How does everyone deal with everyone around them doing normal things?

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Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 7/19/2009 12:43 PM (GMT -6)   
Every time someone walks out of my house to go do something...I feel a little ache inside of me. Sometimes I even sit here and cry. My sister just grabbed her tanning lotion and I said where are you going - "Oh, I don't know...maybe paddle boating...maybe to the beach...who knows...do you want to come?" I want to say yes so bad...but I know I can't. I'm so angry. Either I get too confused when I'm out or too anxious or too shaky and weak or something and I can't enjoy it anyhow, so what's the point in even trying? I know one of those things will happen, so until there is a day where I don't experience these things AT HOME, I'll never attempt to go do anything. It's bad enough here. I don't need to live it out there.
 
Maybe I'm whining...but it's not fair. I know I've had my share of fun in life, but it wasn't supposed to be over, and I'm not getting any glimpse that it's coming around again anytime soon.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/19/2009 1:12 PM (GMT -6)   
aww Jen, i wish there was a way we could enjoy life as we once did. i so understand where your coming from. i am at my most peaceful when at home alone. i cant handle the noise others make. it drives me crazy. yet no one here understands it.

in the last 2 yrs i have went from the social butterfly to a hermit. and this also drives me crazy. like you i so want to be able to go and do. but i cant. 1 i know my knee wont hold up and 2 i know my eyes will cause me to have a migraine.

whats the fun in that? knowing full well if i go i am going to be in so much pain and then in bad for a few days to make up for it.

Lyme is the worst of the worst of you ask me. it takes so much from us, and then you add in the bull we go thro from doctors and wow. its no wonder we are depressed so much of the time.

only bright spot in all this, i feel is the getting to know ya'll here. i know i am not alone. and all i have to do to be with others who understand. is click on the PC and ya'll are there. :)

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 7/19/2009 1:12 PM (GMT -6)   
Jen, You're not whining and if you are you have every right to. It's so hard for others to understand what we're going through.

I've been crying for days now over the same thing. I feel so trapped and also don't see any glimpse that it's coming to an end anytime soon. My emotions fluctuate from anger to sadness.

Hang in there and remember others have gotten better and we will too.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 7/19/2009 2:05 PM (GMT -6)   
Jen I totally know what you are talking about. It was hard to watch my kids not be able to go to school or even to the pool.
I do have some things that made me feel better...some tricks of the trade if you will.
Make your bedroom a place that you love.
I had mine painted a very pretty teal. I got the best pilllows and so on.
Then a soft light for by your bed. My lighting had to be very soft. This can be done with lower watt bulbs too.
I got a singing canary...Sanatra...lol...and whenever he sees me...he burst out in song for me.
Get orchids from hoe depot..and put them all over the place. Flowers make me happy. And cut flowers die to fast.
Get a animal of some sort for company. We now have a rabbit...hop hop, that is potty trained and begs when we open the frig for carrrots.
Get some one to go to target to get you a scrap book and the fun stuff that they sell to make them cool.
Make scrap books of your life up till now. I had so much stuff that I had not put together.
And rest assured that this bad time will pass. And know that being home with a loving family is the most important thing anyways.
I use to love to cook....chop up things....make sauces.....try difficult stuff in my favorite Italian books.
Or learn how to make a cake or bread from scratch. The smell of food cooking and making something pretty and tasty made me feel better too.
Hope this helps some.
My whole family got very sick back in 2002 while spending our summer in Martha's Vineyard. We found tiny ticks all over us.  My symptoms were too many to list.
But the worst of them was heart problems, depression, pain in evey joint , vertigo, dementia, fever, anxiety, migrains, bad night sweats, nightmares, insomnia, awful fatique, memory loss. And then unable to finish a sentence, drive, cook, and care for children.
Took me till 2009 to get treatment that worked. I tried everything else.
Alternative medicine worked for me.
My 6 year old developed insomia, moods swings, cogintive problems, pain in joints, and depression and anixiety and OCD.
My 11 month old developed severe arthritis and nausea, and migrains and fatigue.
Lyme is a battle. I am now trying to get my children the same treatment that I received at Envita.
 
 


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/19/2009 4:08 PM (GMT -6)   
i'm learning to deal with what i have.. i'm able to do stuff.. i just try to block out the negative emotions that i'm feeling and try to stay as positive as i can.. And i force myself to think and use my brain. I honestly think i'll be back to normal.. it might take a while.. but i'm forcing everything now. I don't have time to be sick, my life is too short for this crap. i'm going all out!! i don't really care anymore how it makes me feel.. I'm trying hard everyday to be my normal self again.. even though i have pain in my back/chest. or wherever..

i would say, keep on pushing, make yourself do things... baby steps at first.. then you'll get there..

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/19/2009 4:32 PM (GMT -6)   
LK - I think James is saying that he is trying to find that person because he knows he is still in there somewhere under all of this...

I think it's important to remember that we haven't vanished, and it is easy to feel like you've lost yourself when you're sick...trying to find that person again is a common and probably instinctual response to this feeling of loss.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/19/2009 5:54 PM (GMT -6)   
A lot of us feel that way...but we all deal differently...it isn't right or wrong as long as you're taking care of yourself as best you can...each of us has our own ways. Please remember what works for you may not work for someone else and vise versa.


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"

Post Edited (Jendays247) : 7/19/2009 6:00:02 PM (GMT-6)


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 7/19/2009 6:29 PM (GMT -6)   
When I was feeling really weak and fatigued I had no desire to go anywhere or do anything, but I at least tried to sit outside up on the deck, not down with the ticks, for a little bit every day. A little bit of fresh air and being in nature helped me. I also feel as though I finally got to know myself better than I ever really did before. I learned things that it might have taken a lifetime to learn if I hadn't gone through this. I did notice that I started to talk to myself more, also my dog, birds, inanimate objects.....the result of spending all day alone!

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 7/19/2009 6:40 PM (GMT -6)   
I cry, I pray, repeat...... I try to have a positive attitude, but it is not easy. Some times I do well at coping, other times I fail miserably. This thread reminded me of things to do to combat the darkness. Thanks. It is good to have this forum to go to for companionship, understanding, and enlightenment. You are all amazing individuals. I will rejoice in that fact and try to smile...... Blessings to all, you deserve many,
bablymers mom
 
P.S.  if you can afford it, treat yourself to the help of a housekeeper!  It makes the burden more bearable.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 7/19/2009 6:45 PM (GMT -6)   
I too have very hard days. I realized how much I became housebound when I saw a woman from town and she had given birth to a baby girl 2 weeks before. I didn't even know she was pregnant! I live in a small, so I always run into everyone at the market or the coffee shop. I realized when I saw her how disconnected I had become over the past year. I used to love to cook, clean see friends,etc. My husband takes care of the house, I only cook because my kids have to eat but I haven't opened a cookbook for over a year. I do what I have to to make it through the day. My bedroom is my favorite place in the house. And bedtime is my favorite part of the day.

Somedays are much better than others for me. Sometimes I am so positive and feel I will really kick this. And other days Lyme just stinks, and makes me angry and in a bad mood. Those are the days I don't answer the phone. Those are the days my family can look at my face and know that "mom is not happy today", those are the days I could cry because there's nothing I can do about it. I have been dealt this. People are dealt things all the time that suck. I just thought at age 40 I would be in a different place than this right now. Lyme consumes every part of me and I hate it and I don't know how to make that go away.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/19/2009 10:13 PM (GMT -6)   
I know it's tough Jen- I have a TWIN sister, who is perfectly healthy. It sucks some days, when I want to go do things, and I can't. But what I do (once I'm done with the crying) is make a list of all the things I'm going to do once I'm better. It doesn't work for anyone- for some people, it just makes them more unhappy- but for me, it's a way of keeping a positive attitude, and telling myself that this isn't permanent, and one day I'll be better! I can't always see it- but I make sure to remind myself that it IS there- even when I can't see it.

Hang in there! It seems (from your posts) you've been making progress lately, so make sure to count all the things you CAN do, that you couldn't do before.

Hugs!

Nicky

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/19/2009 10:32 PM (GMT -6)   
LymeKiller,

Please start your own threads. If you cannot be supportive to someone in need, please don't post. Jen needs advice and help from everyone. This thread has turned into her helping you. Please have some compassion and understanding.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/19/2009 11:28 PM (GMT -6)   
Nicky,
 
That's so funny you mentioned the list! I have a couple of lists that I made, and on really bad days I made notes next to them that say "I'll never be able to do any of these things" ... but I'm going to make a new one and not taint it with negativity!
 
:)
 
 
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/20/2009 5:20 AM (GMT -6)   
I had this issue when I first got sick and sometimes still do have times when I have a small problem with it.

I guess the worst part for me was not being able to plan anything. I would have friends call me and say..lets go do this on Staurday.. I am like it is Wed., I have no idea what Saturday will bring me. They had a hard time understanding this.

I had an even harder time dealing with it. I am an "on the go" 24/7 person. We have a classic car and every weekend we were off to some show with it and friends.

For the 1st year of my illness we went NOWHERE with it. I was so bummed. I missed my friends we would go to shows with, I missed getting out..I think that contributed alot to depression and a major funk.

Finally, I made up my mind that I was going to try things again, a little at a time. I actually had some anxiety attacks over this, and  was looking for the closest hospital where ever we went. Not fun.

But, as time went on and I actually got out...sometimes only for 30 mins. at a time...and if I felt really bad we just left. Made no excuse, would just leave. I kept trying and trying...and it has made a world of difference. I found I could get out and do things...not like I used to...But I could still do little things. What a mood booster that was!

Now, I can pretty much for the most part...go and do. Not 24/7 like I used to..But I am not that person anymore...I am a new person and I adapt my life to what I am now....but can get out and it is wonderful.

Try not to dwell on what you are missing or cannot do...Take some baby steps and enjoy what you CAN do. Maybe try going to the beach and just sitting for 15 mins to start. Close your eyes and hear the waves and the seagulls, inhale and smell the saltwater, hear the little kids squeal with excitement as the water hits their toes...let it refresh your soul.

Take baby steps. We all have to start somewhere!


Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain

Post Edited (1bitten2xshy) : 7/20/2009 5:41:49 AM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/20/2009 5:31 AM (GMT -6)   
1Bitten,

That was an amazing post!
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/20/2009 5:49 AM (GMT -6)   
Thanks Canjun.

With all this miserable disease brings us, it does teach us some good things as well.

I have learned to be alot more appreciative for my friends that stuck by me, my wonderful husband, more compassion for people, alot more patience that I ever thought possible for me, and most importantly to be thankful for all the "small" joys in my life.

While I would very often sit and wonder...why me? What did I do to deserve this? Look at those drug addicts, rapists, murders etc etc...why me? I never did anything like that.

Then I would think about all the good, kind people and children out there that have cancer, and know it is terminal or some other kind of horrid disease and pain that they know they will have to live with for the rest of their lives.

At least we have the hope that we will get well. I truly did learn the meaning of "there is ALWAYS someone out there worse off than you". I never understood that until Lyme came into my life.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


jessMi
Regular Member


Date Joined Jun 2007
Total Posts : 108
   Posted 7/20/2009 2:08 PM (GMT -6)   
 
One thing I can say I have realized from being sick is that people that are healthy dont realize how lucky they are and I also realized that I have placed much more importance one the small simple things in life that before being sick I took for granted or over looked. It's been hard for all of us and can be very frustrating and emotional and seem like its taking forever to feel better but in the end I think we will be much more compassionate understanding people that appreciate what really matters in life!! On the other hand it's sad too this disease has cost me many friends that didnt want to take the time to understand or be what a true "friend" is though I have also gained so great friends that are there not matter what, even on my worst being a nutcase days! Lol :) 
 
I just have to keep reminding myself to take a deep breath and get through today the best I can and that im one step closer to feeling better than ever before and so are all of you!!! :) WE WILL ALL GET THERE AND BE HEALTHY!!! blush
 
Hugs,
         Jess

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 7/20/2009 5:30 PM (GMT -6)   
jess,
 
Awesome post!  You have a great attitude.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/20/2009 5:45 PM (GMT -6)   
Weird that I posted this...because today I actually woke up and felt okay this morning - (it was another 'stand up in the shower' day) and I decided to drive around with my sister while she ran some errands. I did take stuff for anxiety in advance but even then I usually am still a wreck...and I'm so thankful that today, for that little amount of time, I wasn't.

Confusing to me how it can be so bad, so good, then so bad again, then so good again! I guess it's not really supposed to make sense though, huh?
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/20/2009 7:23 PM (GMT -6)   
Jen,

How awesome that you were able to get out with your sister! I'm so happy for you:):):). See all my smilies? LOL.

You feeling good one day then bad the next is what I went through in the beginning of this disease. It was very weird and sometimes I would question if I was really sick. This is what Lyme does, unforunately. I went from a few good days recently, to none at all:(

Anyway, did you girls have fun?
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 7/20/2009 9:04:52 PM (GMT-6)


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/20/2009 8:05 PM (GMT -6)   
We just drove around and listened to music and talked...only for like a half hour...and then...

I went out for ice cream with my mom tonight! The city I live in just built up its downtown area in the past 5 years or so and I never really got the chance to enjoy it...so even though it was just for a short time tonight, we went down there to Dairy Queen. I can't really stand in line because of my balance but other than that I was good.

I wonder if feeling good and bad is part of recovery too. I have pretty much consistently felt bad and have not ever said "this is a good day" because things were so constant. I am now noticing very distinct differences day to day.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/20/2009 8:24 PM (GMT -6)   
Thats awesome Jen!!
I know how you feel though sometimes I complain to my fiance that we dont wever do anything then os sunday he wanted to go to a Bar B Q at his friends and take me and I was too week to go you know the feeling like when you feel like your legs are just going to fall out from under you and you cannot even think to be able to pay attention and speak with people.
He went by himself and he was a little sad i didnt go but he didnt stay to long without me.
I felt bad though but what can you do.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/20/2009 9:07 PM (GMT -6)   
Jen,

Maybe there is a light at the end of the tunnel after all. Remember this day when you get down on yourself again. It will give you some hope.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 7/21/2009 11:17 AM (GMT -6)   

I have a Nerf rifle..... it has a scope and a red light.... it shoots "nerf" bullets!  That's how I deal!

 

rolleyes rolleyes rolleyes scool scool scool smhair smhair shocked shocked skull shocked shocked smhair smhair scool scool scool rolleyes rolleyes
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/21/2009 5:03 PM (GMT -6)   
I went out to lunch today...I was so shocked that I made it through...and I went to the dentist...I think this is the most normal I've felt in so long.

That flagyl must've kicked some ass. I can't wait to tell my doctor.

I have a dentist appt next Tuesday and I'm so nervous to be sitting in that chair long enough for an exam and I have to get impressions again because I need to wear a retainer at night! Ah! I'll be doubling up (maybe triple even) on the anxiety meds that day.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"

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