Recently diagnosed with Lyme, Babesia and Bartonella. Getting ready to begin IV therapy next week after several months of severe nausea and no improvement and worsening neurological symptoms. I have a ten year old son and his stepfather and I have been married for six years. WHile my son has come downstairs in his pajamas to hold my hair back when I was sick, my husband has gone from sheepishly chauvinistic to unapologetically self-absorbed. After months of feeling lousy, and then months of feeling even worse after starting treatment I finally considered I might need to actually ask him for help instead of waiting for him to even wash his dish after he finished the dinner I made. I finally asked him to finish cooking dinner on a particularly rough day and he pretended not to hear me. I've managed to share maybe five sentences in five months about how I feel, what I have and what the treatment entails, and even those were met with eye rolling and throat clearing to let me know he didn't care to listen. He's offered the platitude that he's not as strong as me and his plate is already full because he works in a job that includes customer service and driving which means he doesn't care about anyone else's problems when he leaves work for the day and there's no way he's going to drive anywhere when he's done except home which leaves me to get to the doctors, fill prescriptions, keep food in the house and pick up our son on a quiet day.
My mother in law is retired and while we've been quite close, she too has politely implied that between bowling and bible study, she doesn't know where the time goes but she really looks forward to the day I feel better and she's praying for me.
I have, or thought, a few close friends and while a couple call regularly to say hi, not a one has ever offered to help out or even ask if I need a hand.
My Dad has been supportive but urges me once I'm better to avoid any more "self-inflicted" crises so I can live a less stressful life.
I'm all for pulling my own weight, old enough to know men are from mars, mothers are more nurturing and most people really just want you to tell you "fine" when they ask how you are but I feel like I've fallen down the rabbit hole...I'm so tired and sick most of the time the last thing I have energy for is an argument and I certainly don't have the stamina to issue an ultimatum to my husband to man-up - - any words of advice or wisdom from patients or caregivers?
Thanks, apologies if this sounds as self-pitying as I think it does...
Posts: 6 | From Northeast | Registered: Nov 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
First, it doesn’t sound like self-pitying, it sounds like someone that needs some support and a little help, and you have found the right place for that.
Unfortunately what you’re going through is very common, and most of us are going through the same process with (family, friends, kids, co-workers, spouses etc.) – Some of us for many, many years.
I understands your meaning of (men are from mars), probably true in some cases. When it comes to diseases like Lyme, I must tell you, it goes both ways.
Men without Lyme ignore the severity of this disease – As do woman ignore the severity the same way as men. Many relationships fail because we’re sick with Lyme - (WHY) – because we can’t function like normal people.
Many other illnesses people seem to become closer, and help in any way they can (not Lyme).
DaisyJane, I wish you luck with your IV therapy next week, I hope it helps and you start feeling better real soon!!!
Read this below it should help you understand a little better.
I’m hoping this helps you explain to your family and friends exactly what you're going through, day in and day out.
A Guide to understanding their struggle
It's never easy to understand what another person is going through no matter the cause. The saying holds true that you'll never truly know unless you walk a mile in their shoes.
In the case of Chronic Lyme Disease, there is much to be understood by not only those who know someone with it, but the person battling it as well. Let it be known that this article is by no means a sympathetic appeal, but to give an honest voice of reason to the person battling Chronic Lyme Disease who can't always find the words to explain the complexities of their circumstances.
1. They're not crazy, they're not lazy, and it's not all in their head (pun intended) This gravy train needs to stop. There has to come a point where reality takes hold and reality is that a highly evolved bacteria with lethal intent courses through the blood of a person with Chronic Lyme Disease; literally dismantling the human body in a malicious manner over an extended period of time until death becomes. That's reality. All other claims are a true reflection of a person's inability to reason effectively.
2. They're not stupid. They're under the influence So you have the distinct pleasure of having a conversation with a person with Chronic Lyme Disease. Did you notice that they may not appear to be as smart or possess the ability to articulate words much like they used to?
Were they not able to recall an obvious time or memory that you both shared? Did they come to a complete stop in the middle of conveying a thought? Don't worry, it's not them. Within their brain, there exists a bacteria releasing deadly toxins that are directly interfering with the nerve relapses of their central nervous system.
3. They're on a special diet You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal. Maybe even one that you cooked but not without your love, passion, and hard work. Here is the deal.
If your meal or a place you intend to visit for food contains either gluten, dairy, or sugar, they can't eat it.
They're on a diet designed to deprive their body of food that directly feeds the bacteria within their blood and provide the essential nutrients their body needs to allow their immune system to take hold. In a nut shell, they're trying to avoid adding more fuel to the fire here. Yes, this includes alcohol.
But no one is denying the food is just as delicious as the bacteria in their body is deadly.
4. They're not ignoring you. They're reeling It's been a while since your friend or relative with Chronic Lyme Disease reached out to you.
Let's be honest here, living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms, with a life that came crashing down isn't really something to show for; especially when these truths are in their face at all times and can't be ignored.
A person with Chronic Lyme Disease can't talk about a party they went to last night, or the degree they're majoring in at college, or the job they're working, or simply what they plan to do this weekend.
You want to know what they're doing this weekend? Here's what they're doing. They're most likely laying in bed or on the couch, in a both physically and mentally ailing state, wondering time and time again why they happened to be the lucky person to contract such a life altering disease.
Their aspirations have come to a complete stand still as their life now almost 100% of the time revolves around restoring it. Can't you just see how eager they are to talk about their life with you? They have nothing to impress you with.
Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is know as floating, and more than likely is exhausted in attempting to explain what they're going through to members of their own species when they themselves don't have all the answers.
5. Yes, they had to leave their job or drop out of college; or both. If a person with Chronic Lyme Disease can't even carry on a simple conversation, how does one expect them to delve into the untouched matters of the universe in their college course or the physical demands of a job. Such societal demands require either an incredible amount of critical thought or physical energy, both of which a person with Chronic Lyme Disease lacks greatly.
Chronic stress is usually a constant factor in college and work and it directly compromises the immune system. It's the last thing a person with Chronic Lyme Disease needs when they're aiming from every angle to remove a deadly bacterial infection. The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart.
6. Stop saying "Well you look healthy to me". Unless you have both microscopic and magnetic resonance imaging (MRI) for eyes, all you can see is the delusional exterior perfectly concealing the destruction that is currently in effect under the skin of a person with Chronic Lyme Disease.
A person doesn't need a visible wound to identify a debilitating physical and mental state of existence. You'll never find a person with Chronic Lyme Disease whose eyes constantly fall out of their socket because of their condition. Almost 100% of all the visible evidence needed to determine how severe or ill a person with Chronic Lyme Disease is resides within their interior. The debilitation can only be felt and truly understood by them.
7. Yes, they've been enduring it for many months or even years. Hopefully by now, you've made the rational decision to forget the ignorant notion that 3 weeks of antibiotics are all that is needed to remove Chronic Lyme Disease from the body. If not, you're going to have trouble understanding this one. From when the first symptom starts, until the day a person with Chronic Lyme Disease is in remission, many years may pass. Why is this you ask? Well it's very simple you see.
Between a combination of doctors who abide by outdated medical standards, ambiguous symptoms, inaccurate and deceptive testing, and when finally a diagnosis is clinically agreed upon because testing failed time and time again, treatment alone for Chronic Lyme Disease will take a minimum of a year because of the highly evolved complexities of the bacteria and possible coinfections. The entire endeavor is no over night fix. It is the ultimate test of patience.
8. Treatment makes them feel worse. The idea that treatment for Chronic Lyme Disease causes a person to feel worse is almost counter intuitive, but only to the unreasoned brain. You see, every Lyme Disease treatment protocol must contain either a non bacteria-resisted antibiotic or a supplement of some kind that boosts the immune system in order to effectively eradicate the bacteria.
Got it? Ok. Now when the Lyme Disease bacteria is killed by either the immune system or an antibiotic, toxins are released from the outer member of the bacteria, causing a person with the infection to feel 100x worse than your worst hangover; or worst flu if you don't drink. These endotoxins flood their internal organs and cause what is known as a herxheimer reaction within the body.
If a person with Chronic Lyme Disease kills off too many of the Lyme bacteria in their body at once, the herxheimer reaction can become so severe that it can actually kill them.
For the record, the severity of their herxheimer reaction is a direct cause and reflection of their mental and physical state that day.
9. They don't have all the answers. It's human nature to inquire about a friend or family member whom you know is not feeling well. You yourself want to understand what is currently disrupting their health and if possible, help them along and expedite the healing process even if it's just by a few good words.
When confronting a person with Chronic Lyme Disease for answers, you will find yourself leaving the confrontation with less knowledge than you had expected to leave with. The reason it that they don't have all the answers nor do they remember the few they have due to their faulty memory.
This also includes a timely explanation of why their life is not adhering to the exceptions you may have had for them. They're currently struggling for truth and answers as they're not easy to find. Try not to make them feel like they owe you more than the truth.
10. They're not bipolar. If you find yourself around a person with Chronic Lyme Disease often, you'll notice that their mood or condition changes quite frequently. One day they're happy, feeling great or coming off quite intelligent, and the next day they're sad, depressed, irritable, or feeling physically horrible.
Though these continuous fluctuations in a person with Chronic Lyme Disease may lead you to believe there is something else wrong. There isn't. This is actually quite normal because their bodies have been biologically hijacked by a highly evolved bacteria with the intent to kill and cease their biological function.
I'm a spouse--and a caregiver when my husband's in a rough phase. Your story of your 10-yr-old helping you while your husband pretends not to hear is heartbreaking. You are in no way self-pitying!
You're pulling your weight, caring for your son, and carrying your husband's weight too. What you're doing is much harder than a full-time job.
I don't know if this is true for you or not, but often the spouse who's sick is financially dependent on the healthy spouse. And in some cases, healthy spouses seem to use their economic power as leverage in the relationship. Spouses of either gender: some men are from Earth, not Mars!
I understand that you don't have the energy to demand change in his behavior, or to consider a more radical change.
But doing all the work to maintain a household of 3 when you're this sick is taking a toll on your health. This may well get worse when you're on IV therapy. Others on Lymenet will probably let you know what IV treatment has been like for them.
You may just be unable to continue to do all of the tasks you take care of. You're not arguing. You're not giving an ultimatum. You're just unable--period.
Posts: 431 | From New England | Registered: Dec 2011
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Thank you so much - what a poignant and simple explanation - though I imagine that the people willing to take the time to read it are probably the ones who already understand :) As sick as I am of being sick (even knowing the time frame is minute compared to what so many others have/are facing), I'm even sicker of trying to pretend like I'm not sick or spend what little time I can find that I am home alone to give in to the overwhelming and constant craving to just lay my head down and not move.
I don't begrudge a minute of the time I spend taking care of my son - I don't even mind going to the doctor's alone or recognizing that my husband will never be the one to ask me how I'm feeling, physically or sometimes worse, mentally and emotionally but I would like to be able to summon the strength, or whatever foreign language everyone else seems to be speaking and have it be ok - for ONE day - to say, as a matter of fact, I do not feel fine, and no, I will probably not feel fine in an hour even though it's really a drag that I don't just snap out of it and to my husband, if you think it's possible that you're more sick of my being sick than I am, maybe you should get tested because something in your brain isn't working right...
I guess I'm feeling like I'm running a marathon on a treadmill but I think I could make peace with the idea that the scenery stays the same, and the effort will eventually be as rewarding later as it is excruciating and exhausting as it is now, if I could at least run (or crawl :) at my own pace - right now it seems as if everyone I know is taking turns jacking up the incline and/or revving up the speed so I can finish already and get back to making them feel better.
I've worked awfully hard at my marriage, and the other relationships I've held dear, to even contemplate the idea of the toll this could take but then again, in those few moments of stolen time I do wonder how hard it could truly be for the same people I would willingly climb a mountain for to show some of the kindness and compassion your post to a stranger did -
Thank you again, and my hope that you are well -
Posts: 6 | From Northeast | Registered: Nov 2013
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I feel so sorry for you. I could tell you some real horror stories of what I have been through.
I finally got to the point where I said oh sorry your clothes aren't clean? Gee they're still laying in the floor...must have missed them....oh no beer in the fridge...sorry wasn't on my list. You didn't get your sisters phone call..oops on my phone maybe she should call you on your phone...
It's denial and that takes all forms. Some say it's because they don't want to admit they can't help but me...personally I believe it's just because they don't give a Damon.
Sorry to be so negative but illness is a great eye opener to the person you married.
You will face some hard decisions. And think about what this is teaching your son.....
I really feel for you.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi, You’re right, most people without lyme would not read this information, they just don’t believe it’s true.
You sound a lot like me, I’ve been at my worst for about 7 or 8 years, and I’ve never had any support from outside of this web-site.
I feel your pain just like others here, all we can do is try and help each other the best that we can.
These diseases cause our brains to do funny things, I’m sure you know what I mean, don’t ever give up!
I have always believed in these examples – Good diet, lots of water, keep positive, try and keep active….most of all you need to exercise, whatever works for you. The first couple of years for me all I could do is take walks (everyday), and yes, it really did help.
Before I got sick I worked out at the gym all my life, at least 4 or 5 days a week (weights & cardio). I’m back to working out again, and if I skip a week I feel much worse. If you’re able to start out by taking a walk, I think you may feel better mentally.
I hope your husband and family comes around, but if they don’t, let their ignorance and unwillingness to learn what you’re going through hold you back from getting well. It sounds like you’re great mom, keep your strength up so you can enjoy all that you can with your son.
Again, keep positive, and don’t worry about what others are thinking of you, get better for you and your son!
DaisyJane, make it all about YOU, be strong, and get better!
Steve….
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Maybe it's the mood swings, but your post just brought a tear to my eye -
I try, every day, to put myself in my husband's shoes and appreciate that there is no way for him to believe what a joy it would be to get up in the morning and go to work or how it is to be too tired to reach out to anyone, but how incredibly lonely it can be to have no one reach out to you.
We are definitely struggling financially which carries tremendous stress under any circumstances - my husband is about a year away from earning his captain's license which should not only ease some of that struggle but allow him to leave the job he hates, but while I became unable to work full-time about six months ago, I have still managed to carry not just my weight but keep our heads above water as his income has always only covered about a third of our living expenses. I imagine what's different now is while before he felt free to take time off or quit a job if he wanted to, if he were to do that now, I am not able to go out and work more hours to compensate, I am out of rabbits to pull out of a hat at the moment. His car broke down two weeks ago, beyond repair, and even though I get up at 5am to take him to work and pick him up when I need a car to go the doctor's or willingly make due without a car any other time, he is angry that he has to work full time and share a car, his thought is he can't have what he is entitled to because there are enough hours in the day for me to work more than I do but I won't (can't).
I know too that he believes so long as he sees me continue to take care of our son, and do the things that have to be done (even when some days just the thought of trying to think of what to make our son for dinner is enough to make me cry, so long as I manage to do it, I must not really be that sick. I am no different than most mothers/parents who understand that caring for your child is never a question of if, only how. It scares me to think of what will happen if I do wake up one morning, truly "unable", because the ones I believed would step up, if there ever came a time, are either nowhere to be found or so wrapped up in the inconvenience to them they seem to have no intention or concern for anything or anyone else, even my too-sweet. too-knowing child. I have no desire to borrow trouble or worry about a bridge that I've not yet come upon, but I can't ignore the possibility or responsibility I have to our son...
I want to believe the world will not fall apart if I wake up one of these days and even for my son, simply cannot "cowboy up" but while the world itself may keep on turning, his world will feel the effect. more so than he already does.
Again, grateful for any thoughts, experience, practicalities, wisdom you might share and thank you again for the gentle words -
Posts: 6 | From Northeast | Registered: Nov 2013
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posted
DaisyJane--it's incredible that you've managed to provide 2/3 of your family's living expenses while you're so sick. Steve is right: you're an amazing mother. It makes your husband's self-centered entitlement look even worse.
I'm so sorry to cause you to feel more upset. I didn't mean to trigger worries about what would happen if you were completely unable.
I wondered if you could cut down on some of what you do--tasks that primarily help your husband--while still maintaining your priorities for caring for your son? (Randibear has some good suggestions) But I appreciate that many household tasks are difficult to divide in this way.
If your Dad is basically supportive, I wonder if he is at least educable, despite his statements about "self-inflicted crises"? Don't invest too much in educating him. But it might be worth trying one of these:
Do you think he might be willing to view "Under Our Skin" with you? Or to read Pamela Weintraub's _Cure Unknown--which is such a transformative book? Or if reading a book isn't going to happen, this excerpt from her book here:
Thinking of you and your son.
Posts: 431 | From New England | Registered: Dec 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thank you Steve for that summary of how it is what it is with lyme & co.
To those of you without any support from a spouse or parents/family....I'm so sorry. I wish I were your friend and could drop in(drag myself in) and just chat.
This is why I have found our support group so fulfilling (and yes so exhausting). Having face to face contact and a social environment with others that know exactly how you feel and how much life is so hard to do day to day....is priceless.
My spouse still gets frustrated with the whole ordeal all these years later. Or I should say, lets the frustration show on his facial expressions or the tone of his voice is saying....damn is it ever going to end?
He knows when I ask for help with housework, grocery shopping, washing etc, that if I could I would. Today's not the day for her to try to do life.
He'll really kick it in if we have an event coming up and he wants me to save everything to be able to do it. Sometimes it works, sometimes not.
I'm still printing off Steve's 10 points and making hubby read it. Maybe bring it out on the desk when he forgets. My husband did live it for 2 mths.
Took abx within days for 8 weeks. All his sx disappeared, just like so many others that are so fortunate. That was 10 yrs ago and sometimes he forgets how hellish that 2 mths was.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Maybe it's the mood swings, but your post just brought a tear to my eye -
I try, every day, to put myself in my husband's shoes and appreciate that there is no way for him to believe what a joy it would be to get up in the morning and go to work or how it is to be too tired to reach out to anyone, but how incredibly lonely it can be to have no one reach out to you.
We are definitely struggling financially which carries tremendous stress under any circumstances - my husband is about a year away from earning his captain's license which should not only ease some of that struggle but allow him to leave the job he hates, but while I became unable to work full-time about six months ago, I have still managed to carry not just my weight but keep our heads above water as his income has always only covered about a third of our living expenses. I imagine what's different now is while before he felt free to take time off or quit a job if he wanted to, if he were to do that now, I am not able to go out and work more hours to compensate, I am out of rabbits to pull out of a hat at the moment. His car broke down two weeks ago, beyond repair, and even though I get up at 5am to take him to work and pick him up when I need a car to go the doctor's or willingly make due without a car any other time, he is angry that he has to work full time and share a car, his thought is he can't have what he is entitled to because there are enough hours in the day for me to work more than I do but I won't (can't).
I know too that he believes so long as he sees me continue to take care of our son, and do the things that have to be done (even when some days just the thought of trying to think of what to make our son for dinner is enough to make me cry, so long as I manage to do it, I must not really be that sick. I am no different than most mothers/parents who understand that caring for your child is never a question of if, only how. It scares me to think of what will happen if I do wake up one morning, truly "unable", because the ones I believed would step up, if there ever came a time, are either nowhere to be found or so wrapped up in the inconvenience to them they seem to have no intention or concern for anything or anyone else, even my too-sweet. too-knowing child. I have no desire to borrow trouble or worry about a bridge that I've not yet come upon, but I can't ignore the possibility or responsibility I have to our son...
I want to believe the world will not fall apart if I wake up one of these days and even for my son, simply cannot "cowboy up" but while the world itself may keep on turning, his world will feel the effect. more so than he already does.
Again, grateful for any thoughts, experience, practicalities, wisdom you might share and thank you again for the gentle words -
Posts: 6 | From Northeast | Registered: Nov 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Daisy, a lot to say, not sure how to communicate it.
Sometimes we (I) have to force myself to look at 'what's right' Your son is healthy, you are able to have a Dr's care, you can
get to your Dr.s appointments....
I find that if I start down the negative path with my H, is just adds another huge layer of stress on top of him.
As a type A personality perfectionist type, do it all gal, an illness forces us to re -evaluate. Re- draw boundaries.
If this dish gets left in the sink until morning, well, okay. My first year of treatment, I no longer had the strength to do the large food shopping
for a family of 5 by myself- H and everyone had to go w/ me on the weekends to help.
Some things shift and change, but as you get better, you will feel stronger. I also verbally tell my H appreciation for what he
does, and let him vent to me about his job. I felt horribly guilty laying on the couch during the days when I had to- but, it is what it is.
He is tired too. So I only asked what was really necessary. And we don't have help from outside help, either.
Re-connecting with your spouse is important- watch a movie, TV shows you both like, do the small things you can for each other to show you care.
And it can get better. Get well. Take care.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Daisy-all good points by everyone so far.
You sound like a really great mom, and it sounds like your son is a caring child.
Lyme Bartonella and Babesia. You have some heavy hitters... You are literally fighting for your life with those ones. (I am not trying to scare you).
I read posts from so many healthy caretakers and spouses on here and I glow with love for them because they are earnestly trying to help the one they love get better. They want to learn as much as they can so they can help their loved one heal.
Really, they are rays of sunshine on this forum.
Can you arrange in advance for your MIL or your father to watch your son? Maybe pick him up from school each day and feed him dinner, and then drop him off when the homework is done?
You've got those heavy hitter bacteria, and when you start IV; things may get worse before they get better.
It will be helpful if your MIL or father can "babysit" for the first couple of weeks. It will take a load of stress off your mind.
Do you have a best friend or a kind friend who can come over and bring you food during the day in those first couple of weeks? You may need help getting dressed, bathed etc.
Your husband...well he's an adult, he's can worry about his own food like a healthy adult living on his own would, and his own way to get to work, as most healthy adults do.
When did the name "wife" become all encompassing for cook, chauffeur, and housecleaner?
He survived before you came into his life...most folks are broke, stressed and do horrible commutes to jobs they despise just to make end's meat. It's called the 21st century. His behavior towards you is inexcusable. Try to ignore him.
Anyways, the guidelines written by Dr. B... Study them and follow them as best you can. Sleep when you are tired, take lots of probiotics and kefir.
Aside from your son, who sounds very sweet, you need to become very selfish and worry and take care of yourself. You are fighting for your life.
Is there a lyme support group in your area? Some support groups have "Herx Buddies" who help drive and bring food or feed other folks with lyme who are herxing badly.
There may also be volunteers at a nearby church who can drive you to your appointments for your IV.
I am thinking of you, and wish I had a trasporter. I'd pop down there to your house and help you.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Daisy. I wish I could come and do your laundry.... But let me just give you a virtual hug. I think you can tell by the long responses, a lot of us have faced this....
I have an awesome husband and no children, but still, I totally get and sympathize with your story. Not only is it hard for others to understand. But it is hard for us to explain. Some of how you feel right now may be the Infection blowing things up, and sadly a lot of it is just the way it is. It is really hard to change people... Only how we respond to them.
That being said. It may be worth having a talk. It sounds like a nod of sympathy from your DH would go a long way. Try to put into words how you feel every day. Include the better days and also the days from hell. Tell him that you are basically going through chemo therapy right now... it may take months more... and you may in fact get worse...But that you are doing it so you get better, to be the partner you once were.
Tell him that you really don't need him to do anything except believe and support you in your journey to get better for yourself and your family.
And once you've had the talk, I agree with Surprise to look at the positive... And try and reconnect. It seems like it may feel yet another burden to make him feel better... But he is likely missing you, may be afraid, and being a "man" (no offense steve) not know how to show it... So he buries it in stereotypical behavior.
I found once I really explained, calmly, and really got my husbands sympathy he also wanted to help ...But I also had to let go of my own expectations of people and a clean house.
If you love him, and he loves you it's worth the slight confrontation, as well as rallying a bit to connect again.
This is going to be a long hall for all of you. You don't want to waste energy on being angry... And it would be easier to have a partner even if they don't deal with all Lyme and all entails well.
Sadly, I've found that friends and extended family don't offer up help. But they "may" be willing to help if you ask for something specific. I love Greta's idea about seeing if your dad or MIL could take your son after school. Even if it was just once a week or every other week even. Sometimes just knowing you're gonna get a break helps a lot.
When I went off abx after 18 months, and was feeling more like myself, that is when my DH chose to finally chose to read "Cure Unknown." I was furious and confused cause I had begged him to read it while I was at my worst... So I came on here and whined... And someone wrote, that he may have been too afraid to read it sooner.
I can't possibly know what your going through, with a young son... I don't know how mothers can do it while feeling so horrible. But you do it and more every hour of every day. Please come here often and keep us posted.
[ 11-14-2013, 05:37 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Daisy, you have received a lot of great advice/responses.
I am so sorry to hear of your situation, but as you can see it isn't unique, unfortunately.
IMO, seeing friends drop by the wayside is one thing and that is hard enough. Having your husband do the same is just not acceptable.
Maybe you could write him a letter explaining/elaborating what you basically stated in your post. At the end tell him you love him, and understand his ahem "difficulties" but that you need to set limits due to your health situation and very limited stamina. And then outline them, such as:
-starting next week I will be ordering our groceries online and have them delivered
-starting next week you will need to take our laundry to a place that will wash/dry/fold
-you need to clean up the dishes, pots, table, counters after I've cooked our family dinner
-you need to have a discussion with your mother and explain to her just how sick I am and how badly I could use a bit of understanding and how helpful it would be for her to take our son on an outing or pick him up after school once in a while, etc.
Just remember that as the woman of the home, you have a lot of power. Oh sure, I know it doesn't feel that way, but you do. You run the ship and you make the rules. If you don't shop and cook they don't eat. If you don't do the laundry they wear dirty underwear.
Reread what Randibear wrote.
My fsvorite statement on this thread is from Greta: "When did the name "wife" become all encompassing for cook, chauffeur, and housecleaner?"
Thanks for that Greta. It's a good reminder to those of us who have taken on those roles and SO SO SO many more, often to our own detriment.
Daisy, best of luck to you and I hope you feel better soon.
Posts: 1885 | From here | Registered: Jul 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Qoute> Kudzuslipper - and being a "man" (no offense steve) not know how to show it...
No offense taken...
I think DaisyJane needs to concentrate and focus on herself, and her 10 year old son.
It’s your decision whether you wish to educate your husband on these diseases.
It sounds like you’ve spent a lot of time trying to get him to help you. If he isn’t willing to watch (Under our skin) or (read a book) at this point in time, I don’t think he’s ready to commit in helping you get better.
I hope he comes around, it would make your life a lot easier.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I wanted to reiterate that it might be worth trying to educate your _father_ instead, Daisy. He sounds potentially more educable. With one supportive adult family member behind you, you'd be in a better position to decide which way you want to go with your husband.
Posts: 431 | From New England | Registered: Dec 2011
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posted
I would invite them to watch "Under our Skin" found on netflix and hulu.
One thing that can work a miracle is merely asking for support, either emotionally or whatever it is that you need. Sometimes your needs have to be specifically spelled out and sometimes repeatedly.
If in time support does not come from an individual you would like support from you have to just deal with the fact that they are incapalbe of it on a spiritual level to extend that level of compassion and attention.
Posts: 803 | From USA | Registered: Oct 2013
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posted
and always remember to thank those who do give you support and attention. Let them know how much you have needed it and appreciate it.
Posts: 803 | From USA | Registered: Oct 2013
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posted
As a (healthy) spouse myself, I have to say that, OK, healthy spouses get tired too. I have a demanding job that consumes my evenings and weekends as well as my days, and sometimes makes me want to tear my hair out.
BUT NEVER, ever, are my tiredness or my work-related problems comparable to my husband's deep, deep fatigue and other debilitating and frightening symptoms of TBI. Which he bears with extraordinary grace, while also giving me huge support. Even when I'm, shall we say, less than angelic. As you've so clearly and consistently supported your husband, Daisy, for years.
Take it from me--yes, it's frightening and difficult to be the spouse of someone suffering with Lyme and co. But absolutely, in no way, ever as difficult as it is to HAVE Lyme and co.
As spouses and partners, it keeps us going if we have your understanding. But as long as you have TBI and we're healthy, our bodies have more capacity, and more should be expected of us. Sometimes appalling behavior from a family member is just appalling behavior.
OK--rant over. I don't mean to offend anyone.
Posts: 431 | From New England | Registered: Dec 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
My son was about 18 when I was really sick. He drove me everywhere, helped in the house and filled out the "family" portion of my disability papers.
My DH was somewhat vacant at the beginning. He fell asleep during "under our skin", had him read the spoon theory (below) and after a few unrelated to Lyme surgeries, he came around a bit.
I couldn't figure out why none of my former co-workers did not come to see me or call. I worked for my husband (bad idea) for 10 years at the same company. Where were the calls? Well, my DH told them I was sick with something like HIV. Well, if that won't clear a contact list- nothing will (sad to say).
I learned to be grateful for what I had that moment. I had a roof over my head, food, was fortunate to have good medical coverage, etc...
I tried to sit outside and appreciate fresh air.
Remember to smile with your son. It sounds silly, but it will reassure him. Maybe watch a funny movie and laugh with him. I know that sounds hard, but laughter is good for the soul.
It all sounds so trite but it did help. I had one dear friend who would bring me meals on occasion and my sister called me every day and went with me to Dr appointments. I could not take my DH to Dr appointments because I was concerned he might ask the Dr if he was a real doctor or something like that.
Lyme tore through my body and I still am not able to live the life I had before Lyme. But it is better and I am thankful for all God has done in my life.
Hang in there - it does get better. Your son will be an amazing husband one day. Sometimes bad things can work out for good.....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Kudzuslipper
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posted
Daisyjane, I just wanted to see how you are doing today? Sending good vibes your way!
Posts: 1728 | From USA | Registered: May 2011
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I have found, as I think many people with Lyme and Co have, that relationships change due to the limitations of the illness combined with the expectations and ideas of the the doctors, employers,fiends amd relatives. Having neurological symptoms for seven years; I have tried passing as healthy, trying harder, hiding illness periods, humor (the job of the sick is to take care of the tender feelings of the well), educating, pandering, understanding the friend or relative, and accepting a very limited version of relationship (like never talking about the illness!)
Of course this nonsense is not true of every doctor or relationship; and some creepy situations do need to be matained to some degreesometimes just for a while. But for me at least, once I became somewhat better, I was both overjoyed at the improvement and very angry at some things I had been "putting up with".
On the whole I have done less and less in the relationships that changed for the worse. Its painful, but for me I wanted to be with people who could understand I have an illness. Just an illness not a character flaw, and its not a part of me that needs to be hidden, ignored, abused, mistaken for laziness, or exploited.
When someone, new or old, is supportive, I go a long way to help out when I can, and have as full a friendship as I can given the symptoms. I look forward to a level of improvement that allows fuller engagement with just about everything. But I doubt very much that I will forget and forgive the doctors, relatives and friends that made the improvement harder.
It harder than I could ever imagined, but those of us with chronic illness often have to sift out (while sick) doctors, treatments, relatinships, friends, jobs that/who contribute to improvement. And leave the junk behind.
Posts: 18 | From NH | Registered: Jun 2012
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posted
Thinking of you, DaisyJane. How are you?
Posts: 431 | From New England | Registered: Dec 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well,
So much happened after I became sick.
I won't go into details, but it sure did break my heart. I have been very depressed about it lately.
My Significant Other has been very good to me, but my parental family and siblings, that is a different story.
But I got to the point that I simply said to myself, "Screw it!! I'm taking care of myself. I'm not going to be pulled down by your lack of concern or your condescending behavior. If you don't understand. If you want to be treacherous, then I won't go around you anymore. I'm taking care of me.!!"
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Rivendell, You did the right thing, good for you.
I hope your family ties are better today? If not, so be it....
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks Steve.
The family ties are iffy. I really don't understand where they are coming from sometimes. It really confuses me.
But I'm certainly stronger emotionally than I used to be.
It is really hard to deal with family dysfunction when your brain doesn't work because of serious inflammation, and you can't stand or sit upright, and you are too tired to move. That is the kind of shape I was in while trying to deal with BS.
Getting the inflammation down in my brain has helped so much.
I count my blessings. What other people want to think or do, I can't control that. I just take care of me.
And I have a lot of compassion for people. Just can't be trampled on anymore.
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