posted
Are you a mom or stepmom in charge of taking care of kids while getting treated for Lyme? How do you handle them pushing your buttons when you feel like crap all of the time??
I am so close to losing it right now with my husband's son. I cannot be in charge of a rebellious teen when I am sick and my husband is out of town all of the time.
Even after telling the place I volunteer that I will be out of commission for a few weeks, maybe longer, with Lyme, I am still getting calls and texts and emails to do stuff for them.
I am already overwhelmed trying to keep track of meds and dr apps and detoxing and herxing. How do people deal with this disease and still function in the real world?
I just want to be left alone until this gets better :-(
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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posted
Hi Ames, I'm pretty new here too, but try to hang in there. How long have you been on antibiotics?
Everybody's different, but I've been on antibiotics since Jan 15 and I can't believe how much better I feel already!
I'd suggest putting your foot down with the place you volunteer, and only spend your energy on things that are healthy for you and your family.
I've had to cut back on some of my volunteer activities too, I can only concentrate on rest and healing on the weekends so I can get through another week at work.
But with a teenager in the house, you don't get to rest on the weekends. How old is he, old enough that he can help you?
My sons are grown now, but they were pretty compassionate even as teens. But I had to spell out to them very clearly what I needed from them.
-------------------- One day closer to being cured..... Posts: 104 | From Wisconsin | Registered: Jan 2014
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posted
I did minocycline in January for 2 weeks, skipped two weeks, and am now on week 3 of rosephin and week 2 of doxy.
I used to be a Marketing and Special Events Director, but I haven't been able to work in years bc my symptoms got so bad. I think I have neuro-Lyme bc it affects my brain functioning and my speech.
I have the most energy mid morning and try to get the household chores done at that time. I then have to nap during the day bc I am wiped out. Evenings are spent cooking dinner, watching a little TV and fighting with him over why there are house rules and why he has to do homework and go to bed.
I know this isn't a therapy site, but I really don't have the energy to keep up anymore. I'm just so physically and mentally drained every day.
I try reading, I try skimming LymeNet, I try meditating and praying. Nothing seems to recenter me though.
Any advice on how to keep my spirit balanced while everything else is in turmoil?
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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posted
Yes - I'd say drop everything you don't have to do, like the volunteering. The home situation you do have to handle. It can be hard with a teenager, even if you're not sick! Maybe folks will be along here to discuss how to negotiate the situation better.
To take any time for yourself along the way for something you like to do, something that nourishes you in any way, that adds something of quality to your life, that's what I'm suggesting you figure out. It can be a smaller, modified form of what you like, and that's ok, because it might be all we can handle.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
You are in a tough situation, needing to take care of yourself right now. I agree that you should stop your volunteering until you are feeling better.
Is there any way your husband can be more involved, even if out of town? You need to communicate how hard this is to your husband so he can step in and speak to your son daily - even if from afar.
Have you been to any local support groups? It might be helpful to talk to others who understand. It looks like the site below might be a good place to start.
Good luck to you. There are many here who understand...
Posts: 2386 | From New England | Registered: Aug 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Amy, Feeling overwhelmed is not a good place to be with these diseases. The more you stress the worst you'll feel. Stress & Lyme do not mix well.
Like everyone said above, you need to take care of yourself, release yourself of all unnecessary negatives in your life.
If you can't work/volunteer at this point, it's ok to just tell them not to call you.
Your husband needs to step-up to bat and take care of his son, period.
Find Distractions – Call a friend – read a book Etc.
Go For a Walk – Look at all the wonderful surrounding, think happy thoughts… Walking also helps move blood around your body, and is a good tool for controlling your breathing and heart rate. Amy, walking is all I could do my first year of being sick, and it does really help a lot.
Controlled Breathing – Will help with your anxiety symptoms
Journaling - Will relax your mind – this will help when you are feeling overwhelmed, and might give you some relief.
Focus - Only Focus on right now.
Exercise – Will help with being overwhelmed, and will combat your anxiety. Just do whatever works for you. When I don’t exercise I feel like crap!!!
Sleep – Work on getting a good nights sleep, everyday.
And don’t forget to eat healthy!
I hope you start feeling some relief soon…
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I understand
I did it...itwasnt ez
My dreams of future changed and my kids and husbands lives were never the same
I had to learn to prioritze and follow my plan even tho it was very hurtful at times
I had 4 kids and a husband but i made the most money and the health insurance
So i had to keep the job
I hired babysitters and cleaning help
I missed out on many fun things i wanted to do with kids cuz pretty much all i could do was work and sleep and keepmeds etc straight
I had to be strict with kids - they all had a lot of chores-way more than their friends-they were mad at the time...but did grow into productive adults
I had to prioritize with them too...3 of them had lyme tx along the way...health was first then school
I made sure each one got the one most important thing they needed at the time...one needed sneakers for sports(not wanted-needed) another needed tutoring. Another needed more sleep and less chores cuz her lyme was worse...
It is hard...but you need to get priorities straight and follow thru
If you dont take care of you , you cant. Take care of others
This disease changes lives
Like others i ended up divorcing my husband cuz after 13 yrs he still didnt get it
Some stay in bad situation for many reasons
Youve gotta figure it out and decide what to do
Its hard. Some just give up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am so sorry- big hugs! I don't know how moms with kids , etc survive.
My son was in his teens when I got sick and he was an angel. Other members of the family? Not so much....
My off the top of my small brain wisdom would be:
Stop the volunteer requests. There are other people who can do what you provide
The step- son- negotiate with yourself the things you need done from him and let the rest go. Decide what is important to you and let his dad handle the rest when he is home.
My angel son decided he wasn't going to turn in home work his sophomore year. I tried all my tricks and nothing worked. I left him to the consequences. He had to take summer school. After summer school he framed his class list because he never wanted to be there again.
Do choose YOUR battles, not the step son choices. Let go of what you cannot do. Give him a bit of slack too, having dad gone and with your illness it has to be a slight hardship on his teenage brain.
I will pray for you! It does get better!
-------------------- 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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posted
Don't want to pry, but do you mind if I ask why you skipped 2 weeks? For me, it was about weeks 3 and 4 when I began to feel better.
Just a thought Amy, has your stepson been tested? I was just reading an article about how many kids with behavior problem have Lyme that was previously undiagnosed.
-------------------- One day closer to being cured..... Posts: 104 | From Wisconsin | Registered: Jan 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
You've gotten excellent advice here. Read through it a couple of times.
As a Mom of 3, strongly agree you must get the boys father involved. And at the same time, let go.
One of the biggest lessons I had to learn while going through Lyme treatment: no-one is going to take care of me but ME. And that means saying NO to others.
Many times I had to remind myself I was sick- yes, I have to lay down now and rest. Compare it to going through chemo- right? Would anyone say boo to you for resting, taking care of yourself?
That's one of the saddest things about 'Lyme' - others really don't get it fully. But you need to recover, get through treatment. Herxing and killing these infections is HARD.
Good thoughts--- read again what everyone wrote--
-------------------- 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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posted
Thanks for all the suggestions. I don't have much support network here, so this Forum has been a blessing. People who don't have Lyme don't understand what it is like, so they are constantly asking, "do you feel better today? Can you..." Even my hubby doesn't fully get it.
I was volunteering marketing and web maintenance for a theater company and when I told them I needed a break, they had no one to fill my shoes. They check in to see how I am doing, but then there is always a line that says something about the center not doing well and they don't know what to do. That whole "are you feeling better today bc......"
I know that isn't my problem, but there is always that tinge of guilt about me not being able to help anymore. I think people just don't get how neuro-Lyme makes your brain not want to think, so computer work is the last thing I want to do.
In terms of the family, it has always been very complicated and dysfunctional that was stressful before getting sick. This past weekend we had all 3 kids and then a big fight last night that lasted til 2am with dad on phone and teen yelling from his room that just set me off.
Before Lyme diagnosis, I was sent to a psychiatrist that has me on meds for depression and anxiety and possible bipolar. Funny that I never had any problems until getting married and getting Lyme though. I'm still taking those meds religiously to get me through all of this, and I see a family therapist to deal with the family drama.
Lots of sleep today has helped, though. I think I get so fatigued that even a molehill looks like a mountain. I will definitely take the advice given (thx Steve for all your input).
To answer some questions:
The GA support group is "moving offices" and still has not responded to the email I sent a few weeks ago, so I am still in search of a local support group.
I was on minocycline from one ID dr who then decided my test was a false positive. It took me a couple of weeks to get to a new doctor that would treat me, so I had a break in treatment.
The teen does not have Lyme. He is just a pain in the butt that never had boundaries until moving in with us this summer. He doesn't do chores, he doesn't do homework, he misses the bus, and he expects me to cook and clean after him. He just sits at his computer playing games all day.
I try to pick my battles, and hide in my room when it gets to be too much. Again, I know this isn't a therapy site, so I will save my complaining for the people I pay. Lol
Thanks again for the love and support. It will get better. I was just in pity party mode last night.
p.s. Lpkayak, I can't imagine having 4 kids to care for while treating this! You are a warrior indeed!
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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posted
I just read another post about Lyme rage. Anyone ever heard or deal with this? Maybe that is what my problem is.
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I am not a mom so I can't offer advice for that.
But I can offer a glimmer of sun/hope.
Letting go of that guilty feeling for not being able to "keep my end of the deal", "be a good friend", "keep a clean house", "stay organized", etc etc.
Letting go of that guilty feeling is the best thing I have done for my soul my ENTIRE life, and it took the misery and suffering of lyme to learn this lesson.
I get home from work, I climb into my pajamas and I go to bed.
No guilt.
To do list? What to do list? The only thing on my list is climb into pajamas.
If I am having an OK day, then anything extra I accomplish is a bonus, and is a success.
No guilt.
Once I stopped feeling guilty for not doing more, mentally things got easier.
We get beat on enough by society because we have lyme... We don't need to berate ourselves as well.
Let's leave that part to [coworker, mother in law, husband, wife, kid, neighbour, friend, relative etc.]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ames-surprise has 3 little ones i had 2 then a 10 yr break and so when lyme came i had 3 at home 2 of them were dx and txed as pre-teens/teens The other one at home was my difficult child and he refusrd to get tested or txed but a few yrs ago when he was about 35 he came to me about severe headaches bad enough to stop himfrom working and he tested worse than most of the rest of the family The oldest had left hime and was married with a son when he asked me for the name of an llmd. He and his wife went to one of the best llmds in the country and my grandson went to the famous dr j
It was hard but i am sure 3 little ones are harder
I hope you get a handle on thingd
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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