Pushing yourself...or not..

Oh yes, I've dealt with situations like that!

I had the same worry about going to a Lady GaGa concert with my daughter and going on a vacation trip. Other people look forward to these things while a person who is ill sees it as a terrible challenge with awful circumstances.

Personally, I vote for the "Do the fun and interesting thing and feel crappy the day after" option over the "Don't do anything that might make you feel worse" option. Often you don't end up feeling as bad as you think you will and most often, the inspiration you get from having these experiences carries you through the bad times and makes you want to work harder to get better.

You say you quit work and are looking after your 15 month old -- seems like you still have a job!! And you have a teenager. That is two very different flavors of parenting, more tiring than you realize.

I must admit, I do bow out of some things and blame it on the Lyme Disease. Haven't been to a bridal or baby shower in years, avoided some tiresome family get-togethers that involved more travel than pleasure, and I excuse myself from any event that involves vexatious people. Self preservation or just selfishness, I don't know, but it means I have the energy to do the really special things.

Celebrate that you have these wonderful kids and make the most of what you can do!

Everybody experiences the disease and the healing process differently. It is as simple as that.

It doesn't do any good to compare yourself to other people, with or without disease.

Well, saying that, sometimes it is good to see how someone else is coping with their challenges and rising above them, and see if you can do some of that. But it is no good beating yourself up!

Pain is experienced differently. One person's idea of a bit of fatigue is different from another person's bone-crushing fatigue. I know that even if I am feel absolutely awful, I can usually drag myself out to the barn to help one of my animals that needs me. This kind of variation has to be so confusing for the doctors.

Randompains, I so hope you can back to the things you love to do!

Shebalasvegas, I know exactly what you are going through.  I feel like I missed out on so much with my son.  I was sick from the time he was in first grade all the way through elementary school. 

It is hard to pick your battles.  I found myself trying to talk myself into things all the time.  I agree that it is important to do fun things.  Sometimes things such as going to the concert will bring you enough adrenal rush to get through it.  yes you will feel horrible the next day and I did many many times, but you will have wonderful memories of the concert.  It is important to pamper yourself after and not blame yourself for making the "wrong" decision.  You'll feel better in a few days and one concert will not set your healing back.  That being said, I did find that I had to cut out many many social functions.  They were just becoming to so stressful for me that I did feel they were hinding my healing. 

Caring for a 15 month old is hard hard work and also the most important.  Nap when she naps, cut corners when you can (such as cleaning the house).  This disease is a slow process towards healing but it does come. 

Have you read the earlier post where it talks about mindset and healing?  It is so so important not to blame yourself for feeling like crap but to learn to convince yourself you will get well as you pamper and crawl through the rough times. 

I hope today is a good day for you.  Love that little one.  My sons are now taller than me and such joys.  they truly got me through the roughest of days. 

Thanks everyone! I am so glad I found this forum as no one seems to understand this disease unless they have been through it! I get comments from people all the time regarding the chronic fatigue like, "Oh I hate being tired. That sucks." when they really have NO idea how much it sucks to have the fatigue that goes along with this disease that cannot even be compared to being just 'really tired'. I have gotten to the point that I don't stress about not being able to work (I had a very physical job as a pet/farm sitter working mainly with horses) and know some day I will be able to go back. I do however hate waking up in the morning because I have this bad attitude about knowing I will not feel well but this has been improving SLOWLY. My kids do help me through it but also exhaust me and I find myself wondering if I would be feeling better if I didn't have a little one to care for 24/7 and was able to relax and take it easy. I really don't know how anyone could work full time while having the symptoms of Lyme. I pushed through for 7 months while I was waiting for drs to figure out what was wrong with my and then just got so sick I found myself not being able to get out of bed one day!
I am seeing my LLMD today and hopefully she can suggest something in addition to the Doxy that will allow SOME improvements.
I'm going to that concert tomorrow and will have a great time! I also booked a hotel so I don't have to drive home late at night....just go to bed AND I'll even be able to sleep in!

I can relate to much of what you all are saying. We have an invisible disease in the eyes of others. I carry the health insurance for my family so am trying my hardest to keep working. Luckily my job is an office job - no physical stuff required. However people do not understand the fatigue and multiple symptoms that come with Lyme. Nor do I really want to elaborate on the symptoms. I do try "fake it till you make it" and most days can get through. But I still take a sick day when I have to ....People compliment me on the weight loss and complain about their weight and say they should follow my diet! yeah right like this is a choice! hah.

I have been on mepron and zithromax now for 5 months which has kept me pretty even. A few headaches here and there some shaky days and every present twitching in my body. I live for the weekends when I am not forced to rush around and can move at my own pace. We recently took a trip to see our kids and I was worried I would be sick in the hotel the whole time but without the stress from work, the house and not having to get up early caused me to have several good or "even" days where I felt pretty good. Days when I don't feel good I avoid people and conversation because it is difficult and I get agitated.

Considering where I was in the fall with loss of muscle strength in legs and arms (couldn't keep the brake compressed at a red light) I have come a long way, same with brain fog and seizure like episodes. Very slow progress but progress nonetheless. Wish like others that I could stay home and focus on getting well but we do what we can and what we have to.

Progress will come for all of us fighting this battle and yes you have top pick how you want to spend your limited energy. I gave up baby showers, wedding showers etc, peoples feelings get hurt because I don't look sick. I go out to dinner when I can and out with my husband to the movies etc ...those times I sometimes push myself because I say well I will be just sitting here or can sit there in the movies and at least my husband will enjoy it. So good for you to try and go to concert and create memories with your son. Good luck to you, progress will come...baby steps.

I hear you all. I am tired of being told to be patient and allow myself to rest. Pace yourself they say. I have to work! I too carry the insurance for my family. I'm tired of missing out on the fun that my family and friends are having. I'm tired of being tired and hurting. I want to be the one helping my kiddos with their homework and go on their school trips. I just want to go for a walk with my husband, so much so I've had dreams about being able to walk with him. Sometimes I wish I didn't have to be the responsible one, but that is just when I hurt and am in my self pity mode. I don't like being at that place, but more times than not, that is where I am at.