On Doxy since July 2007. Zithromax Feb. 2008 and Mepron.
Last week we found out my CD57 went up from 57 last July to 96 this April. My family and I were all very happy.
So, I thought I had the energy so we got lunch out. We fed some ducks. We visited my aunt.
That was Friday. And since them I feel like I'm going to die. How could taking advantage of the first good day I've had in years do this to me? I couldn't go downstairs. I could hardly make it to the bathroom. My POTS was awful and is only slowly going back to the usual crapppiness level it is.
Someone tell me it'll get better. That it's possible to have a few good days in a row. That I won't always have to stay in bed a week after doing a couple things that required nothing more than walking around.
I was so optimistic but for the first time in months I want to crash and crumble into crying. And does this mean my CD57 is down or is it just the POTS?
Thank you!
Posted by Geneal (Member # 10375) on :
It is a horrible disease.
I have POTs too and lately, I guess due to warmer temps, have had an increase in symptoms.
It will get better.
Problem is when we do feel well, we feel like we can do everything we used to.
We overdo. Then pay dearly for it for days.
In the beginning I cherished each good hour, then part of days,
Then a whole day! Eventually you will get two days together then more.
Unfortunately it is the nature of this nasty beast to not anticipate
How you will feel hour to hour, day to day or week to week.
Don't give up hope. You are not alone.
It will get better.
I am not greedy. I take whatever I can.
I was able to jump on the trampoline with my children yesterday (5 min)
For the first time in months. Probably not today though.
I am so grateful that I was able to yesterday.
That will have to sustain me till the next "golden" moment.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
Don't use the CD57 to see how you're doing. It's not a very good gauge for that.
Go by how you're actually FEELING....and always do less than what you think you can do until you begin to get a feel for what your body is REALLY able to handle.
Hope that made sense!! Take it easy! This recovery thing is a slow process, but you will make it!
Posted by kam (Member # 3410) on :
I have been battling this for quite some time now.
I still have trouble pacing myself but am kind of getting into a routine now.
The most difficult times for me are when I have a good day and then am down for several days afterwards.
The crash is not as difficult as it use to be for me, but it is still a tough time of it.
It will get better.
I have slowly seen improvement over the years.
I have gone to being bedridden to being able to be out two to three times during the day either in my power chair or for a short walk in the forest.
It is a very tricky condition to live with.
Posted by kpa (Member # 12079) on :
It does get better.
My daughter is being treated for the POTS and it has been pivotal in getting her life back.
You can PM me if you would like a dr. recommendation.
Best wishes, kpa
Posted by AZURE WISH (Member # 804) on :
It will get better.
Trying not to overdo it on better days is a problem. and one i often pay for.
Learning how to gauge how much is too much when it seems like the line i am not supposed to cross is always moving is challenging.
It takes time and pateince but it will get better. Hang in there. Posted by maidodie (Member # 14455) on :
quote:Originally posted by Geneal: It is a horrible disease.
I have POTs too and lately, I guess due to warmer temps, have had an increase in symptoms.
It will get better.
Problem is when we do feel well, we feel like we can do everything we used to.
We overdo. Then pay dearly for it for days.
In the beginning I cherished each good hour, then part of days,
Then a whole day! Eventually you will get two days together then more.
Unfortunately it is the nature of this nasty beast to not anticipate
How you will feel hour to hour, day to day or week to week.
Don't give up hope. You are not alone.
It will get better.
I am not greedy. I take whatever I can.
I was able to jump on the trampoline with my children yesterday (5 min)
For the first time in months. Probably not today though.
I am so grateful that I was able to yesterday.
That will have to sustain me till the next "golden" moment.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Thank you!
Yes, I've been learning to treasure moments. I often say "Thank you, Thank you" inside my head to whoever is answering my prayers when I'm able to do something I once took for granted.
My main fear is that I'll always be sick. And I do not at all expect to ever be like I was, but I have a hope that maybe one day I can have a part-time job.
Do people improve that much? Or do we all just kinda shamble about our homes the rest of our lives?
Posted by Cobweb (Member # 10053) on :
My LLMD no longer uses CD57 as a barometer of health for her Lyme Patients. Patients with high readings feel like crap and patients with low readings feel like great.
So don't obsses on the CD57.
As for getting discouraged after a downfall-I sure can relate to that. Half the time I think it was the antibiotics that were so harsh-
but I stuck it out with treatment-and it did get better!!!! Tadaaaa.
So read Success Stories in this forum when you need a lift.
or do just what you did-let it all out! Posted by silvermoon (Member # 15072) on :
What is POTS??
Posted by WildCondor (Member # 434) on :
Postural orthostatic tachycardia syndrome
Yes, you can get better, and yes it does get better.
![[group hug]](graemlins/grouphug.gif)
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Eventually you will get two days together then more.![[Razz]](tongue.gif)