Coping skills and/or meds

[cindy903]

Does anyone have any recommendations on how you cope?

I'm kinda okay. I work etc. But I'm not myself -- I am depressed a lot and obsess over having Lyme disease from pretty much morning to evening.

I don't think other disease affect people this way. My nature has always been to worry. So, I'm wondering if this Lyme isn't sort of a catalyst to get help with that.

Any and all insights welcomed!

[JackieCalifornia]

And PS to everyone on this thread:  depression is part of Lyme.

Try to remind yourself that feeling sad and hopeless is as much a symptom of the bugs as aches and pains.  If you can mentally separate yourself even a tiny bit from buying into the depression, it will eventually lift and you will feel better.

Try not to 'be' the depression.  If you can objectify it like a sprained ankle, it is less controlling -- tho it IS in your head, so very hard to do.  I tried to train myself to notice when I was NOT depressed, to record the feeling, and to play back the memory when I was depressed again:  "See, you are depressed now.  But on Tuesday, you weren't depressed.  Remember that?  It was real.  This depression is a symptom of the disease; it is also real, but it is not permanent.  This will pass."

[JackieCalifornia]

Hey, let yourself off the hook about the weight loss.  Get well first, and then get skinny.

When I am fatigued, I eat (unintentionally) to get energy.  So I gained weight when I was wandering around trying to get a diagnosis for what turned out to be Lyme+.

Then the meds I was on made me puffy, so I gained some more.

Then I changed meds, and the puffiness went away.  So did my appetite, to the point that I only knew to eat when I felt faint.

After a while I lost about 10 pounds total, but BINGO!  suddenly I was feeling really good and my appetite returned ... so I have gained back about 7 pounds.

My poor body is under so much stress that I don't have the heart to make it suffer through a diet.  Bodies read dieting like starvation; and if your body is fighting a hard battle with Lyme, why also send it the signal that you are going to STARVE it at the same time?

So be kind to your body:  it needs nutrients to get you well.  Being skinny comes later, after you are well.

[wonko]

I also feel as though I could have written your post!

I do think that reaching out to others, and realizing you are not alone in your feelings, is one way of coping.

My symptoms enhance when I am still, and especially when I am lying down.  As a result, I always wake up to my Lyme.  So no, not even a second goes by before I remember each morning that yeah, I'm still dealing with this.  

Similarly, even when my intentions are to not think about it, it creeps into almost everything I do.  I hope that as my treatment progrsses, my symptoms are less intrusive on my life, but that's how it is for now, and it does make me feel confined to obssessing over it.

Yes, I have all the doubts and questions too.  At this stage, I don't doubt my diagnosis as much as I question my prognosis or the effectiveness of my treatment, but it's all the same sort of stuff that makes you feel like you are spinning your wheels but not moving.

My treatment is pulsed, meaning that I take different antibiotics on different days.  Perhaps this is just in me, but this method results in me having really extreme oscillations in both my symptom load and emotional state.  One day I can feel more energetic, happy, etc.  Then I can very quickly crash, be mostly confined to my bed or chair (I too still work, though I'm not exactly pleased with my performance....), and feel very depressed.

I haven't dealt with depression like this since adolescence, and I was not feeling this way prior to treatment.  So I do think it is something that I need to endure while getting better, but I don't suspect that it will linger on forever.

I try to separate what is coming from me, and what is coming from the illness.  I often feel "this just isn't me" when it comes to my energy, motivation, and mood.  I try to hold firmly to the idea that this will pass and improve, that I'm not stuck like this, and that the "real me" is underneath it all and just waiting for me to get well enough to make a comeback.

At the same time, I think it is dangerous to have unrealistic expectations, so I do try to re-evaluate what I'm hoping for and adjust based on how much time goes by and how I'm feeling.  For example, a big goal of mine has been addressing my weight.  I had some success in losing weight in 2008, but for several months now, I can't really make more progress.  That's really frustrating to me, so I'm trying to take a step back and adjust my goals, and to be nicer to myself about it.

Take care.

[cindy903]

It is so nice to know that I'm not alone out there.

This disease is bad enough without being beaten up by doctors.

I suppose I should try and tell myself that the doctors who've been argumentative are just trying to help. But some have gotten downright rude. And the word "coping skills" and other things came up. I think he has a point sadly enough.

I am like you too. I question my diagnosis a lot. I had a positive Lyme test and I question its validity. I had it redone and it came back again w/ the exact same results. I still hope it's wrong. One doctor said that if I had "desiminated Lyme" it would be lit up all over the map. So it sort of gave me hope that maybe I'm really not that bad -- or maybe these are false positives.

Healing from this is slow going is all I know.

I hope your relapse is short lived and you're back to your old self soon. Have faith.

[patsy10]

You sound a lot like me.  I can tell you I know exactly what you are going through.  When this hit me again badly a few years ago I obsessed about it 24/7.  I sat and cried for months.  My coping was very poor.  I was very depressed.  Mostly because I question/questioned whether this is really what I have and what is it going to do to me.  The neuro stuff is horrifying.  I was sure it was MS and I still think of that sometimes.  The unacceptable way I was treated by the medical profession just added fuel to the fire.

I started having a more positive outlook  after I started feeling better and gradually I have learned how to cope with "this". I did  not talk to anyone professional about it.  But I sure wore out my sisters and my husband and some friends.  Sometimes it helps to talk to an unbiased professional.  I have a couple of friends who have this and they both see counselors for it.  They both told me the counselors agreed that they were coping appropriately considering the uncertain diagnosis and what they were going through.

I don't know what is right for you but if you need to talk you may want to see someone who is unbiased.  Then you can say what you want and not worry about being judged.

How I cope now.....especially since I am relapsing, well I try not to freak out when I feel numbness moving from place to place by the minute or hour.  I try to remind myself that this didn't kill me before so it probably won't this time.  I'm stressed inside but I have not started crying again.

I don't know if this helped or not but remember you can always talk to us here because we understand.