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Posted 4/17/2017 8:36 AM (GMT -5)
I've just had a really bad couple of weeks. I was doing really well. Finally made it to the full dose of abx #1 and feeling darn near normal. As soon as I think I'm finally getting better and the worst is over, this disease laughs at me and says, "I do't think so." All the sudden, BAM, I'm back in bed crying, all the symptoms are back, and I have another flair.

I'm so tired of this. I do not want this to be my new normal. I'm tired of missing out on everything. My daughter has Girl Scout Camp, and I do't see how I'll be able to go. She seems OK with it, but I know she's a little disappointed. I hate that she's going to be one of the only girls whose mom isn't there.

IV treatments help, but at $270 each x 2 a week, that's a lot. I feel like we're hemorrhaging money and that just stresses me out and makes me feel worse.

I got a card from work Saturday. (I am a teacher, but had to resign from the rest of the school year in October). It was bittersweet. It was heartwarming, but it also just made me sad because I love my job and miss it so much. And now it's looking more and more like I won't be back next year.

I'm just so tired of this.
Posted 4/17/2017 9:26 AM (GMT -5)
Oh MM! I'm so very sorry! I know just what you mean about being so very tired of all of it!!

We have to keep moving forward though, even though we do end up taking steps backwards at times, each time we have improvements, we should be hanging on to at least a few of them.

Keep reminding yourself that, even though it feels like it's taking forever, this is only temporary.

I always used to feel really bad about my kids missing out on things because I was too sick to get them there, or to attend with them - but my kids are all grown up now (still not sure how that happened!!) and they have told me (after my apologizing to them for their childhood with a sick mother) that they don't feel like they really missed that much. They believe they had a good life, learned compassion and empathy - not just for me, but for others as well. They see chronically ill people like we see each other here - just regular people that got sick and would rather not be. No judgement from them, just compassion. So, there may be a silver lining in this for those kids that grow up with a sick parent.

Hang in there!!
Posted 4/17/2017 9:33 AM (GMT -5)
Your talking to the right group. We understand. Some of us are right where you are, some of us haven't had a good day in months maybe even years, and some of us are in remission.

We just, have to gently pushing forwarded at the level our body will allow​ us.

As Traveler said, this is only temporary. Keep the faith!
Posted 4/17/2017 10:36 AM (GMT -5)
The ups and no symptom days I was euphoric and felt like I could take on anything. The downs and many symptoms were so depressing.

That is why you hear lyme patients say, "it's a bad day" or "it's a good day." This is normal. Lyme is nothing but ups and downs. I actually called it the most bipolar disease I can think of.

Why do we get those glimmers of hope, just to be squashed down? I think that was the hardest for me to cope with.

I learned, the hard way, that on those good or up days to not overdo. It made the down days so much more harder to handle.

Being able to come here and have others validate my symptoms was like a load was taken off my shoulders.
Posted 4/17/2017 10:40 AM (GMT -5)
This was a good thread for me to read. The rollercoaster is hard, and I find it especially difficult on the days where I'm back and forth during the day between hurting and feeling better.
Posted 4/17/2017 10:53 AM (GMT -5)
Thanks, guys. I managed to drag myself around to Easter activities this wewekend, but it was obvious that I was not feeling it.

Last night, I hugged my 12 year old daughter, said Happy Easter, and told her I loved her. Holding back tears, I added, I'm sorry that I'm sick. She hugged me really tight (a rarity with 12-year old girls), and in a most sincere voice said, "It's OK, Mom. It's not your fault."

I so needed to hear that. I still feel horrible about the impact my illness has had on them, but to know that she really does understand and not blame me makes a world of difference.
Posted 4/17/2017 12:06 PM (GMT -5)
Mm57553 - You have a sweet daughter - you two have a strong bond - Lyme won't take that away.

Tears flowing here.
Posted 4/17/2017 1:43 PM (GMT -5)
mm57553 that is very sweet.
Posted 4/17/2017 5:49 PM (GMT -5)
MM, I'm so sorry for your pain and sadness. I completely relate. I've been very sick for almost 1.5 years and I feel like my little 3 yr old has no idea what a fun mom is like. My teenage kids are having to pick up the slack,which I hate, but at least they know that this disease is not who I truly am. My 3 yr old doesn't remember life before I was ill. He doesn't remember that I took him to the park almost everyday, and played in the yard, and climbed around on the floor laughing and playing with him. All he knows is that I'm tired and sick. It breaks my heart. But, I know I will be healed from this, and I know He will be a stronger person because of this too. It's a long, insurmountable, stressful journey we are on. We have to laugh when we can, smile when we can, and know that we WILL be healthy someday. I get so sick of living for someday, but it's all I have. You're not alone. We're with you.
Posted 4/17/2017 7:12 PM (GMT -5)
MM I'm so sorry. I know exactly how you feel. It can be very depressing. I justkeep telling myself that one day, it will be one good day right after the next. That helps to keep my sanity.

But it is a bummer when you can't or feel like doing something especially with the kids. I was just looking at an ad for Hersheypark the other day and saying to myself, "Can't do that this year, again."
We used to do the park with a lot family and it was so much fun.

I do feel like a car sometimes, "parked."
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