Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Help with daily living

Discussion in 'Lifestyle Management' started by CFSmesaAZ, May 21, 2015.

  1. CFSmesaAZ

    CFSmesaAZ

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    I have been "disabled" for the last 5 years, have had CFS for over 25 years. What are others doing to cope with daily living issues. I own my home and live alone. I am having a hard time with home maintenance, and other things you need to do when you own a home. I have delayed phase sleep syndrome, i go to bed about 2 am and fall asleep hours later. I usually get up between 5 and 7 pm. Is anyone using a service that provides help with meals, house work (around my sleep schedule) and other chores. I am sure can find someone to clean but they are not going to come at 9 pm to 1 am. I also need someone i can trust as i would mostly likely be asleep. I also need to eat better but with my condition i live on frozen foods. Any type of "treatment" put in bed for days at a time. If i could find some to take care of things i could try some treatments with out having to worry about the "house" .

    thanks
     
  2. Valentijn

    Valentijn Senior Member

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    You're only really awake for 7-9 hours per day? Have you had a sleep study or seen a sleep or ME specialist? If you're not actually able to fall asleep until mid-morning, it should be possible to stay out of bed longer and have work done in the mornings.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    I would be helpful probably to put what country you are in in case of anyone knowing some place which could help.

    I too have unusual sleep hours and this makes it very hard for me with the services I do get though currently my sleep issue isn't as bad as yours. Im "usually" up by 11am. My local library deliveries though, they only do them at 11am at the latest or before so often miss the man at my door who's come to pick up things and deliver me things like DVDs.

    My home support and shopping support services have to all be done before about 7pm, which is a nightmare for me in hot weather when it sometimes cools down later then this so I cant be taken out the house. I have a regular time though with those of 1pm (as otherwise workers are harder to get as many of my support agency workers have children so they don't work outside school hours).

    You may have to hire a private person to help you who can fit with those kind of hours if you can afford it. Im very very stuck with things currently due to not being able to get enough support or do my own maintence and daily living stuff and that has further damaged my health eg asthma attacks cause my house is too dusty etc

    Even now that Im nowhere near as bad as I was way back.. I still need to sleep 16-18hrs straight at times whenever Im crashing so that gives limited time to have people here at times.
     
    belize44 likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I don't know about that other but when I was like she sounds, if I stayed up longer when my body was finally ready for sleep, it meant I'd go into an extremely wired exhausted state with no possibility of sleep at all so would of meant I then wouldn't sleep till the day after.. (I was going up to 2-3 days without any sleep at all, if I missed one of my bodies sleep opportunities). I really had to go with what my body wanted to do to be able to get any sleep at all.
    .................

    I finally had my sleep issues sorted out but are now back into them due to just having to get up 1hr earlier a couple of times and hence disturbing what sleep routine I had. (normal people just cant understand stuff like this, they think we can just stay up a bit longer or get up a little earlier occassionally but it can really screw things up a lot worst).
     
  5. beaker

    beaker ME/cfs 1986

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    Her moniker has AZ on end so I assume she is in Arizona, USA

    ~~~~
    A couple places to contact to find help. You will still have to interview and get references, etc..
    I have made great use of our local Office for Aging. In NYS they are mandated for every county to have this office.
    They keep lists of aides (unveiled) to call. Will give out even if not senior.
    Also, many nursing home rehab centers (think post surgical/ortho /caridac) often keep such lists.
    And Independent Living Centers which are nation wide.
    If you have a Cancer Society local. They were of great help to me, even though I explained I did not have cancer.
    Groups like that often have lists.
    It may take many calls, but worth it in the end. Was for me !

    Good luck.
     
    catly, Sushi, belize44 and 2 others like this.
  6. CFSmesaAZ

    CFSmesaAZ

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    Thanks for the reply I have had a sleep study, it was "normal". I am exhausted after a very short time. If i get out of bed at say 5 pm, shower, eat then lay on couch. Maybe get up and do a load of laundry then back on couch. Lay on couch till i go to bed usually about 2-4 am. but i can't sleep, but to tired to stay on couch. If i dont get to bed then i may fall asleep on the couch and get woke up when people start going to work. I will fall asleep sometime between 6am and noon. I also have IBS which will wake me or make it impossible to sleep. I have been to every specialist you can think of. I also have fibromyalgia with is making it very hard to type this. I also have FL 1953 and possible chronic lyme disease and .... Is there a ME specialist in Phoenix AZ ? not that i have found.
     
  7. CFSmesaAZ

    CFSmesaAZ

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    thanks
     
    beaker likes this.
  8. CFSmesaAZ

    CFSmesaAZ

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    Maricopa County. I am really only functional for a couple hours a day, Most days i can not even drive. the farthest i drive is to the dr and this 10 miles.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    Nods, I understand how you feel. Im only really functional for 60-90 mins broken down time per day all up on my better days (though I can do easy sitting tasks things), while other days I can do no standing jobs at all. I cant drive at all. It's quite depressing not being able to do the housework and things.
     
  10. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    I'm in California. I no longer drive. If I can't get it online I don't.

    I don't worry about cleaning. It just doesn't matter that much to me. I do my laundry when I can and if I have a few good minutes I get out my cordless vacuum. Things just wait.

    I use Safeway for grocery delivery but most counties and cities have meals on wheels. Just google and you should come up with something.

    Also,I would contact your county to get an assessment. I did that. They have all sorts of recourses. Also call your city's senior center. They have lots of services that disabled can use and again, they may have some resources.

    The only thing you might have an issue with is cleaning. But I had cleaners for awhile. I was home but people have cleaners when they're not home. Make sure they are bonded and licensed.

    I got a lot of my information by Googling my city and then what I wanted. And call places you think may not know because they may know of a place that will.

    Here's a link I just found using Mesa arizona meals on wheels

    http://www.maricopa.gov/findhelpphx/Map.aspx?c=Elder Services&h=green
     
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  11. caledonia

    caledonia

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    Your sleep could be delayed for a couple of reasons:
    1. You're using the computer too late in the day. The computer emits blue light which tells your body to wake up when you should be sleeping. You need to eliminate blue light in the evening. That means don't use the computer in the evening. If you have any "daylight" bulbs turn those off. So to clarify - blue light means wake up, amber light means go to sleep (think daylight and sunset colors). It signals your body to make serotonin or melatonin.
    2. You have adrenal fatigue. There are various treatments for this.
    Working on both of these has helped my delayed sleep issues. Getting off the computer in the evening had the quickest and most dramatic effect.
     
    Gondwanaland likes this.
  12. CFSmesaAZ

    CFSmesaAZ

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    thanks, some days are very others just bad... i hope this goes away for good!!!
     
  13. CFSmesaAZ

    CFSmesaAZ

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    thanks but so far my doctors have said dont try to change the sleep wake cycle. one of them has CFS/FM and has a similar problem.
     
  14. caledonia

    caledonia

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    Right, don't bother trying to change it with alarms, blue light panels in the morning, or what not - you'll just make yourself more exhausted. I would also avoid pharmaceuticals, and supplements like melatonin are a waste of money.

    Believe me, I have had this very same intractable problem for well over a decade and have tried everything (except pharmaceuticals) - my problem was actually even worse because my sleep/wake cycle became a non-24 cycle. My cycle would advance up to an hour every day, and become reversed every month or so.

    I have years of sleep wake cycles that I charted - I would show these to every doctor I went to (even sleep doctors), and nobody had any clue as to why that was or how to fix it.

    Once I got off the computer in the evening, my cycle changed (all by itself with no other effort on my part) to a 24 hour cycle (still delayed, but at least somewhat more predictable).

    Then as my adrenals have improved, I have been able to naturally go to bed earlier and wake up earlier. Things are still not perfect as my adrenals are only 50% improved, but I am pretty sure that I will be able to get back to normal sleep some day.

    These address root causes, and that's why they work naturally to fix sleep issues.

    So as you can see, this is not the same as trying to use brute force to change it. I'm sure this is what your doctors are referring to when they say don't try to change the cycle.
     
  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I wouldn't be surprised if you could find someone to clean at 9 pm - maybe someone who wanted to work after her children were in bed. As mention above, people have cleaners come in while they are at work, so I don't see why you could not have someone come in while you were sleeping, other than that it might disturb your sleep.

    You might be able to get someone to come in and do a bunch of cooking, then leaves meals in your 'fridge and freezer.
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    A lot of people can cook things for you at their home. My helper did that. She would do it on her time and bring it over. I would tell her what I could have and she would prepare it at her home and drop it off. It was great because I wasn't really loving having someone around.

    I agree with Little Blue...lots of people will clean at 9 pm. I used to clean houses in college and I would do it after hours. Like for a dentist's office. People NEED to make money and there are other night owls out there.
     
    beaker, catly, Daffodil and 2 others like this.
  17. CFSmesaAZ

    CFSmesaAZ

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    thanks for the reply
     

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