how do you keep your home/food together without much help?

Discussion in 'Fibromyalgia Main Forum' started by Chilene, Jun 3, 2008.

  1. Chilene

    Chilene New Member

    well, you never know what you have til it's gone, for sure.

    i WAS happy when my city allowed me (through SSDI) to have an assistant 4 hours a week (four dollars/week) for housekeeping. then they cut it to 3 hours a week. (she mostly does laundry, i change like twice a day (sweat alot) and have tons of wash. plus, i'm severely allergic to dryer sheets and other peoples detergent and i live in an old apartment building with TWO washers and dryers for the entire building. if the three flights of stairs up and down don't wipe me out, the scrubbing out of machines will. SO... i've managed to get by with laundry with her help. she cleans the bathroom here and there, but i end up having to do most other cleaning.

    getting groceries (and street parking, no driveway) with my herniated discs and stairs and fatigue is a HUGE pain in the butt. here and there my sister can pick up something for me, but it's tough. and forget cooking. that really makes me sad, that i'm too tired to make healthy meals.

    today, i learn the city is cutting my assistance down to 3 hours every other week!... i'm trying not to panic.

    my mother lives in another state and we don't get on so well, anyway. i'm single. (43). and i have no friends available to help (married, too busy, blah, blah).

    if i pace myself, i think i can handle it all (before any assistance, my place was generally a big wreck). i'm trying not to panic.

    what does one do for help in these situations? i can't afford a housekeeper or grocery delivery.

    any thoughts?

  2. TeaBisqit

    TeaBisqit Member

    I'm in the same type of situation. On my own, no help. I don't know how much longer I can go without help. I'm really not doing well physically. What I do is set aside a morning for the laundry. But it usually flares me up badly. The building's laundry room is a mecca for flares. Vacuuming is like maybe once a month for me. Grocery shopping is once to twice a month. Usually twice. I stock up on anything I can because I know I can't go out much. I'm thinking of trying for Meals on Wheels. If I can't get out, that might be a way to go. It's just plain scary that we're stuck like this.

    My building only has about four or five laundry machines for sixty seven families. It's crazy. I've found that if I run down right when the room opens in the morning, I can get empty machines. Or if I do it later around five pm. Otherwise they fill right up.
  3. pasara

    pasara New Member


    You may want to look into grocery delivery. Some cities have independent services, or the store where you shop might offer this service. this of course has a cost, but may be worth it.

    Also, if you are involved with a temple or synagogue, I would talk to the rabbi there and ask if there might be someone in the congregation willing to help you on a volunteer basis. A lot of congregations have these types of services for elderly and disabled members especially. You could offer to do some other kind of volunteer work for the temple in exchange, such as preparing mailings, etc.

    Another thought after reading your profile, when you talk to the rabbi, see if there might be any attractive single men that might be interested in helping you. heh heh...

    Hugs from pasara
    [This Message was Edited on 06/04/2008]
  4. frosty77

    frosty77 New Member

    It's tricky. I'm married, but my spouse works most nights and is gone most weekends so basically I'm alone. I also work full time so my time is limited.

    I try to do one major thing a night. One night is laundry night, the next night might be floor washing night, the next might be grocery shopping (I also have herniated disks and back problems so I try to bring all the grocery bags in the house in one trip which is stupid. I recently saw in a magazine, forget which one, a handle you can hang grocery bags from so you don't strain your back)....the trick is to pace yourself as best you can or in the time frames you have.

    Cooking is a problem as I have to do this nightly - but I try to cook simple things - like something you just pop in the oven (chicken breast or ham) or something like spaghetti - anything that does not involve lots of chopping of things or many steps.

    And, yes, lots of grocery stores deliver. Some have online service where you order online and it's delivered.
  5. Debra49659

    Debra49659 New Member

    If your apartment is a two bedroom...perhaps you could run an add for a live in campanion and give them room and board. I see adds like that all the time. As for cooking, crock pots are a wonderful help...throw simple ingredience in them in the morning and by night you have a good dinner and maybe leftovers:) I like the recipes were I throw in the meat, veggies and potatoes all in the pot together!!

    As for the what you can, or ask the parents of kids in your building if their kids might like a make a couple of bucks by running a vacuum, or doing the dishes. Most of the time kids work cheap!! And they appreciate the extra money.

    Use paper plates...less dishes:)

    Contact all local agencies for assistance, not just the state operated ones.

    Hope some of those help....please take care of yourself

  6. simpsons

    simpsons Member

    i just often don't cope, i'velaid in flat for days at a time with no electricity and food cause i've been too weak to get up and walk to get it. the place ended up a tip too weak to push vacumm. dizzy to bend down pick things up too weak to stand and cook anything. concentration so bad i would forget i put any food on and burn the pan mostly just caught on time. but near misses like that make me very frightened to cook.

    i had to go stay with friends which is not easy as i'm not well enough to be chatting much and who wants someone long term who can't tollerate music or too much noise at time no noise at all. so thatst he only way i've coped or not really coped

    can you get supermarket to deliver?
    local church do have local ladies who could deliver in your area perhaps?

    the getting a companion sounds great idea tho you would have to be careful when you are vunerable this is i've found when some people take advantage. so asking local church or perhaps nurse college

    all the best of luck
  7. mezombie

    mezombie Member

    I'm sure you'd qualify.

    I used MOW for years. It really helped. At least one thing was taken care of! Volunteers deliver a hot meal as well as a cold lunch/supper. The cost is subsidized.

    Maybe the source that put you in touch with the assistant can give you a local resource tel. no.?

    The website for Meals on Wheels in You can find a local source through it, as well as more information.

    Hang in there![This Message was Edited on 06/04/2008]
  8. Chilene

    Chilene New Member


    funny how it helps just to know that i'm not the only one having to deal with this!... that, plus your words, are encouraging to me.

    sorry to hear that you're in a similar boat.

    but, as they say, there is strength in numbers (even if it's just each of us sending encouraging emails and sending hope)!

    thanks much for your response.

    blessings and fibrohugs to you;)!

  9. Lichu3

    Lichu3 New Member

    This might be cost prohibitive but, in many cities, some dry cleaning places will pick up, do laundry, and drop it off at your place.

    Another thought might be to back off on the laundry and just accept that things may not be as clean or comfortable as you want them to be.

    My family helps me with laundry but since I don't go out much (or sweat), once-twice a month is enough. Small items (socks and underwear) go with me into the tub sometimes and get a soaking/ rinse. To dry something indoors, hang it over the tub or use one of those wooden/plastic racks; hairdryers can also be useful to speed drying.

    (Once spent extended period in an undeveloped country where I did laundry by hand; had to learn quickly how to efficiently use and launder clothes.)

    Food is important to me so if I were in your position, I would use the helper's time to get good food and ease off on cleanliness.
  10. nina_and_me

    nina_and_me New Member

    I'm so sorry, Helene. It sounds like you really need that assistant. Is there an appeals process to get your help back?

    My house was a wreck - a total disaster until a friend hired two women from her church to clean it - that was two and a half years ago. I resisted because I was so embarassed about the way it looked. It took those women two days to transform my house into a beautiful sanctuary. One of the women continued to come in once a month to do the major cleaning.

    I'm moving into a smaller place next month, and one of the ladies from the church is going to continue to come over and clean once a month free of charge. A lot of people at that church volunteer to help those in need.

    Groceries are also a challenge for me. I've been living with my mom for two months, and she's seen this firsthand. When we return from a shopping trip, I take a cool shower, get into my pajamas, and I don't come out of my room for anything except food or to shower for three days.

    When I lived on my own, there was a small grocery store less than a mile from my house, and they delivered free of charge. I told them I was ill, and they sent someone to deliver groceries. These weren't big orders - things like milk, juice, crackers, mashed potatoes, cereal. It kept me going until I could leave the house on my own. Not only is it difficult for me to shop because of physical limitations, but I have phobias about driving and leaving the house. Is it possible that there's a store nearby that might deliver free of charge?

    I also had a friend who would pick things up for me on her days off (4-5 days a week). I was really blessed.

    Is there a laundry service in your area that might be affordable? I've considered looking into this myself, because laundry is one of the most difficult tasks I do. I can't imagine having to scrub the wash basin before even starting the laundry. You have a lot of extra work to do, and you really need this help. Is there anything someone at social security can do?

    I'll be thinking of you, and I'm sending a prayer up for you.

  11. Chilene

    Chilene New Member

    hi pasara!--

    a rabbi;). now there's an idea; funny, i forget about connections like that (one reason i LOVE this board and everyone that responds!). i'm not a member of any specific congreation, but i've been to different ones over the years, and that might be a very good idea (in fact, i almost took a part-time job doing synagogue work and should look into that again, so thanks for these ideas)!

    (yeah, and a nice delivery guy wouldn't hurt!)

    i know that our local Dominicks (grocery) delivers... but they just don't have the real healthy food that i eat on the delivery chart, plus, i can't afford the extra 15 dollars for delivery, but i'll keep it in mind if necessary. Whole Foods doesn't deliver to my area.

    (btw... i quickly took a look at your listed website and LOVE it!... beautiful art you do, and i love the poems there. prompted me to add my photo site to my profile here.)

    big fibrohugs, and nice to meet you!;)

    [This Message was Edited on 06/04/2008]
  12. Chilene

    Chilene New Member


    thanks for your response.

    i totally relate to the carrying groceries issues in that i just want to get those bags inside! i always have the baggers pack things lightly, but even then sometimes they are too heavy and i end up taking things out and making a lot of trips from my car--which is a pain when it's around the corner. sometimes i just carry the bags the way they were packed (knowing they are too heavy)... and pay for it later. i'm stubborn and think it will be different each time!).

    Being a vegetarian/sometimes vegan and trying to get healthy through eating better (including raw foods)... is what i want and TRY to do, but that in NO way is easy food preparation. i still end up popping a frozen veggie dinner in the oven or spend far too much money on a healthy restaurant (picking up). but i refuse to eat a basic diet of processed foods, because the unprocessed foods are some of the only things that helps me feel a tiny bit better (i can't take meds; allergic to every last one; don't get me started; even herbs, etc.).

    i'm sorry you deal with all this, too. but again, it's relieving to know there are others that get through, somehow.

    fibrohugs to you;)

  13. Chilene

    Chilene New Member

    hi deb--

    thank you for your words;). i just may one day have to move in with someone else, but with all my health stuff--so sound and smell-sensitive-- and having lived alone for 18 years... i'm so set in my ways. i have a very small one bedroom apartment, and am not too ready to have someone in my front room;)... but thank you for that reminder, if i need to, it's an option!

    the crock pot idea is one i didn't think of. never had one. (never cooked much when i was healthy!)... but that's a great idea; thanks.

    it's Chicago, and believe it or not, there are almost no kids in my small apartment building, but maybe in the houses nearby. a good thought!

    i really appreciate your response! you take care, too.


  14. Chilene

    Chilene New Member


    i'm sorry to hear that you've had to struggle so much, too!... yes, i've burned up the pan so many times, it's scary, isn't it?

    yes, and the noise factor is tough with friends. took a road trip with a friend last year (a major thing for me), and he said he didn't have much fun because he couldn't blast the radio in the car or watch tv at 12am because of me. and all my other high maintenance stuff (i also had a fever half that trip). this is so hard to hear from people. we don't choose this stuff.

    thanks, too for the thought about nursing colleges maybe having someone/something!;)

    blessings and fibrohugs to you!;)
  15. Chilene

    Chilene New Member

    nice to "meet" you, and thank you for your thoughts (and good resources on your profile as well).

    in Chicago, a few years ago, my home assistance used to be provided by a division that got it's funding cut but for severe cases. i was not "borderline nursing home" (not so sure, in MY opinion;) )so they cut me from that division. in that program, i was granted 12 hours (!) of weekly assistance AND Meals on Wheels. (an aside, maybe i'm a pain, but the Meals on Wheels cold food would be left at my door no longer cold, and i was afraid to eat the dairy, etc. plus, it was tough for them to serve a vegetarian). i was nervous to eat much of that food, though i was grateful for it.

    either way, i no longer even qualify for Meals on Wheels in Chicago!... i'm getting really mad just thinking about this! maybe it's tougher in a big city?

    fibrohugs to you;)--

  16. Chilene

    Chilene New Member

    hi lichu3, and thank you for you thoughts!

    actually, about half my laundry IS what i consider hand wash and my wonderful assistant usually does some of this each week for me in the sink (i get so tired when i've tried to wring it all out myself). plus i hang a few delicate (washer) loads up after wash each time on my drying rack and from the shower on hangers (or she does, lately!)... hehe... guess you can see that i'm still a bit of a diva; always was more interested in dressing right than cooking. spose it's time i rethought those priorities!... thank you for that insight, truly!;)

    truth be told, when i was healthy, i did laundry about every three weeks (always had to go to laundramat, but still). i just got spoiled having clean laundry lately!

    fibrohugs to you!;)-

  17. Chilene

    Chilene New Member


    so many great things that you said but i am too tired to respond to them tonight. promise i will get back on it! hopefully tomorrow.

    many fibrohugs to you!!!
  18. Chilene

    Chilene New Member

    it's all set up so that you can't fight the city; they will cut funds where they can. i get things like "oh, lots of people got their hours cut". oh, you weren't calling for a temporary (had no idea i was supposed to!). and "maybe they'll change it back".

    one person says another is responsible for change. i was given a name, but have been in too much pain to "fight".
    i may, if things get really bad.

    turns out, it's actually a little less energy expended each week when my assistant does not come. to not have to sort four loads of laundry and not have to put away (fold, hang,etc.) a room full of stuff my assistant hangs to dry each week (she's "not allowed to sort"!). let's me move on to other things. true, there are clean and dirty clothes piled halfway up my wall in one part of my room, but darn if it's less energy so far.

    i've never attended any places of worship that have such wonderful volunteers, but i spose it could be a place i don't belong to, so thanks for that idea!

    no grocery store in Chicago will deliver for under 15 dollars that i know of (again, i shop mainly Whole Foods, which does not deliver here, but even Jewel/Dominicks are 15 dollars i think).

    anyhow, nina, thanks for all your wonderful ideas!... this board is great!