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Organizing With Chronic Illness?

Posted by susanp (My Page) on
Wed, Sep 19, 12 at 16:25

It has been many years since I was on here, and just about forgot I use to be a member. I am so glad to be here again, and could use help. I have been retired for 2 years now since dealing with Lupus,Sjogren's,Fibromyalgia,and other issues. While going through the past years of finding out what was wrong with me, having to give up my career, and the death of my mother, my house is a disaster. Overall it's not to the stage of hoarders yet. hehe...One room may qualify. hehe..Actually, I am not a hoarder, because I could easily throw out anything in my way, and not give it a second thought. My precious husband is one who has a very difficult time throwing things out. He is attempting to work on it though. My husband is disabled and on oxygen daily. The problem I do have is I have no energy with the increased levels of inflammation with my lupus,and other issues. Example: If I go with my dad to the doctor, then I am done in for the day. I have to lay down a lot to restore a bit of energy. I worked this past spring for days making me a small beginning perennial garden. I had been making some progress in my house until March of this year when my mother died. The stress of course only brings me down further, but I am working on it, that is why I am here. I have to do things in my house as easily as possible, and in short increments. I can use any help any of you give me, and would be so very thankful. I want to be able to have family visit. Right now I am ashamed to. I didn't mean to be so long, but felt I need to fill in with some info on first post.

susanp


Follow-Up Postings:

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RE: Organizing With Chronic Illness?

Hi Susan and welcome. You should get some excellent responses here.

I am sorry your life is so difficult but I'm sure you can make some improvements a little at a time.

Have you ever participated in Flylady? She has a website and provides a daily digest of lots of good tips as well as to do lists. Everything is in small increments - not full days cleaning the house and organizing! The best things I learned from her are: You can't organize clutter so get rid of/donate what you don't need first and the other favorite thing is set your timer and do what you can in 15 minutes. It really works.

All the best to you!


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RE: Organizing With Chronic Illness?

Welcome back Susan. Sorry for all your troubles. It seems that as far as organizing things you've got the most important thing you need, That is the desire to change. Because of your health issues you will need to pace yourself, but just try doing a little bit each day. I'd start with the things that may be easiest for you. For me that would be "paper clutter". Don't we all have that? Piles of old junk mail, magazines, newspapers? It's easy because it all goes into the recycling bin. No big decisions to make. Then work your way up to the next easiest thing. I think the important thing is before you start anything is to have an end game. Have a plan for how you will finish. "I will sort these books, and take the ones I no longer want to the library for their book sale." Then I will put them right in the back of my car. Do it a little at a time or it will be too overwhelming. And when you are really low on energy, just do some little things. I sit on the couch, in front of the TV with the waste basket in front of me and clean out my purse, or a junk drawer or some little thing just so I can feel like I have gotten something accomplished.
I too am trying to get my house organized and I come on here basically for moral support, and inspiration.I have found that since I've been doing this I've been much better about not bringing stuff into the house. I donated over 20 pairs of shoes last spring and have not bought a single pair since. I also have not purchased any clothes for myself at all this summer. I still have a ways to go with my decluttering, but I'm getting there. You will too.


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RE: Organizing With Chronic Illness?

Thanks to both of you Dawn and tripletmom83. I smiled to see I had these replies from both of you. It did help me to feel encouraged. I did belong to Flylady at one time. Probably ought to go back there for more inspiration. For some positive news, I just finished washing some dishes, and have some trash bagged up, and while hubby is asleep, I put one extra box in too that has just been sitting around. I didn't see anything important so I bagged it. I decided I am going to give some books I have kept since no longer teaching to some kids I know of that are poor, but they always appreciate any little thing you do for them. I taught special education. I also have many piles of papers,planning books from teaching days that I no longer need. They are just something to look back at, but that doesn't do anything for my home now, so I am going to start dumping them. I may keep one notebook that I use to have with me each day to look back at. Anything really meaningful I can also take some pictures of, and they will be much easier to keep. I just want to enjoy where I am at now in my life. I am glad I am here on this board.
Thank you.
Susanp


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RE: Organizing With Chronic Illness?

susan is there family who could perhaps help out so that you could sit and make the decisions while they bag things up for trash, box things up to donate etc? I think that could help you get things into shape where you can manage them better, and if you have someone who would be willing to help that could get things moving along much faster. I get that you feel ashamed but sometimes I think we do need to put our pride aside and just ask for help, because people are usually pretty willing to dig in and help out if they can. With all your health issues I don't think you need to be ashamed that things got away from you, when you don't have much energy it is hard to keep up with things. I think if you can delegate the more physical side of things such as moving the stuff and carting it away to someone else it would be a great help to you.

If that's not possible, then I think just working at it in small bites as others have mentioned, try to sit as you go through things and do what you can without tiring yourself out.


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RE: Organizing With Chronic Illness?

Susan, I'm sorry you have so much to deal with. My husband has MS and is in bad shape. He belongs to several MS support groups that have meetings. Even if he isn't up to going to the meetings, I go as his Caregiver. One woman with MS told how she manages her housework. Even tho she has tremendous fatigue, she cleans one room a day. She forces herself to remain in that one room and do as much as she can. How many rooms does a typical house have? Seven or eight? That means you can clean a whole house in a week or so.


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RE: Organizing With Chronic Illness?

When my triplets were babies that is the system I used, one room an evening, after dinner while my DH played with, and cared for the babies. It was actually a break for me, a few moments of quiet, solitude. But I have to say that works great when a house is already relatively neat. And although I can't speak for SusanP, it sounds as if her condition is such that cleaning a whole room may be more than she could handle each day.
My goal back in those days was to do one thing each day that would not be undone. So bed-making, dishwashing, laundry didn't count. Those are ongoing. The things I added would be straightening out a closet, or a drawer, etc. Then of course Hubby and I had to be on the same page about not messing them up again. It worked fine when they were really little, it works great now that we are empty-nesters, it didn't work so well in those intervening 17 or so years when those three little messer-uppers were living here.


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RE: Organizing With Chronic Illness?

I'm sorry you are having to deal with all this--your family troubles, your illness, your DH's illness.

Have you read about the Spoon Theory? I've attached a link below. It might help you to explain your issues to other people, and you can also use it to help you use your energy throughout the day.

To get organized while ill is difficult, but not impossible. It will take more time than for someone who is perfectly healthy, but it can be done.

One of the first things I would do in your situation is to see if either you or your DH is eligible for any help in the home from the state or federal government. It is possible, if you are both disabled, that you could get someone to come in for a few hours a week. Then you could have that person do the cleaning--the kitchen, the bathroom, the vacuuming. That way, you could save your energy for the decluttering and organizing.

You might try my method, which is "Don't make things any worse." That means that even though things might be messy, I don't add to the mess. I clean up after cooking or crafting. Anything I take out, I put away. Don't bring anything new into the house. Shop only for what you need--food, toilet paper, things that will get used up.

Then focus on the basics. Some people call them Dinner, Dishes, and Duds. Keep everyone fed, keep the dishes and sink and dishwasher clean, and keep on top of the laundry. It is much easier to work on the decluttering and organizing when the basics of day to day life are taken care of. So maybe work out a system where you get the day-to-day stuff under control.

On another board, I read about a hoarder who had severe physical problems, like you. When she decided to change, she worked in 5 minute segments. At first, she just picked up around where she was sitting, throwing out the trash first. Then she'd wait until she was going to another room anyway and take things to put back where they belonged. Every time she went from one room to another, she tried to find something to bring with her that belonged in the other room. Some days, she could only do one 5 minute cleaning. But eventually, she cleaned her whole house, 5 minutes at a time.

There are some simple things you can do. Keep a trash can in every room. Line them with plastic grocery bags. Then you don't have to walk very far to throw something out. And on trash day, you can just walk to every room, grab the bag, and toss all the trash. If you have a trusted friend or family member, this is something they can do for you.

I used to do my grandfather's trash like this when I visited him. He always had one or two short, easy chores that he would ask people to do for him. He was in his 90s, getting up and down was hard for him, and his arthritis was so bad in his fingers that he couldn't do a lot for himself. But he spread the chores out so that no one felt they were doing too much work. (He also had 31 grandkids, so there were a lot of helping hands.) (Of course, he also taught me to make "Grandpa's Orange Juice" when I was 14. Equal parts orange juice and some kind of whiskey. That way, Grandma had no clue that he was drinking.)

Here is a link that might be useful: Spoon Theory


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RE: Organizing With Chronic Illness?

Camlan, thank you so much for posting the link to the spoon theory. For a healthy person, it is an eye opener.


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RE: Organizing With Chronic Illness?

Susanp, welcome back. I was a member back when people got "sent to Disney" and I couldn't even remember my screen name from those days. I am sorry you are going through all of this. I agree with the others; a little at a time, and see if someone can help. I have scoliosis and CP, and it is hard for me to get more than a few things done each day.

Camlan, thanks for the spoon theory. I've never seen it before, but it makes perfect sense.


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RE: Organizing With Chronic Illness?

Hi Susan -
Great job on what you are already doing!

This was on Flylady yesterday - I thought of you when I read it:

Ask FlyLady: How do I Declutter?
flylady, 9/20/2012 10:00 pm

Dear FlyLady,

You are always telling us to Declutter! I don't know how! Where do I start? I am so overwhelmed! Please tell me what to do!

Overwhelmed FlyBaby

Dear Overwhelmed FlyBaby,

You can do this. We have a whole section on our website that teaches you how. The main thing to remember is don't do too much at one time; babysteps!

How to Declutter

Taking 15 minutes each day to declutter an area, using the 27-Fling Boogie, and clearing your hotspots are among some of the most powerful tools you can use to create a more peaceful home. Remember: You cannot organize clutter - you can only organize the things you love!

I've included my tips on how to declutter. Put your home on a diet. If this is difficult for you, try reading one of my favorite books, "Clear Your Clutter with Feng Shui" by Karen Kingston.

1. When to Declutter: Decide how often you are going to declutter a zone. Do a little every day - use a timer. But be warned - this can become compulsive! Once you get started you will want to clean like a banshee! Don't burn yourself out! Only do small amount at a time. The house did not get dirty overnight and it will not get clean overnight. When you set the timer you can only do two sessions at a time. This goal may seem unattainable right now, but you can do it in little pieces. In a couple of months, the whole house will be decluttered.

2. Decluttering Equipment: You will need garbage bags, boxes, magic markers, and a dust rag. Label the boxes "Give Away", "Throw Away", and "Put Away". Line the "Throw Away" box with a plastic garbage bag.

3. Set your timer: for 1 hour (or 30, 15, or 10 minutes - it does't matter how long). Just do the job as fast as you can and do not pull out more stuff than you can put away in that length of time. This means just one drawer, one closet (or even one shelf in one closet), one magazine rack, or digging under just the furniture in the zone. Not all of them at once!

4. Start at the entrance to the room: Then, work your way around the room clockwise. Do not skip a spot. Whatever happens to be next, just do it.

5. Declutter Away! With boxes at your feet and dust rag in your waistband, start off by cleaning out and getting rid of the things that do not belong in this room. Put garbage in the "Throw Away" box, donations in the "Give Away" box, and stuff that goes somewhere else in the "Put Away" box. Don't worry that you do not have a place for everything right now. By the time you finish you will. That's a promise from FlyLady!

6. What to declutter? Things to ask yourself as you get rid of your clutter:

* Do I love this item?
* Have I used it in the past year?
* Is it really garbage?
* Do I have another one that is better?
* Should I really keep two?
* Does it have sentimental value that causes me to love it?
* Or does it give me guilt and make me sad when I see the item?

Cleanse this room of everything that does not make you SMILE.

7. Sing this song: "Please release me, let me go" as sung from the stuff's point of view. It needs to be loved by someone and if you don't love it - GET RID OF IT!

8. Get rid of the garbage! When the "Throw Away" box gets full, pull out the garbage bag, close it, and put it in the trash can, the pickup truck, or wherever you keep your garbage. Put a new garbage bag in the "Throw Away" box and keep on Flying until the timer goes off.

9. Donations: When the "Give Away" box gets full, seal it off, and put it in your car. The next time you are out, you can donate to the area thrift shop. Do not save your clutter for a yard or garage sale, you will be blessed by giving it away. The value can be deducted on your income tax. Remember you are trying to get rid of clutter - not relocate it somewhere else in your home. Now, grab another box, label it "Give Away", and get back to work.

10. "Put Away" Stuff: When the "Put Away" box gets full, take the box in your arms and run around the house (good thing you have shoes on - right?) and put the items in the room where they belong. If they have a place, put them there, if not put them in the room where they logically belong. By the time you have finished you will have a place for everything and everything will be in it's place.

11. Timer Goes Off: When the timer goes off, you have to put away all the boxes, but first you have to empty them all. Go as fast as you can.


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RE: Organizing With Chronic Illness?

I want to say getting input from all of you means so much to me. All of you are so kind and understanding. I believe God led me here. I do agree that I will always have to do things in small increments otherwise my body just takes over and shuts down until I have to lay down until I have some restored energy. I painted a couple more steps yesterday on my front porch, so I am slowly getting there. I have heard about the spoon theory, and it is how it works. I am always open to more suggestions etc. I have all of you in my prayers for your needs too.

Thank you
susanp


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RE: Organizing With Chronic Illness?

If you are limited physically, you should give yourself amnesty in where it goes after it is out of your house. I'm a big believer in recycling and donating, but someone with limited mobility and energy has my blessing to buy big garbage bags and just get things to the curb. The less you have, the less you have to organize.


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RE: Organizing With Chronic Illness?

An earlier post mentioned possibly hiring someone to help you. I don't know if this applies to you, but it may. If you or your spouse are a veteran of a declared war;ie. ww1, ww2, korea, vietnam, etc., you may be eligible for an 'aid and assistance' benefit. It is relatively unknown, and even a lot of VA employees don't know about it.
It is available for those in a facility but also available to help those in their own home. You can go to the best website for more info. The most important peice of information I picked up was that the VA considers the date of receipt of a claim as the claim date. Even if the information is still incomplete, if a claim is approved later it goes back to the receipt date for the effective date. There is a form you can fill out that basically says I'm submitting a claim but don't have all the info. that gives you a claim effective date that could mean 6 months of retroactive benefits.

Barbara

Here is a link that might be useful: Veteran Aid


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RE: Organizing With Chronic Illness?

You know, if you have things that need to be done outside the house, you could probably hire a neighborhood teen to do some of them for you--like painting the steps. You could haul garbage bags to the front door, and have your teen helper take them to the street for pickup. There's a lot of 14 and 15 year olds out there who can't get a regular job yet would would love to make $5 an hour doing odd yard chores for someone.

As your house gets better, you could also hire a teen for indoors help. I know two young women who cleaned houses when they were in high school and college for $10/hour.


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RE: Organizing With Chronic Illness?

Hi Susan, I have a lot of fatigue issues that increase tenfold when I am stressed, depressed, anxious, etc. I understand how hard it can be to just get the bulk of daily chores done.

I tend to take mental stock of what is around the house- thinking of things that I know are there and that I wouldn't mind parting with. No need to necessarily go through a whole cabinet, but pull out 4 old beer mugs that I know are in there and put them in a box to donate. Sometimes I aim for just 10 minutes of this type of work a day, depending on what is going on. If you do 10 minutes a day, a few days a week, in a year, you will have spent a fair amount of time and probably eliminated a lot of things. It's that old adage about how you eat an elephant-- one bite at a time.

Where I live, we are fortunate to have several organizations who will happily pick up any donations you might have, and they are available to come by once or twice every week, even for just a bag or two of stuff. This is great for me because it means I can schedule a pick up, put a few boxes and bags in one space (add to them as the date approaches) and then just stick everything out in the front entry on the given day- and it is gone to new digs by the end of the day.

I just finished reading a book that was very good- Clutter Busting by Brookes Palmer. He emphasizes over and over again that 75% of the stuff in your house is weighing you down, and that you are more important than any material item in your house. Reading his book gave me a lot of clarity on how to go through things, he's got a lot of tips about recognizing when you don't need or want something, but are making excuses up to keep it. It's been a helpful and inspiring book for me to get going again. I'll warn you that he has a few stories in there about people who have health problems that he decides are just mental clutter, and related to the outer clutter, but if you can accept that there are some hypochondriacs out there, and don't feel like he's telling you that all your health problems will go away if you declutter, then the book has a lot of value. One thing that I will contend is that, you will probably feel better as you make this go away. But be patient with yourself and do things as you can, and one day you will wake up and realize that it really has changed.

(((HUGS)))


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RE: Organizing With Chronic Illness?

Just to add on to what quasifish suggested, I do the same and if I notice something that I want to donate as I travel around the house, I grab it and put it in "the charity box". I always have a charity box on the go which I keep near the kitchen because it's easy to get to, and instead of thinking "I should probably donate that", it makes it easy for me to put it into action. I'll just keep adding to it until the box is full and then I'll just start another box.

But I also know a thrift store that I travel past every so often where I'll drop them off when I'm in the area, so I dont end up in a situation where I'm just storing the boxes, because I have a plan of what to do with them. But as quasifish suggested, there may be charities that pick up in your area. Just having this type of plan for me takes me from thinking about getting rid of things to putting it into action without really having to do too much at once because over time it's just become a habit that I don't even think about. At one time I was filling up heaps of boxes to donate as I was purging things, but even now I keep it going to stop things from accumulating again.


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RE: Organizing With Chronic Illness?

The link to the VA Aid and Assistance program doesn't work. You can go to the website, veteranaid.org for the information.

Barbara


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RE: Organizing With Chronic Illness?

God bless you for even wanting to organize with your health problems!

I have autoimmune issues, too, that leave me tired. Here are some thing that have helped me:
1. PUT YOURSELF FIRST How YOU feel is the MoST important thing - period!!!!! Folks won't like it when you start putting yourself first. Ignore them. Your energy level is the most important thing, not what other people think.
2. REST when you are tired. I have learned to stop what I'm doing when I get tired and just lay down for 15 minutes. This was hard for me. I was raised "you don't stop before its done." I can't do that any more.
3. SAY NO to things you don't want to do. This was hard for me, too. Now when folks ask me to do something I don't want to do, I smile and say no. Example: Church Lady: can you run the coffee hour after worship in July and August? Me: no. Church Lady: it only takes a few hours a week. Just a few phone calls and an hour on Sunday morning. Me: (smiling) no, I can't do it. Church Lady: we really need help it won't be too much. Me: no, I'm sorry but I don't want to do it then I walked away.
4. Save your precious energy for things that really matter. If organizing is important to you, then spend energy on it 5 or 10 min at a time. I keep a plastic bag with me around the house and use it to take things from room to room.
5. Only spend energy on things that give you energy. I am very careful about what I choose to do. Home improvement projects give me energy so I spend my energy painting my house, remodeling the kitchen, etc. cleaning and cooking sap my energy. So I use the Crock Pot a lot and we way salad with dinner every day instead of cooked vegetables.

I guess what I'm really saying is - be as kind to yourself as you would be to a friend who has health problems. Good luck to you!


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RE: Organizing With Chronic Illness?

"Be as kind to yourself as you would be to a friend who has health problems"

Extremely wise words.


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RE: Organizing With Chronic Illness?

I so appreciate the continued posts. They are encouraging. I don't have connections to the VA. We live in the country so we don't have some of the services that some do, but we do have regular trash pickup. I can drop off at a goodwill store when in the town or the women's shelter. My kitchen floor needs scrubbing, so the other day I got down for a few minutes and did just a small place, but figured I could continue that way. Yesterday didn't get anything done, because I wanted to go with my son to watch him do some of his photography out in the Big South Fork area in the remote areas. He knows I can't walk far so he parked close to things. I enjoyed the time out, but today can't do anything. hehe...He got some nice photographs though. Mommabird I know what you mean about having to say no, which is hard for me, but sometimes I have no choice. I really don't have energy looking after my fur babies, but they are so calming to me. Stress relieving.

susanp


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RE: Organizing With Chronic Illness?

My friend recently gave me this wisdom: NO is a complete answer. You don't have to make excuses or explain.

Try it sometime. I've found it freaks people out if you just smile and say No. They are used to people making excuses and explaining. Now I just say NO.


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RE: Organizing With Chronic Illness?

Yes that is true mommabird, and life is too short to always have to explain ourselves isn't it?

We all do what we can do.

Susanp


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RE: Organizing With Chronic Illness?

Susanp,

You mentioned 'you don't have connections to the VA'. The only 'connection' needs to be you or your spouse having served 90 days or more during a war. My era is Vietnam,and I'm sure others on this forum would qualify from WW2, Korea, Desert Storm, etc.

Just to further clarify about this little known benefit, it can proide financial assistance for nursing home, assisted living, or helping people who are still in their homes, such as yourself.

If you spouse was in the military during a declared war, please check it out.

Barbara


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