Work for a living along with these DDs, or quality of life??

Discussion in 'Fibromyalgia Main Forum' started by SweetT, Mar 23, 2007.

  1. SweetT

    SweetT New Member

    Now I finally understand, after about 8 months on the board, how many of us have to make this choice. Of course, it doesn't apply to those of us whose bodies don't allow us to work outside of the home. But for us who can, we have to face that horrible choice:

    Do we drag to work and come home and have no energy for a social life or even for other life responsibilities (grocery-shopping; laundry; spending time with spouse and/or children)or do we just stop working and be able to spend our good days as we choose?

    Of course, for those of us with no spouse's income to fall back on, this is basically impossible.

    There are other things along with this. With these DDs and our taking time off, even when medically documented, our employers will never promote us (and deep inside, we wonder if our fibro fog will slow down long enough for us to enjoy and fulfill the duties of a promotion).

    I used to never understand how CFS and Fibro could lead to depression but now I do because it's happening to me. I'm trying very hard to find a mental health clinician, but it's difficult-------------seems as if everyone that my insurance will cover is not accepting new patients. I prefer an in-person group and found one last month, but it would've been an out of network with my insurance provider.

    I just don't know what to do. I have teens to support. I don't want them growing up in the poverty that I did. As soon as I think I'm doing a good job at work, I'll have a flare and have to miss alot of work. My attendance and even performance (especially my quantity of work) sucks big time. And whenever I have a burst of energy for work, I wind up having to deal with a walk-in client or some meeting or training. I need to be able to work case files uninterrupted. But they won't give me that accommodation. And when I decide to return phone calls for the last hour and a half of the day, that's when walk-ins come in. It's just horrible. I want to ask for a special medical transfer, but I don't want a demotion. Plus, I cannot figure out where I could go that wouldn't be as aggravating.

    It's getting to the point where everything takes my energy. My refrigerator freezer is empty, except for ice. My refrigerator is almost bare. I went without dinner for most of the week while I scraped up dinner for my daughters. I just didn't have the energy to go grocery-shopping. It was either go shopping or go to work. After missing the equivalent of 5 days already this month, I chose not to eat just so that I could make it to work and let my daughters get something. I just cannot handle grocery-shopping every week or even every two weeks. But with two teens, food goes fast.

    I just feel like I'm on my last leg before a nervous breakdown................. I'm sorry to sound so gloomy.
  2. Lichu3

    Lichu3 New Member

    The fact that you can't eat regularly b/c of shopping bothers me.

    I've discussed grocery shopping before with folks in another group I belong to.

    1. Is it possible to make a list, drive your teens to the store, and have them shop for you? A way for them to learn responsibility.

    2. Call around local stores and see if they deliver. If none do or are too expensive, ask them if they will gather the items for you and bring it to your car outside. You can pay them there and maybe throw in a dollar or two for the extra service. One person I know who cannot get out of the house much actually pays a taxidriver to pick up and deliver for him.

    3. I've call around and learn that many major grocery stores (Safeway, Whole Foods, Target, Trader Joe's, etc.) have scooters that you can use while shopping. This can help save energy.

  3. wanderingbluedragon

    wanderingbluedragon New Member

    You are preaching to the choir on this one. I feel exactly the same way. I am exhausted by the time I get home and my job cannot make accommodations, like less work hours for me. I am basically one of thier best workers and they have not given me too much greif about the many doctor's appointments or the days I have to take off because I've had trigger point injections and can't function for the rest of the day because I am in so much pain. My children have a hard time understanding that I am so sick when I used to be in good health. They ask me when I'm going to get better. I just tell them that I won't. I am truly depressed and frustrated. I work all day, sometimes it is a total struggle to stay awake for all that time, and then come home and have to deal with homework, dinner, laundry, dishes, etc. My DH helps, but I know that it has to be frustrating for him as well. I don't look sick, but I am. I am constantly having to force myself to do the most mundane every day tasks. I, like you, wonder if I should just quit working and try to keep up with things around the house. I can't see how we could afford to make it though. My husband does work, but everything is so expensive, I think we would lose a lot. I make him do the grocery shopping now and save that for my "good" days. It seems like those are few any more. I also know that if I did stay home, I would probably put on about 30 lbs and sleep constantly, which I have been told by my Dr. makes it worse. I excercise for 30 min on my tread mill as much as I can. My doc wants me to do it 6 days a week. I think not. I go to PT, get trigger point injections for my FMS, and take vitamins, and all the other stuff I am supposed to. You don't sound gloomy to me, just depressed. I want you to know that I am totally there with you and understand what you are going through. It's just a day at a time now. That alone is depressing. I've never had to put so much effort in to doing the day to day before in my life, now it seems a daunting task. We just have to lean on each other for support. Hope this leaves you feeling not so alone.
  4. SweetT

    SweetT New Member

    I did give my girls the last of my pocket change (besides lunch money for myself) to go to Convenient (a convenience store like 7-11) and get stuff for their lunch for the week (they take their lunch as I do not trust the school lunches). I did tell them that I would start dropping them off at a smaller grocery store and letting them do the shopping.

    What I might start doing is only doing major grocery shopping once a month. For bread and milk, which runs out weekly, I'll drop them off and have them get it.

    One smart thing that I did was not to push myself to go tonight after work, just because I was already out. 8 hours of work did me in enough. Even though the thought of not having to leave the house tomorrow is great, if I an wait until my body feels a little better to leave out and hurry up and get through the supermarket, that's better than pushing my body.
  5. SweetT

    SweetT New Member

  6. dononagin

    dononagin New Member

    I so understand.. I'm in the same boat at work right now... Not capable of doing the job I used to, not ready to throw in the towel... can't afford too.

    This is just exhausting isn't it?? It's like your juggling eggs and something is going to drop. Is it going to be home-life or work...

    I really, really understand what your going through.

    hugs
  7. teacher

    teacher New Member

    I am one that must work and parcel out my home chores as I can handle them. I live alone.

    I have found that grocery shopping is more managable if I paln to do it early on a Saturday morning. I have more energy in the morning. It's not crowded if you get in there early.

    When I say early, I mean get up just as if you were planning to go to work and head to the store instead. I'm there by 8:00 a.m.

    This allows me the freedom to get what I need while not feeling like I'm getting in anyone's way. The clerks are not as busy yet either.

    I shop for a month. Exhausting, yes, but then I only have to make short trips later for fresh fruits and vegetables.

    If you live in a house, get a stand alone freezer if you can afford one and have the space. Fill it with EVERYTHING! Meat, cheese, bread, butter, margarine, as well as your typical frozen foods. OJ in jugs freeze OK also. If it's not shelf stable, it goes in the freezer.

    Don't forget toiletries! Also, be sure to get whatever ready-to-eat food you need for the day. Why? Because I'm usually too tired to do anything else that day.

    Takes me a couple of days to put everything away, but then I'm set.

    Cooking is getting a little easier. When I have the energy to cook, I make too much on purpose. Then I have to put it in the freezer so I don't lose it. Saves a bit on the eating out when I'm too tired to cook.

    Example: When I make meatloaf, I cook the meat in cupcake tins. I have individual servings that can be tossed into the freezer for later meals.

    Mashed potatoes can be frozen also. Cupcake tins again or freezer baggies that have had all the air squeezed out so they can lie flat.

    Bake two chickens instead of one. The oven is on already. Freeze it for later.

    I hope these tips help some.

    Anita

    P.S. I just thought. You say you have teens. Do they help you cook? I know some cookbooks make things too hard, but there are lots of books out now that are geared toward children cooking. I have a few myself! LOL

    Also, try looking for recipies that only require a few ingredients. I know there's a series of cookbooks out that are easy. 1st book uses 3 ingredients, 2nd book uses 4 ingredients, last book uses 5 ingredients. Very easy.

    Check in your library before you buy.

    Hugs



  8. SweetT

    SweetT New Member

    Yes, the girls do help out alot. In the summer, when they have no school, they wind up doing all of the cooking. They learned to cook at a young age. I taught them even before my diagnosis (I just knew something was wrong with me and I could feel my body breaking down). I just hate to have them cook on school nights. And they do their own laundry and mine sometimes also.

    My biggest challenge is keeping food in the home, for weekends, dinners, and their lunches. I have so many special things to get (wheat free/gluten free/dairy free) that I have to teach them how to pick them out without spending a small fortune. I do see that amazon.com has a nice selection of wheat-free/gluten-free food, plus other things like soap in bulk, so I might get a shipment from them just to stock up on nonperishables.

    I'm in a condo-style apartment. I guess I could fit a small freezer in my kitchen.

    I'm trying my best to get to the point where I do once a month shopping, with only 2 more trips for perishables like milk, bread, and fresh fruits and vegetables. And yes, I like the early Saturday morning idea. I'm usually just so tired from the week. But I can always get a nap once I get home.

    Thanks again.
  9. SweetT

    SweetT New Member

  10. GoldensRule

    GoldensRule New Member

    Dear SweetT,

    I have worked for the last 20 years with the same employer. I was diagnosed with fibromyalgia right after I started working. My employer has been wonderful so I have been very lucky. I recently took a six month sick leave because my fibromyalgia got so bad that I couldn't work.

    I often take days off without pay. In Michigan, there is something called the Family Medical Leave Act (?) which allows you to take up to 12 weeks off without pay and your employer has to hold your position. Your doctor has to fill out the paperwork. You should be able to get it from your HR department. This has made my life easier because I can take time off in excess of my sick time. Also, Fibromyalgi is a disability and your employer is required to make your workstation accomodate your disability. I have a special chair, phone headset, special keyboard. The phone headset is a big help. The constant bending of my neck to hold the phone while typing was causing me a ton of pain. It is still very difficult for me to go to work because of the exhaustion and pain. I want to try and hang in there as long as possible because I carry all of our health insurance benefits.

    My supervisor also allows me to make up my missed time by working on the weekends at home. Is this an option for you? She also will let me make up my missed time by working later on days when I feel good.

    I also have given up on having "the perfectly clean house". When I go grocery shopping, I try to buy enough food to last a few weeks. Than my hubby picks up things during the week for me.

    I give so much credit to women who have children and are dealing with this disease. Sometimes, I barely have the strength to take my dog for a walk.

    Good luck!

    GoldensRule
  11. SweetT

    SweetT New Member

    bump, once more.

    i've been trying to catch those of us that have to struggle to work at offices outside of the home.
  12. raspberrykisses

    raspberrykisses New Member

    I feel for you hun. I am working. It takes every bit of my energy to work and I have a little guy that's going to be turning 20 months on the 5th. It's hard. I do some of my shopping after work but my legs are getting to were they keep trying to give out on me by the time I get off work. I've wondered if it would be possible for me to shorten my day a couple of hours. I know we need the money but I think if I could work six hours instead of 8 it would be a bit easier. The only problem with this idea is there is so much work to do I don't think it's possible and if I change possitions I have a good chance of having to take a lower paying job or having to work different hours which I don't think my body could handle at all. I remember how tired that made me when I was pregnant I don't think I could do it now. I think taking the kids and like someoone else said you use a motorized cart to help you save some of your energy. I know shopping can be a pain but sometimes it's nice to get out of the house for something other than work.
    Oh and going without food is not going to help your energy level hun. Please try to take care of yourself.
  13. richvank

    richvank New Member

    Hi, all.

    I can only imagine what it must be like to have to face this type of situation.

    Is there a good way to get out of this dilemma?

    Several of you report having FM. I don't know if the GD-MCB treatment will work for pure FM or not. If you have CFS, I think there is a good chance that it will help you. Check the threads that have methylation in their title to see what this is all about.

    By the way, I'm not selling anything. The cost to do this is about $2.50 per day if you don't include the most expensive supplement, which is optional. If you do, it's about $6.00 per day. And this is not intended to be forever. It's aimed at curing CFS. I'm serious.

    Rich