posted
I am confused on how you all make it work-I work 30 hours a week. I am doing oral and IV antibiotics (2 hour infusions) 7 days a week. I see my LLMD every 6 weeks. I see other doctors as well almost on a weekly basis I have an appt on my day off (work 4 days off 1 plus weekend). I find myself struggling to keep up with bills, food, dealing with insurance, researching new treatments, helping others, hanging out with friends or even catching up on the phone, laundry, picking up medication, getting supplements, etc.
I have a filing system for all my paperwork, bills etc, I met with a nutritionist who will help me plan out recipes for the week, but I just don't know how I can work more productively to get things accomplished. I used to be able to do so much more and only feel I am getting 1/2 the things done I used to be able to accomplish. It's very frustrating because I am so tired and I have so many thoughts going on in my head at one time that I am all over trying to remember as I am working on different things how to accomplish it all.
So how do you all go about getting all the normal things done so that you can go out and play with the little energy you do have?
Laundry is a big big thing for me because I am severely allergic to dust mites and I break out in hives if I wait longer than a week to do laundry. So that is like a must. I just don't know what ways I can improve to get more done.
Thanks, smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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Keebler
Honored Contributor (25K+ posts)
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- You'll have to get some help. Any friends or family to help - on a regular basis with laundry, cooking, cleaning, errands? Volunteers. Can you pay a high school or college student to do some of that?
Can one friend be your coordinator for all that needs to be done? If this were cancer, such a design would likely be enacted. If you can hang out with friends, they can surely use that time to work with you for practical needs. You just need to let them know that the situation is serious and it's time to see who can answer the call for help.
If they can't - who do they know who can - or who else can they call to make this happen? Somehow, you've got to get a support network up and going.
Lyme is actually much harder on some patients than (some) cancer can be during the treatment phase. But, because lyme is not recognized by the medical establishment, many lyme patients put their treatment at risk by having to run themselves into the ground.
Have your friends see the documentary "Under Our Skin" and then they'll see what can happen if you don't rest enough.
Rest is vital for recovery. If you push too hard, all the medicine in the world can do no good. You must have rest when you need it. Lack of good rest is one cause of treatment failure. Afternoon rest sessions are a must.
You have a life-threatening illness. Your body requires rest so that it has a chance. It cannot heal if it has to do all that other stuff.
Somehow, you have to let go of a heavy load. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow, I can't believe all you're doing!!! When I was sick, my husband had to work out of the house so he could take care of me. There were days I couldn't walk to the bathroom by myself. He had to do all the grocery shopping and cooking. It was a rare day that I could do that.
Now I'm better and can do whatever I want, but when I was sick, I was mostly bedridden.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
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If I could do half of what you are doing I would be thrilled!
5 months into my illness I had to quit my job. Was mostly bedridden for most of the last 4 years. I'm starting to get better now; but can do nowhere near what you are doing yet.
You will find that a lot of lymies are in much worse shape that you, so just feel blessed that you can function at the level you can.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Most of my friends live in the city and I live 30 minutes outside the city at home. My mom travels 2 weeks out of the month and my father isn't a part of my life. I have to figure out a way to making it work with what I got. My mom is so burnt out with her own life that it's very hard for her to accept what is going on with me. She wants to help but she can't really mentally understand how sick I am because I look normal.
6goofykids-you say now that you are well you can do it all, but how do you do it all?
I am a lot better than most lyme patients. I am already 5 years into treatment and I relapsed very badly last year hence quitting my job Jan 09 and then working as a nanny starting Jan 10 to help pay for everything. My parents don't contribute to any of my living except housing-I pay for food, medical, phone, and pay rent etc. This is not negotiable, I tried tell my mom that is so much when I am so sick-My mom says I have to learn to live with this and if I'm ever going to move out I need to know how to make it work. Even my LLMD is frustrated with her.
Today I was so exhausted from this week that I crash from 12-4. I still have to make dinner, I missed my meds, and I am so exhausted. Maybe I am herxing? I do feel better on IV but sometimes I feel like I am just on autopiolit and my body is functioning but I am dead inside.
The last few months of being back at work and trying to do it all with orals and IV have been so hard. Even though my job isn't hard as a nanny compared to some jobs I still feel like I'm drowning.
I was just hoping to find ways in which I could get things done more efficiently or maybe because my brain isn't as strong I am missing how to do things. I don't know if this makes sense but I feel like if I could do it all before, why can't I get it all done now?
Thanks for all the support and kind words! smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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sutherngrl
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You are being way too hard on yourself! Give yourself some credit. Sounds like you are really tough.
Sorry that your mother doesn't understand. That seems to be a common theme with most of us lymies. Ppl just don't "get it".
I think it sounds like you are doing the best that you can. So pat yourself on the back and just try and hang in there.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by smiles132002: 6goofykids-you say now that you are well you can do it all, but how do you do it all?
I'm not sure what you mean. I'm better, so Lyme doesn't restrict me anymore.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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posted
- There are people who want to help others.
Call social organizations, churches, synagogues, temples, etc. to see what kind of volunteer base is in your area for those with illness. Explain that while not cancer, it is a similar treatment to chemo, just for a non-contagious chronic infection. You can share a bit about lyme but keep that short or share the DVD: "Under Our Skin"
Call your local United Way for some ideas. If there is a university nearby, call a community minded sorority or student activities center.
As for friends living in the city, 30 minutes away is still very doable if each one would help you for 2 hours every other week. Quite manageable for them. I hope they will help.
Whether your mother recognizes this or not, you are ill and you need to cut back on activity - somehow. If you take the very best care of yourself (as I'm sure you do), I would think your friends and family friends and neighbors would also be glad to help.
Do ask. You have every right to ask for some help. I hope you will find that community will blossom. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Amanda
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I know its really hard when your on your own.
I worked for a while, and just got worse so had the quit. No family could take me in, but got SO SO lucky in that a friend lets me live in her house.
But, when I was working, I finally asked three different friends, could you please bring me dinner once a week? That gave me 3 dinners a week, and usually left over for lunch next day.
Also, I sat down and thought really hard about what was essential, and what seemed to help me. I gave up on a bunch of supplements, eating "super organic healthy" (bagged salad mix with precooked chicken and a few beans is fine).
I know its so hard when you're doing it all, just see if you can shave off one or two things, and get a few meals to you and see if that helps.
hang in there
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Haley
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It's not easy. I don't know how I am doing it. when I was first diagnosed I was sure I would have to go on disability. I still have days when I think that I will need to do that. Some how we make it through. I had a lot of people praying for me.
I also met someone from a small church. These people at this church were the kindest people I had every met. I am not the type of person that likes to ask for help but what I realized is people felt very good about helping me. They made me meals that I could put in the freezer and I always had healthy food to eat.
You would be surprised how people you don't even know will step up to the plate to help. All you have to do is ask.
Posts: 2232 | From USA | Registered: Aug 2009
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TerryK
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You have gotten some good advice. Hopefully you won't ever get sicker than you are now but unfortunately, that is often out of our control so it's good to start learning shortcuts now.
I buy supplements on-line. It's easier, faster and cheaper. If I know it's something I will take for awhile and I have the money, I buy extra so I don't have to order for awhile.
When I make meals, if it's something that will freeze well, like soup, casseroles etc., I'll freeze it in meal size packages so that when I'm not feeling well I can pull it out and have a nice meal. There is also a service where you can go and purchase pre-made homestyle foods in meals for a week or 2 at a time. My daughter has used it and loves it but so far I haven't tried it. Might be an option for some people.
Prescriptions can often be purchased through a mail order pharmacy in a 90 day supply. Of course that won't work if you will only be taking it for a short time or don't know how long you will need it but it works for prescriptions that you take on a regular basis. It's usually cheaper too.
I make supplements and prescription meds up ahead of time in pill bottles that I label or 7 day planners. My pills and supplements don't fit in the 7 day planners but I make them up for 3-4 days at a time. It's faster and takes very little time to pop them in your mouth from one bottle.
I keep all supplements that I am currently taking in one bag where it's easily found. The same with prescription meds.
I use an appointment book and keep appointments and notes on things that need to be done on certain days there. I also use a reminder program on my computer to make sure that I stay on time with certain tasks.
Find things that make cleaning easier if you can. For example, I use melaleuca shower cleanser and wipe the shower down right after a shower. It cleans better than any other I've found so far. Look for products like that. I also stumbled across a countertop cleanser called Caldera countertop cleanser. It is made with essential oils so it does have an odor but it makes cleaning the counters really easy and it's even easier between the times you use it.
Learning to prioritize and be realistic about your energy level is key. I've learned to let many things go. It was really hard at first but I had no choice. Much easier to do it in an orderly fashion than when you are forced.
So many things have become automatic over the years that I'm sure I"m not remembering everything. If I think of anything else I'll come back and post.
Thanks for starting this topic. I'll be very interested in shortcuts and effeciency tips from others.
Edited to add: Keep a tupperware container of fresh cut vegetables so you can grab them for a snack as needed. Make hardboiled eggs on the week-end for snacks during the week.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Just like others have said, if you're doing all that you're doing very good!
I wish I had words of encouragement for you.
My life since lyme consists of work and sleeping and eating. Repeat. Actually, I am thankful because I know a lot of others with this disease are bedridden.
I love Burlingame!! SF is an awesome place to visit!
Best wishes on a full recovery!!! We all want our life back!
-------------------- I am not a doctor and am only expressing my opinions...please do not take this as medical advice. Posts: 44 | From US | Registered: Jun 2009
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BoxerMom
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posted
Smiles - Please don't risk a huge relapse that keeps you in treatment for another 5 years. You are way too busy for a Lyme patient. Be kind to yourself and make some room to heal.
You may have to stand up for your right to focus on getting well. Daunting, I know. No one really believes that we are sick.
When I was diagnosed, I dropped my work schedule from 5-6 days/week to 3 days/week. I know that's not an option for everyone.
I put myself on medical leave from all my community groups. I told everyone in my life what was happening and why I needed to "go away" for a while.
I got great supportive emails from everyone, then they all dropped out of my life. I haven't seen any of these people in two years now.
But I am healing. I have made tremendous progress in two years and will probably be done with antibiotics this year. My life will continue at a sane pace, because I do not want to relapse.
I ignored my symptoms for years because the culture forces this huge "You are fine - you just don't know it" message onto us. Then the message continues while we are in treatment!
Defy that message. You ARE fine. In every way. And you have Lyme. And you deserve to recover fully.
Ask for help. Use organizing strategies. And stick up for your right to say "no," even when people give you a hard time. You will feel so much more like yourself.
Best of luck! I know you can figure out how to make it work!
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Aside from the IV antibiotics I am about as busy as you are.
I work as a painter, yes a labor job, 5 days a week and probably over 40 hours. Don't have a choice. It is our business and we can't afford for my husband to hire someone else right now, so it's him and me. This week will be all outside in 90 degree weather with my hat, my long sleeve shirt, long pants, bug spray, and sunscreen.
I have either an appointment for me or for one of the kids (they're not sick yet, knock on wood, please God don't ever let them get sick). Doctors, dentists, school functions.
I cook, clean, so the laundry, the dishes, get the kids up, dressed, home, ready for bed. All this while going to school full time online. I'm thankfully taking my last final on Monday, so I'll be done until August. A much needed break.
I write everything down...everything. If I don't I forget it. All my meds are in a 7 day planner except the ones I have to take at work and the ones that need refrigeration. The ones I have to take while I am at work are in one bottle in my purse so they are easy to find. And they are still written down, what time to take them and everything. I keep all my bottles on my couch table (out of the reach of the kids of course) so they are easy to get to and because I do the planner I know at least a couple days ahead I'm going to need a refil.
I write down to-do lists, and since Lyme I haven't finished one to do list but I try. And the stuff I don't get done I save for another day. I write down everything I need from the store while I remember it because for a while there I was going to the grocery store like 5 times a weekend because I kept forgetting stuff. Put the stuff in order of most important to last important, like laundry, MUST, then so on.
I try to do very little during the week. By the time I get home from work I'm beat and in pain. I keep the meals for the week easy, hamburger helper, hot dogs, grilled chicken, well grilled anything is easy because my husband handles all the grilled food.
I do my cleaning and laundry on the weekend, and sometimes during the week if we get off early. I go to bed between 9-10 and get up at 5am every morning (except today I guess I shut off the alarm clock) to take my meds early so the ones that I take 3 times a day I can take it again at 9. 5am it is quiet in my house, kids are sleeping, dog is sleeping, and husband is sleeping. It gives me time to do my homework, or just relax and read lymenet, lol.
I don't answer the phone or emails or anything else when I don't feel like it. I use to feel bad about it, but not anymore. When I feel like crap I DON'T want to talk to anyone!! I just want to sit there. It isn't often when I just get to sit down and rest but when I do I don't take it for granted.
I'm Ok right now being so busy but somedays it's hard especially when it's a painful day. Last week, Saturday and Sunday, were two horrible days for me. I thought maybe I had overdone myself at work but I worked harder this past Friday and felt fine this weekend. I actually took my weenie pain medicine instead of my good stuff because I was feeling so good. I guess though it was a herx reaction or something because by Monday I was feeling good again. But anyway, on those days I try to take it easy.
I do a lot, and I know that. But I don't feel like I am doing too much. If I'm not at my best my kids will feel it and if I don't get well it will not be good for them. So I don't overdo it at home. I do sometimes overdo it at work...not by choice but we do have deadlines...like this week, a Dr.s house, over 5,000 sq ft. We are doing the outside, it's just us and we hired one guy for labor because all the painters we know have work, and it has to be done by Friday for his daughter's grad party on saturday. Will I feel it next weekend? Maybe, I didn't feel it this weekend, lol.
I would shop for easy foods to prepare. Or even google quick meals. A lot will come up and they will still be healthy ones. When I'm feeling really lazy chicken salad or tuna salad sandwichs. I get the chicken breast in a can, cut up some celery, onion, and throw some mayo and relish in there stick it on some bread and viola, dinner.
I would definitely do like a previous poster said, meals that are easliy frozen. My husband and I make a really good viet soup, but when we make it we have a ton left. We freeze it and have two more meals for us. My mom freezes any and everything she can, lasagna, home made mac and cheese, cooked meats, hamburgers. If it can even be thought to be frozen my mom freezes it. And when you are home on your days off cook a bunch of different things that can be frozen, freeze them all and you'll have dinner all week. Subs are an easy dinner, even can be eaten wheat rolls to cut back on carbs.
I use to make stuffed shells, lasagna, and different meals that took hours, not anymore. I take the easiest route to the dinner table. We had something in a box the other day from the store, OH chicken alfredo, stouffers, frozen. Stick it in the oven for like an hour and half or something and dinner is done. The easier the better.
I try to keep my appointments to a minimum. I push off what I can when I can. Actually rescheduling an appointment this week because I just can't do it this week. Unless it is absolutely neccesary that I go I will reschedule if I don't feel up to it or am too busy.
If I was still living with my mom she would probably be the same way your mom is being. She can't see I'm sick...and since she's a nurse Lyme doesn't exist like this. I sent her a whole bunch of info but she hasn't said a word about it, acts like she didn't get it.
People tell me to slow down too, but I can't. I don't have a choice. I can't stop working, I can't stay inside, I can't stop caring for my kids. The house needs to be clean, the dishes done, and good cooked. While my husband does help some, I have problems asking for help. I've done it all, all by myself my whole life, and I just keep doing it that way. And I know that he really doesn't understand either. I can tell him about my pain but I definitely believe until you have gone through it yourself you don't understand the pain that Lyme brings.
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I am allergic to dust mites...did you know you can mix eucalyptus oil in with your liquid detergent and it kills dust mites? The smell is gone after it come out of the dryer. Works much better than just washing alone.
Posts: 1276 | From maryland | Registered: Jan 2009
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interesting-I will try the eucalyptus thing-7th generation laundry detergent makes a eucalyptus blend-wonder if that's why?
I know that I should ask for help-but I am not religious and also I am allergic to corn, soy, milk, eggs, wheat, and yeast. My diet is like ridiculous. I have to eat organic fresh food or I will throw it up because I do not have the ability to methatlate and I have a hard time digesting food to begin with.
I was just hoping to find tricks/short cuts on how to get a lot more accomplished. When my brain shut off from all this lyme stuff I forgot basic things. I am doing a lot better now and my brain is more clear but I definitely lost the ability to solve basic problems. The tip about cleaning the bathroom after using it is great! I will try that for sure.
My goal isn't to miss appt and only deal with what I can. I need to go to as many appts and try as much as I can in the next few months, because I need to get back to work. Also I can't push off these appts because they are important to me getting well. I spent 4 years working and pushing off appts and doctors and eating crappy food because I was too tired to fix it. But it got me no where, so I took off a year and now I am working 30 hours a week trying to build myself back up.
I realize that I am not well and that maybe I shouldn't be doing so much but I also am realistic and know that I only have so much time and money and I need to make the most of this time. I wish I could take the next 2 years off and really recover but it's not an option for me. If you have any other tips feel free to leave them. Thanks for all your suggestions and help.
I full admit that I have a hard time asking for help, but I also know that beggers can't be choosers and it would be so sad to have people cook me food that I couldn't eat. I just don't see it going over well. Also, I live in a very small community and I can't have people knowing I am ill. If I had cancer sure, but lyme is different and it will greatly hurt my chances of future work.
Best, smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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Keebler
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- You said that you "live in a very small community and I can't have people knowing I am ill. . . ."
Why not? It's just part of being human. But you don't have to advertise. You just need a few folks to be on your team.
You don't necessarily have to be religious to ask local houses of worship for help, just respectful of their members, of course.
You can be on a restrictive diet and ask for help. For me, it's mostly someone shopping (or deliver) and the washing up vegetables so they are all ready to cook. Everyone eats vegetables. Washing is the hardest part for me (as I can't grip at all or hold anything in any manner).
Since I can't use a knife, I've learned that you can cook carrots hole and cut after they've cooked. If you can snap on in half, it will fit better in a pot.
If you get bagged lettuce, ALWAYS wash it, anyway. Salad spinners are great.
Anyone can cook a pot of quinoa for you (or other gluten-free whole grains) - that will last a couple of days. That's about as prepared as any food we eat is, anyway. You can season it anyway you like as you resteam it. Or eat is cold.
Eating organic should pose no problem. It's easy to distinguish that in the market by the signs. And, for your protein, lentil soups can be seasoned in a variety of ways, all within your dietary guidelines. Anyone can hard boil eggs for you.
Don't underestimate others. Most at churches, synagogues or temples are not looking to convert - they just want to help fellow humans. As long as there is respect, most are just fine but you could ask if they have a volunteer group and what their requirements might be. Some congregations may require membership but all certainly do not.
Unless you drastically cut back your body may not be able to keep up. Please also ask your friends - at least to help vacuum and laundry. Reach out. At least ask. They may say no, but do ask. If they can't, ask if they will make some calls for you to find others who can. Maybe their friends would enjoy being on your team.
It's time people all pulled together to help each other - people used to do that, you know. It's time again. Some are just waiting to be asked. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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littlebit27
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I agree with Keebler about the churches. I have seen churches help people who have never even as much as uttered the name God. Most are very helpful and do not see the religous aspect only see someone needs help.
The worst that is going to happen is someone that you ask says no. Oh well. Ask them to help, and if you're worried about the cooking issue tell them ahead of time what you can and cannot eat. Sit them down and explain everything to them. Some people just like to help others, it's in their nature.
Like I said my mom freezes everything. Just because it can't be processed or whatever doesn't mean it can't be frozen. From a website... "For out-of-season organic produce, try the frozen food case,'' says Lempert. ``When fruits like blueberries aren't in season, you can buy frozen organic blueberries that have been frozen at the peak of freshness and nutrition for half the price of blueberries that have been flown in.''
Just a point to say even organic can be frozen. I'm sure if you google organic recipes you will find many that can be frozen and eaten later.
I don't expect you to slow down even if your body needs it. I'm not going to, I can't if we like living and eating.
Maybe do a load of laundry a night so on your days off you don't have as much laundry to do and it will be in smaller batches. I don't know what else to suggest. A lot of people gave you great suggestions here, so I hope at least some of them will help you.
I am in a similar situation--I work full time and live alone, so I do everything. I have been sick for a year now, with joint/muscle pain, fatigue and occasionally volatile emotions, but not so bad that I have to stay in bed. The fatigue is the most disabling. I can cope with the pain, and it's usually not that bad anyway.
It took me several months to accept, first of all, that I am now a person who can never eat like I used to eat, and that my diet has to change permanently.
Then it was really hard to accept that I cannot do my previous physical activities, especially hiking, or extra freelance work that I used to do for extra money. I hate feeling like an incompetent person. But I finally got realistic and decided I need to simplify everything as much as I can, since I haven't gotten well quickly.
That was another thing--I kept thinking that I would get well in a couple of months, so I resisted changing things in my life due to Lyme, when I was going to be well soon anyway and it wouldn't be a problem. Now I think it is going to be a long haul, and I am going to have to do more to take care of myself even when I recover, to try to prevent a relapse.
I could do a lot better if I could work less, but that is absolutely not an option, as I am now overbudget as it is due to Lyme, and having to move in with my parents to be able to afford continued treatment and the long LLMD trips. I have no one else to support me. My parents have their own health and money problems and could really use MY help.
I finally accepted that I am incapable of cooking and washing dishes, and getting to the grocery store is often a challenge. I have a very hard time asking anyone to help me with those chores, since if I wait a few days and feel better, I might be able to push myself to do it.
Anyway, I could ask my mother, but I look fine, and she only sees me when I'm feeling good. She knows I go to work every day. She is very supportive about the Lyme, but she really does not grasp how sick I am and how limited.
I was trying to explain to my folks for the umpteenth time that I do not know how I am going to accomplish the move to their house, because I am not capable of packing up or getting rid of all my stuff. My brother tried to give me advice, and said, "Try just packing one box a day every day." It would be ambitious to think I could pack one box at all, and probably one a week would do me in. Plus with my schedule, I only have about an hour a day free for anything besides working and sleeping and taking care of myself.
I am experimenting with a couple of the meal delivery services. They are very expensive, but they make a week's worth of meals for you and then drop the box on your porch once a week, and you can set it up to be an automatic delivery. That is a very appealing idea for someone who can't afford to hire a cook. Their food isn't really what should be on my diet, but it's better than the frozen meals full of chemicals and sugar and the restaurant food with MSG, etc., that I was eating when I couldn't handle cooking.
My best solution so far, provided I can muster the energy, is to drive to a Whole Foods store and buy a lot of food from their fantastic deli and put it in the fridge. It is cheaper than the food delivery thing, gives you more choice of food, and you can tailor it to your diet. Most of what they cook is organic or local, and they don't add in chemicals and sugar. They also have lots of packaged food that is free of particular allergens, and a gluten free bakery if you need that. (The gluten free bread is baked in a facility dedicated only to that and then sent frozen to the stores.)
I also just found a new Cuban restaurant where several of their main dishes are delicious roasted meat, and you can get vegetables as a side dish. These are the staples of my diet. This place is on the way to places I go, and has food ready for quick carry out, so if I run out of food, I can now go there to get me by for a meal or two.
I wish I could ask somebody to do my laundry for me, as trips to the laundromat every week are exhausting. If I could also send someone out to buy me my list of food and meds, I would be in heaven. Online shopping is my friend, for sure.
Sometimes just the plethora of decisions is too much for me, so if you can turn things into a routine, it is easier than if you have to solve each problem at the time you encounter it.
I have also lowered my standards tremendously for housekeeping. I worry about basic hygiene and things that affect my health, but cosmetic cleaning to make my house look pretty is a thing of the past. If I could afford a housecleaner, I would hire one.
When I move into my parents' house, they have laundry machines so I won't have to go to the laundromat, and they have a cleaning lady, so that's a couple of things that will be easier for me.
My best friends are online ones who live far away, so although they might be willing to help in practical ways, they can't. Some of them have their own illnesses to cope with, too. Meanwhile what most keeps me going is the emotional support I get from them, so I take that and use it to give myself a little more positive energy, and maybe I can motivate myself to try to do something I otherwise wouldn't. They also nag me to sleep enough, eat right and take care of myself. I would pick friends and family over domestic chores any day.
The hardest part for me is trying to think of myself as a disabled person, or to present myself that way to anyone, to ask for help. I have tentatively asked for a few small things before, and been rejected, so then I'm afraid to ask for anything major. People really don't think that we are handicapped by this disease. And sometimes it's not that I CAN'T do a thing, it's that if I do, I will pay for it big time. So it's hard for me to tell people "Sorry, I'm not able to do that."
I tried to resign from a club I've been in for several years, and told the president to change my status to inactive due to health problems. He laughed and said he hoped I was feeling better shortly. I don't think he believed me or took me off the list, even though I never make it to the meetings any more.
Sometimes I turn down freelance work by saying I'm booked up that day, rather than I don't do that any more because of my health. Otherwise if I get better in a few months, maybe I will be able to do it again, and I dont' want to tell people I'm permanently not available. But it's probably better for me in the long run if I really do give it up for good.
I do have to say, you are doing a lot already. You need some people in your support system who will encourage you to put your own needs first at least some of the time.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
As many of the above have mentioned, some churches have 'meals on wheels' programs for those who need it.
If that's not an option, maybe you could hire a neighborhood teenager to run errands for you, clean house etc. They can get a lot done in a couple of hours. Most don't charge as much, probably min. wage would be enough. A couple of hours here or there would be a help.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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