I want to know how how can I continue to do EVERYTHING??? I have had to become Mr. Mom, hence the name. I am trying to keep the income coming in - I farm - I need to work 7 days a week, usually at least 12 hrs a day. The house is a mess and I have to do dishes, cook, run errands, bathe the kids, laundry, etc. I do not mind helping out, as I always have. I love being a father and think I am a good husband and provider. But I am really stressed out.

The problem is, I do not have time to do all of this! My wife is doing nothing right now except sleeping and watching tv. Once in a while she will help out with a few things, but she says she is too sick and has incredible fatigue.

I LOVE my wife so much and we have always been a great team. I adore her more than anything. She used to work full time and do our bookeeping for the farm, played with the kids every day and always had time for the extras. I have come to realize that our life will never be like that again.

Please help me understand this incredible fatigue she describes. I am tired too, but work has to be done. Sometimes I wonder if she is just taking advantage of the situation to take a break from working. The house is really a disaster and I have to work extra hours to pay for medical expenses. As if the money situation isn't bad enough, I hate to see her so miserable.

Please, if anyone has any tips on ways to make a household run smoother - balancing work and housework and caring for the kids with a sick mommy/wife, I would appreciate your advice.

Welcome to Lymenet!

First, I would just like to say how wonderful I think it is of you to take on the added responsibilities that you have with work, and home. Not many would be able to handle this.

I would also like to applaud you for trying to understand what your sweetie is dealing with. That in itself is worth major kudos!

I feel your frustration, really, I do. And I can completely understand your not getting what is going on with her. Most days, it is difficult for us with this disease to understand and get what is happening with our own bodies.

Perhaps, you can think of it this way...

Remember a time when you had a very bad flu, now, add your worst hangover, then think of what it might be like with cotton in your head, place on that sore muscles after a marathon, mix in the fear of not knowing how you are going to feel from one moment to the next, or if you will ever regain your stamina again, and maybe, just maybe...you might begin to catch a glimpse of what a GOOD day feels like.

``For better or for worse'' is a loaded commitment, for we never know when those better times will turn to worse times. But, try to hold on to the faith that they WILL get better again...it just takes so much time and patience.

Is there any family that may be able to help with the workload a bit? Perhaps, a church group or friends?

I would like to leave you with 2 links.
One describes what it feels like for your wife, and the second, I hope, will offer you a sense of hope.

Something to share with friends and family members: http://flash.lymenet.org/ubb/Forum3/HTML/008886.html

Success Stories: http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Please hang in there, and know that you can always come here for support too,

My best,
Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

I totally understand the frustrations that comes with having a sick spouse. My situation is a good bit different than what you have described, but none the less taxing on every aspect of life.

In my situation I am the Mom, my husband has been sick for about 7 years, (not lyme related) We have 4 children all currently under age 16. If you take that back 7 years, my children were pretty young when my husbands health deteriorated.

I think the reality in your situation is that you cannot continue to do EVERYTHING. YOu need to make a plan to help you cope. Burning yourself out will benefit no one. (I think I should be taking my own advice here!)

You did not say how old your children are, wondering if they are capable of pitching in more so than they have had to in the past? My kids don't help out as much as they could, but that is my fault at this point.

Is it possible to find someone that could help out with the housekeeping detail?

Do you belong to a church that could help you deal with some of the crisis you are facing?

I think your love for your family will sustain you in this situation. But that does not always mean it will be easy. As much as I love my husband coping all these years has been challenging. Remember you are not alone.

Outsiders tend to overlook the hardship the spouse of a sick husband or wife encounters during the course of an illness. Sometimes that is frustating to me. Somedays, I feel I am at the end of my rope and all I hear is "How is Mike doing theses days?" Make sure you take time to take care of yourself, and allow others to help out. You as well as your wife and family need the support of family and friends.

God Bless,
Jane

Her friends have really made me mad. I guess we have found out that they weren't really friends maybe. One called her after her diagnosis and said, "I really want to come over to see you tomorrow if that's ok." So my incredibly sick wife tidy's the house - took all her energy- and even did her hair that day. Her friend didn't show and hasn't called since. Nice, huh? Another one keeps calling and saying, "I should come over some time" or "We should get you out of that house sometime." But they never do. It makes me sad. Another friend told that ran into her at the Dr. office told her "You look great, you must be better." Well, my wife has lost 20 lbs in 6 wks due to beginning treatment and I think looks like dung!! She didn't know how to respond because she doesn't believe in complaining about her symptoms to people. She says, "It's my problem, not theirs. They don't want to hear about my illness."

Family all live out of state, so we are on our own there. The church is aware of the situation and has her on the prayer chain, but they are not known for helping out much with things like this. Perhaps there is someone but I just don't know.

The brightest thing that has lifted her spirits was that a total stranger brought us over a meal one night. My wife cried and cried. She couldn't believe that someone would do that for her and she was happy because she knew her family could use a good meal about then. Weird thing is that SHE was always showing kind acts towards others like bringing them pies and meals during desperate situations.

I have thought about getting a housekeeper but I am not sure how she would react. I know she already has mommy guilt and feels bad that she doesn't have energy to do what she used to.

I'm so sorry to hear about your situation and your wife. Please know that all of us have gone through the stage where people who were once our friends turn their backs and head for the hills when we become sick.

Unfortunately when you become ill you really see peoples true colors and find out who your true friends are...If you're lucky there will be a few left.

If not, like me, new people will come into your life and these will be true honest freinds.

The truth is people cannot deal well with illness. It makes them think about and face their own mortalitly...

It is not your wife it has happened to us all...I believe this is the hardest part of the disease..

As for her pain and fatigue it is very real. It is not the same fatigue you feel after a hard day of work. Her fatigue can be incapacitating. A walk to the bathroom can be put off for hours because she doesn't have the energy to even get up, no matter how badly she has to go.

It's funny but we don't ever say that cancer patients are milking it(no pun intended). Why should we ask if people with Lyme are playing up the fatigue.

You know your wife, you've been married for years and she has always worked hard. Don't assume she doesn't feel tremendous guilt for not being able to help out like she used to.

This I think is one of the most difficult aspects to deal with for myself. If she has gaged her self worth on working hard her whole life then she is really having a hard time dealing with not being able to do more.

I'm sure what she does do is even a stretch from what she has energy for. Don't forget she is not just on the couch watching tv. She is right along with you mentally doing all the housework, cooking, cleaning, feeling guilty, feeling exhausted, feeling sick, in pain, sick from antibiotics, feeling useless, misunderstood, adandoned by her friends, creating antibodies to heal, fighting a major infection, and scared that this will never end.

She also feels tremendously bad that you have to work so much. If she could take it all away she would, I am sure. But imagine feeling that exhausted that you have to feel all of those unpleasant things &don't have the energy to help out.

It is not a pretty trade off...

So I commend you on all of your hard work..Maybe you should make a list of things that are neccesity and those that are not.

Now is a time to only concentrate on nessecities.

Is there a Lyme disease support group around? Maybe someone would pitch in from there? Your church must have some helping hands to help prepare a few meals a week and bring them over. You have to ask, they won't know if you don't ask...

Do you have any employess whose tasks could change slighlty to help you out with certain chores?

YOu might let your oldest child do the laundry a little they obviously want to help out. It will probably make them feel good to help...

It is a difficult situation for everyone but just keep in mind only focaus on what has to be done now not the extra things or you will wear yourself thin.

Things can always be caught up on when your wife is feeling better..

good luck...
daniella

Sounds like your having it really rough. I'm soo sorry. It is nice to see your perspective.

My husband has only complained once or twice in the past three years.

Luckily I am getting better. ( I hope ) except this week is not good.

Just know that one day she'll take care of you.

Our house is a mess, and he sees me lying in the same spot he left me in on many days. He works an 11 hour day and I am not a pretty sight to come home to.

I see you don't have your email address noted. If you would like his email address for mutual support, I asked him and he would be happy to chat with you. I think it would help you both. Actually, he was hoping to find someone who was experiencing his frustrations.

Email me if you would like.

Godbless, hang in there, we won't be sick forever.

he gets mad cause i forget everything.......i leave the bills to him cause i can't remember to pay them or what i paid or much of anything

he is so stressed and doesn't know how to deal with me.........i see about 4 different doctors in cluding my lld and we can't afford it

Has your wife been checked for co-infections? Is she seeing a lyme literate doctor?

The correct medications and time will help....
it is a slow process.

For me..........I get mad.........at myself.
I rest and then try to accomplish at least one productive thing a day...........but there was a time I couldn't get off the couch!
My paperwork only gets done when I feel I have a brain (not too often).

Listen:
Your children will survive if they just get peanutbutter and Campbell's soup for dinner.

Punt the kids rooms--it is o.k. if they are dirty. Make the kids just eat in the kitchen to contain the mess.

If you don't HAVE to do something then don't.

As long as your house is not nasty it is o.k. for it to be messy.

This will pass. It is just a really difficult time. and like others have said--you truly find out who your friends are.

My husband suffers much more than I do and we get frustrated with each other.

Hire the cleaning lady--your wife will probably be really relieved--ask her if it would be o.k. She isn't going to be going out and spending money on other things so hopefully it will all balance out.

But please hang in there--you are not alone.

Here is a caregiver group I thought you might be interested in:
http://health.groups.yahoo.com/group/loveyonlymecaregiversupport/

Best Wishes,
Cheryl

I am blessed to be married to a man just like you. He has complained little and loved a lot. He has carried the burden of this illness like a man.

I have to agree with many of the suggestions offered. Do give your children chores to complete. I understand your concern about making them feel like they are running the house, but continue to do what you are doing. They are old enough to set a table, pick their toys up and their rooms, make their beds, even fold laundry. They could even sort the laundry for you (great preschool activity for the 4 year old - classification is one of those pre kindergarten skills they encourage LOL!). I don't think those chores ask a lot and help to build character.

As for outside support, definitely look into a housekeeper. I had one many years ago before I was sick and actually used to pick up before she came!!! But if I didn't have family around to help me when I was at my worst, I know we would have had someone come in to help with the cleaning. Tell your wife you are doing this for her, so that she can save her energy for special family time and not 'waste' it on cleaning. She will love you for it!

Go to your church's pastor and ask for help. Sometimes you just have to be real obvious and seek it out and I will bet you if people know they can be of service, they will.

Keep your meals simple - cook a chicken or a roast, stews, soups, spaghetti etc something you can get a couple of meals out of. Have your kids help make their lunches the night before to save you a little time. Or have them buy the school lunch if it's not too yucky LOL!

One of the saddest things about an illness is that you really learn who your true blue friends are - there's a weeding out process. Many people have a terrible time knowing what to say or do when a person is sick, so they just stay away.

If you need some 'guy' support, feel free to email me to talk with my husband. He's been thru this for 4 years now. It hasn't been easy, but we are surviving. The one thing that probably annoyed me the most was that he was a lousy wheelchair driver! That really motivated me to get well!!!!!

I'm a dad as well, but my situation is a little different. My teenage son is afflicted with lyme. Last Oct.04 he was playing on his freshman football team and started to experience leg, chest, arm pain, and headaches.

By November he couldn't walk wihtout the aid of a walker. He was 14. If a 14 year old is debilitated, you can imagine what your wife experiences. Fatigue ? He'd sleep 20 hours a day.

However, lymies can also experience insomnia. Either they're up till 4 a.m. or they sleep 20 hours a day.

If she's being treated with abx she will start making strides to better health, and in the interim if you have a messy house............big deal. Doesn't sound like her so-called friends are busting down the door to help anyhow.

Having a housekeeper come in once a week, sounds like a good idea. Having the kids pick up after themselves, gets them an allowance. Cooking ? Make about 3 or 4 meals on sunday, or an off day, and freeze them, then pull them out for chow time.

When your wife is up watching TV, place a cutting board on her lap, with a loaf of bread, sandwich meat, peanut butter, jelly,etc. and have her make sandwiches you can keep in the frig when the kids are hungry, they can grab one.

Maybe the housekeeper could make several meals ahead that can be frozen. Casseroles, spaghetti dishes, etc. that can be thrown in one container, thawed, and heated.

My husband is totally there with you Mr. Mom. He comes home from work and I want to lay down and he just doesn't understand why I am so tired when I've been home with our child all day.

Next time we argue I will have to tell him that at least he's off of 'work' 2 days a week and doesn't have to work 12 hr days! LOL - just kidding.

That has really got to be hard on you! That is alot of work - constant work - and then to have to do everything at home....Whew, you have got to be really tired and you definitely need some H E L P!

Hire a housekeeper/cook/cleaning lady ASAP. You need a break, the kids need a break and your wife really needs a break (whether she admits it or not).

Let me give you an example of what it is like with my daily life and Lyme. My life is basically one step at a time. If you haven't read the spoon theory, you need to. It really helps explain what my life is like. I will put a link to it at the bottom of this:

I wake up feeling like I got no sleep. (I have problems falling asleep - usually not until 3-4 AM) The best way to describe it is that I feel like a zombie. I really do. It takes everything, and I mean everything, I have in me at the time to get out of bed - yup, just to stand up. My brain is usually very fuzzy for a long while after I wake up. And sometimes I have a horrible headache for awhle. On the weekends, when my husband is home, I can easily sleep to 2PM or later.

Sometimes I am so tired when I wake that I know there is no way I will be able to drive that day. And sometimes I have a headache that will last all day.

I feel overwhelmed the minute I wake up. I need to take care of our child, take the dog out to the bathroom and feed her. I know it makes absolutely no sense whatsoever to feel overwhelmed by such simple, every day tasks but I do....I can get nervous about this sometimes. Overwhelmed and nervous are totally different feelings for me, by the way. I hate feeling either but it seems that I am always overwhelmed and/or nervous about the smallest things.

I feel totally rushed by the time I can sit down and my child is watching tv.

Eventually it is time to take a shower. This means I have to go upstairs - which is very tiring for me and sometimes painful depending on what pain I am feeling (and where) that day.

Sometimes a shower will wear me out for the rest of the day. I know it's just a shower but it is very tiring for me. God forbid if I am in pain - let me tell you, when it hurts to lift your arms high enough to take off a shirt - it really hurts to take a shower! And shaving is usually out of the question...

Sometimes I almost fall over in the shower because my balance is so bad. And I pretty much fall over getting dressed. You don't realize how much you need balance until you are trying to put on your sock standing on one leg.

I usually do one errand a day. That is about all I can handle. I usually feel extremely rushed and overwhelmed just getting out the door, much less getting into the car, driving to the location, getting back out of the car, going into the store (bank, post office, mall, etc), shopping, paying for it, walking back to the car, getting back into the car, driving home, getting back out of the car, brining myself, my child and packages into the house, putting the packages away, letting the dog out to go to the bathroom, etc.

Yes, I am exhausted by the end of all that. Like I said, everything about my life right now is literally step by step. Each thing I need to do is one step at a time.

I specifically go grocery shopping at a particular store because it also has my bank inside (so two errands in one). I try to do short cuts whenever/wherever I can to make my life easier.

Just making a grocery list can be difficult. It can get confusing to me. And even when I have a grocery list in my hand, I will forget some of the items on it. Or will forget to use the coupons that I have in my hand when checking out. It's terrible!

And trying to make sense of a bill? I have gotten confused trying to write out $29.95 on a check. I can forget where I put a bill, I can accidentally throw it away when it needs to be paid, I can totally forget to mail the bill or mail it w/out a stamp, etc....

Now add symptoms into the mix:

Sometimes I have severe pain (muscle spasms, muscle twitches, eye pain, headaches, charlie horses anywhere/everywhere, what feels like pulled muscles, bone pain, joint pain, chest pain, etc. There have been times where I have not been able to get up out of a chair or bed w/out my husband's help).

Sometimes I have visual problems (over-extended visions, lack of night vision - I do NOT drive at night, floaters, spots in my vision, lines in my vision, severe blurriness, etc).

I also have the odd problems (cold hands and feet, chills, severe night sweats, problems sleeping, problems not getting enough sleep, sore anywhere I'm touched, sore throats, trembling, dizziness, lack of balance, air hunger, etc).

Now add in memory/concentration problems (I will forget my husband's name, get lost driving home, forget to pay a bill or to mail a bill, finish reading a book and not being able to remember a thing about it, forget to turn the oven off, forgetting words - having to describe a table instead of being able to say 'table', get disoriented remembering how to get somewhere like the grocery store, forgetting how to use/do daily things - like how to turn on the dishwasher, how to start the car, where to put the clean forks, etc, etc)

I have had over 41 symptoms so far. Take just walking to the car, climbing the stairs, writing a check, remembering to pay a bill, using the stove, driving to the grocery store, etc - with all the different symptoms I've mentioned - and you can see why daily life can be so difficult.

Now add in the stress, the worry, the frustration, the sadness, the guilt, the pain and how scared you can feel at times - it is a burden for everyone involved.

By the time my husband gets home, I am totally exhuasted. Just mentally and physically exhuasted. Forget making dinner - usually he makes something. We keep pizzas stocked in the freezer for the nights he is really tired.

After my son goes to bed, I don't do much. Just watch TV or am on the computer. I wish I could go to sleep (I'm so tired) but I know I will just lie in bed hour after hour.

Usually around 1AM I will head on to bed. But the majority of the time, I just lie awake until 3-4AM. Then it's time to wake up and I feel like a zombie - the new day starts....

Now, what I just described is a very good day - where I am not in alot of pain. There have been days where I haven't been able to do anything but get out of bed because I hurt so badly. There have been days where I would have cut off my arm if I could - the constant pain was that bad. Luckily, it's been awhile since I've had to deal with that (knock on wood).

I do feel really guilty that I can't pull my weight with my husband. I really do. But I know that I do my best every day. And I make sure (or try to) to let my husband know that I really appreciate all that he does for me.

Now that my husband has been diagnosed with Lyme, I think he understands more. He got Lyme from me and has started showing signs. Hopefully he is being treated early enough.

Well, here is the link for the spoon theory:
http://www.butyoudontlooksick.com/spoons.htm

Your wife is very lucky to have a husband and father that cares this much!

Lymenet is a great resource and support system. You have come to a great place to find info and support.

First, I want to thank all that have offered for me to privately email their spouses for support - I do appreciate it. I will not be able to do that, however, because I really want to respect my wife's privacy here and don't want people to figure out who we are.

Next I want to answer some questions. Yes she is on antibiotics and she is seeing an LLMD out of state now. She thinks he is a good doc.

By the responses it appears that many other spouses have similar feelings and that my frustrations go along with chronic illness. This is the first chronic illness of our family so noone really knows how to deal.

I want to thank everyone for their thoughts and sharing what it is like to have Lyme. My wife has never explained it in great depth to me, possibly because I have never asked what it really feels like. I will do that now. I really liked the posts about "but you look good" and now feel terrible for judging her some days based upon how she looks. I know now not to say those things.

I did a lot of thinking while in the tractor today planting. I feel really bad for accusing her of "sitting around" all day, because I know it is not her choice and she really doesn't just sit all day.

Instead of me coming home and telling her all about what broke outside and how the planting is going, I asked my wife how her day went and this is what she told me:

"Oh! I had a pretty good day today. XXXXXXXX (4y/o)and I decided to make cupcakes. He had a great time with cracking the eggs. I took a picture of him with frosting all over his face. (My wife is grinning ear to ear.) Sorry about the dishes, I didn't get them done yet. Then I swept the floor and we read a book before nap. I think I was tired today because I don't remember the ending. I called the Dr. office for med refills and then your aunt called and we talked on the phone for a while. Son and I walked to the end of the lane to get the mail and back and the sun was shining. It was a pretty day outside. That's about it."

Then I asked her, but how are you feeling, not what did you do - and she started to cry. She said that she was hurxing late afternoon and she had double vision and felt like she couldn't stand up without hanging on to the wall and yelled at the kids for being loud. She said everytime she wanted to sit down the kids needed something. She said her chest was hurting(?!?!?!?) and she felt like she could puke at any minute. I think that I have contributed to her guilt about not being productive by always asking her what she did that day, but I should have been asking how she felt instead.

So, I helped her into her pjs and tucked her into bed and gave her a backrub and xoxoxoxo. Within one minute she was snoring so loudly that I was afraid she would wake the kids so I shut the door!! LOL. She truly was exhausted and after reading about the fatigue everyone with Lyme experiences, I will now be making her try to get more rest!!!!

I think I will gently approach the idea of a housekeeper tomorrow at a "family meeting". I will also discuss with our daughter and son the need for their mother to rest and get well instead of doing the cleaning and cooking so any of her energy is spent on cellular repair. (Yes, I have been reading a bit.) I have ask my wife if she can make a list of housechores broken down into categories of MUST Do, and would be nice to do. Then we can let the kids pick what they want to be responsible for.

EVERYONE gave great advice and practical tips about how to make things go smoother. Maybe with these ideas, my wife and I can brainstorm some more ideas. Thanks for being a great sounding bored. I didn't want to approach this with my wife because I didn't want her to think I was complaining.

I know that we will make it through this.

Hoping for healing for you all!!

Like the others said....she feels really guilty and would help out if she could...she sounds like she prides herself on a clean home and doing her share...it would actually be a lot easier to be able to do her share than go through lyme disease....lymies don't have a lot of time on their hands....they just cant will their bodies to do their bidding! Hang in there it will get better! you are not alone....this too shall pass but it feels like forever!

hey you guys...I have an idea for lymenet...could we have a "spouse's forum" or caregivers forum" in addition to medical questions, general support, etc...???? it could be for parents, relatives, spouses, friends, children of people who are sick with lyme. it is really as hard on them and does affect the whole family!

I know this is just hell on my poor husband. he lives on the computer because that is what he does for work....i know he'd appreciate other spouses to relate to.

I didn't have the help or support that you are offering your wife. Once I became stablized this year, I left my boyfriend and have moved onto a relationship with someone

who actually understands I didn't ask for this, or wish this, and that lassitude and laziness are two way different things.
It took my ex boyfriend two years to learn what the bacteria was that causes lyme disease. It took my new boyfriend two days

to not only learn that, but MUCH much more, on his own whim and own accord. Its nice to know there are more guys like you out there!

I have kids myself: all three of them, and two of them are very disabled : one mentally, (mental retardation) and one physically- although it hinders her NONE - (kidney disease, etc)

When I got smacked with this illness out of the blue, I actually contemplated giving away my children to my ex husband like they were old used up cars. I'm glad I hung in there.

I have a few suggestions, that you can take with a grain of salt:

1.) 15 minute sweeps. Let the messes lay. At the end of the day, engage your kids in a "15 minute sweep". They have 15 minutes to pick up as MUCH messes of their OWN as they can. Whoever picks up the most gets $$ or some other prize.

Once you had child age 4 the money, for example, sneak to child age 9 and say "here is some money for you, but its our sweep secret, becasue you worked so hard to". That way, they think they are BOTH competing ( kids love that) AND they BOTH get a prize. That way, next time, they will BOTH work

hard on their 15 minute sweep. Do it every night- if you can. I know the money can get pretty darn tight with lyme, so perhaps it can be- whoever cleans in 15 minutes gets to pick out a movie, or bath last, or first, etc.

2.) Do you have an empty room in your house? I actually equipped an empty room with a sandbox- in my house. My EX husband nailed washable boards to my walls with those markers that wipe right off. He also yanked the carpet and stashed it, so I can save it.

Basically, the room is a disaster- its made for kids, BY kids, and they can do whatever they want, in that room. You can ALSO equip it PRETTY cheaply at radio shack with some monitors, even video ones and your wife can watch them on it.

3.) Have you tried any local colleges for farm hands? Or anyone that may be studying , Im sorry, I don't know the word- ranch handing or whatnot? You can laugh now. I'm using a college intern for child care for my disabled son this year. Its free for me, and learning for the student.

4.) NEVER let the notion sweep YOUR head or your wife's head that lyme is permanent. Lyme hates certain things: antibiotics, heat, saunas, hot baths- becasue it all kills it. Lyme LOVES stress and negativity. They both suppress the immune system, and the mind alone can make sure one does not recover.

Your wife WILL get better. Yes, she will. Its just a very very slow process.

My daughter was 4 when I got sick, and my oldest son was 8. My son understood lyme, my 4 year old did not. The good thing is, if your 4 year old is closer to being 5- he/she will be in Kindergarden next year, right?

My son got in the swing early of taking care of his sister. Granted though, I had family help, and alot of it, including free weekends because they go to their fathers house.

Look aroudn at local lyme support groups too. There are an awful lot of recovered lymies out there that would just love to get their hands on some sweet kiddos to help out. Ya never know what you can come across.

Can you afford daycare? or a camp?

Honestly, for me, the messy house I could care less about, the children were ten times harder to deal with. Sure, they are my flesh and blood- but I am also theirs, and at my sickest point

my blood was worthless, my entire body useless and just the sounds of them laughing was enough to make me cry at times.

And as someone mentioned: quick food is awesome for kids. They love it. My mother used to come over and cook food on the weekends and stash it in the freezer for the upcoming week.

Do you have any older nieces or nephews that can come over for the summer since school will be getting out? I took my niece in for two summers, this summer will be three.

Though she was only 13 when this started, I would have died without her. Sure, another mouth to feed ( and a big one at that- teens can eat alot) but she did help me. Granted, I had to send her home a few times because she

got on my last lymed nerve.

Again, I applause you for caring enough to go so far as to post on here. Alot of men don't do that, and in my book, they don't equate to men. As stated, my ex boyfriend did everything but help. He watched me lay in bed and rot. He was too lazy to get my medicine

and when he did, it was the wrong med anyway. I took care of myself, and my family, and even at times, my kids helped.

BUT, now Im 90 percent better and I have my life back.I have alot of catching up to do with my kids, but I'm grateful regardless.

Had it not been for the love of my kids, I would have died. Your wife has that AND you. She's gonna be just fine.

You said you don't want private emails for support because you want to respect your wife's privacy, and you don't want people there to know who you are.

Are you embarrassed by your wife's illness?

Forgive my boldness, it's just that so many people here are chomping at the bit to help, and I don't know that we've seen a position like this.

quote:

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Originally posted by cave76:
I second Michelle's post!

Then I asked her, but how are you feeling, not what did you do - and she started to cry.

That was the best thing you could have possibly done. Many Gold Stars.

cave76

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I third it! With all that love and special hugs, she will recover much faster! Trust me!

You're doing a great job! Hire a housekeeper....even every two weeks would help alot. And I agree it would be great to get someone to freeze a few meals.

Onward, forward!

Now - If you're waiting for friends, neighbors and church members to show up with casseroles and vacuums - don't hold your breath. People have to be told there's a need and what is needed. They're not going to just do it on their own.

Call one of her "bossiest" friends and explain to her in detail what Lyme does to people. Let her know how abandoned your wife feels - how hurt she's been. She doesn't understand how her friends could turn their backs on her and her children the way they have.

Let her know you don't want anyone to feel obligated but the kids are still too young to cook and they need to eat hours before you're able to come in from the fields. Your wife is simply too weak and sick to cook most of the time, let alone shop for groceries. She can't eat much but she needs good nutrition. Ask her if she thinks she could talk to some of your wife's friends - let them know how much she needs them. Tell her you'd be glad to cover the cost of it, groceries and their time, but even just one hot meal a week would help tremendously.

Also, call your pastor and his wife. Let them know your family isn't looking for charity but while their prayers are very much appreciated, your family needs help. Describe what Lyme does. Every member of your family is isolated and you need to get some support soon.

Your wife is probably too proud to have anyone from her friends or church clean the house so hire it done. Once it's cleaned up well, it won't be that hard to maintain.

Good luck to you!!

Samento (most important) - 1oz liquid 5 drops 3/day. Boosts the immune system, anti-inflammatory, antioxidant, kills bacteria.

d-Linolate - antibacterial, 4/day

B-complex Stress Capsules (Twinlab)- 2/day - tremendously helps restore fatigue.

Vitamin C - 1000mg 2/day - high quality, high absorbtion. anti-inflammatory, antioxidant

Multi-vitamin 1/day

You may also want to try Emer'gen-C packets 2-3 times a day

Last is exercise. Start out by having her walk a mile a day. Have her do it early in the morning. It will loosen up all the sore joints and muscles and she'll feel better the entire day. Have her work her way up to walking a brisk 2-3 miles a day

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Originally posted by lhm312:
Mistermom, maybe it's not our business, but I am truly puzzled about a statement you made.

You said you don't want private emails for support because you want to respect your wife's privacy, and you don't want people there to know who you are.

Are you embarrassed by your wife's illness?

Forgive my boldness, it's just that so many people here are chomping at the bit to help, and I don't know that we've seen a position like this.

Godbless.

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Oh dear, I should have been more clear. I certainly am not ashamed by my wife's illness. If someone asks me how she is or what is wrong with her, I tell them about her Lyme. Which is, of course, followed by education about tick bites and that we DO have it in our state, misdiagnosis, etc, etc.

The reason why I don't want to list my email is because it is used for my business and will reveal my identity on Lymenet. I don't really care about my identity here, but you will be able to figure out who my wife is from that information. Again, I simply want to respect her privacy. I hope I have not already given away too much with this thread. I know she hasn't been on here for a while so she hasn't seen this yet.

I really didn't want to go into this, but when my wife first came to this forum she had her email displayed with her name. She began to receive very frequent contact from someone who is also in our state. This person was asking very personal questions like tell me all the drs that have misdiagnosed you, what town do you live in, what are your kids names, what is your occupation, who is your new Dr, how old are you, will you get on disability, and so on. She gave my wife inaccurate information. This person then began to forward a million emails to us. It was very creepy for my wife and she finally told this person not to email her again. Well, then this person started to call and left two messages on our answering machine saying she wanted to meet us! My wife fortunately did not give out any information to this person and has not returned the calls. We still don't know to this day how she figured out our number.

My wife told me that she removed her email from this forum, so I thought that I should respect her desire for privacy. Sorry if this is confusing to anyone, but we just prefer it this way. I see that there are many others that do not list their email addresses as well.

*** Cave - Loved the spoon story!! So that's what she was talking about!!! I overheard her on the phone telling someone about how many spoons going to the mall would take. I thought to myself, "She's bonkers, must be those lyme boogers driving further into her brain." I should have asked about it sooner. LOL.

~~~~ Update: Didn't have the family talk about the housekeeper yet but I am asking around to get some names and recommendations first that I can take to her when we discuss it.

I emailed her mom to give her an update on my wifes status and she wants to come and stay for a weekend to cook and freeze meals. She is not physically able to do any cleaning herself, but man can she cook. My wife thought that sounded ok and said she had been trying to think of ways to make life a little easier around here too!!

~~~KIDS - I found out about this agency that refers people for crisis child care - and pays for a certain # of hours free. We agreed to look into this so that once a week or as needed the preschooler could go to a qualified child care place for the afternoon so my wife can sleep or whatever she needs to do. How awesome is that?????? He has been going for short tractor rides with me but I know that is not the best because it can be dangerous when I am in a hurry to get my work done. Plus he doesn't stop talking - ever!

YEP, the youngin' will be in kindergarten next year. Full days every day. WOO HOOOO!!!

Just wanted to thank everyone again for ideas and support and understanding. I pray that maybe another scared and frustrated lyme significant other will read this thread and learn from it too. Hope to have a good visit with pastor this weekend.

To all you Mammas out there have a Happy Mothers Day!!

just a little hope for you - last year i didn't have the energy or stamina to walk across the room. i felt like i was dying, i really don't know the words to describe it. now i am much MUCH better, cook and clean, even garden. i am actually feeling enough better that i am thinking of a part-time job. of course some days are better than others, but for me, setbacks are fewer and farther between all the time.

my dad's wife has a debilitating back injury. he said one time (NATURAL) that he thought she might be putting on a little bit. i told him, "well, you can't feel another person's pain. she may well be feeling a whole lot more pain than she is letting on!"....

another thought - there are some resources for possible help that i haven't seen mentioned yet. you should maybe check into home health care - just a few hours a week could be a Godsend to all of you. your insurance company should cover it (?) also if you have a community action center they may have some advice or help. also, meals-on-wheels??

i get the feeling from your posts that you are simply feeling overwhelmed. of course you would be. i am very proud of you for what i 'pick up' here, the attitude to be hard on the problem, not the people. YOU will have good days and bad too, take care of you... venting here will help (believe me i know).

personally i have the feeling you just plain don't have time to do the emailing thing but there are a lot of good people here, and good info. for me it helps to just leave some 'stuff' here (mine is usually in OT) and spare the family Ha Ha!

you'll all get through this... [hug]

loribelle

I guess maybe I do have a couple suggestions. 1) Get a maid to help, maybe just have him/her do the laundry or help with one major task. Just coming home and seeing all the dishes done can feel like wining the lottery. 2) don't invite people over. We have parents visit for Mother's day this weekend and it practically killed me. They all wanted to offer advice but they didn't offer to do the dishes when they left. 3) Let things slide. Figure out what you can afford to not do and skip it.