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Has anyone forgot what normal feels like?

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Posted 5/2/2016 3:31 AM (GMT 0)
I can tell that i ont feel right an that i shouldnt feel this way.But I have felt so weird for so long that i think i have forgot what my normal felt like before all this...Has anyone else also forgot? Has anyone else forgot an then got back to normal and realize there normal even though they forgot? thanks in avance.
Posted 5/2/2016 3:37 AM (GMT 0)
Yes!!
This disease occupies 98% of the space in my head...it's always there...

Then every once in a while, I will have a good day...with some hours of no pain or stiffness...or buzzing ...and my mind will clear...and ahhhhh I feel good...I feel normal.....and I remember what it feels like...and I know that it's still there...

We will get our 'normal' back...don't worry.
Posted 5/2/2016 3:42 AM (GMT 0)
Thank you for the incouragement.Im not gonna lie it is terrifying to forget what normal feels like,To forget how you once felt.Thank you for letting me know that you have felt the same way and that when you do feel normal you remember what it feels like lol.Thank you very much.
Posted 5/2/2016 3:55 AM (GMT 0)
I am doing very well, but in the back of my mind (that I try desperately to hide) is the thought "is that a lyme symptom?" Any little thing... I think it is lyme. That is the sad part. I am not comfortable being well. And I find that extremely sad because it is what I fervently prayed for. It is here and I am not at ease.
Posted 5/2/2016 4:13 AM (GMT 0)
PeteZa - I'm sure with time...thst will go away....
Posted 5/2/2016 4:21 AM (GMT 0)
I felt close to normal exploring on my fat bike today. Except the fact that my nose constantly runs from cool weather (this got worse during and still after ABX).

The fact that the crappy seat made my bum hurt might have had something to do with feeling close to normal (lyme off my mind).
Posted 5/2/2016 4:26 AM (GMT 0)
ghost93, you will get some windows of normal as Peteza explained. But yes, when in the midst of this illness, normal seems to be gone, long gone.
Posted 5/2/2016 12:12 PM (GMT 0)
I think we all develop a bit of a new normal - one that is based upon gratitude for it.... and it will feel better than the "old" normal.

I also believe that we need to have faith that we will achieve that normal.

It's quite recently that I've been telling myself to let go a bit and just live my life not worrying/thinking about Lyme.

Since we can't rid ourselves of every last bacteria and parasite, I think we need to come to terms with the idea of peaceful coexistence.

That doesn't mean we can't rid ourselves of our symptoms but I've finally realized that it takes more time than I originally thought.

Quality of life s-l-o-w-l-y improves until we have those windows of normal that make us say "hey, I actually feel decent".

All in due time.
Posted 5/2/2016 1:23 PM (GMT 0)
It was so very odd to realize as I neared the end of my treatments last time that I had no idea what it would be like not living with my symptoms - I'd had most of them since the age of 7. It was rather strange when I would realize that I wasn't having muscle spasms and muscle cramps, even after doing physical labor, or the brain fog, or the delayed recovery time I used to always have, but believe me, I got used to it quick!! LOL!

I realize that I still don't really know what "normal" is like, as I only had one year without any serious health issues (my adrenals crashed and took down my thyroid a year after I had healed due to family issues- learned my lesson!!) - but I've just decided I sure want to experience not being ruled by my symptoms!

And I agree with Cd, on finding a new normal. My life will never be lived as if I had never had these infections. I can't help but talk to others when they confide in me that they are having all of these mysterious health issues and the doctors can't figure out what's happening - and I can clearly see the possibility of Lyme and company.

I'll never again take memories for granted, or look at food the same, I'll never not reach out to help others when I can, I'll always be thinking of my need to detox (wink) and so many other things. I'm going to let go of the negative things that I had and keep grasping for the positive that I can take with me.
Posted 5/2/2016 2:10 PM (GMT 0)
yes, it is so difficult to remember how was the life before the Lyme. When I talk about past, I started to divide my life in "before Lyme" and now. I hope I will be able to get my life again.
I want to run. I want to jump. I am so sad!!
So many dreams and plans were ruined, I was so much disappointed. I didn't know I was infected, I was undiagnosed for 5 years! All the time suffering in pain. It was hell. Now it still is, ,my pain hasn't gone away, but at least I know what is wrong with me and how to fight.
Posted 5/2/2016 2:36 PM (GMT 0)
Pain is the old new normal.weird scifi symptoms..ringing dizzy nothing shocks me any more oh chest pain that normal..i long for a few good days ..there ar monent where it lets up..bluebberrymuffin said it best i want to run jump laugh again..i am so angry at myself the medical sx and the bugs...normal ha..this is the lake of fire
Posted 5/2/2016 4:19 PM (GMT 0)
I'm with you, PeteZa. I only started having some normal days the last month or so and I find myself only realizing by the end of the day that I didn't have any symptoms and it's kind of a weird feeling at that moment and I really try to celebrate it, but it's always in the back of my mind that it's temporary, which is kind of a version of PTSD in my opinion. Very hard for the mind to process and make sense of it. Like it wasn't hard enough dealing with the illness itself!
Posted 5/2/2016 4:38 PM (GMT 0)
Ha, I know just what you mean. I had a few hours where I felt like "myself" again. I was trying to explain it to my husband.

The easiest thing I could equate it to is finding and old favorite sweatshirt (one you used to wear all the time) that you haven't worn in years. You put it on, and it feels so right, so normal, so comforting, but it also feels strange because you haven't worn it so long.

When those windows come, I am unstoppable, determined, and joyful!

-Chris
Posted 5/2/2016 4:42 PM (GMT 0)
I ask myself, whats normal? Wake up and hope I can go to work today. Better take some xanax along just in case. Oh and ibuprofen too. I wish this ringing in my ears would stop, and wow does my shoulders hurt. Maybe if I crack my neck thatll help. NOPE! Guess I shouldnt have done that. Holy crap tying my shoes stinks. Maybe I better get some velcro shoes. At least my stomach doesnt feel too bad today. Crap, spoke too soon. Better take some pepto along. Whys it feel like my truck sits higher today?? Geez if it gets any higher ill need a ladder. Boy I wish my vision would clear up. Boy I cant wait to see the doctor. I did remember to lock my door didnt I? Oh well, not much to steal anyway. Geez my stomach hurts. Everybodies looking at me like im 90. I cant help im in pain. I hope this day goes fast so I can go home and lay on my couch.

Well I guess that wasnt so bad. Maybe I can get something done today. Ill throw in some wash. Darn that tired me out. Ill just take a quick nap. WOW! Its 8pm already! I didnt think id sleep for 4 hours. Boy I feel more tired now then when I got home. Didnt eat supper. Better get something to eat. But I really dont feel like eating. My stomach hurts too much. Knees bothering me too. Maybe ill just go to bed.

Normal? Havent a clue what normal is anymore.
Posted 5/2/2016 4:44 PM (GMT 0)
Yes I have. My eye has been twitching now for four days. I'm always in some sort of pain or feeling uncomfortable which has an extremely negative effect on my mental health.

I feel like I I never really appreciated before what being healthy felt like.
Posted 5/2/2016 4:47 PM (GMT 0)
cr3ativegirl you hit it on the head PTSD. Oh my gosh.

Girlie, thank you!

Trader, you write so well and describe it perfectly.

Evianangel, we sure do look back in appreciation and wonderment at what we were able to do.
Posted 5/2/2016 5:15 PM (GMT 0)
I haven't had a normal day in 19 months so yes I basically forgot what it is to be like 'everyone else'. The other thing I know will happen to me (and has to others) that even if one day I'm back to normal (or normal most days) due to this long, protracted illness there's a deep, profound sense of sadness in my very soul that will never be healed by time or health. Others go through such things when there is a major trauma to their lives like losing a loved one.

On the other side I hope some good comes out of this illness like appreciating life more, my health, and not sweating the small stuff as much.
Posted 5/2/2016 5:28 PM (GMT 0)
I've never known normal or been normal so dealing what my body is dealing with is actually normal for me if that makes sense. In a way, our identities become wrapped up in whatever adventure life tosses at us, and once an adventure completes, it can take some intention, and shifting of underlying belief systems to shed the self associated with a particular adventure. Sort of like a past life in a present life. I imagine once one is symptom free, as with someone with cancer, there is that risk of things flaring up, but the positive thing to remind oneself, is that one managed to create balance before, and if things flare up, one can achieve balance again. Good luck everyone ! Positive vibes to each and every one of you.
Posted 5/2/2016 6:32 PM (GMT 0)

trader758 said...
I ask myself, whats normal? Wake up and hope I can go to work today. Better take some xanax along just in case. Oh and ibuprofen too. I wish this ringing in my ears would stop, and wow does my shoulders hurt. Maybe if I crack my neck thatll help. NOPE! Guess I shouldnt have done that. Holy crap tying my shoes stinks. Maybe I better get some velcro shoes. At least my stomach doesnt feel too bad today. Crap, spoke too soon. Better take some pepto along. Whys it feel like my truck sits higher today?? Geez if it gets any higher ill need a ladder. Boy I wish my vision would clear up. Boy I cant wait to see the doctor. I did remember to lock my door didnt I? Oh well, not much to steal anyway. Geez my stomach hurts. Everybodies looking at me like im 90. I cant help im in pain. I hope this day goes fast so I can go home and lay on my couch.

Well I guess that wasnt so bad. Maybe I can get something done today. Ill throw in some wash. Darn that tired me out. Ill just take a quick nap. WOW! Its 8pm already! I didnt think id sleep for 4 hours. Boy I feel more tired now then when I got home. Didnt eat supper. Better get something to eat. But I really dont feel like eating. My stomach hurts too much. Knees bothering me too. Maybe ill just go to bed.

Normal? Havent a clue what normal is anymore.


That describes it perfectly...sums up many of my days....little voice in my head constantly noticing every little thing...questioning this....wondering that....
Posted 5/2/2016 8:32 PM (GMT 0)
Thank you to everyone who has shared their story. This is only the second day I have been to this site and while it gives me hope that someday I will wake up feeling like I've returned to my old life where my ears don't ring, I can eat any food I want, I am not worried about forgetting how to fill out a check, etc. , it also makes me sad that so many are routinely dismissed by doctors we've turned to for help.

Again, thank you to everyone in this group who understands in a way your family and friends really can't.
Posted 5/3/2016 5:35 PM (GMT 0)
Time..........

Post 15 months ABX. Muscles work a little better, struggling rebuilding them. I gave myself a three day work out test the past weekend. I was actually able to do it. Now Tuesday, boy am I sore and stiff. Over did it again. But you dont know the limit unless you test it.

This is when I'm gratefull for knowing all the trigger point and myofacial release methods. If it wernt for that, I'd be in pain today, a step up from major aching that I'm feelig now.

But two years ago (before ABX) what I just did not have been possible.

So my "lyme doulbting" regual MD's say the ABX did nothing since I'm not 100%. It did somthing, just not as much as expected. Been like that for 20 years (stuck muscles), so I guess the healing might take years too. I am sleeping now (still!!), but its never enough.
Posted 5/3/2016 9:38 PM (GMT 0)
I have not felt normal since 1985.

I just mentioned to my daughter how I have to be at the point I can't move before I take a pain pill and asked if after the first 18 years of not been given anything that helped if suffering is just hard wired into my brain.

I am at the senior age now that I am sure this is my now will always be my normal and it would be better for me to stop wishing for what's not going to happen.
Particularly hard today because in one of my many dreams overnight I was walking so far and so easily I commented in my mind, in my dream, about it.
Posted 5/9/2016 12:56 AM (GMT 0)
I haven't had a 100% full day of totally symptom free. But I have had long stretches during the day. Some days, all day long I feel weird and have symptoms, other days 75% of the day is good.

It may sound REALLY weird but psychologically the brain accepts it, so when nothing happens (symptoms), I wouldn't go as far as to say you "miss it" but "normal" almost feels wrong?

Don't know if that makes sense.
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