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Regarding Broken's and +Lyme's posts from yesterday and my anxiety and rage

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Posted 10/23/2011 8:02 PM (GMT 0)
Hi Everyone:

Yesterday was a VERY ROUGH day for me. I logged on earlier in the day and started a post about how much rage I was feeling, how I feel like the unluckiest person alive, I hated my life, I hated my husband (poor guy) yesterday, I was jealous of him because he wakes up everyday after a good nights sleep feeling chipper and ready for a good day, etc.

Anyway, I started my post and and got interrupted by my son and didn't want him to see what I was posting. Later in the day, I logged on and saw +Lyme's post and wanted to respond but couldn't because my husband and son HATE IT when they see me on these forums. They think it feeds my thoughts about lyme and creates negativity. When I didn't know what was wrong with me before being DX with Lyme, I spent an incredible amount of time on the internet searching for answers. And, as I am sure many of you can attest to, that isn't always good....I had every neuro condition there is at some point or another!

Today, I'm feeling a little better, but still feel the raging to a point and the feeling of "why me". I get soooo jealous of other people who don't have this disease! There have been many times (before my DX) where, like +Lyme, I literally thought and still do to some extent, that my family is SICK AND TIRED of hearing my complaints. I'M SICK AND TIRED OF HEARING MY COMPLAINTS! Why can't I stop?? Even when I feel okay, I still find something to complain about. I have a fear that if I don't tell my husband that this hurts or my foot is tingling, or whatever that he will think I'm okay. The minute I seem to feel better, it's like "let's go do this, let's go do that". My fear is that if I plan something, that when the day comes, I won't feel good and will let him down yet again! We are going away in a couple of days for an overnight trip, and I'm having major anxiety about it!!! Why can't I enjoy that I have a trip coming up with my husband????

I wish sooo bad that I could get over this fear and just move on with my life. To make it worse, I know for certain that i don't feel nearly as bad as so many of the people that I've read about. Why can't I let myself feel good???? I was NEVER like this before my symptoms started....NEVER!!!!

I'm still feeling some rage as you can tell. I hope it passes soon!

Is it something in the air???
Posted 10/23/2011 8:35 PM (GMT 0)
oh   my   goodness

Did the ticks do this to us?????

Why do I understand exactly what you mean and why does it all seem so familiar to me???

I would never have put it in words but yes yes yes, I know what you mean.

I felt the need to let my husband know of every tingle, needles, numbness, mild headaches etc etc.

BUT one day I realized that the poor guy has to hear all this negativity and he cannot do anything to help so maybe I better only say when I have something major.  I got sick of whining and I thought to myself "just shut up!  you sound like a hypochondriac!"  So now I try hard to keep alot to myself.

I don't know why you can't let yourself feel good but I know what you mean.  It is like me.  I have been feeling better and I told him how good I am feeling but underneath I dont want him to think all is well yet.  It is like I still need permission to be sick if and when any symptoms come back.

I told another how good I am feeling and it was funny (but annoying) to watch.  She perked up and realized that it was a safe topic now.  Feeling good vs feeling SICK.

So I think rather than tell others of every single feeling we have, save it for the more severe symptoms.  Be sure to share when you feel good, they need to hear that sometimes something is getting better.  Maybe they need some hope too.

Also, just allow yourself to feel good.  Thats what they told me on here last week.  I was thinking maybe it was the abx not strong enough.  Anyway, I allowed myself to feel good and to share that IF anyone cared.  BUT I felt like I also needed to let them know that while I feel good, I am not out of the woods yet.  I didnt but I felt the need.

I say, go ahead and enjoy your trip with hubby and do your best to stay positive, feel good and have a good time!  It'll do you good!! :-)

Posted 10/23/2011 8:59 PM (GMT 0)
It's definitely a tough situation to be in. We have no choice but to be extremely aware of our symptoms, we have to write down every little thing in our symptom diaries (at least I do) and we never get a break from Lyme...

I've been struggling with this same issue myself...I catch myself babbling about Lyme and pointing out my every symptom. I honestly think it's because so many of us have been invalidated so much for so long that we still want to prove how sick we are! I also spend a lot of time learning about Lyme, and for me it's like my job. I'm like one of those people who never shuts up about work...only it's a disease that I'm obsessed with.

I lost a good friend and my most recent boyfriend to my complaining. My boyfriend said being with me was too stressful and he was sick of how I'd argue every positive spin he gave me when I was being negative. (I also think the girl he was cheating on me with factored into the breakup, and it would've been a little nicer of him to give me that reason for why he left me rather than making it out to be me being the problem, but that's another story!)

I think it's just really tough, because, in my case at least, I don't do much but be sick, or learn about Lyme. I don't have a ton of hobbies so I talk about what's going on in my life...which is Lyme. I also forget that even when I'm not complaining, but just babbling randomly about my disease...people don't love that either.

And Carrie, I was thinking the same thing! Something's in the air!!
We all have to band together to support and validate each other more than every now. We'll get through this together.
Posted 10/23/2011 9:16 PM (GMT 0)
I feel that this is why we really need to find a hobby of some sort - cooking, gardening, crafty type of things, just about anything that doesn't have something to do with Lyme, even crosswords or sudoku!

It's really hard to get to know the you that is emerging with these trials that we have to go through if we don't find out what we like to do!

Something to think on.
Posted 10/23/2011 11:01 PM (GMT 0)
I can relate to the posts and I can complain, whine, moan, b****, rage, etc. etc. with the best of 'em.....BUT underneath it all I'm terribly grateful to have finally, finally, finally found the diagnosis of lyme to validate the symptoms. To me this disease is worse than cancer (yes, I've had it), but at least I now know the enemy and I'm not crazy (well, maybe a little....). A long time ago I posted that the one thing I probably hate the most about lyme is that I never know how I'm going to feel from one day to the next. My husband and I just celebrated our anniversary this week with an overnight trip. I felt crappy but have certainly been worse. I functioned. So Carrie48, go ahead and make your plans. If the day comes and you can't do it, so be it. But what if you make plans, the day comes and you CAN????? What a victory!!!!
Posted 10/24/2011 3:55 AM (GMT 0)
Thanks Jess1ca318....It's an interesting time in my life. I am....well.....er.....'older'....almost an understatement(!!!)....and this was our 5th anniversary. I'm sure if my husband knew what he had signed on for he would have run in the other direction!

For those of you who are weary of fighting....I've been at this for around 40 years.....so don't give up now.... All the best....
Posted 10/24/2011 2:00 PM (GMT 0)
Hi Everyone:

Thanks so much for your posts. I am emotionally feel much much better today. Some days I feel this anxiety/rage feeling that I simply cannot control. Tack not enough sleep on that of that and that equals a really bad day. Is this all lyme? I don't know. I'm perimenopausal now too at age 49 so it could be some of that too.

I cannot remember who posted it recently, but someone posted that they were having a hard time enjoying their good days because they fear that it might not be a sign that they are getting better or something to that effect. I think I kind of feel like that. On my better days, I tend to focus not on the good day that I'm having but instead on something bad...it could be that maybe the meds aren't working or maybe this is just temporary, etc...I don't really know how to explain it.

I have not seen that lyme movie under our skin. My husband doesn't want me to watch it and for good reason. I tend to read something and worry that it's going to happen to me. I was NEVER NEVER like this before I became ill. I have watched a couple of trailers for that movie and it really scared me.

I get worried that I'm going to end up soooo sick like some of the people I've read about or saw in the movie trailers. How did they get that sick? Were they on treatment? Should I expect to get that sick? Can I expect to completely recover from this or will I be sick from this for the rest of my life?

To be honest, I have a lot of fear about MS too. I am supposed to go in for another follow-up MRI before the end of the year (which will be a one-year follow-up) and I am scared to death that they are going to find more lesions and call this MS. Now, I can be rationale and say that my symptoms or more Lyme like and not MS but I still have this fear sooo bad. I know this is causing me a ton of anxiety too.

Anyway, I don't hate my husband and I really do feel bad for saying that. We are happily married now for 26 years and he is one of my biggest supporters.

Geezoooo.................. Thanks so much for listening everyone!!!!
Posted 10/24/2011 2:26 PM (GMT 0)
Carrie said "I cannot remember who posted it recently, but someone posted that they were having a hard time enjoying their good days because they fear that it might not be a sign that they are getting better or something to that effect. I think I kind of feel like that."

Well that would have been me!  However, I was only wondering if it was real or if it meant my meds werent enough.  I needed to know that so I knew what to do.  I did not want to get complacent and do nothing if the lyme would progress because I may not have been on the correct abx.

Let me tell you tho, I have been and still am enjoying feeling well!  It is not 100% nor is it all the time but I am beginning to relax and know that "for now"  I am doing ok.   I do notice that my interests have changed from pre lyme but I will do what Trav suggests and search for what still interests me.  I always had a zillion hobbies and interests.  Usually anything that is creative I would enjoy.  I kinda think it is just our lyme minds messing with us.  Once we get squared away, we will probably be the same again.  We will be ok!

Try not to stress about the MS thing either.  Remember I am in the same boat as you with that.  I have lesions and one dr said maybe MS and one said classic lyme.  I say lyme.

So we fix lyme and we fix us.

Oh and you are already treating your lyme.  So don't worry, you have no reason to believe you will end up as bad as some of the people you have been hearing about.  I used to think that too but common sense says that it should only get better from here.

Did I tell you I am getting a rife machine early November??  That is going to be a birthday present from hubby to me!  tongue

Can't wait to try it.

Part of my positive attitute is coming from a wonderful conversation I had with the guy that makes the coil machine.  He was so knowledgeable about lyme and really set my mind at ease on alot of stuff.

And of course you don't hate your hubby.  We all say stuff we don't mean.  Trust me, I have said plenty to my husband thru the years.  And I have been happily married for 34 years.  He is my best friend in the whole wide world!  You will be fine.  Try not to worry :-)

 

Post Edited (scorp10) : 10/24/2011 8:31:00 AM (GMT-6)

Posted 10/24/2011 3:41 PM (GMT 0)
Miss Cran: I looked at your positive post and am trying to think of positive things to do for myself today. It really does help. Thank you and hopefully I will have something good to post later today. I'm feeling pretty good today so I plan on trying to get LOTS done today since I got nothing done last week. Thank you.

Scorp - How exciting you are getting a rife machine!!! What type are you getting? I have a Doug Coil and the man I bought mine from, Alex Levy, also had Lyme and cured himself with the machine. He is very nice.

Thanks again everyone for all your encouraging posts. Days like I had Saturday really wear me down!
Posted 10/24/2011 3:45 PM (GMT 0)
All good advice!!! Our members rock!!! turn

Good to 'see' you again Mamyou!! How are you doing?? I sure hope that you are feeling better! smilewinkgrin


I know what you mean Carrie about not wanting to watch the movie 'Under Our Skin' seeing how bad those people are! Only I couldn't watch it as it brought back my fear when I was really ill like some of those people in the movie. I can tell you that for me, I was so ill because I went for at least 37 years without a diagnosis or adequate treatment, but having symptoms the whole time that were never recognized. So I would also agree that you have very little to worry about when it comes to being that ill. You are in treatment, so it's unlikely that the infections will get the upper hand again.

I don't believe that you should expect anything short of all symptoms being gone!! I would say be in remission though rather than 'cured' as there is still some debate on that, but I believe most who get infected and get the appropriate treatment for the appropriate amount of time (2 months past all cessation of symptoms) will live their lives as fully as possible! At least that's what I'm looking forward to!! smilewinkgrin

I also agree that most - if not all of us here- didn't think that you hated your hubby - we understand the levels of frustration we can all experience from time to time with the situation rather than the people that are involved! I know I sure can!
Posted 10/24/2011 8:12 PM (GMT 0)
I get being pissed off, I really do. I have hardly ever been ill in my life, had 2 surgeries when I was a kid to correct my eyes and that's it. Finding out I had Lyme was a real shock to me. And then add to that this week, I got a diagnosis of Celiac disease, hypothyroidism, candida infection and am pre diabetic. I was like ***. No, really.

It's hard for people to understand what I am going through, especially since my illnesses and conditions are invisible to the naked eye. I even had to educate my husband on it and I was doubly pissed when he announced "You're turning into your mother" (she has hypothyroidism and Celiac too.) But then I took a step back and thought about what I do have- good insurance, two beautiful kids, a roof over my head, food on the table and a computer to talk to people from all over the world who are going through what I am. For that I am grateful.
Posted 10/25/2011 1:41 AM (GMT 0)
Britgirl:

You might be amazed at how much better you will feel when you give up gluten. Celiac's can cause a LOT of problems and symptoms! I will be excited to hear your progress. I know it takes a few months of being totally gluten free before you begin to feel better. Good you found out because eating gluten with celiacs is really bad for your body. my sister in law has celiacs and is amazed at how good she feels now! And, going gluten free is much easier than you think it is!!!

Thanks for your post!

Carrie
Posted 10/28/2011 2:59 PM (GMT 0)
Hi Britgirl!
Here is something that I came across and thought of all of our members who are having to go gluten free, so I saved this link - www.celiactravel.com/

It mainly about traveling when one has Celiac's, but I'm sure there is some good info there! Hope it helps a tad bit!
Posted 10/28/2011 4:35 PM (GMT 0)
i have found the "loss" of relationships was worse than the lyme itself......and when i could figure out what was causeing me so much grief...then i could correct it.....it was everything going on at one time...my doc asked me one time if my knees were bothering me..and i actually told her this.."i dont know if my knees r bothering me because so many other things r hurting".....that was a wake up call when i heard myself say it....u got to prioritze and organize your feelings and emotions the best way u can.....so when i realized the "relationship" part of Lyme was actually affecting me than my physical pain...i knew i had to address it.....i have learned sooo much since my diagnosis about me and my "relationships".....and right now im allowing myself to mourn the loss of those people that were so special to me.....and once i got some of those toxic emotions out...my physical actually eased up some...i didnt feel so burdened...so heavy and "sloth like".....i know there will come a time when i will see those people and have to eother be nice or either tell them what i think of them....but im not worrying about that until it happens....so off and on today i have tried to figure ways to allow myself to be happy through my journey....i joined ancestry.com and decided to make family trees for christmas gifts...*actually make ones that are like 18 by 24 that can be framed and matted.....that will well occupy me til christmas...and i deleted my facebook account this morning...because it would cause me stress knowing someone had deleted me once again.....we are all going to make it....its just tough not knowing what to do with your time and dealing with people who dont understand.....but as i take it one day at a time....all of you are too...and thanks for all the healtfelt responses and allowing me to release those toxic emotions and get them out.....
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