posted
I am sure many of you have felt this way some time or another. I feel like giving up. I want to run away from this, but like other problems you can not, because it is physical and you are contected to your body.
I don't feel that my family totally gets it and I don't want to scare of children. 14, 10, and 3. There are the light of my life and what I have always lived for being a mother and caregiver. I love my job before I got lyme, but now feel so burdened.
I just want this all to be a bad dream and to go away. I have been on abx , iv and different orals since last June. I know that it isn't as long some of you, but it feels like a life time.
Thanks for letting me vent a little here. Your post and encouragement are always a big help. Information and experiences from others really help me get through this.
Janjan
Posts: 30 | From warrenton, virginia | Registered: Nov 2005
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posted
Hey, I share your feelings many times. In my darkest moments it felt/feels like the pain was too much to bear--it clouds my ability to be loving to my family and I don't like the person in my skin. But what to do?
This is a terrifying disease to begin with, then add that fact that nobody understands you. I once heard a woman who had two episodes of cancer and lyme disease...she said she would trade two more cancers if she could get rid of lyme.
This said, one of my neighbors recently succumbs to her battle with metastatic cancer. She had three small children who she was always toting around. Now to see her husband trying to manage without her is tragic.
As you can imagine, I try to remind myself that although sick, I am here. I will be here a long time (God willing). My children may not have me as the active mom they used to, but they have me.
Is your husband supportive? When I get overwhelmed with the house and kids, he will call a family meeting. He made a sign out of construction paper and crayons that reads "HELP" in big letters.
He then makes me hold the sign during family meetings to try and get the kids to know that right now mom is needy and everyone has to be on the same page. "She is there for you-now it's your turn to be there for her. We delagate chores. It doesn't always turn out great...
(My 15 yr old daughter "Well, God, when WILL she get better?"
My 13 yr old son - "Does this mean I have to keep feeding the dogs forever?")
I found that funny shows on TV helps. This website helps. Laying down often helps. Reminding everyone in my life (including myself) that I have a new slower PACE. It is not in step with theirs but they must respect it.
PM me anytime-us mom's need each other... Kim
-------------------- We are spiritual beings on a human journey...
posted
Jan, yes, I'm sure we all feel this way at 1 time or another. That's why this board is so special; they ARE walking in our shoes & have their own experiences to share with us all.
I've been feeling the same way now; on abx since 8-04 after my misdx of 34 years!
As a newbie, be sure to go to TREEPATROL'S NEWBIE LINKS of 8 pages & print it off. Check off the ones you read...important ones first! Months of reading there.
Print off Dr. B's 05 treatment guidelines, 40 pages, since he's our expert LLMD on CHRONIC lyme.
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Jan,
If you're stagnating in treatment this is often attributable to untreated co-infections. Perhaps, if you could be a little more specific on meds, dosages, etc., we could offer some advice ?
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Just to give you an update. Diagnosis 7/05. Had typical rash,in May/05...thought is was poision ivy...big mistake. Had to fight to get a lyme test...one positive and another negative...different GP. Had to switch because the first dr. was not listening to me... Meds 1 month = doxy 3 weeks = doxy/omnicef 10 weeks = iv rocephin 6 weeks = biaxin/omnicef now on 3rd month = ketek
I had testing for co-infections, but nothing came up. I am scared that I do have babs...because of consistant headache and arthritic and muscle aches.
I would appreciate any insight you have on my meds. Thanks
Janice
Posts: 30 | From warrenton, virginia | Registered: Nov 2005
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posted
Jan, as a mom to four kids, I understand where you are coming from. I used to do and be everything for them. My life revolved around them. Now, I take time to take care of myself more often. Respecting the needs of your body is a wonderful lesson for your kids! By slowing down and meeting your needs, you are teaching them that it is ok do this for themseves. Trying to be a perfect mom through your pain teaches them they have to be perfect as an adult, too. That's hard to live up to. Hang in there, Lisa
Posts: 24 | From California | Registered: Jan 2006
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Humanbeing - Your hubby sounds like a keeper.
Posts: 399 | From Texas | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am on your same page today.
Have had lyme since 91 but many many years without symptoms in between treatment times. Still, this last round has been very very painful and long.
Here's one for ya--- I actually am JEALOUS that you HAVE children, for I can NOT. And b/c of this illness, I am broke and can't afford to adopt. Also- I am very conscious of the fact that I am often too sick to work, let alone raise children.
But you dont need to hear what you are blessed with when you feel like CRAP and wanna scream at the top of your lungs----get this damn disease OUT OF MY BODY!!!
Is there anything more annoying than someone telling you that you should feel blessed when you feel CURSED?
Jeez--I need to get a grip over here...who am I talking to?
I find this board very healing. I like that it is so focused and not mean. I have been to other boards on varying subjects and the people there are VULGAR and down right rude. You guys are rock stars!
On the general support board there are some great recommendations for books to read that have many us cope with having a chronic illness. You might have some at your local library. Reading some of these books has REALLLLLLLLLLLLLY helped me tremendously. (BTW-I hate self help books and have never read any others except ones about LYme/chronic illness)
Here is what has helped me this week...it is something that TIMACA wrote The other (thing that helped me)came from a speaker at a camp. He was talking to the staff members there...in between sessions. One group of campers had just left. The next were coming in a few hours. This is what he said. "Last week is over. It is gone. Those kids are gone. New kids are coming. They need your love and your attention. Do not compare this week to last week. It will distract from this week. Give your all to this week. To these kids. Love them like it's all you have ever had to love. Live in the moment, in the now. To look back and compare is not helpful, and will only distract you from the job at hand."
OMG---don't you LOVE that---I have to carry that in my brain and say it over and over to myself. I am still not sure I believe it, but sometimes you gotta fake it till you make it.
Nothing else compares to being sick with Lyme. It is truly maddening. An INVISIBLE chronic illness like lyme is the pits.
I just made a hot bath, cried in it for an hour and poured some of that Batherapy stuff into it. It is green and it didnt disolve all the way so there were little ameoba like green things floating around in it. I took to squashing each and every one of them with my fingers saying "I HATE TICKS---I HAAAATTTTEEEE TICKS ----THIS SUX----LYME SUX---"and well.....you get the picture. Just dont try to imagine me naked, for that will NOT be pretty one!
I will let you know if it was helpful. Too soon to tell.
Distraction is also helpful.
I hope you have a restful night. Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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JimBoB
Unregistered
posted
If you don't read any other book, please read Healing Lyme by Stephen Buhner.
And by all means add Herbs to your regimen. It doesn't seem right that you still even need anything after all this time, since you only waited two months to get treated. I waited 5 months and had only 24 days of Cipro, then felt good for about 8 months before the symptoms started coming back, and my doctor wouldn't give me any more abx, so I finally did something myself, 6 years later, and just started two months ago, mostly herbs, but also NOW on some abx.
Check out my recent post on Herbal Protocol . . . . ..
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Janjan~
You are right, in that the only people who understand lyme are the ones who have it. Our family members and friends cannot understand this.
Trails started a thread in "General Support" about books that help with chronic illness. Those might be of help to you. I know I will check into the "Sick and Tired of being Sick and Tired" book.
Follow others advice here about checking for co-infections; making sure you have an LLMD following your care; and taking care of yourself (getting rest and asking for help) The laughter suggestion is good too (I personally recommend Dave Barry's books ).
Trails, glad the camp speech was helpful to you. It was to me too. I like the visual of you squishing the green slime in the bathtub, along with your comments of hating lyme. I think that will help ME keep a positive attitude too! By golly, we will squish these bugs out of existence!
I turn to the spiritual side of life too for comfort. I see God as having all things under control, even though we do not understand, at times, why we go through what we go through.
One story that hits home to me is that of Joseph, who was sold into slavery by his brothers (Nice brothers, huh). He ended up in Egypt, where the wife of the man in charge accused him of trying to rape her (he didn't) and then he ended up in prison for over 2 years. This poor guy had done NOTHING wrong, but his whole life was one punishment after another.
Finally, after some time, he was released from prison, and became second to the leader of the country.
A famine hit his homeland, and his brothers came seeking food, for under Joseph's rule, Egypt had prepared for the famine and had prospered.
Joseph recognized his brothers as the ones who had sold him into slavery. They recognized Joseph and were terrified that he would throw them into prison or execute them.
But, Joseph FORGAVE his brothers and said to them "You meant evil towards me, but God has used it for good to bring about the saving of many lives." He then provided food for them, and had his family come to live with him in Egypt.
Amazing, huh?
I'm sure that Joseph had his moments of wanting to throw in the towel and give up. His life was horrible for awhile. But, he trusted that God would bring good out of the evil, and that is what happened.
And that is what I cling to as well. Lyme is hellish. It is evil. It takes away our lives. Our friends don't understand it; many doctors turn from us when we need their support.
But, I HAVE to believe (or I lose hope) that something good will come out of my having lyme. And I also choose to believe that someday I will be well. Maybe not as well as I was, but at least more functioning than I am now.
And, actually, I do try to hope (at times) that I will be as well as I was (and this will take a miracle)....but with a differnt outlook than before.
Maybe instead of doing lots of hiking, I might try to help someone who can't hike, or has joint problems.
And I'll certainly do what I can to educate doctors about lyme.
Hang in there janjan. See the gifts in every day. They are there. And the people on lymenet are here too...and they are lifesavers too, for they truly understand. And God is always there. Sometimes when I hurt so bad, I just picture myself crawling into His arms. And I do find peace.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Timaca: I just read your post. wonderful. I have days that I would love the mac truck to hit me and crush the parasites the h--- out. I don't have a wonderful life- I am no longer a nurse, skater, ballet dancer, travelor that I was. I can't drive and aging parents take care of me. Severe neuro lyme with coinfections and eyesight problems. I went four months only able to sleep about 10 hours each month- I had night that if I slept a half hour i was hot stuff. I think that I know people love me, my two adorable cats, and trying to put some money into a college account for two year old niece and newphew keeps me going. My brother's first baby died when she was 26 days old in my arms in intensive care. I am sad and angry that because of this disease I can't be the aunt that I want to these children- but I hope that if I can do something for them for school, if I am not here, that they can be happy, self sufficient people as adults will be important. I hang on for my mom and stepdad who heart is broke that I have been wiped off the face of the earth- people are amazed as I lived in Phila suburbs and never was an outside person., somethinglike this happens. I struggle for answers. But I try to hang on for all of the good people and things that should be and are there. I found this web site and good people who suffer like us who are willing to help each other with information, kind words of encouragement and unconditional love. This really helps. I am here writing this post now- I have had a rotten day and the head to toe numbness that has engulfed my entire body for 5 months now seems like it is a little worse, if that could be today.I took my ativan, as it is one thing that does give me some relief and got on the board again to chat.I hung on to find my computer friends who understand how hideous this is. I hang on to educate other nurses and doctors who cross my path that aren't lyme literate- maybe someday we can make a difference. I hang on because I have always had a strong will and determination my entire life. I hang on because I will not let that piece of crap of a tick win that easily. I have learned to use my computer a little again, find a couple of small things to do,keep game shows on and do puzzles to keep my mind sharp and a little distracted when things get tough. May our higher powers be there and may tomorrow bring you a better day.
Posts: 719 | From Delaware | Registered: Jan 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
My kids have grown up with me having Lyme. Thank God they don't have it.
My daughter will be graduating from NYU Law school in May and getting married in November. I may have to attend both events in a wheel chair depending on how fast I make improvements.
Now I judge a successful week by how many days I make it to work. I have no life other than working and going to the doctor. I haven't even shaved my legs since before Thanksgiving!
It's now a year since I started seeing my LLMD. I've been infected since 1988 at least. It is VERY hard to stay positive when any improvement is miniscule and short-lived.
Right now I have the movie "ELF" on. Laughter is a great healer.
I accept help from whomever I can get it and I am not shy about asking for it. Quite a change from the way I used to be when I thought I could do everything myself!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Hi Jan! Been where you are, bigtime. I know it's a hard place to be, but with lots of support from family and FRIENDS here, you'll make it!!
I agree with NP40....get treated for babesia, no matter what the test says. Many astute LLMD's do just that.
Do a trial run of the meds for babesia [clindamycin/quinine or mepron/zith] and see what happens. If you herx, you know where you stand. If you don't, nothing lost except some $$$$.
You cannot clear Lyme without clearing babesia and other co-infections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I think that will help ME keep a positive attitude too! By golly, we will squish these bugs out of existence!
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