posted
I used to have a very active social life, lots of friends, clubs, hobbies. I was in community theater, dancing, acting, singing. I used to hike, rollerblade, go camping.
I also had friends I went on weekend trips, went to see live music, worked out at the gym, and many other things.
One by one I feel like every part of me has been taken away. I have no friends now, no life. I do nothing but work, and when not working I am home on the couch watching TV and web-surfing.
its been over a year now where I have been physically this bad where I can barely walk, stand, sit. I am bored with my life. I am not suicidal, but i do NOT want to live like this. I am only 43. Its no fun at all.
and PLEASE do not tell me to go on antidepressants or that I am depressed. I take enough medicine, I am on heavy duty pain killers for the constant nerve pain.
I am not depressed, I am just at a loss to try and find something I can still do with my life. I guess I used to be so physically active, I need to find something mentally stimulating since I am so physically handicapped.
has anyone else dealt with this and succeeded? I am driving my family nuts.
Posts: 615 | From maryland | Registered: Oct 2007
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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1Bitten2XShy
Unregistered
posted
Oh Boy, am I with you on this one. We are the same age, sick about the same length of time as well.
I too was very active, lots of friends etc. Have a classic car and every and I mean every weekend I was with the Club going to some all day car event.
Bam, lyme hit and I could not longer do those things. One by one the "friends" started to drift away...I guess they got tired of me "still being sick" A couple of them have stayed close and I am happy for that.
I now however, have had to change my thinking and once what was important to me no longer is. I am the important one now.
When I can I enjoy just sitting and watching the sunset, drive to the beach, a chapter read in a good book, try to jog the brain with a crossword puzzle.
Do I still have "pity" on me. Sure, there are days, lots of days when I say I do not want to live my life like this for another year or two or however long this may continue...I do mourn for the person I was. I mourn that I am no longer the "life of the party".
BUT...I rejoice because each day I wake up and I am able to get out of bed and do some of the above mentioned things. I rejoice because deep down inside I have hope that today will be a better day than yesterday. I rejoice that I have a LLMD and am making progress...albit slow it is progress.
I rejoice because in the end, I will be a much stronger person in mind, body and spirit for making it through this.
And WE WILL make it through this. Even in my darkest hours I believe this.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
same here.
and im only 25
i did have a hell of a good time b4 i got sick tho, and i plan on doing the same once i am well
its been 18 months of isolation and boredom and i too am very sick of it.
i can rarely drive, and its very hard to socialize.
i am fortunate that my older brother lives next door so i have some company as well as my wonderful wife, but trust me, i feel your pain.
sometimes i am so frustrated i scream, so you are not alone.
our lives have been placed on hold, thats all.
praying for you
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Wow, we are in such a similar situation, and I TOTALLY know what you are going through. I am only 25, but I mean you could have wrote that post from my mouth.
I had a great life, had a ton of friends, I was a performer (stage and film), singer, actress, dancer....you name it. Performing was my passion and I was trying to pursue it professionally.
I had a fiance, kids, and I have lost all my friends, even some family to this illness. I ahve been bedridden for a year of my life. I cant walk, cant cook, clean, Can;t stand in the shower or get my self out of the tub. I need the assistance of my fiance for EVERYTHING. Life is terrible right now and I sometimes dont know how I can go on like this.
I miss life so much...I have been this ill since giving birth to my daughter so I cant enjoy her, my son has lyme and I cant help him.
I sometimes just want to give up. I never have a good day, everyday is a struggle. I miss being able to walk, to sing, to LIVE.
Just know there is someone out there that really does know what you are going through.
Please go to my youtube page and you can see some clips of me performing and than some clpis of how I am now.....Its like a totally different person.
I wish you well, and hope you start to feel better REAL soon!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry things are still so hard for you roro
I really think that it is a grieving process. Mourning for whatever and however much we loss. This is especailly hard for thing we used to "do" that we identify ourselves by.
Trying to hold onto a piece of who i am underneath all the lyme in whatever way i can helps some... but i still had to grieve.
Now i try to draw with crayons even with my fingers that wont straighten and tremors... because long periods of time I couldnt touch my art at all. I think my long way round to a point was It helps to not completely loose who i am - even though it is just kids crayons on regualr old computer paper
as for socail life... does my cat count? Most of my time is spent with him.
Grieving doesnt mean that a person is giving up on hope. It means accepting/dealing with the change in the present.
posted
I am 28 and in the same situation. I used to love riding my motorcycle, go skying and just overall my body used to be bulletproof. These days I barely manage to work and the only thing that keeps me going is my girlfriend. Other then that I have no life and it's also mainly due to excruciating nerve pain that flares up every time I do physical stuff.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I am feeling upset today about all the loses too. I got sick when I was 30 although I'd been sick off and on since age 5. I lost a lot of my childhood to illness.
I'm now 53. Since I started lyme treatment 2 years ago I've been sicker and even more disabled. I did have a few good days several months ago and I cherish those and day dream that they will come again.
As has already been mentioned, there is a greiving process and it comes up periodically as we continue to experience limitations. It was harder for me in the first few years of illness although I do have a sense of urgency now as I get older and am still so sick.
I have spent a lot of my time researching for answers. I have had breaks from researching where I have been able to try to keep up with my field ie computer science. Those breaks were great.
I try to impart whatever knowledge I've been able to get to others in the hopes of helping others avoid years of suffering. It also helps me to feel that I'm not totally useless.
When I have days like today where I feel frustrated and very weary of feeling so sick, I think about others who are less fortunate than I am. I remind myself of the things that I have in my life.
I feel grateful that I can afford to get treatment and that I have a husband and family who cares and tries to help. I count my blessings and try to hang on a bit longer.
AND depression is a factor in all this so it pays to keep a close eye on it and consider getting help when it is needed. Counseling and or medication can be useful.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I am with you too . I was sick 10 years before DX . I am not able to work full time , and got a divorce around the time of the illness onset . Unfortunately, I moved to Texas and have to self treat now . I am dying to be able to work full time and feel better about myself. I really struggle with self esteem issues .
For those who have a supportive partner, YOU ARE BLESSED . I date some, but HATE having to explain why I do not have a career . I find it hard to believe that any man is going to want a partner who is " damaged goods" . ( I would not reject a person for a health challenge , but perhaps I am unusual) .
After two years of ABX and treatment guesswork , I am mostly PAIN FREE . However , the fatigue and FLU feeling are not much better . I desperately pray for a science breakthrough somewhere .
I am encouraged to see that people like Lymetoo have gotten better , and others here . It does not appear that most get CURED, but I suspect they make some progress . I guess we have to try hard to keep hope alive .
I find these posts touching and realize that though I feel alone, there are many others like me. Too bad we do not live near each other !
posted
another big change in my life is my son is 18, graduating high school this year and going away to college in the fall.
my only child.
a big part of my life has been soccer games, wrestling meets and lacrosse games. I am going to miss being a mom.
Posts: 615 | From maryland | Registered: Oct 2007
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1Bitten2XShy
Unregistered
posted
You will always be his Mom...He is growing up, and may no longer "be your baby", but he will will always be your Son and you his Mom.
We lost our only son a little over a year ago @ 25 yrs old to a tragic work accident. I would give anything to be sending him off to college now.
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I can totally relate. I was very active too. Going to the gym 4-5 times a week and fitting in pilates classes between being a busy mom and going to ALL my children's school functions. In addition I worked in my own business.
Well I have been treating for almost 3 years and am worse now. I can barely walk, have to use a walker and when I go out a wheelchair. I hardly go out except for Dr appointments, and my children are used to me not going to family and social events. It hurts that they don't even ask anymore if I'm going, just assume I'm not. I am in pain and everyday is a struggle just to get out of bed and get dressed. I haven't driven in months and I dream about going back to work.
My husband has to do all the grocery shopping and cooking (I am grateful I have that support)and even helping me in and out of the shower. He drives the kids to their activities and goes to their teacher conferences. Things I always did.
I still have afew friends but most have evaporated. Who can blame them I can't go anywhere and even though I talk about other things (CNN is my friend)it is obvious by my physical appearance that I am ill. I don't expect people to say anything but I think maybe they are uncomfortable. What can they say, I mean how many people have they known who are sick for YEARS.
I am lonely and bored. With the summer approaching and my kids home for the summer it will be all the more glaring as to the extent of my disability. The summer is time for the beach and fun with my kids and yet another summer I will be laying on the couch.
I can so relate to what all of you are going through.
Posts: 262 | From nj | Registered: Dec 2007
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quote:Originally posted by 1Bitten2XShy: You will always be his Mom...He is growing up, and may no longer "be your baby", but he will will always be your Son and you his Mom.
We lost our only son a little over a year ago @ 25 yrs old to a tragic work accident. I would give anything to be sending him off to college now.
I am so sorry about your son I lost my brother to a tragic accident when he was 23 years old, and I know what my family went through. I realize I am lucky to even have a son.
What I know I am going to miss is the sporting events. He has been a versatile athlete for four years, and this past couple years, going to his games has been the only thing I still manage to do. Even if he plays sports in college he will be 4-5 hours away.
I know I need to find a life and my own interests, but its so difficult, I really can't think of one thing I want to do that I am physically able to do.
Posts: 615 | From maryland | Registered: Oct 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Very active here too. Im glad I took a lot of pictures. Lost all my friends coworkers dropped off one by one.
Its friday nite and im in bed next to my very faithful cat. She loves me.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
roro: I, too, go to all of my brothers games-he plays baseball, basketball, and soccer. Hes only 12 though so he'll be playing for awhile longer. Like you, lately thats the only thing I have enough energy to do, so I know how precious these little things can be. Dont have the energy to talk or hangout with friends, never mind a bar, even though Im 21! Life sucks right now hopefully it will get better soon
Posts: 370 | From NJ | Registered: Dec 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i just want to say i understand completely what you're all going through.
at least we have each other, right? funny how strangers over the internet can feel so very much like family.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think the hardest thing for me was buying tickets to do something & being too sick to make it. I also miss traveling. I used to travel alot for my job.
After I lost my job, I started doing more fine art & curating of art exhibitions. I had to stop all of that due to being too ill & not having the energy.
Of course all the "friends" slipped away... but I'm OK with that. I have a good partner & he's understanding. We have a business together & it's OK but I do make alot less money then before I was ill.
I also have a pretty vivid "inner life". Sometimes, I'm lonely but it's not too bad. I'm really appreciative of this message board.
I think someone mentioned it before but things could be worse. I guess I have gotten over the worst part of "Where did my life go?" I've just come to accept that this is the deal & I try to strive to feel better.
I'm not one of those people who feel there's some lesson to learn & I'm a better person from being ill. It's just something I have to work through & deal with minute by minute. It sucks but we just have to live through it until we find a way to get better.
I wish everybody good luck with their process of getting well again.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bettyg
Unregistered
posted
quote:Originally posted by heiwalove:
i just want to say i understand completely what you're all going through.
at least we have each other, right? funny how strangers over the internet can feel so very much like family.
DITTO! we are each other's BIGGEST LYME FAMILY: .
supportive, understanding, encouraging, praying for each other, tell it like it is when needed to be, fights or squabbling at times, but there for YOU when the chips are down.
RORO, how about continuing to go to the sports your son played in and yell for the kids whose parents do NOT come to their events and encourage them on.
RORO, my gut reaction was also this due to our lyme war going on w/lyme bills in congress:
blumenthal's wonderful HOPE of their 20 month investigation dampered by IDSA's meeting with REP. PALLONE'S ENTIRE HEALTH COMMITTEE LAST FRIDAY
you want to use your mental skills; how about putting into words what you've gone thru .. example, copy the above, email it to the entire HEALTH committee and KENNEDY'S committee members, and our own federal senators/house reps!
see if you could talk at your local library and give a program on lyme disease prevention and lyme politics!
you'd be working out your anger in a POSTIVE, EDUCATIONAL way! what do you think roro??
best wishes to all of you for sharing your most inner feelings and vulnerabilities to all.
YOU ARE MY FAMILY; i can't wait to get on here daily and read some GOOD NEWS about you as well, or give my personal advise or share my newbie package with all joining this LONG, LONELY, LYME JOURNEY FULL OF EXPENSES $$$ !!
HAPPY'S MOTHERS DAY TO ALL ON SUNDAY.
my belated sympathies to 1bitten2xshy on his upcoming 1st anniversary of losing your beloved son!
do you have my newbie package?
have you found my SYMPATHY POEM COLLECTION there? perhaps to read thru them to help comfort you mother's day weekend!
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I too can relate to the feeling of having no life anymore. I kept extremely active and although I had jobs off and on, most of my life was spent being a full time mom to four children.
And with that came all the volunteering. I mean I went overboard since I was a Den Leader, a Brownie/Daisy Leader, Room mothers at schools, volunteering with the school nurse, chaperones on field trips, dances, you name it.
Then it was all the sports between four different children. The juggling act was enough to make me wonder how I even kept up. And when I could find time between all that, it was the socializing for dinner, movies, hiking, anything to be on the go, go, go.
This disease makes our whole life stand still. It was bad enough going the five years of being undiagnosed, but then to get the epidural steroids for this so called degenerative disk disease....yet another diagnosis and that finished me off.
From there, I was bedridden and by the time I got diagnosed and started realizing what was going on, my children are off at college or else already graduated from college.
I'm getting "better"...not great, but definitely better than where I was, but wondering what I'm even doing with my life. And when I have a set back...which happens a lot, I wonder why I'm even still on this planet.
No, it's not a suicidal thought, which you too can relate to. We just don't want to be living like this and as I've sadly said, although I wouldn't take my own life, I would have visited Dr. Kovorkian if he had lived next door. So it does get bad.
But now with the kids gone, friends gone, since they stop calling after you keep saying you can't make it out anymore....pretty soon you start feeling like you turned into a hermit.
I know that not feeling well still is causing my mind to go crazy. There's a type of bordom going on, but on the other hand, I never feel well enough to actually go out and do much. So it's a crazy pull. My MIND sees me going back to my old life but my body is saying "no way".
Lyme is definitely a lonely disease and unless people have lived it, I don't think they can truly understand. My heart goes out to all of you since I think we all know what each other is feeling and going through.
This disease is a nightmare!!!!!!! About the best I have been able to come up with is to make sense out of it and instead of the "why me"????, I'm trying to make it a mission to make sure no family member or even an acquaintance will ever get as sick as I have been due to not knowing what lyme can do to us.
I guess we need to hang on to the hope and dream that our lives will return, but we sure did miss some precious years along the way and that's sad.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I totally hear you all! And I am so very sorry for anyone who has to go through this.
I went undiagnosed for fifteen years -- though it only took a couple years for every last "friend" to make an exit.
Even my old friends Music and Literature turned tail on me -- left me unable to read, unable to process sounds.
I feel so very fortunate to have found this board. The people here are wonderful! Thanks for all the support, and best wishes to everyone here! Posts: 1173 | From USA | Registered: Nov 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
quote:Originally posted by sparkle7: I think the hardest thing for me was buying tickets to do something & being too sick to make it.
I dont even make plans like that now
years ago there was a van gogh exhibition. and my parents took me towards the end of the running time cuz i just drug myself there and figured i would stop and sit on the floor if i had to... but the tickets were all sold out for that day.
Now frida kahlo is showing until may 18 but to get a ticket i would have to commit to a day and a time. and even though i have someone who would take me. there are days i am basically just unable to get up.
the sad thing to me is that i missed van gogh about 6 years ago cuz i was too sick and here it is all this time later and i am still too sick.
I am 31 and my grandparents are able to do more than me.
It has to get better at some point though. I miss being "me".
posted
I left one life behind when I was diagnosed 4 1/2 years ago
I managed to create a new and (I think) more authentic and happier life as I healed over the last couple of years...
Now that I have been in relapse for the past several months I feel like that's starting to slip away from me too....
But, I am back on the right kind of treatment plan now so hopefully I will get back to functioning soon...
Being sick is very lonely, isn't it.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know exactly what you mean chief. I have built a life inspite of only being around 35-45% functional most of the time.
What I do is reach out to others, I write, I sing and play guitar, and I try my best to exercise daily. I do have a "routine" life, but I've found that in-spite of the difficulties I face, Lyme Disease is a worthy adversary to dedicate time to.
I fight, and I search for answers. I like watching movies and studying different subjects. I like history, religion, science, you name it. I try my best, even though I'm quite slow compared to people who are healthy.
I also have a girlfriend now, which obviously isn't easy -- but it shows that I've come a long way. I took in a cat, so now I have a pet.
A lot of these things seem so trivial to most people, but for me, it's progress and I'm pleased. I also bought a car and worked on it quite a bit. I picked up a parts car of the same make and model and tore it apart. I replaced all the "****" on my car and then junked the parts car. It was a lot of work and time, but at my level of functioning, it was a good project.
As far as depression goes. I get depressed a lot, but Lyme Disease causes depression, so I know it's just another symptom that I continue to work on like the rest.
I'll never accept this illness, and I'll never quit until I solve the riddle, but I can accept today as it is, so that I can move past that to do the work that is necessary to improve my life and health.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I have so much to live for but life is not worth living in all this unbearable pain and brain stuff.
It's almost been one year since I started feeling ill and I feel soooooooooooooooo much worse now.
ONLY you fellow Lyme people understand how debilitating this is!!!!!!
I wish I could just sleep 24/7.....
Cancer patients get so much more empathy and I am convinced that most of them have to feel better than this.
They either get better or die. It is not a torturous,ambigous sp? disease like this.
Take this,don't take this,try that-you are loaded with toxins,the worse you feel the better you are getting.... BLAH,BLAH,BLAH
I wish I was a more spiritual person...
Living like this is such a struggle every day.
Yes-I am on an antideppressant. I just love when my friends ask me if I am on one-like I would be happy as a lark if I was just on one.
Just let them walk in my shoes for 1 hour!!!!!
Sorry-I had to vent... GTG back to my bed My brain is on fire!
But first I have to take my meds.
Does anyone else feel like they are poisoning themselves instead of getting better????????
Posts: 256 | From long island, new york | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes Laurie. We are in-fact poisoning ourselves sometimes.
Hang in there though. If you're on treatment, you'll improve. It's just that it's at the speed of a snail for a lot of us.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I try to stay involved with my interests, in whatever modified form I can figure out how to access them. Like I used to travel, so now I'll watch a travel program on TV, etc, etc. I feel more present that way.
And I try to spread the word as much as possible so others don't have to get what we got. That keeps me going.
For example, yesterday I met someone who works at a major garden center. We discussed the idea of him making a display on Lyme disease there and possibly selling tick repellents.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote: I'll never accept this illness, and I'll never quit until I solve the riddle, but I can accept today as it is, so that I can move past that to do the work that is necessary to improve my life and health.
Well said Metallic Blue.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
When I was first bit in 1995, I had this same crushing fatigue. Luckily, 6 mths of abx resolved all my issues and I thought all was well.
10 yrs later, sudden onset of migratory joint pain. LLMDs (2) diagnosed late stage or chronic lyme. 6 mths later, diagnosis of Rheum. Arthritis.
At that time, I was swollen and crippled in almost every joint and was completely housebound. Energy though was good.
1 yr later, after much alternative treatment and only 1 abx, minocin 100mg MWF, I was almost completely well. Then bit again, within 24 hrs flu like symptoms. 48 hrs all joints flared and crushing fatigue and muscle weakness.
I went to an ILADS LLMD specifically for abx. I felt this was a recent bite and abx would be effective.
Bloodwork showed I was in an acute mono flare and I was positive for Babs WA-1. I am very sure I did not have Babs before this bite.
She put me on ammoxycillan, biaxin, plaquenil and prevacid. She changed my minocin to doxy. Within 30 days, I was all new again. I stayed on this combo for 7 mths until a gene test revealed I cannot detox very well and abx are one of the things I can't detox. So, currently I am only on the doxy and on an herbal detox protocol.
I am sure you guys have done the gambit of drugs, but maybe if you have not done the ammoxy, biaxin, plaquenil combo, you could try it and maybe it would help with your fatigue?
I really feel for you and pray for you. The fatigue is like having the life drained out of you.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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tailz
Unregistered
posted
I'm 43, and I'm in the same boat. I am alone, and pretty much nothing excites me anymore.
Do I really just want to just stay alive? This is really all I'm doing.
Computer friends are somehow not enough anymore. Where's my family? Where are the people that I sacrificed for all my life?
I know this - I will never put another human being before myself again. I've gotten burned every single time. Too bad I didn't learn that lessen at 23.
I really don't care anymore if I die of Lyme - just as long as the pain stops.
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I feel like i can't do anything anymore. I used to hike, snowboard, bike, lift weights, play guitar, socialize more and now I do none of that. Once guitar and working out was taken away, it has been a downward spiral into depression. I wonder how much of my pain is psychosematic.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im in a fog every day except for the first hour after I wake up and have coffee.
Its been like this for years.
Now I have chronic vertigo and MCS with mild mold in the house which makes my cotton brain worse.
There is nothing more I hate then this stupid f-ing cotton head and vertigo.
So many days I just want to end it all. In some sick way though If I think about taking my life I somehow believe that I will haunt this same town forever.
My cotton brain, pain and fatigue with MCS makes it so fearfull to change anything.
I think about it every day though. If I were just well enough to work any stupid job without relying on this insurrance.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I am sorry to be so negative. its the one thing my husband gets on my case about. he thinks I need to be more optimistic.
betty, if there was anything like that I could do, believe me, I would do it. I wrote my story to send along with the material we used to get the senator to sign the lyme bill.
I used to go on activism alot. but it seemed like it was a lot of talk and very little action as far as what I could actually do. I cannot travel, so I am limited to what I can do on the internet. I am going to go to a support group next week, maybe I will get some ideas then.
Posts: 615 | From maryland | Registered: Oct 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Azure- my grandparents in someways are better than me. The last time i visited though, i felt right at home with them. They had all their meds lined up for the day on their TV trays, food there too, so they wouldnt have to get up too often.
Baseball season is here again, and it is one thing that I can somewhat enjoy again. When i first got sick, I really couldnt focus on watching the game.
I went to one last week, and while I was in pain and far from healthy, I saw my fav player pitch, took some pics, and for a moment was semi-normal.
Im still recovering from going, but it was worth it.
The isolation is the toughest along with the pain.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Roro, and others - re activism, I think we can do a lot now just by picking up the phone and calling any organization that might have an interest in the Lyme/tick/political situation, just to get articles into newsletters, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
This thread is so depressing I wish I hadn't read it. You guys have all been so wonderful and helpful and supportive but I think I need to take a break from reading on this board and researching my Lyme, for awhile. Ill be back though. Even though its hard I hope everyone can try to stay as optimistic as possible with this horrible disease (myself included).
Posts: 370 | From NJ | Registered: Dec 2007
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at first i thought my husband is right, now even the lymenet people dont want me around. but then I thought about it and I am glad I posted it. for several reasons
1. maybe some others who are going through what I am going through dont feel so all alone
2. those who are not so bad off might feel lucky
3. those who might be in the beginnign of the disease will get treatment NOW so they dont end up like me. we dont want them to think they will just be fine, they need to know what happenes when it goes left untreated.
Posts: 615 | From maryland | Registered: Oct 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Some of us were treated in the beginning of the disease and even so got really sick. So, I'm glad for this thread. It reminds me how hard it is and how brave we all are. Glad you posted, roro.
Posts: 2276 | From united states | Registered: Jun 2004
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
As like everyone else here, I understand completely.
I really have no friends except online and a few real life that are back in my hometown halfway across the United States.
My husband is my rock. Without him, I really don't want to think what would happen to me. I'm so extremely lucky that he still cares about me and cares FOR me, helps me through the day. He cooks and cleans when he needs to and when I can't. He even gives me a bath and helps wash my hair, etc., when I need the help. Sometimes I'm so scared I'm going to drive him away.
What makes it worse is I've lost my job because of this disease and because of a company that won't bend to help me whatsoever (though in the beginning they did; now there's new management). So now I'm looking for telecommuting work which is NOT easy whatsoever.
Our funds are running very low right now because of my losing my job. And my husband has the only income coming in and it's really getting to him now.
Found out my mom has congestive heart failure which worries me but also makes it hard to talk to her because I'm afraid of losing her.
On top of all that is of course lyme disease and co-infections that I'm battling. But not only that, my lab work is NEVER normal, unlike a lot of people here are lucky to have normal labs. I've had a low white blood cell count since high school (now 24), so it's really starting to worry me. I can't explain how terrified I am that it may be something worse and that maybe I've had something else all along.
I never did get a positive WB and that makes it all the much harder for me to believe what really may be wrong with me.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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hopefully it will get better soon
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