I need some serious emotion support

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10LymeB
Regular Member


Date Joined Feb 2017
Total Posts : 255
   Posted 3/16/2017 10:10 AM (GMT -6)   
My husband is driving me up the wall right now. He's not feeling appreciated enough and I truly don't have the energy to give him gold stars every time he drives me to the doctor. I'm trying to be appreciative, but he's really feeling unusually abandoned. To be fair, I need to concentrate on me. I've always taken care of everyone else and now it's me time. I need to be adamant about this. I need to get well and people are having a hard time with me being unavailable - too sick to take care of them let alone myself.

I honestly don't know what to do. Therapy? Drugs?

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 3/16/2017 10:20 AM (GMT -6)   
Patience if you think he is worth it. In the meantime, we can give each other mutual ((((hugs))))

I found out yesterday that my Medicaid will not cover my prescribed portable oxygen concentrator that will enable me to be mobile and try to strengthen my body when I can't walk without it or my o2 drops to 84 or lower.

And, if that's not enough, I got my 13 year (relationship) male friend that I've let stay with me for more than the last 3 years, drinking at 9 a.m.. this morning. He knows I will not let an alcoholic live here, and I told him to leave and not come back.


So he did leave, but just pulled up in the driveway and now I must figure out what I am going to do.

Post Edited (julymorning) : 3/16/2017 1:02:39 PM (GMT-6)


Kat1000
Regular Member


Date Joined Feb 2017
Total Posts : 270
   Posted 3/16/2017 10:39 AM (GMT -6)   
Be grateful he's there and for the things he does. I'm alone with kids, a full-time demanding job, a difficult ex, no family nearby. I date occasionally, when I have a moment of free time, but they don't help shovel the drive, or shop for groceries, or do laundry, or fix things, or deal with the plumber, drive the kids, make plans, schedule lessons, etc., and now I feel like, who's going to want to date someone with Lyme?

You do need to take care of yourself more than others right now, but gratitude is a simple thing to give. I don't mean to downplay your emotions because they are important! But it helps to remember someone always has it worse. I'm grateful I have a job that allows me to not worry about the finances, it's just everything else!
Symptoms started early summer 2016
Sept 2016 - internist referred to endocrinologist
Oct/Nov - endo increased thryoid med and Vit D; pos for MTHR
Positive Igenix IgG Jan 2017 (internist ordered at my request)
Rheumatologist said no connective tissue disease Jan 2017
Skipped recommendation to see neurologist
LLMD first visit March 2017 - symptoms for borrelia, bart, babs

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 7730
   Posted 3/16/2017 10:40 AM (GMT -6)   
KristenBee, I'm sorry that your hubby is so needy right now. That has to be so difficult. And such horrible timing.

I have no idea what works in your family.

My husband is total stomach. If I take time to make him something special he likes to eat - I win the wife prize.

Let time calm and diffuse the situation before you discuss it.

Otherwise it is emotions talking and not facts.

Have a nice cup of tea and think for awhile. Remember that this lyme thing is very hard on us and it is hard on those around us.

Hugs of comfort <3
____________
You will be the same person in five years as you are today except for the people you meet and the books you read. ~Charlie Tremendous Jones~

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1621
   Posted 3/16/2017 10:41 AM (GMT -6)   
KristenBee said...
My husband is driving me up the wall right now. He's not feeling appreciated enough and I truly don't have the energy to give him gold stars every time he drives me to the doctor. I'm trying to be appreciative, but he's really feeling unusually abandoned. To be fair, I need to concentrate on me. I've always taken care of everyone else and now it's me time. I need to be adamant about this. I need to get well and people are having a hard time with me being unavailable - too sick to take care of them let alone myself.

I honestly don't know what to do. Therapy? Drugs?


Yes on therapy and drugs - for your husband. ; )

I'm sorry. This is actually far too common for many folks here on the board! People react differently in regards to chronic illnesses.

I don't have any great advice, but I am sending a {{{HUG}}} your way! And please know - it's OK to focus on just you given the situation. It's completely understandable given the challenges of this disease.

{{{HUGS}}}

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1621
   Posted 3/16/2017 10:45 AM (GMT -6)   
julymorning said...
Patience if you think he is worth it. In the meantime, we can give each other mutual ((((hugs))))

I found out yesterday that my Medicaid will not cover my prescribed portable oxygen concentrator that will enable me to be mobile and try to strengthen my body when I can't walk without it or my o2 drops to 84 or lower.

And, if that's not enough, I got my 13 year male friend that I've let stay with me for more than the last 3 years, drinking at 9 a.m.. this morning. He knows I will not let an alcoholic live here, and I told him to leave and not come back.


So he did leave, but just pulled up in the driveway and now I must figure out what I am going to do.


I realize this isn't your thread, but you need a {{{HUG}}} too! Good grief - that's a lot to deal with.
I'm so sorry Medicaid failed you. Do you have an alternative?
And sorry about your male friend. (I initially misread your message as like a "13 year OLD" male friend, but I think you meant 13 year relationship?) What did you decide to do about him (if you don't mind sharing)?

So stressful - so sorry! Sending {{{HUGS}}} your way too!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35184
   Posted 3/16/2017 10:55 AM (GMT -6)   
Kristen - chances are, he's pretty scared. His "rock" (you) is no longer as solid as she once was, and that can be very scary for a husband. It was for mine!

Try to find out specifically what he needs from you - guessing never seems to be enough, and it's very wearing to try to figure out when you are sick. As you said, you usually are there to take care of everyone else - and how you aren't.

Try to help educated him about Lyme, so that he understands what is going on with you. Some of these links may be of some use:
Under Our Skin (L​yme Disease Documentary)

picamov.com/play.php?movie=tt1202579​

So you know someone with Chronic Lyme disease:
​http://www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t​​

" Dear Family of a Lyme Disease patient ​​"
/www.lymedisease.org/lymedad/?print=print

Top Ten Things you can do for someone with Lyme
/pghlyme.org/2008/10/21/top-ten-things-you-can-do-for-someone-with-lyme/

10 Things To Know When Someone In Your Life Has Lyme Disease
/www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance


July, I've already written to you, but I do want to say again how sorry I am for your situation. Personally, I'd stand my ground about him leaving, as you don't need that stress (an alcoholic living with you) on top of everything else - but that's me and I've had some really bad experiences with living with a previous step son who was an alcoholic. Know that we are here for your support as well! ​
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4030
   Posted 3/16/2017 11:00 AM (GMT -6)   
Bee venom gave me energy ,to be present ,dopamine to lift my dark cloud,a hobby to keep moving ,i have even been able to be intamate with help of improvements ...

nobody gets it until the get it ..
vent here as needed ..but i tell you i wish i woulda ran more when i could run or eat more when i had a gut or love more when i had a lover ..dont wait for better this may be it

Skyy
Regular Member


Date Joined Sep 2016
Total Posts : 66
   Posted 3/16/2017 11:41 AM (GMT -6)   
Kristen Bee, it really can be so tough. I second Bluelyme, do vent if you can. This forum is a refuge for us, as I am certain we all here can relate, one way or the other. I hope things get better soon. Sending you a warm (((hug)))...

Dearest July, I am so sorry that you are going through this right now. =( Please keep us updated on how you are doing.

Last year during my lowest moments I discovered Louise Hay. Her meditations are very uplifting.

I also try to tell myself, "This too, shall pass." Kind of keeps things in perspective, that nothing is permanent and that things will get better...coz there are times when we need to be our own cheerleader.

Sending you Love and (((hugs))).

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 3/16/2017 11:47 AM (GMT -6)   
Thanks Daisies, Traveler again, PK and Skyy. I already hijacked this thread unintentionally.

My life is a soap opera, lol! I don't want to depress everyone dragging it all out on the board.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl since June '15, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves. Bragg's ACV, lemon water, Herbal de-tox tea.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22762
   Posted 3/16/2017 12:09 PM (GMT -6)   
Kristen - I know how you feel. But he doesn't. Neither does my husband.

(and mine has LD - just more subtle, manageable symptoms)


Sure, my husband (usually) is supportive...but we've had our 'moments'. I think deep down my husband is worried...scared...because he has never had to take care of ME before. I've been the caretaker throughout our marriage.

Last time he was being selfish - I said one word to him 'karma'.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22762
   Posted 3/16/2017 12:11 PM (GMT -6)   
July - I'm sorry for what you are dealing with. You don't need this stress....I hope you stand your ground...as difficult as it is.

We are here for you!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 3/16/2017 1:00 PM (GMT -6)   
Girlie said...
July - I'm sorry for what you are dealing with. You don't need this stress....I hope you stand your ground...as difficult as it is.

We are here for you!


I know...thanks. We need a heart emoji.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22762
   Posted 3/16/2017 1:01 PM (GMT -6)   
If I post from my iPad - I can do emoji's....just not on my IMac.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Regular Member


Date Joined Mar 2017
Total Posts : 191
   Posted 3/16/2017 2:43 PM (GMT -6)   
My husband didn't get it for a long time, and thought it was just depression (which he also does not understand). He kept saying I need to do what I enjoy, make something of my hobbies, kept implying that I needed to find a job - I was offered my PT dream job, as soon as he lost his job, and moved us out of state to work at HIS dream job (he's the breadwinner, so we go where he can work). So along with my family, job, and health, I had to leave everything behind. I finally told him that and laid a huge guilt trip on him during one of our screaming matches. Shut him up ever since smile

On a more serious note, though, it takes time and a lot of education. Like others mentioned, find a way to see "Under Our Skin" and watch it with him. There are so many articles on the internet about what Lyme & Co does to your mind and body, and some helpful ones for the spouses. Try to share with him. I tried to join a Lyme group, hoping that some of the spouses would be able to support each other as well, but no one comes to my area meet-up. So he's pretty alone. He has my sympathy - sometimes I feel like the failure of the relationship and worship the ground he walks on for putting up with me. And other times I scream his ear off, and have spent my fair share of days (and weeks) crying for no reason.

Lyme is brutal to marriage. I try to make the most of the good days to encourage BOTH of us to work through the bad ones.
geocaching in April 2016. Found a treasure trove of Lyme and Babesia.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22762
   Posted 3/16/2017 2:49 PM (GMT -6)   
What I now tell my hubby....

"You think it's hard on you with me like this? Try being me...living this. I can guarantee you it's much worse being me than you. You get to leave the house and go to work...feel productive....I can't....I WANT to work...but I can't. I don't get to leave this behind - I'm stuck with it right now"


Occasionally he has said out of frustration something similar to what yours' said BabsBunny: that I might feel better if I was back at work.

Then when I have a lyme-brain moment and can't remember what he said one minute ago...I say "This is one reason why I can't go back to work....my brain isn't well enough yet"
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Regular Member


Date Joined Mar 2017
Total Posts : 191
   Posted 3/16/2017 3:04 PM (GMT -6)   
Girlie said...
What I now tell my hubby....

"You think it's hard on you with me like this? Try being me...living this. I can guarantee you it's much worse being me than you. You get to leave the house and go to work...feel productive....I can't....I WANT to work...but I can't. I don't get to leave this behind - I'm stuck with it right now"


exactly that. Sometimes I feel like looking for a job, but... who am I kidding? I'd be calling out all the time when I'm too dizzy to drive. And what skills do I have? Can't lift, can't sit too long, can't stand too long, can't speak properly, can't relay information properly, and just the interview would have me in tears.
geocaching in April 2016. Found a treasure trove of Lyme and Babesia.

goshawk
Regular Member


Date Joined Sep 2016
Total Posts : 433
   Posted 3/16/2017 3:46 PM (GMT -6)   
KristinBee,

Being ill is complicated. We have to face the symptoms and the continuous struggle to get better every minute of the day. It's a lot of work for us emotionally and physically. It can effect all aspects of our lives, including relationships.

A major disease like Lyme can take it's toll not only on our health but on our families, friends, work, hobbies, passions, you name it.

I understand that you need to concentrate on getting better and taking care of yourself. That is so important. You need to get well and I pray that in time you will.

Our spouses/partners/children, families, friends etc.are an important part of our whole life.
They are struggling with our illness to, it has changed things for them also.
There is added stress on everyone.

If we have good support from them(or as good as they can offer), and we help make them feel like they have our love and support it would be good for our healing.

I know it's hard to always be the caretaker or the one giving, but it can have it's rewards. Sometimes we just don't' see them right away.

My husband can be a pain sometimes , and I know he is probably sick of hearing about Lyme all the time. But he has been listening. So I have been trying to bring up something else once a day to talk about that he is interested in. It only takes a few minutes and that way I hope He knows that I'm not the only one that matters here. We did have a life before Lyme.

Maybe you could have a good talk with him at first about how he feels and then express how you really need his help right now in facing and battling this disease.


I think of Lyme as just a stumbling block along the way ,or a wall we need to climb over to be stronger, healthier and more appreciative of this precious gift of life we do have.

I have to think of it like that now, so it doesn't consume everything that I was before this, I will keep fighting hard and beat it.

Remember our families are struggling too. Always a good time for a hug. Take care, Sincerely, Jo

Laker7491
Regular Member


Date Joined Aug 2015
Total Posts : 241
   Posted 3/20/2017 2:40 PM (GMT -6)   
Hi, I'm so sorry you're going thru this. I too went thru similar things with my husband. We've been married for over 30 years so we have had our share of trouble. My husband was also lousy at taking care of me and would not pitch in and help when I was really sick. I have threatened divorce many times but I was just too sick to leave and we went to marriage counseling. It helped some. I've been sick off and on for about 12 years and finally got diagnosed with Lyme and co-infections in September of 15.

What helped this time was I asked him if he could watch the movie "Under my Skin" with me. And a few youtube videos: https://www.youtube.com/watch?v=6zvjd6_hotg and http://www.justinandchrista.ca/links. I also asked if he could take over running the Spooky2 rife machine and research as my brain was too fried.

I also look for pins on pinterest on marriage and chronic illness. Here is an example of one: http://livinggraceblog.com/support-spouse-chronic-illness/ I send him pins that talk about how much I love him.

I also encourage him to get out of the house and have some guy time. I know you have kids so it may be harder, but maybe once a week. Or have one night a week where he can just do what he wants without any demands on him.

I also tried to think of ways to make things easier in the house. For a long time, we used paper products so we didn't have to do dishWes. We bought a Roomba (best thing we have ever done) which helped reduce cleaning the house. When I was able to cook, I doubled the recipe so I could freeze a dinner. I'm not sure where you live, but I know in some larger cities they will deliver groceries. We also use Amazon Prime to order my supplements and groceries. It's worth the extra money to get free shipping. I'm not sure how we lived without it now.

I still have to remind him that just because I'm out of bed doesn't mean I'm not sick. I am able to do more around the house which I think helps as well.

I also try and thank him for what he does for me and show gratitude as much as I can. I know that is a hard thing to do when you have a grown man acting that way. I read an article that said when a married partner gets a chronic illness if it's a woman the man is most likely to leave. As opposed to the wife staying and taking care of her husband. I hate to say it's a gender thing but it certainly seems that way.

Another thing that helped was I initiated sex. I would do it in the morning right when his alarm went off. I didn't hurt so bad at that time and we wouldn't have too much time because he would have to get up and go to work. It was only about ten or 15 minutes and it makes a huge difference. I hope that doesn't sound manipulative but I know men feel closer when they have sex as opposed to women who need to feel close before they want to have sex. Whatever it is, it really helped.

But the purpose of my post is to let you know that it is possible to turn things around in your marriage. I know it's hard when you're so sick. But maybe you could start researching marriage counseling and talking to your husband about it.

Having Lyme and co-infections just sucks and that's all there is to it. Please keep posting when you need support. I'll keep in you in my prayers.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 3/20/2017 3:11 PM (GMT -6)   
That was a really good post Laker, and many great ideas.

Often times the difference between the behavior of the partner that isn't sick is due to the nurturing nature of (most) women. Gratefully some men are good nurturers as well, but generally.

Men get frustrated and retreat when they can't solve a problem, in this case make us healthy again. Solving problems is their[/] nature. I cannot imagine how much worse that feeling must be for them, considering how hard it is on us women not being able to heal like we want.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl since June '15, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves. Bragg's ACV, lemon water, Herbal de-tox tea.

zachxcastle
Regular Member


Date Joined Mar 2017
Total Posts : 29
   Posted 3/25/2017 2:21 PM (GMT -6)   
Kristen, I'm new here (and not even confirmed Lyme patient, yet), but I thought I should add that there's no shame in therapy or medication! I have been struggling for over a year. I drive my family crazy because they all think I'm a lazy and unmotivated college dropout living off my parents. The reality is they don't understand all complex issues about being ill. I feel so sick, anxious, depressed, etc most days that I can't even entertain the thought of getting a job again. I see a therapist and psychiatrist, I'm on medication and it has improved my quality of life. I can't comment on relationship issues, but I say you should do what helps you. Sounds like you rely on him a lot like I do with my family, so if you think meds/therapy would help, it can't hurt to try! Hope things get better for you soon smile

OldSalty
Regular Member


Date Joined Sep 2016
Total Posts : 251
   Posted 3/25/2017 9:11 PM (GMT -6)   
KristenBee: You are going through your own hell and he doesn't understand it. Some males have difficulty empathizing until they either have a similar illness or get slapped in the head by an experience that they can relate to. The recommendations for the videos is a good one.

My wife has gone through bc w/radiation and chemo, spinal fusion, afib, several foot fractures, knee replacement and a number of other traumas. So I took over the house stuff. I'm certainly no saint, but I do what I can for her. When I got sick, she understood. The recommendations of doing some things that can open his eyes to what you are going through as well as showing him some small tokens of appreciation - whatever you are up to - can simply remind him that you are still you, just not able to do be 100% yet. He is likely scared, as was mentioned. Scared that this is permanent, scared that it might get worse, scared of who-knows-what.

As has been mentioned in other posts, we tend to have thoughts and reactions that seem bizarre to us, much less to others. It's scary for us; it's scary for them, too. We guys get possessive; when our usual life is disrupted then we act in ways that might not be well understood. And we don't necessarily understand them either. Some counseling for both of you together may help. It usually is a simple failure to effectively communicate.
Infected October 2015, diagnosed per lab - RMSF October 2016. EBV, Mycoplasma pneumonia. WB band 41 positive, Babesia positive. Bart symptoms.
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