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One good day doesn't mean your cured!

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Lyme Disease
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Posted 2/3/2014 2:15 AM (GMT -5)
Once in a while I'll have a good day and everyone gets so excited. It's great when I have a great day but it NEVER lasts. My parents like to make plans for my future when I am having a good day and that makes me hopeful. Then sadness kicks in because reality reminds me that I haven't had a full week where I was not in extreme pain for 20yrs. How can I make any kind of commitment with that track record? I have lowered my expectations for just about everything. I need some friends who understand.

Lyme for 20yrs, former meth addict sober 9yrs, Anxiety/Depression,Chronic Fatigue, Insulin resistance, Fibromyalgia, underactive thyroid, Migraines
Posted 2/3/2014 3:14 AM (GMT -5)
I know what you mean.

I'm waiting in starting blocks to start a new energetic life.

Yesterday I had a descent day, only a headache and painful feet (today is worse again) - first time since the 3 descent days I had last July.

I try not to think too much about the future. I go day by day. Whenever I start planning the future, I become so frustrated and feel very lost.

I think this is an important switch that we have to make, living day by day. It difficult, but it'll save you a lot of frustrations.

I think that your parents do this with the best intentions, they too want to see you better. It's good though to stay positive and think about the future, but in moderation, to avoid setbacks.

Are you undergoing some kind of treatment? Seeing a LLMD?

MarieLD

Posted 2/3/2014 7:30 AM (GMT -5)
I hear you. We have to live in the moment and take life day by day. This has been hard for me - I used to love to plan!

More good days are on their way!
Posted 2/3/2014 8:28 PM (GMT -5)
To be completely honest, I still have trouble making plans - and when they are made, it makes me nervous. Having been ill most all of one's life does that - but the good news is that one day that will change!!

And congrats, Moxie, on being sober for 9 years - quite the accomplishment!
Posted 2/3/2014 8:37 PM (GMT -5)
I am really honest with people and explain that if I am up to it, I will be there. If I can't make it I will let ya know. That's the best I can do right now and the folks in my world seem to get it. I am with Traveler, plans set in stone make me nervous and I am afraid I will let someone down. I just try to make it clear what my limits are at the get go. Congrats on your sobriety, Moxie. I have two years and change and it has been such a blessing. I can't imagine dealing with this disease if I was still abusing my body the way I did.
Posted 2/3/2014 9:31 PM (GMT -5)
Thanks for the support, especially about my addiction.
Posted 2/3/2014 10:01 PM (GMT -5)
I can relate. For me, it feels sad at times and frustrating at others.  And yes, sometimes it feels both.  The wonderful therapist who I work with helps me keep perspective around the word "AND" .... yes, this is how it is AND there is hope for things to change.  To live as best we can (whatever that means to each of us at any given time) is the best we can truly do. I am becoming much more aware of the reality of what "chronic" means and it's not something I ever felt I would need to accept.  I'm working walking in both worlds ... accepting the chronic-ness of this for me and also staying hopeful and asking myself "what can I do right now; what am I grateful for; what do I hope for"  

As we all know, it isn't easy (or "fair" -the older I get the more I realize nothing is ever fair) yet it is reality.

Hang in there.  You're not alone.

Posted 2/3/2014 10:12 PM (GMT -5)
I love that post, kathleenta! Gratitude plays a HUGE part in my healing. Some days the list is pretty basic...grateful I woke up, that I am safe and warm, that my dog loves me. Other days I can see the bigger picture and add to the list. It just reminds me that in spite of it all, there are blessings to be found. :)
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