I'm sick of going to all these doctors and paying their outrageous copays and lab fees only to hear, "I think you need a psychiatrist."
I'm sick of constantly having to explain to friends and family members how I feel every minute of the day and everytime I tell them its the EXACT SAME THING EVERYTIME!!!
I'm sick of staying home everyday and worrying about things in my life I don't have any direct control over anymore.
I'm sick of everytime I attempt to go to the gym I walk out of there feeling much worse than I did when I went in and it takes a WEEK to get over it. I used to be in such good shape...what happened??
I'm sick of people saying, "wow, you put on some weight...you need to cut back" when I barely eat 1,500 calories a day and can't exercise a bit to keep myself in shape. If I was healthy, I wouldn't have put the weight on in the first place!!!
I'm sick of having to tell my friends over and over and over again, "Sorry, man, I can't make it out tonight."
I'm sick of thinking about my past over and over again wondering if I did something to make myself the way I am.
I'm sick of people telling me that when I can't tolerate antidepressants and other medications that it MUST be all in my head.
I'm sick of people telling me that I "just need to deal with it, get over it, and go back to work."
I'm sick of not being able to date someone because nobody seems to understand that just because I can't work right now I'm not a bum!
I'm sick of filling out all of these pointless and repetitive disability documents only to have them turn me down anyway so they can drag it out as long as possible in the hopes that I'll just give up.
I'm sick of having to explain to people I've just met or haven't seen in awhile how sick I've been the past year only to sound like a broken record everytime I have to explain this and get embarrassed to have to tell it.
I'm sick of having to explain myself to every one as if they think I WANT to be the way I am now! Don't you think that if I could feel better, I would?!
I'm sick of everyone trying to rush me to get better as if that is even possible! Would you tell that to a cancer patient??
I'm sick of being afraid to leave the house because I never know how I'm gonna feel from one minute to the next.
I'm sick of feeling nervous every minute of the day about what I'm going to do with my life if I don't ever get better....what then??
I'm sick of getting that feeling that if I was still working, no one would even give a sht if I felt sick everyday...as long as I'm bringing home the bacon!!! Somehow my health is much less important to people than my job.
I'm sick of feeling jealous of others who are healthy and can do whatever they want. I just can't believe that I used to be just like them and now I have to envy them. I'll never take my health for granted ever again.
I'm sick of missing out on things as if I'm watching my life pass before my eyes and can't do a thing to stop it...I'm 27 years old! My prime years...my best years!!! Gone forever....
I'm sick of......being sick!!!
*** If you read this, I'm sure you have something to add...please do ***
Read my reply to fotomom about "going off doxy." I'm 43 and wonder if I had lyme longer than I realize. Or maybe I really was just mental between the ages of 23 and 39. Maybe it was lyme all along?? Loved walking the dogs by the power lines when I lived on LI and ran x-country in H.S. in a heavily wooded trail at Sunken Meadow. Maybe just mental-don't know. While on Paxil for about 6 months, the anxiety was a little better. I became pregant in Nov. and had to stop but had a miscarraige. December 1999, I had a very bad spell of depression (it was really PMS), but I started Paxil again in Feb. 2000. Major manic city a month later, but I didn't realize and kept taking it and even had the dose upped. Gained 20 lbs., $300 shopping sprees at Walmart of all places, smoking cigarettes (addictive behavior is part of being manic), life of parties, over optimistic. Oh yeah, and I quit a great job I had because I flipped out over hearing someone was getting a promotion before the job was posted. Finally I told the doc about this and stopped the medication. Very bad withdrawal. Vomitting, depression. My original problem was panic attacks and a big problem with jealousy, but oh no they couldn't just give me xanax. The paxil actually helped those two symptoms, but I became a wacko.
The two other symptoms I had along this were bloating (for 16 yrs. and hip and shoulder pain. Someone told me that irritable bowl syndrom and gas can be a symptom of lyme. All I know is that 16 years of my life were lost due to anxiety and irritable bowl syndrom. There were so many things I didn't do in my life because of these. But with the antidepressants I went overboard.
Now I'm having mental things going on again. But I'm getting an MRI of my brain. Don't know what I'm hoping to find out. Most likely it'll come back fine, but I'll keep you posted.
Well if you are crazy you have a lot of company. You speak for all of us and the thing that is most frustrating is the thought that we have no control. I have "lost it" only a couple of times in 4 years and even then it was just a few tears. I'm long overdue but choose to save my tears for joy when I kick this horrible disease.
It is frustrating that people just don't get it. We all don't share the exact same symptoms but we can relate because we do share the same frustrations. No one can ever know what we have been through unless they have been there themselves. I agree, if it is cancer or one of the many diseases that are "accepted" by the medical community as a whole we would be understood. Although I want this acceptance I choose to stick with the lyme and hope for a cure. I may have a complete breakdown when this goes away, and someday it will, but for now I feel that I must be as strong as I can be even it if it means on my own because I deserve that.
I am 57 and married to a great guy. We both had rough times in our pasts and felt that God put us through those rough times so that eventually we would find each other (almost 38 years worth). Sounds kind of hokey but we believe it. What we had gone through was worth it for that end result. I'm not quite sure why we are all going through this but feel that somewhere down the road we will know and it will make us better for it. Don't get me wrong, I'm not overly religious and find a silver lining in every cloud but need to believe this for my own sanity.
You fear you have lost some of your youth, I fear I will lose all of my "golden years" that we so looked forward to. I have to stay strong in mind if nothing else for this to happen. I refuse to end my life on this bad note.
You fear the loss of dates but that will come. I also ponder how much my husband is willing to put up with before this is resolved. Hopefully he is in it for the long run!
We have to look forward to somebody "hitting the Jackpot" and helping us out of the quagmire. We so hoped for ekim to be that person but that was not to be. I'm sure you follow all of the threads and are excited about takemylife's progress. I don't think that any of us cares who leads us out of this maze just as long as somebody does.
We all have to hang together and support one another because we have become family and thrill to each victory and cry for each defeat. But someday it will happen and we will cry those tears of joy I talk about then.
On a happier note, it would be great if we could all end up in the same sanitarium to recover our mental faculties after this crazy ride! Hang in there and don't forget you need to let go of the feelings once in a while. Nobody better be near me when I finally do! Just a few pals who are right here to comfort me.
I am sick of starting something and then not being able to finish it because I feel too bad.
I am sick of doing everything I can to get better.
I am sick of people taking their health for granted.
I am sick of all of these DR's who take my money to tell me to "learn to live with it".
I am sick of people telling me..."Oh, you should feel better with 2 wks antibiotics".
I am sick of getting sick from people who either go places when they are sick, or take their children when they are sick.
I am sick of feeling so da#@ negative.
I am sick of my body feeling so rotten no matter what I do.
I am sick of all of these vultures out there that prey on really sick people telling them they can make us better "the magic stuff".
I am sick of people saying "I didn't know you were THAT sick"
I am sick and tired of people saying "But you look good".
I am sick and tired of wearing all this loose clothes cause my da#@ body hurts too much.
I am sick of always saying "I can't".
I am sick of always thinking about everyone first but myself.
I am sick of being afraid of always being sick.
I am sick of people always thinking about themselves.
I am sure there is more but I can't remember!! Guess I am sick of that too. I have to share with you all....My husband and I booked a cabin in the mountains 6 months ago for the end of March/April. Very secluded, huge windows overlooking the mountain side, sunk in jacuzzi tub in the windows, huge theraputic shower and no tv. Secluded deck overlooking the mountain that I can't wait to do meditation and Yoga on. Well, I asked my folks to put that time a side six months ago. Well they had just come home from 10 days in florida, and the weekend prior the were in Shreveport. They inform me they are going on a cruise in Panama. Guess when??? You got it "OUR weekend". Now mind you we have 3 kids, I homeschool them and another 4 yr. I am Mom 24/7. I had to act not mad. Gosh it ****** me off I couldn't even sleep last night. Today I am feling horrible, I have cried and telled on the inside. My Mom calls me and says that my sister in law will help with the kids...YEAH right one who isn't even responsible to raise her own children.
So, now I am looking at having to cancel and not get a portion of our money back...like we can afford that!! I want to just shake them!!! These are the folks that last month when I finally found out why my life has been slipping away are mad at me for not doing the antibiotics because I can't function and have no one that can help with all the kids. So I guess you can see where my I am sick of's are coming from today.
I miss running. I didn't even enter the 1/2 marathon this year. My neck and lower back hurt too much and they get very tight when I run. I am thinking of entering a 5K. Maybe I can try that. I don't know. I dragged myself to karate yesterday and fell on my butt doing a kick. My legs just were very weak when I landed and I just dropped on my butt.
Yes, I realized that after I posted that. lol. When no one else understands this is definitly the place to be. There are many people I know who did well on 2 or 3 months of abx. so even they don't understand.
Yesterday my 6yr old son (who was diagnosed 3 wks ago) was sleeping when it was time to go to karate. My spouse said to wake him up. I refused explaining that he's sick and is on his 3rd week of abx. He had just gone down and ended up sleeping 3 hours.
I look very healthy and am losing weight, but if I lose more I'll start looking sickly. I lose weight when my body fights something. Loss of appetite, too.
Me too, I miss running. I find that it's just so counterproductive right now. I really can't do it-- if I push myself I pay dearly for days after. I just want to get strong and get better, so I won't tax myself out like that. I do miss it so much though, not just for my body but also for my mind. It used to really make me feel great.
I have lost lots of weight. I'm very, very thin right now and it's a little scary. Hope to gain again soon, but that doesn't seem possible as long as I'm on all these pills. They make me go to the bathroom too much.
Me too. I'm not taking anything right now. Well, naproxen and ultracet. They don't help one bit, so I don't know why I bother. But the last few days I've been on the bowl. Lost 5 lbs in about a week. My stomach is flat.
I woke up this morning and was thinking about running (won't do it because the lower back will get too tight). I like to go out with my MP3 player and the loop I run around the neighbor has gorgeous views because we're at the top of the mountain. I guess I could switch to walking for a while and enter. They have a 1 mile walk that starts after the 5k I wanted to enter.
Ok, why is sweat running down my belly. It's winter. Now what's wrong with me. Somewhere I read that fit people actually sweat more quickly in anticipation of exercise. Maybe I want to go running that badly.
being so sicka stuff that i don't even know where to begin... but i do appreciate post and made husband read it to me last night. he normally hates whiners. i thought this was great medicine for him. i think he was in fear that i was laying there with an icepick or something...
we'd watched secret window on friday night...
I tend to hide my negative stuff, and here i was flaunting it - yours is mine, right?
i'm with ya but i'm to weak to type it all out but you covered them all pretty well.
the one thing i pull from all this suffering is to make it known to all we come in contact with that we need help with awairness and political support. it is obvious the medical community are not going to change this without protest and the insurance companies wish we were dead allready to cut their losses.
I'm sick of painful teeth and gums for over a month. the dentist took x-rays, says it's from clenching them...I don't think so. There's no lessening at any time of pain...
the crocuses have popped out of the ground today as well as the tulips the past few weeks. but I can't go out in the sun even though I'd like to try a walk outside after only being out briefly 6 x in the past 5 months (all to doctor's offices & 1 MRI visit) and a month ago a wonderful lunch with my best friend which took the rest of the week to recuperate from the profound sleeping exhaustion, which I'm sick of.
I'm trying to read "Everything you need to know about Lyme Disease" but can only get thru part of a page at a time. Now I know those white lesions on my MRI are probably the result of Encephalopathy or Encephalomyelitis because of the accompanying problems we all know and have...according to this book - why couldn't all those neurologists have told me this? I'm sick of them too.
I'm sick of my head rarely being able to even consider going outside for a short walk with my walker, but by the time I'm dressed and lathered in sunshade and layers of sunblocking clothes, I'm too exhausted to take advantage of the thought, as wonderful as it is at the moment.
I'm sick of not being able to go out to eat or volunteer helping others or joining friends on a vacation getting hopes of a long good phase up, only to have them dashed within the day...
I'm sick of working hard to "work around the effects of this disease" on my own - where are the professionals to help guide us?
I'm sick of this extra 80 pounds I've gained from not having the strength to exercise because I can't get through the exercises and pay dearly for a week later when I try - never reaching my doctor's (GP's) expectations.
I'm sick of driving an hour to my LLMD who may on my next visit tell me there's nothing else to try. I used to have a time or two when I could be enthused that he had a handle on this "thing" and I might even stop somewhere and shop for a little bit on the trip there or back.
But...here I am. Reading the book, I see that I'm happy (whatever that is now) that I'm NOT a child, nor do I have a child with this - only a grown son-in-law who can make his own decisions, sort of, once in a while, sadly. And I don't know what else I can do to help those little kids and the younger people just going through this and not sound discouraging. I want them to have the strength and belief that this can be licked, somehow, because I don't want all of us to have gone through this or nothing....
If I didn't find this site (which I found before even being diagnosed), I would be soooo frustrated. Actually lyme is so common here that there is a support group at a church on the third Wed. of every month. I may have to go. Maybe I can learn more to share here.
I am by no means as bad physically as some of you (not sure about my back), but mentally I am not doing too well since I've been off the abx. I've had problems mentally before lyme (but then one never knows how long you've had it). And anything that was wrong with me before is magnified now. So right now I am feeling super manic. But at least I have this site to purge it into (if you will).
I can't even explain my mind right now. I know. I'm doing things in solitude. Playing Jumble constantly on my cell phone (unscramble letters to make words), notice my numerous posts here, and listening to trance music and I also was playing Sims for hours on my sons' Playstation for the past week. I'm like zoning out. Crying a little, too. The only reason why I'm not concerned is that it isn't a danger to myself or anyone. I think I have an appointment with the psychiatrist coming up. Maybe I need to check out the ADDH site or whatever adult attention deficit is called.
Right now this site is what is keeping me sane because no one who doesn't understand wants to hear about it. I don't even know if I'm suffering from lyme symptoms anymore. I want something to blame this on, but I can't.
Watch those docs. Three different docs gave me the results of the same bloodwork and one told me I was positive for lyme, but it wasn't acute (whatever that means), the second mentioned the rheumatism, and the third mentioned the dead parvo. In conclusion I find they tell you only what they want to, but nothing more. Guess they don't want to open up a can of worms.