way it's intended! I meant you'll blow out and be back to square one or something...
     
    Last edited: Mar 8, 2017
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  5. Hugo

    Hugo Senior Member

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    Definitly part-time in some form but full time sounds hard. Since that will mean loosing your disablity payments that would be a to big risk for you. You may get worse and have to end the part-time job.
     
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  6. Tyto alba

    Tyto alba

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    Have you noticed any link between your insomnia and what you've been doing that day/previous day? i.e. Activity type and intensity?
     
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  7. purrsian

    purrsian Senior Member

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    Perhaps try doing more activities and see how you go. If you can spend more of your day doing things (physically or mentally) then maybe you are close to ready. But it sounds like you will suffer if you try to fit more in. If you can't currently increase your abilities to do more (with the flexibility of not having to do it) then you maybe shouldn't try committing to a job, pushing yourself beyond your limits to keep up, and then harming yourself more.

    Whenever I'm doing well and trying to work towards being able to work, I try increasing my chores at home. If I can consistently do more things more often, then wonderful. If I then started working, I could decrease the chores back to the original level and use the spare energy for the job. I think using something like that as a temporary stamina builder/tester can be really helpful to know where you're at. But be prepared to drop the extra activity if you do get a job. The whole point is that it's a temporary increase to ensure that you can maintain that activity level. You don't want to increase upon the increase and overdo it completely!
     
  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Hi @Dechi

    I am at a similar junction to you. I also manage to do a 20 min walk per day but don't do any aerobic exercise. I was up until November working full time. I would say that the type of job is important for me and how far away it is to travel. My journey time in the car is 45 min each way on top of an 8 hr day with lunch break. I struggled to do anything but work and sacrificed my weekends and evenings to do this. I was then easily toppled by sudden increases in workload that normally I would be able to cope with.

    Now I'm being made redundant, so like you I am thinking about what sort of work I can do. I would say I can manage a desk job providing there is variety of types of work that allow me to alternate tasks. I would prefer something very local with a sympathetic employer who will allow me to work from home 2 days a week and maybe work flexible hours. The thing I struggled with the most was the long get up time. It takes me 1-2 hrs to come to in the morning and thus delays my start time. This brings out the worst in colleagues who immediately cry "lazy" and "unfair". I've had a horrible time at work since I've been ill and it's mainly due to people being foul and discriminatory. I would consider the stigma aspect of any return to work and the challenges this poses. Do you feel strong enough to put yourself through this on top of everything else?

    I'm considering retraining, setting up my own business or working short term contracts. I don't know about Canada but employers here in the uk are not very sympathetic and part timers are normally easy prey for "restructures" so the jobs don't seem to last very long.

    I'm sure you are a useful and have a lot to give and if you are able you should try and find something that is flexible around you..... but only you can know your real limitations. just make sure the b*****ds don't end up grinding you down.
     
  9. slysaint

    slysaint Senior Member

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    If you were in the UK they would definitely FORCE you to go back to work.
    But just think about how much you USED to do when you were well. Probably all that you are doing now, plus working full-time and more.
    The thing that a lot of people (who don't have ME) don't understand is that it is always an either or situation. IE if I do this then I won't be able to do that. Could you do everything you do now AND be able to do more?
    Another issue would be reliability and as someone else said sustainability. Most employers would expect work consistency and there would invariably be deadlines or targets of some kind. Would you be able to meet them without impacting on your health?
    I have had the same thoughts from time to time when I have felt a bit better; but then I have to be realistic.
     
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  10. Dechi

    Dechi Senior Member

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    @*GG* I am talking about private insurance and yes, there is a 2 year long term disability mark after which it is harder to keep your disability insurance.

    .

    @suseq Thank you. Unfortunately I think you are right. Everytime I do more I regress or crash, at this point.

    @Skippa Ha Ha ! Don't worry, I understood your intention. I like the idea of volunteer work a lot. I will look into it. I am already doing free work from home but it's very uneven and doesn't require a lot of my time. What you're saying about losing physical gains is true, I hadn't thought of it.

    Funny you mention it, I started a free online class a few weeks ago. I am doing it at my own pace, a few hours a week.

    @johmil Thank you.

    @Alba, yes I have. Whenever I do too much, either physically or with my brain, or I have stress, I will then have insomnia for a few days. And once it sets in again, It's harder to get rid of.

    @purrsian Good advice, thank you.

    @arewenearlythereyet Thank you. I have never worked part-time except as a student, so I have no idea. But I don't see how I could make enough money part-time anyway, so I don't even consider it an option, unless it's volunteer work to test my capacities.

    I am like you, I have to commute 1 1/2 hour morning and night, total 3 hours a day. 3 hours and I haven't done anything yet. If I go back to work, I will have to find somewhere closer to work to live, and bring the commute time down to 1 hour or less.

    @slysaint They are trying to force me. They have been from the beginning, but I am fighting back. To answer your question, I am already struggling with what little I am doing, which means I don't see how I could get through a day's work. About deadlines, I would meet them, that's how I am, but this would be detrimental to my health and I suppose I would crash rapidly from it.

    Before I was ill, I was working 50+ hours a week, Up at 6 am and back home around 7 pm. I was training 7-10 hours a week. No way in hell I could do this now !


    Thanks everyone, your answers are very insightful and helpful. You make me realize I probably have unrealistic expectations about my abilities to go back to work.

    I am so full of guilt for being home and not working I think this is a big part of it. I haven't accepted all the losses that come with this illness. There are so many, and important ones too.
     
  11. slysaint

    slysaint Senior Member

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    Join the club;)
    The first (ie fighting) is stressful, and exhausting and can almost be 'a job' in itself, but when you have no choice.......
    It is hardly surprising that a lot of us get worse in these situations.
    The second is also a big problem; particularly when you almost feel guilty for being able to occasionally do something that you might enjoy even when you know the effort it has cost you. The worst thing is when people see you and tell you how well you look.
    But then you know all this.
    I would say for the time being forget about what you used to do, and that the main thing is to try not to do anything that will make you worse. Then try and figure out what makes you feel happy (allbeit temporarily) and try and stick to those activities.
    then of course there's Phoenix Rising:)
     
  12. Tyto alba

    Tyto alba

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    That's my experience too. It's really quite awful; for me it's a fatigued fuzzy feeling but at the same time it feels like you've drunk several cups of caffeinated coffee (even though I haven't taken caffeine in any form for many years). What is particularly frustrating is when it 'sets in' even after you stop stressing yourself physically and mentally, and takes a lot of time and effort to readjust back to a decent sleep cycle.
     
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  13. Dechi

    Dechi Senior Member

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    @Tyto alba I think the terms " tired but wired " convey this feeling very well. That's how I feel too.
     
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  14. Tyto alba

    Tyto alba

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    Yes tired but wired.

    I know it's probably not much help because of the stresses of everyday life, and having experienced it regularly myself I can fully empathise, but if you can maybe try and find some way to slowly improve your sleep cycle you might feel a little better. I can barely function when I'm suffering with insomnia so I try my best to avoid it, and although with this illness everything is relative, if you can at least get a better and consistent several hours sleep at night you might feel a little better.
     
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  15. Wonko

    Wonko Senior Member

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    The other side.
    This is largely dependant on who you know and/or what your previous job was. For instance a US company (Blackrock) recently hired someone to be an "advisor" - 1 day a week pays £650,000 a year for work that could be done in bed on a PC from anywhere in the world, or during a light stroll on a golf course when/if your up to it. There are jobs out there that could suit some people with M.E. but unless you're in the old boys network they are largely unobtainable.

    Of course most work available to pwME is minimum wage and far too physical/stressful/taxing for pwME, based on what you've posted in your initial post I'd suggest this type of work is inadvisable/impossible for you at this time (even without an extremely damaging 3 hour a day commute).
     
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  16. Dechi

    Dechi Senior Member

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    My thoughts too. Moreover, I have been getting worse in the past months, so for now anything related to work is out of the question, unfortunately. :-(

    I was doubting very much my capacity before, now it's a given I can't work.
     
  17. Learner1

    Learner1 Forum Support Assistant

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    I just noticed this thread, so apologize for being late to the party.

    I am on long term disability with private insurance but have been working part time for about 18 months, which has ranged from 4-17 hours a week, split into small chunks.

    At the 2 year mark, they stepped up the push to figure out how well I function so they could put me back to work doing something so they could get rid of me. They don't really care what's the matter with me, they care about how I function.

    I am capable of doing many things, I just don't have much stamina, and after periods of physical, mental, or emotional effort, I pay. My cognitive function is slower, my short term memory is impacted, and working with spreadsheets or contracts is difficult - the info swims in front of my face much of the time and I have to be careful not to make a costly mistake.

    They want to know how I spend my time. Most of it is taking care of myself.

    I exercise every morning for 30-40 minutes for my mitochondria - stretching and resistance training and limited elliptical, punctuated by 3 5 minute naps. Once a week, I manage a 45-60 minute leisurely walk, with rests.

    I shop, prepare a whole food diet, and take over 100 capsules a day, which need to be sourced from stores, internet and pharmacies.

    I have 3-4 hour IV treatments twice a week at my naturopath for immune and mitochondrial support, and do hyperbaric oxygen therapy 4x a week. And sauna briefly every day.

    Naps are required through all of the above. I sleep 5-9 hours at night, and make up the rest of my 9-11 hours of daily rest during the day.

    Once I've done the above and am showered, dressed, and awake, I go into the office on non-IV days. On IV days, I work remotely for an hour or so on my computer.

    Sometimes I feel guilty for not doing more work. But doing all of the above is a full-time job..I'm slowly getting better with all of this, and pushing harder just sets me back.

    The key to being able to work is flexibility. Having a set of skills that's valued gets you a long way. Having a job that's easy is helpful - the expectations are lower and uts easier to perform. If I were looking for a new job, it'd have to be part time and non-stressful and non-strenuous. Contract work or something over the Internet.

    It's difficult.

    With private insurance, it's important how forms get filled out. The forms are rigged with small boxes not allowing adequate answers so they can conclude you're fine. They can have private investigators follow us and catch us doing something normal.

    It's important to assess the baseline if what you can commit to, and have your doctor and others document it, being clear that sustained standing, sitting, mental focus is impossible and that only what you can do is documented. I even had the gym trainer write a letter on my behalf, describing how I regularly sleep on the gym floor after 10 minutes of effort.

    The thing about going off disability is whether you can go back on if you can't work. My policy has a lengthy waiting period, so it's in my interest to be fully well before working over 30 hours a week.

    Best wishes in finding your answers.
     
  18. Dechi

    Dechi Senior Member

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    @Learner1 Thank you for this great info ! I am wondering, since you're working part-time, is your insurance paying you the difference so you still get the same revenue ? And if so how many hours are allowed to be considered part-time and still receive disability ? I know it's different from country to country but I am interested to know.
     
  19. Learner1

    Learner1 Forum Support Assistant

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    @Dechi
    I started on short term disability, which ran for 90 days, and was paid 100% of my hourly wage at 40 hours per week.

    Then I was switched to long term disability, and the insurance ensures I receive 60% of my base wage. My employer pays me as usual for however many hours I work, then I send my monthly pay stubs to the insurance company, who pays me the rest up to the 60%.

    Any bonuses, commissions, or extras are over and above the 60%. I still get performance evaluations and raises, though I don't get more money as the 60% is keyed off of my hourly rate when I became ill. And I pay taxes.

    So, if I work MORE than 24 hours a week with this deal, I lose. At this point, working over 20 is too hard, so this is working for now.

    They also are avidly interested in any other sources of income I might have, which they can claim. And they tried to force me to apply for SSDI, until I pointed out I'm making too much monthly with my part time work to qualify.
     
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  20. Dechi

    Dechi Senior Member

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    @Learner1 thank you ! I am glad that you have a fixed income and that you are still employed. More often than not, employers just find a way to to get rid of their disabled workers.
     

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