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Depressed, Lots of Aches/Pains, Grieving for my past life before lyme

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Posted 4/30/2012 5:01 PM (GMT 0)
I'm having a bad couple of days.

Had a complete emotional meltdown last night and woke up this morning still very very emotional and decided that I am not going to work today.

Before 3 years ago when all my health problems started, I was vibrant, got up every morning happy and full of energy, excerised like a crazy woman, went out and did things with my husband, and thoroughly enjoyed life.

Now, I can't plan out a freaking weekend trip because I don't know how I'm going to feel. I'm supposed to go to Vegas this weekend with my husband to meet up with another couple that I have seen in years. I say "I" because I find myself telling my husband to just go without me anymore. I have so much anxiety anymore when it comes to planning something....I just can't take it.

Also, I had to stop all my herbal things last Wednesday because I've had such bad acid reflux for over two months and that really has me down. I'm already taking a antidepressant (30 mg cymbalta that I started about a year ago) and I think that also might be contributing to the acid reflux so I may have to stop that too.

I WANT MY OLD LIFE BACK!!!!!

My left shoulder has been hurting for some time now. I want to go to the doctor and get it checked out but I know my husband will roll his eyes because well.....a lot of people think I'm making all this crap up! I just don't know what to do.

I just turned 50 last month and am going through menopause. Is this what menopause is like or is this the lyme talking?

I'm sorry for the downer post...
Posted 4/30/2012 6:06 PM (GMT 0)
I hear you!

I miss my old life, too. Some days I get really depressed because all I seem able to do is rest. I don't socialize anymore because it just takes too much effort and energy - energy I don't have.

If I do something outside the home on a good day, I'll spend days recuperating. I am so sick and tired of being sick and tired.

I want to work in the garden like I used to, take the dogs on hikes in the woods like I used to, have fun with my children and grandchildren like I used to... I WANT MY OLD LIFE BACK! It's so frustrating.

Post Edited (Tickle) : 4/30/2012 12:09:04 PM (GMT-6)

Posted 4/30/2012 6:08 PM (GMT 0)
Forgot to add that I want my old personality back! Lyme and co's have flatlined it, and I've become so dull. Blah!
Posted 4/30/2012 7:07 PM (GMT 0)
You have to keep at it...don't let the anxiety get the best of you....just titrate back on activities. I have felt like pure crap for a year now but I still go out and do things - you have to - life only comes around once! My wife and I went to CA on vacation just two weeks ago for 10 days - I was feeling miserable leading up to it but went anyway. I had bad days and good but I did it and I think that helps with the slow, steady healing process. This past 7 days have been very good (of course, AFTER I get back from the vacation). Your "old life" will never return - and this goes whether you are sick or not. Life is about changes and we have to adapt to change - good bad or indifferent. Sure, there are odd-ball days that I have a 'pity party' for myself but, in general, I get out and do what I can no matter how bad I feel.

The disease, the bacteria, WANTS you to stop living a vibrant existence so it can thrive in an inactive body - we must do EVERYTHING and ANYTHING we can to not give in to its demands. also, instead of looking at your day as "I couldn't do this" or "I had this bad thing happen to me", try and restructure your thoughts to "Hey, I got an hour in or working in the garden" or"That was a fun half hour sitting on the deck." If you can do this, and keep it going for the most part, you'll find that your mindset will change and even your physical condition will improve - that's the way it's been for me. Don't get me wrong, I still whine and complain to my wife a LOT (God love her) but, in the end, I know that the only way past this disease is to engage in life as best I possibly can. YOU CAN DO ANYTHING YOU SET YOUR MIND TO - not matter what your disease condition might be!
Posted 4/30/2012 9:18 PM (GMT 0)
Carrie, I do understand. 10 years ago I got sick with Lyme and have been living in my bed the last 4 years.My husband and I got married 12 years ago. I truly feel he bit off more than he could chew with me. I am not a wife to him, I can't stand in the kitchen and cook, I can't clean, we can't do anything together. I have gone through many stages of grief and at some points I have all but given up. Because there are so many strains of Lyme it is not always easy to treat. I had tried it all when I heard about Roxy, its not approved in the USA but we order it. I'm taking it with Doxy and will switch up later and take the Roxy with Bactrim. I pray every single night that will be what finally gets me out of this bed so I can start living again.
Keep fighting the good fight!!

Yazzer, you said YOU CAN DO ANYTHING YOU SET YOUR MIND TO

I'm not a negative person but I must disagree with you. Maybe my screen name sounds like I gave up but the truth is, so far nothing has helped me.
There are illnesses that no matter how much you fight and keep a positive attitude that you can't always win.
And I have tried for years to get out of this bed and live a normal life and I have a strong faith but sometimes that isn't enough.
Posted 4/30/2012 9:39 PM (GMT 0)
Carrie,

I often ask the same question as to what may be lyme and what may be menopause. I'm on a meno forum and so many women have the same issues with anxiety, not wanting to go anywhere, lack of motivation, aches, pains, etc. I've come to the conclusion that what I am experiencing is from both lyme and changing hormones, which ramps things up quite a bit.

For me, anything that requires a change in routine, especially trips, is very challenging. The old me would go anywhere, anytime. Some things I will push myself to do, such as visiting children. Some I won't, such as a long car trip for a relative's wedding. Vacations aren't quite so appealing anymore, either; I'd rather stay home in a controlled environment.
Posted 5/1/2012 2:18 AM (GMT 0)
I want a real life too! I'm so sick of this. I can't say I want my life back because I've been sick for so long I don't remember being normal, but I do remember not being this bad off and I wish I could just get better. I am dying for a vacation , but I don't know if I'm able to do anything. Can't eat normal because of Lyme and Candida, can't function normal, can't wake up early, can't walk much without suffering badly..can't do anything anymore. Can I join in on your crying party? *sniff*
Posted 5/1/2012 11:43 AM (GMT 0)
Nolymecure4me... I can see your point for sure. I have tried every type of mind control and motovational courses and weeks of silent meditation and lived in communities where your words really do create your life.

and it's over 20 yrs with me trying all the diets from ayurvedic to raw
not knowing all along it was lyme. I'm 57 female on disability and everyday
feels like the flu.

but if I don't maintain a friendly mind with this I will hang myself.
Negativity is a paraasite. Parasites control the mind and the behaviour.
Even when we think we are being conscious we have to mind our conscience.

I think there really may be something to this "endorphine syndrome" also for many of us. this is the inability to experience joy and that is PAIN.

It is a disease of sludgy neurotoxins holding us in bed and fogging up our brains.

Every day we have to have this negotiation with ourselves about our fatigue, foggyness and pain.

It plays out very different for those who are completely alone and most likely as a result of the disease and those who have family that they have to show up for.

When you have to show up for your family, friends and co workers the preasure of GETTING BETTER is 10 fold magnified. .

It's hard to say which is better. to be left alone in your misery and have to find ways of completely focusing on your self without becoming completely inlexable and severely depressed

or... living with others where there is some other distractions besides your own psychie and flu symtoms. It can be more stressfull if others "don't get it". And we always feeling how much this relationship is NOT working.

more relationships fall apart bcause of illness than we realize.

for me I got tot the point where I would never let someone get involved with me. It's like being strapped to a bomb. You can't make plans.
I go into a complete panic when I get an RSVP in the mail.

It's upsetting just not being able to look forward to anything.


But we have to stay away from negative thinking speaking and acting.

and this does not even mean be ALL POSITIVE.

A Positive mind is a turbulent mind also. Going out and screaming your head off is probably the best release of all this tension and gibberish. or lauging but screaming just may be more of a fit.

Even reading some of the posts is too depressing for us but people need to share their experience. this is what we are here for.

For me I cringe every time I read the tag name..nolymecure4me> >>>

It is only my experience but I'm wondering just how is that name working for you, NLC4M
Posted 5/1/2012 12:53 PM (GMT 0)
You pretty much described my life, we could be the same person. My screen name means simply 'There has not been a cure for me'. I have tried everything known to man. I am currently taking Roxy that we must order because it's the latest thing we found out out about.

I was previously on another lyme board and was accused of not trying long enough or hard enough to get well because according to one guy, I would be be cured if I had done everything the correct way. For 10 years I did everything possible and to the letter but I only got worse. Who would want to live this on purpose?

Am I upbeat and POSITIVE all the time? No, anyone that has lived in bed for 4 years that says they are, is lying.
Do I lay here and feel sorry for myself, having a pity party, No, but it does happen once in a while but I am good at hiding it from my others. I feel he has suffered as much as I have. He has watched me go from being a very energetic woman to someone who can't sit up alone.

My life now consist of watching TV. I make certain I only watch shows/movies that are happily ever after/comedies etc...nothing sad or violent.
I also look out my bedroom window thinking how beautiful the world is and daydream of the day I am well.

When I saw an LLMD he was the 1st to tell me that there are many strains of lyme and not everything works for everyone and he was a good Dr. He had tried everything he knew. I also admit that I started giving up hope when I heard those words from him. The fact is, if it was an easy fix there wouldn't still be people like me suffering.

Last but not least by any means, I pray a lot and often. Each morning I thank God that I wake up and I always say say, maybe today I will get that miracle.

As long as there is life, there is hope. I have not given up and never will but I am facing facts and want to be realistic.

Post Edited (NoLymeCure4me) : 5/1/2012 6:56:47 AM (GMT-6)

Posted 5/1/2012 4:44 PM (GMT 0)
Well...Clearly, I'm not alone. Thanks everyone. I'm in a little better spirits today, but I did totally cancel my trip to Vegas.

Also, talked to my doctor yesterday, and I'm totally going off my 30 Mg Cymbalta as of today because I've had acid reflux for literally over two months straight and it is getting so upsetting to have this every day. I've stopped everything else and this is the last step. If this doesn't work, more tests, etc. It just never ends.

Bucci: I do have a family. Luckily, my kids are for the most part grown. I just have a 17 yr old son left at home and a 24 year daughter who is living back at home since graduating from college. My poor husband is very very frustrated though because of course, my life (or lack of one) is holding him back. Also, and I hate to admit this, but I get very angry with my situation and tend to take it out on him. I get jealous that he seems to just bounce around the house with not a care in the world and for some reason it makes me angry. I don't want to be this person!!!! And then I get mad at myself for being such a B**** and it is truly a never ending cycle. Sometimes, I do feel like just moving out, getting my own place and being alone in my misery.

Caldonia Sun: Can you tell me which menopause forum you are on. I would like to check that out.

Thank you everyone!
Posted 5/1/2012 5:17 PM (GMT 0)
I suggest reading up on Klinghardt's work with Lyme - he talks of the three (3) pillars that need to be addressed - the pathogen load, the detox AND the EMOTIONAL aspects of one's constitution. Furthermore, they all need to be addressed is a reasonably even and systematic way. Most every treatment regimen we see today only hits the first two - the pathogen eradication and the detoxification. The emotional aspect of the disease is what ends up holding many of us back. We have to address this part of it to get well - sometimes this can be done through yoga, meditiation or the like or sometimes through a formal course of emotional therapy. I know with me, this has helped pull me from the brink.

A lot of people here probably think I am some sort of pollyanna with this mumbo-jumbo about emotions and the like. But, I have been dealing with this disease for at least 35+ years. At times, periodically, it had gotten so bad, I contemplated suicide (passively, but still wished I was dead so I didn't have to deal with the disease). I could barely walk due to dizziness/vertigo and I felt helf out of my mind with out-of-body derealization and the like. My only physical ailment is intense shoulder pain in both shoulders at times. Still - and not to belabor the point nor criticze anyone here - I felt the only way to get out from under this dreaded disease is to stay active in life. I didin't care if I could only walk around the house, I did it - I refused to stay in bed. It hurt and it felt awful with the neuro symptoms, but I did it. Each time I did something like that, I gained a sense of more and more accomplishment and could actually do more and more every time I tried again. I want my old life back too and I finally came to grips with the fact that if I wanted it, I had to be the one to go and get it. Right now, I am 70-90% on the way back - I am back to running 20-25 miles a week (I ran 7 miles one day a month ago when I was so dizzy, I thought I'd fall down at any momemt). I am NOT BRAGGING either, I just know that waiting on meds or herbals to work to get that old life back is only part of the solution - we have to mentally KNOW and BELIEVE we will get better and we have to be an active participant to making sure we stay in that mindset. It's SO VERY TOUGH at times but it can be done.

I am not saying go out and run a marathon but set tiny goals at first and do them. Then, expand the envelope as you make a next set of goals. It's amazing what can happen. Maybe men are different because I have NO CHOICE but to provide for my family and, growing up in a poor family back in the 70s, I learned to tough it out even in the very worst of times. So, maybe that's a part of my constituion that helps me declare war on Lyme and defeat the crap. But, if I can do it - have Lyme for 35+ years that went undetected and misdiagnosed as depression and panic disorder and all sorts of other maladies - then I guess I feel that anyone can do it.

Okay, I am off my soapbox....and I know that everyone will have to find their own path through their illness and it won't be the same as mine but I just wanted to offer up my experience in dealing with the vile critters of the tick belly....
Posted 5/1/2012 5:44 PM (GMT 0)
Yazzer:

I completely agree with everything you said. All of it . . . well, one part made the hair on my neck kinda stand up. This part . . . "Maybe MEN are different because I have NO CHOICE but to provide for my family . . ." Yikes! In most families in our times women have NO CHOICE but to provide for their families as well, at least in all families that I know. My Mother raised eight children on her own from the time I was 6 months old until I was an adult.  She had NO CHOICE but to provide for her family in all aspects. There are plenty of women on this forum who also have NO CHOICE.  I know this isn't a platform for standing up for the women.  We have enough to be concerned about dealing with this terrible desease, I'm just sayin' . . .

You really know a lot about Lyme and you have helped me many times. I always look forward to hearing what you have to say because I feel I can rely on it.  For that I thank you.

It was just this one little thing that wouldn't go away in my head.  Okay, now I am off my soapbox . . .

Post Edited (Hopeful Maxine) : 5/1/2012 11:50:16 AM (GMT-6)

Posted 5/1/2012 9:20 PM (GMT 0)
Adjusting to this disease psychologically/emotionally is one of the trickest parts, IMO. Don't forget, the bacteria/toxins can have a pretty serious impact on the chemicals in our brain - sometimes it can truly feel like our emotions have a life of their own! Sometimes it helps if I just tell myself, "okay, I'm going to be really cranky/tearful/angry today - oh well!" and just make an effort not to take it out on anyone else (not that I'm perfect, but I do make the effort!) and wait for it to pass. Usually, when negative emotions take over, that's when I put a little extra energy into the little things that make me happy - simple things like watching a favorite movie, listening to upbeat music, having a silly conversation, etc.

I've been on both sides of the spectrum - sometimes I have a "there's NOTHING I can't accomplish if I set my mind to it!" attitude, and sometimes I cry my eyes out because I can only move my for minutes at a time before being totally paralyzed for hours. We all have our limitations. Some of us can't always walk or stand. Some can't always navigate through the emotions and the biochemical processes in our brains to get to a peaceful state of mind.

I think the best thing we can do is always try to remember to treat ourselves with compassion! We're all doing the best we can, and as far as I'm concerned, that's pretty commendable!
Posted 5/1/2012 10:35 PM (GMT 0)
Lol. My apologies for the chauvinist and sexist remarks about the male aspects of they disease! My attempt at making that point went askew. And, border, I agree with your assertions. We cannot always be upbeat. A positive mindset is not being happy and cheerful with our condition all the time, rather it just means to basically nurture onesself in a positive and productive way! Permission to grieve is good, but with the back drop of positive actions to get better. And to push our selves outside our comfort zones in order to keep making forward progress to heal...
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