posted
So today is a bad day. I just need some encouragement to make it through.
I am so tired of feeling bad. What does it feel like to feel good? I can't remember.
This neuropathy is creeping up from my feet and hands into my entire body. This worries me - yesterday I couldn't drive home from my folks house because my foot kept falling asleep - will I not be able to drive anymore? All my lyme symptoms worry me. Does anyone else spend any length of time worrying about all the weird and disconcerting symptoms they have?
Why can't they just be "normal" aches and pains. I think every symptom I've had is major and very troublesome. Sometimes I think, that's it, I've got something else majorly wrong with me and I'm just plain old done for.
I feel very hopeless today. Maybe I'm having a herx, maybe this pathetically low dose of doxy has done nothing all this time, maybe it's PMS, maybe it's just Lyme doing it's thing, maybe it's a co-infection - who knows. All the unknowns drive me completely insane.
I just know I feel lousy and I'm just tired of it. I want just one good day to remember what that feels like.
Enough complaining - I know everyone feels bad and I'm no different, I know I probably feel a whole lot better than alot of you. But I just need to complain to folks who would understand.
My husband is great and he is very empathetic but he only gets it so much and I don't want to whine to him all the time.
Okay - enough, enough - thanks for listening to my rant. You guys are the best.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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posted
Aimee, yes the bad days do tend to lingera little too long in my opinion.
And, I too, have had the days where you do think "I know there is something else wrong and I'm done for."
You can complain here becuase we all understand. There will be good hours they will be few at first and then they wiil turn into days and then into weeks.
I've had days when I would take it minute by minute literally. But those days, for now, are done.
Hang in there knowing it will get better.
Posts: 262 | From ohio | Registered: Jul 2008
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It will get better! Be patient and compassionate with yourself as hard as that is.
Wondering what is wrong with you is the worst! I chased more symptoms after being diagnosed than before. CT scans, MRI's, x-rays, too many to count.
Always came back normal w/ no explanation of my symptoms. LLMD recently (after years) said he thinks its all from Lyme.
Uncertainty is the worst.
You will get through it and you'll be amazed at the strength you have to fight this. That's the best part of Lyme...you learn a lot about yourself and what is truly important in life.
Hang in there!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Aimee, it seems to me you have been on doxy for 4 weeks. Correct?
If so, this is the lyme 28 day flare. This is your first herxheimer reaction, in other words.
Mark this date on your calendar. You could feel really bad for a number of days, then half bad for a number of days. Then, 28 days from now, the same thing will happen.
Look for the pattern. Then, don't plan anything for the bad days. At least once you see that this is the pattern, your worrying will go way down.
This is your first experience with this, so it is natural to worry. There is nothing like lyme disease to give you the most weird symptoms imaginable, or un-imaginable to a normal person.
Just know that if it is weird, it is lyme.
Once, it affected my vision (got gaps in my visual field), then my ability to think and walk and even move any part of my body, and I was thinking I was going to die. My husband had to come get me and take me home and carry me into his vehicle and I had to lean on him to walk. And, I could barely think or talk. Could not answer any question. It was like having a stroke or something.
But, the next day I was fine again. I once told it to a lyme doc and he called it a major central nervous system event.
That's lyme for you. Just accept that if it is weird or crazy, that is lyme.
The mental aspect is the worst, in my opinion. It makes you feel all gloom and doom. Like you will ALWAYS feel this way. It will never get better.
That was how it was for me. Then, the day comes when it lifts and you think normally again. Lyme depression. That's what it is. The stuff affects our brains, and that includes the emotions.
Drink lots of water with fresh lemon slices squeezed into it. It can help minimize the herx by cleansing the body of all the die-off or dead bacteria in other words.
Thinking of you!
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
Unregistered
posted
aimee, hugs/kisses
being timed at library and have 6 minutes left but sending you some comfort this way.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I believe this is the worst illness aside from cancer one can have. But you will get better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I know it's tough at times, but you have to hang in there and know there is light at the end of the tunnel even though you can't see it now.
28 days may seem like a lot, but it's just the beginning, and eventually there will be an end. Your pain now is just the spirocetes getting their butts kicked! .
Of course if have PMS AND are having the 28 day flare-up at the same time, yikes. That's a tough combo.
I'm having a down day too. My symptoms are really not much better and the babesia is proving a lot harder to beat than my lyme. (And even on insurance the Mepron is obscenely expensive).
But, at least I KNOW what the problem is. I'm not "just" depressed, etc.
So, on I slog through the TBD quagmire. 14 months and counting.
I'm luckier than some. I'm slowed down, but at least I can do most things I want to do. There are others who are very debilitated and can't do much of anything.
Anyway, we must fight on against the microbe invaders.
Keep your chin up, you'll feel better in a few days.
James
Posts: 872 | From New York City | Registered: Jun 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Hang in there. I was very very sick, and didn't see any improvement for 18 months.
I am almost back "to normal" hitting the 3 year mark. I went away last weekend-was out till 2 am walked for miles...almost forgot I had lyme!
It gets better, unfortunately, just slowly.
Posts: 1276 | From maryland | Registered: Jan 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Aimee,
Have you been treated for parasites/worms? They play a Huge part in this disease. Please do a search here on parasites and lyme. They can cause a lot of neuropathy,
It will get better, and persistence is key. This is a rough disease, but you can get to the other side and see some light.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you all so much for your replies - I have been checking in periodically today and just reading your notes has made the day bearable. I appreciate each and every one.
I know I am new to all of this, however the unknown is what is so disconcerting to me. Now that I can maybe file this day away as my first herx, I will have a point of reference for the next one. Thanks for the tip on that one - I didn't even think about that!
It is really good to hear "it will get better". Slow is okay, just so long as there is a flicker of hope that I won't always feel bad. I am very anxious for my LLMD appt.
Looks like I've almost made it through - it's already 5:30 - only a few more hours and I can get all the boys in bed and say so long to this not so wonderful day! Tomorrow will surely be better.
Thanks again - Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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posted
Lots of ups and downs with this illness. Remember you are not alone, that is, many here can relate and have had many better days, as will you.
Posts: 727 | From USA | Registered: Mar 2006
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WildCondor
Unregistered
posted
Keep fighting! It will all make you stronger! Channel that fear into determination and kick its a$$ into the ground! You can do it, you will win! SMILE and LAUGH!!!
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posted
God bless you Sweetie. Hope you are feeling better tomorrow.
Posts: 374 | From United States | Registered: Nov 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Patience.Patience.Patience. You've just begun the fight. It takes a long time with a lot of ups and downs, relapses, etc.
I relapsed in June, but I came out of it somewhat in a month. Last weekend I was on a lake jet skiing. I still don't feel normal, but I reserve my energy for the things I like to do.
I had been bedridden with this disease for more months than I can count.
Hang in there.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Aimee, Hang in there it is a bumpy ride. I am in the thick of it now. The sadness can be overwhelming. In the past 15 years I have always moved through it. That I do know for sure. The rest of this ride is like Forest Gumps' quote "you never know what your gonna get" one day is manageable one day is excruciating. Hang in there, Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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