I just needed to unload

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PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 1/10/2018 12:58 PM (GMT -6)   
8 weeks into treatment and I have to say I am hitting caregivers/patient's fatigue.

I knew this was going to happen. We all went through treatment before in 2014. Both kids were severely affected by their lyme and missed 3/4 of their school year. My husband and I, also in treatment, pushed through.

But now, 3-4 years later, it is so hard to be at it, again. My son who is a junior in school isn't making it to class. He has a 504 but still work needs to get done and he doesn't have the stamina. It appears he might have to drop all of his classes. My daughter who does virtual schooling is doing little to none. Their connections to friends is almost 0. Every day is the same. It is REALLY hard.

I know we will make it through. But I needed to vent. I have cut off all connection from Twitter and FB because it is very hard to see who we were and what we are missing. I appreciate this board because I know you all get it.

I have a meeting with a counselor next week. I know that is important.

Wishing you all continued success with your treatment and hugs to each of you whether you need it or not.

Warmly -


Peppermint Tea

PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 1:07 PM (GMT -6)   
Peppermint, I think the counselor is a great idea.

I can't imagine being a wife and mother and doing all those duties with lyme. That is rough.

I sure get it. For almost a year my house was a mess. Quick meals. I didn't want to go or do anything. I was a blob on the couch that took tinctures and cluttered up the kitchen counter with all my "herbal stuff." Thankfully my husband was supportive and did everything he could so I would not feel guilty.

But guilty is what a mom and wife does best sometimes.

Talking to someone really helped me see that I was doing pretty darn well. That I was sick and with that word sick came new adventures for me. I had never been sick before, cept for a cold.

Just hearing the doc say that what I was feeling was normal and that it was okay to cry and be sad and depressed was huge for me.

I hope you find a good one like I did. A doctor full of compassion is what I found. At a walk in clinic, no less!! I shall always be indebted to her for her kindness.

Good luck and you are in my prayers along with the rest of your crew. <3

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 1/10/2018 1:17 PM (GMT -6)   
Thanks, PeteZa. I appreciate it.

It is just so hard. I know we will get better. Treatment in 2014 got us all to about 70-75%. With this new Dr. I know we will get there. I just don't think the kids believe. I honestly feel they have given up (at least for now).

I know they need time to get to where I am mentally; that we will kick this. Heck so much of their childhood has been illness so they don't know much else. I just want to see fight. Depression is so hard to see day in and day out.

So yes. I know talking this out with a counselor will be helpful. I am working on get them in with counselors, too.

Oh, and on keeping a Martha Stewart house & meals , I so gave up on that in 2014! smile

Thanks for responding.

Caio!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 1/10/2018 1:22 PM (GMT -6)   
PPT - I also think that talking to a counselor is a great idea.

I did that for a few months prior to my diagnosis. Sometimes I would walk in the door and tears would fall.
I needed to 'unload' on someone other than my husband.


I'm so sorry that your whole family has lyme...that would be very tough.


Sending you hugs.

And, you are in good hands with your LLMD now.
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

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 1/10/2018 1:30 PM (GMT -6)   
Thanks, Girlie .

I am definitely in the crying stage. The mepron probably isn't helping smile

I hear you about unloading on a counselor instead of a spouse. This chronic illness stuff is heavy stuff and like the weekly trash it needs to be taken out and away from one's home - thus the counselor.

I am so very thankful to have found the JC. Just the fact they found a lesion on my daughter's brain makes me feel like we are in the right hands. Can't wait to hear about your visit. My husband has his phone followup tomorrow.



Have a beautiful day.

Warmly -

Chrisann

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 1:31 PM (GMT -6)   
Peppermint, as my daughter was going through chemo, radiation and surgeries for breast cancer, the house was in a horrible gloom.

She was suffering but so were all of us that loved her.

We did comedy marathons. We had to get laughter back in the house.

It actually drew us all closer and we learned who like corny jokes, who liked puns, etc. It was fun watching Friends and Mork and Mindy again.

Maybe dedicate a time in the home for humor only. Laughing sure helps heal.

Not a very scientific tidbit of help, but worth a try.

Hugs my friend.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 1/10/2018 1:37 PM (GMT -6)   
Oh my goodness, PeteZa. Your daughter went through chemo?! Is she okay,now?

Back in 2014, it was 'The Walking Dead' that brought us together as a family - no judging ;). It spurred some great discussion.

Yes. Humor. That is a great idea. Our crazy Labradoodle provides some but some daily corny jokes would be great.

Thank you.

Warmly -

Peppermint Tea

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 1:50 PM (GMT -6)   
My daughter was 35 and found a lump, way before the yearly mammogram is advised. She fought hard for 3 years and then peacefully went to heaven in 2009 as the cancer went through her entire body.

She is in Paradise, so I'm not worried. It is hard for those left behind. Husband and 3 kids. Hubby has remarried and the kids are all in their 20's.

My lil Nanny child Samantha has a labradoddle and that dog is the nicest dog I have ever known. Full of energy and dang smart!

They named him Buddy because of the Elf movie.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 1/10/2018 1:54 PM (GMT -6)   
PeppermintTea said...
Thanks, Girlie .

I am definitely in the crying stage. The mepron probably isn't helping smile

I hear you about unloading on a counselor instead of a spouse. This chronic illness stuff is heavy stuff and like the weekly trash it needs to be taken out and away from one's home - thus the counselor.

I am so very thankful to have found the JC. Just the fact they found a lesion on my daughter's brain makes me feel like we are in the right hands. Can't wait to hear about your visit. My husband has his phone followup tomorrow.



Have a beautiful day.

Warmly -

Chrisann


Oh, the Mepron! I had some tough times on that yellow goo. I still don't know if it was a side effect of Mepron...or if it was a herx. Most likely a combination of the two.

Funny (not funny) that when you're in the midst of it...and feeling so badly - you sometimes can't see the light at the end of the dark tunnel...no matter how many times you've been there and done that.

I realize now how bad I was during the summer months...now that I've come out of the Mepron 'fog'.


I'm glad you feel confident with your decision...I'm hoping for the same.
I need to control my enthusiasm....or I'll set myself up for a let-down when I go. I need to tone down my expectations....
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

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 1/10/2018 3:02 PM (GMT -6)   
PeteZa said...
My daughter was 35 and found a lump, way before the yearly mammogram is advised. She fought hard for 3 years and then peacefully went to heaven in 2009 as the cancer went through her entire body.

She is in Paradise, so I'm not worried. It is hard for those left behind. Husband and 3 kids. Hubby has remarried and the kids are all in their 20's.

My lil Nanny child Samantha has a labradoddle and that dog is the nicest dog I have ever known. Full of energy and dang smart!

They named him Buddy because of the Elf movie.


PeteZa, I'm so sorry about your daughter. She was so young.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 3:49 PM (GMT -6)   
Me too, but now PeppermintTea needs our help.

It would be nice if we had a lounge where we all could meet and have a cup of tea and just hug each other with encouraging warm vibes.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 1/10/2018 3:59 PM (GMT -6)   
Oh, PeteZa - You lost a child. Geez. I cannot imagine what you all went through and the little tugs you feel at your heart still today.


I so appreciate how you are a sprinkler of warm energy. You were during your daughter's cancer battle -The funny movie marathons you held. And you still are today with the kind words and advice you share daily on this board, although you are healed.

You are a good egg. Thanks for sharing yourself with us all.

Warmly -

Peppermint Tea

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 4:59 PM (GMT -6)   
Muaaaah to you Peppermint.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 1/10/2018 5:08 PM (GMT -6)   
You guys are the best...what a great gift we have here
Hope you all have a nice night and let some laughter and smiles in

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 5:09 PM (GMT -6)   
You too Jo!!!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 1/11/2018 4:03 PM (GMT -6)   
I am truly sorry. I am pretty sure I can relate to a lot of what you are going through.

I feel so alone many times. Dealing with a chronic illness is lonely... but dealing with a family full of chronic illness is isolating.

I never thought this would be my life.

Wish I could write more, but I need to run.

Sending many {{{HUGS}}} your way.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 1/11/2018 4:17 PM (GMT -6)   
Peppermint Tea - I have been thinking of you the past two days and planned to email you today or tomorrow. You are definitely at a hard, hard time with the treatment and it is so difficult to hang on but it will be worth it.

That's great you are going to a counselor soon. I wish we could have gotten DS to one. Now that he is mostly better, I can see he is trying to process it more. It almost seems like he couldn't even "see" it while he was in it. I wonder if since your kids are so down and out right now if you could find a counselor who could do Skype with them - I know it's virtually impossible at the current stage to plan anything, even a Skype call, since they could be totally out of it but it's a thought I had and one I wish I'd come up with while DS was at his worst.

I'm so sorry to hear your kids may end up needing to skip this year of school. It does often get to a point where learning is unsustainable.

I agree with Peteza about comedies. When DS couldn't lift a finger or think straight, he naturally gravitated to comedy series and watched many of them the past 3 years. Depending on brain fog, books on tape/Ted talks and documentaries can be a way to continue learning on days/hours when they are capable of listening and understanding. We found that eventually even though the fatigue was there, brain fog was less and sometimes more educational stuff could be slipped in.

Keep us posted. I haven't been checking in as frequently but am glad I stopped by today - sending you a virtual hug!
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents
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