my doc has described me as one the better, if not best, functioning lyme patients he's got.
i do get around pretty well.
so do you consider yourself to be sick as most, sicker, or among the sickest?
i know it's subjective but please try to give me an idea of where you are.
i've seen people in wheelchairs and at death's door but also people like me who work every day and make it to retirement, but have ups and downs.
i'm just trying to get an idea of where we all stand.
Posted by catskillmamala (Member # 12536) on :
I am just sick. I have been MUCH sicker and I have never had the pleasure of being sickest.
I also think we caught my daughter in time, she was just sicker, never sickest.
To me sickest is unable to walk, in constant pain, barely able to communicate.
Posted by sutherngrl (Member # 16270) on :
I consider myself in the group of the "sicker". I am not in a wheel chair, but for the past 3+ years I have had times where I felt very close to ending up in one. I have had days where I thought I literally would die.
Five months after the onset of my illness I had to quit my job, a very sad day for me. Could barely function due to profound fatigue and pain and lots of neurological issues. Even my GP(local duck) agreed that I was unable to work. Even though at that time I had no diagnosis.
I am 15 months into treatment now and have had slight improvement the last couple of months. I would like to get to a place of considering myself sick and not sicker.
Posted by feelfit (Member # 12770) on :
I have been all 3. Before starting treatment, I was sick. After starting treatment I was sickest (IV rocephin 3 months bedbound and incoherent). I then went in between sickest and sicker. Now I am just a steady sicker.
Feelfit
Posted by jkmom (Member # 14004) on :
I consider my daughter to be at least "sicker". She lays in bed with a constant headache, not feeling well enough to see friends or do much of anything most of the time. She could be worse, though. She can talk and get up to go the bathroom and we can occasionally get her to go somewhere we think will be ok for her.
I barely consider myself sick but just recognize my symptoms from my daughter's illness. I think I could have a job but I have to stay home with my daughter. I have muscle twitching, joint pain, and slight air hunger. All of it is barely noticeable on abx.
Posted by TxLymie (Member # 20847) on :
I count my blessings since I would say I am just sick. I have been very fatigued for years but it comes and goes. I am able to work and take care of 3 kids...MOST of the time.
There are many many days that I can't get out of bed right away to get them off to school (luckily my husband is here in the mornings to help)
Also there are many days that I am only "good" for about 5-6 hrs a day and SOME days that I feel pretty bad all day.
But I have very little joint pain (some in my chest and legs), no where near a wheelchair, no headaches and few neuro symptoms.
So again I am thankful. My symptoms have been pretty up and down. I actually just came off about a 4 week period that I could of sworn I had kicked the Lyme...but then symptoms started to return.
I just hope and pray I don't ever fall into the sicker or sickest category....I too am probably like you, tested positive, but not nearly as sick as others.
Posted by Beautiful Disaster (Member # 21882) on :
Hmmm....I don't know how to answer that. Comparing it to someone in a wheelchair never entered my mind. I couldn't walk for months but honestly, the pain I am in would automatically make me want to say "sickest".
I think the true test for me is having a toddler. I have no one here to "baby" me or pick up my slack. I have no husband. I can't let my child suffer because of me. I always say that if I had someone to let me lay in bed, I would be there because my mind is BLOWN with pain. But I can't. It's not an option.
I hate answering those questions like "Rate your pain from 1-10". I always feel like I'm being judged or saying the wrong thing. I guess somewhere in the middle of sicker or sickest.
Posted by Pinelady (Member # 18524) on :
After 4 mths. treatment I am sicker, was sickest. Very optimistic.
Posted by coltman (Member # 21272) on :
I am definitely one of the better one given what I read here about ppl in wheelchairs. I still somewhat hold to my fulltime job and self sufficient.
Heck I am almost "healthy" - though I do have some tests besides WB now which are off (candida, vit D, carnitine, thyroid, testosterone, cortisol)
Unlike many people here complaining of pain - pain is least of my concerns. It sometimes uncomfortable and distracting but generally only episodically.
Mostly its fatigue and brain (fog/memory) which bother me day to day. Afternoon fatigue is real bother as its hard to work with it.
I had 2 months when it was worst - numbing hands, killer fatigue, balance and coordination -and which prompted me to do anything right away ( I got doxy prescr) . Which stopped getting worse now.
I do not want any of this crap progress any further though as I cannot lose my job - I am alone ,so if I cant provide for myself my life would be effectively over.
Posted by disturbedme (Member # 12346) on :
I really have no idea how to answer this. I think I've been in all three ranges, sick, sicker, and sickest. At the moment, I really don't know what I am. If I had to choose, I'd say sicker, but then sometimes I feel just sick. But then I have some really bad blood level results, that could say I'm sickest, but not really sure (doctors don't even have a clue) what is causing them to be the way they are. My white blood cell count/neutrophil count has been low/dangerously low for 12+ years (now my platelet count as well as red blood cell count are messed up and low), which I'd consider sickest... but I really don't know.
There have been times where I felt like I was just going to die, and I still feel like that on certain days.
I can walk, but I have neuro issues and balance problems where many times during the day if I'm walking or standing, I'll fall sideways or stumble. It used to be much worse - when I was at the very beginning of my illness, I would run into doors and walls and trip all over myself.
And don't get me started on all my heart problems/issues. I also have horrible ANS issues where my body is constantly on the look-out, in fight or flight mode - I think that's one of the reasons I have so many heart issues, chronic tachycardia for 12+ years, as well as awful sensitive ears/hearing so that any noise will really hurt and/or make me jump out of my skin. It really sucks.
Posted by Silverwolf (Member # 9196) on :
<<<<< Randibear,and various Lymer Family Repliers! >>>>>,
I'd have to say a between 'sick and sicker', better than I was years back when we didn't know what it was,and I couldn't walk part of the time.
I think the symptoms worsen then slack of... been trying Buhners Protocol,and it does seem to give more energy for me.
I use a cane,to help w/ weakness,and balance issues...and the Tinnitus/Hyper accuses is still really bad. Most nights I don't sleep very well [tho'it is slowly improving [ ].
Our Primary care DO, is worried about it being Meniere's disease [recently I saw another symptoms list where this is being associated w/Lyme].
Just Silverwolfi... jabbberin'
Posted by linky123 (Member # 19974) on :
Depends on what day you ask. Today is a rare 'sick' day. But I would say that I would fall in the 'sicker' category.
In the past year or two, I have really lost ground. More pain, and neuro problems and that really scare me.
Like a previous poster said, slowing down isn't an option, with a family and kids, I have to keep going.
I work 2 days a week, which completely wipes me out. We are eating out more and doing the frozen dinners, as I just don't have it in me to cook too much anymore.
My husband, son, and possibly daughter have it, though they are pretty high-functioning. I just feel like we are sitting on a time-bomb, waiting for the axe to fall.
There are days when I just don't think I can keep going anymore, but you have to.
But, I can still walk and get around, so in that respect, I am blessed.
Linky
Posted by tumbleweed2 (Member # 20032) on :
For me probably between sick and sicker. Have good days which are pretty good and the bad days are pretty bad. I have lots of insomnia, and fatique, sweats and chills...something is still kicking around. The good days I feel like I might not even be sick but then I get slammed again. Really getting tired of dealing with life like this, although I am grateful for the good days.
Posted by jamieL (Member # 16563) on :
Randi, I think we have the same doctor.
I feel "sick" now which is an improvement from when I started and was merely "sicker."
I was profoundly fatigued, had an unexplaiable face rash that wouldn't go away. I had severe nerve pains shooting througout my body-stabbing, burning, etc. It was like having shingles in every nerve ending I have without the blisters. I was functioning but barely.
Now I have pains that feel like I would be bruised on my legs and the back of my arms but there are no marks on my skin. No more stabbing.
The fatigue is slightly better but I still needs naps to function.
If I could just kick this fatigue and these minor pains, I'd be doing just as well as before!
Posted by j_liz (Member # 20496) on :
I would say "sicker", because of all the damage it has done to my body that require so many specialists.
Inappropriate Sinus Tachy., Neurocardiogenic Syncope, UC, Interstitial Cystitis, neuropathy, dry eyes (needing 2 script drops and just got my tear ducts plugged), Apnea and Insomnia,
fatigue, pain, cognitive dysfunction, and I could list more.
So compared to the others in my family who have Lyme and had fatigue and cognitive function, and none of the other things I mentioned I say sicker.
BUT I am blessed in that the meds to control all these problems have been very effective and I really do feel much better than I did just a yr. ago (thanks to Bicillin).
Beautiful_Disaster said, "I hate answering those questions like "Rate your pain from 1-10"." They say 10 being the worst you ever felt. Well, mine was when I came out of anesthesia after my hyster. So, I compare it to that, but sometimes wonder if I should.
liz
Posted by WildCondor (Member # 434) on :
Why does it matter what you label it? If you keep calling yourself a sick person it gets depressing. Remember all the things that you are as a person besides "sick" you are more than that people. If you only think if yourself as a sick person, that is how you are going to stay. Fight to get better, end of story.
Posted by seekhelp (Member # 15067) on :
Good point WC. I don't know how to rate myself honestly. Not sickest as I reserve that for death's door/terminal illnesses/paralysi/etc.
At the end, who the hell cares as I can't drive on my own any distance to get to a job, have head pressure a lot, can't walk/exercise/get through a department store without lungs, muscles getting tight and legs getting heavy.
Essentially, between sick and sicker with no life. We can all 'evade' real life and escalate our status a bit. Many here are unable to work, housebound, etc. Force one to live again, and sick becomes sicker in a minute flat, right?
Posted by Silverwolf (Member # 9196) on :
Hey <<<<< Lymer family >>>>>,
Just a tho't, but IMHO, The sick, sicker, sickest is just a description to help us see where we are at...
For many of us,if we are sick to sicker...but not out sickest, maybe it is a sign that we're getting better!?
I wont deny that I'm Ill, but I'm glad it isn't any worse !!!
I can understand what WC is meaning, Perhaps say it We are better?or Doing fairly well? or maybe not doing as well?
Yes it can be frustrating or depressing...but seeing that some of us are not as ill as we once were..is encouraging!!!
Thanks <<<<< Randibear >>>>> for asking how we are doing!!!
And Thanks <<<<< W' Condor >>>>> for the timely reminder to stay positive when possible!!!
Jus' Jabbering Silverwolfi
Posted by Tracy9 (Member # 7521) on :
Among the sickest.... bedridden most of the time, have full time Personal Care Attendants...can't cook, clean or do much of anything.
Posted by EyeBob (Member # 12572) on :
I think that this touches on a very good subject.
Many, many, many people come to LymeNet for the Forum help. It would be useful to know how sick the person is/was that is replying to the questions. It would help the person asking to know just how relevant the answer they get back is...for instance, someone who had undiagnosed Lyme for 20 years probably will have a different experience when treating with ABX "x" than someone who was bit last month.
That's where it helps to know.
bt
Posted by coltman (Member # 21272) on :
quote: like "Rate your pain from 1-10"." They say 10 being the worst you ever felt. Well, mine was when I came out of anesthesia after my hyster. So, I compare it to that, but sometimes wonder if I should.
No one experiences pain level 10 and stays conscious for long. level 10 is the kinda of pain which makes you pass out .
I had open surgery appendectomy (e.g. not laparoscopically )under novocaine. And at times it was pretty intense - definitely worst pain I ever had, but it was anesthetized so kinda gave me perspective that in no way it was "level 10" -since that would be one without anesthesia at all
Though I think its better to experience level 10 pain for short periods of time than level 5 for long periods of time. In childhood I had headaches, lasting whole day, and I had them for years. I would gladly take that appendectomy without anything, maybe even twice if I could get rid of years of "moderate, level 5 pain"
Posted by Maryland Mom (Member # 2043) on :
I like Wild Condor's attitude about this. She has definitely been as sick as you can get and still live, if you know her story, yet she has the attitude of a fighter who refuses to be labeled because of Lyme.
I started out as just sick, got sicker, then sickest, then got back to sicker, and now I am back to no more than "sick."
I'm going to school full time now, back to taking care of a household of six--nine, if you include the Jack Russell terrier and two cats--with no outside help. At no point did I lie down and give up (even though I always had people willing to pull my weight) or allow anyone to label me by my illness.
I still have days when I can feel pretty crummy, and pain is a constant companion, but I have my life back, and I'm busy living it.
It has been proven that the people with the strongest immune systems are positive thinking people!
We cannot let this disease define us. Then it wins.
Posted by sixgoofykids (Member # 11141) on :
I was sickest, though I know there were people sicker than me. I could not take care of myself and needed help walking. I was too mentally incapacitated to leave the house alone because I'd get disoriented. I was mostly bed-bound. Hubby had to work out of the house to take care of me.
Now I am well.
I don't have a problem with labels ..... just as my label changed from healthy to sick, now it's changed back again. I still think of myself as a Lymie ... just not a sick one .... I am a Lyme survivor, just like there are cancer survivors. I do not think it's negative to identify what trauma we've gone through.
Posted by sutherngrl (Member # 16270) on :
WC did make a good point. And I do try very hard to be positive.
However, I don't see how it is bad to talk about what it is like living with a chronic illness and discussing how sick you are. There has to be "acceptance" as part of dealing with chronic illness. How sick you are is a fact of our lives right now.
Talking about it doesn't mean you don't have a positive, fighter attitude.
Posted by GraceT (Member # 16558) on :
Hi Randibear - I used to be sicker. Today I clasifiy myself as sick and improving one molecule at a time. THX ~ Grace
Posted by Need Lots of Help (Member # 18603) on :
I would say I am sicker.
Until last year, I was able to work, so I would say until last year, I was sick.
If I continue to get worse and am in bed more days than I am not, then I think I will be sickest.
But, I have known for a long time that I was sick and not like everyone else. It just took years to get a diagnosis. I hope to get back up to just being..sick.
Posted by LisaS (Member # 10581) on :
I rotate between all three. But haven't had just "sick" for a long time until this week. For months I was pretty much bedbound, or maybe housebound is a better term.
The last four days have been pretty good. Still the obvious syptoms like brain fog and some muscle issues, but I cleaned my house todya for the first time in God know when, so I never know what it's gonna be next. Back in bed tomorrow?
Would love one day, to be able to make plans, and then keep them.
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