I haven't been to this site in a while. I've been busy trying to piece my life back together after Lymes pretty much tore it apart.
Backgroung:
I was diagnosed in May 09 after being sick for almost 2 years before hand. Three regular doctors and infectious disease doc ( he was a complete joke!)later
I finally found a nurse who realized what I had ordered the test and proved to EVERYONE I wasn't losing my marbles.
I suffered migraines, fatigue, dizzy spells, limbs going numb and severe memory loss to name a few. At one point I was unable to walk.
She found an infectious disease doctor that was not only compatent but also fought with my insurance co. to get my IV treatment.
Now fast forward to the presant I am starting to feel like myself again. I have read people talking about what it's like to be sick but what happens once your on the road to recovery.
When I was sick many people who should have been there for me weren't. Now that I am better I find myself spending more and more time alone.
I try not to hold a grudge against the people that treated me poorly but now that I am functioning I dont want anything to do with people it seems.
I have focused my energy on reestablishing my goals and setting everything to right.
But what do you do once you are on the road to recovery. Every twinge that I have, everytime I feel tired. I wonder, Is this normal? Am I getting sick again?
I realized that though I am trying to move forward I am afraid to commit to anything because I have been supposedly cured before only to get even sicker a few months later.
Sorry this turned into a novel but I was wondering has anyone else delt with this?!
Posted by BHealthyNow (Member # 22537) on :
Glad to hear you're on the road to recovery.
Posted by BoxerMom (Member # 25251) on :
I sure understand the isolation part. We all do.
I think many will chime in regarding remission and relapse.
Please don't live your life in fear. If you relapse, you can resume treatment. Don't let that stop you from pursuing your goals.
Posted by jlp38 (Member # 27221) on :
I'm still sick, so no, I'm not going through what you are. I have thought about those things though. And I know when I start getting better, I will have the same concerns as you. Glad you are feeling better.
Posted by Lymetoo (Member # 743) on :
Just keep moving onward and upward!! Don't look back!! Posted by sutherngrl (Member # 16270) on :
I know what you mean. I am at a place where I am starting to feel a little better. It feels like a "transitional" period and it is a confusing time for me.
I feel well enough to finally do more normal things, but not well enough to be considered cured or in remission.
This may sound crazy, but I feel like I don't know how to be a well person anymore. It seems like a foreign place to me.
And I totally get the lonely part. There is an isolation that naturally takes place when a person is ill for a long time. Now that I feel somewhat better it sort of feels like........"what do I do with myself now"???
Like what lymetoo said......just keep moving forward, slowly but surely.
Posted by sixgoofykids (Member # 11141) on :
I have been well now for one year and four months (who's counting?!). I STILL ask my husband, "Is this normal" For example, is it normal to be tired after teaching pilates for 3 hours, then working out, then showering, going to the mall for 7 hours Christmas shopping, and eating dinner out?
Honestly, I haven't known what is normal and what is not and I have to ask him stuff like this. I am finally getting more secure about things. It takes time. We want to be on top of it if symptoms do return, so we're constantly wondering if the slightest fatigue is a symptom.
It's normal.
Posted by deerose (Member # 27484) on :
This thread really helps as I am improving too. I identify with the fear of not wanting to commit.
I have been through a long period of not feeling like I will know how to be as a normal person.
I am afraid not to be hypervigilant. that sort of thing. And also you betcha it has felt lonely.
But I can tell now mostly tell the difference between the ball and chain fatigue that was there crushing me by
mid afternoon and the tired from not quite enough sleep.
So despite my worries there is already evidence that it sorts out as you keep going and paying attention.
Learning to trust the ice isn't going to break under you. Little by little.
I definitely get the pain and hurt of lyme ignorance and being let down by people who are supposed to help at the worst possible times it seemed.
but I have had hurtful things from other parts of life with people and nothing to do with lyme.
Developing the capacity to recover trust within healthy boundaries and sort out toxic people
and not become or remain cyncial and bitter
and forgiving is a life thing not a lyme thing even if lyme was the introduction.
it is as much of or health and wholeness as anything.
forgiving is not saying nothing happened and excusing something like it doesn't matter...
not at all...it is acknowledging that something did happen or there is no need to forgive. and it for sure a process.
I just read Miss Margo or someone like that who said... forgiveness can't fix the past but it can enlarge your future.
From long experience I see that it does not weigh in on their guilt or not but on that you were hurt or harmed or offended and you need to be free to move on in life.
It takes healing too. so many have been harmed one way or another by lyme ignorance and lack of compasion that the
resiliency to grow in these aspects of life seems to come often with the territory though not inevitably...some folks are surrounded by authentic support.
and we get to do it while we are already challeged physically and often mentally and sometimes finacially...on so many fronts.
But it is a part of recovery for living as much as all the meds, supplements, diets and all that we do for lyme.
and inch by inch...it happens if we set our heart compass in that direction.
all the best...
Posted by Lymegirl82 (Member # 21864) on :
Thanks to everyone for your support. I honestly dont know what I would do without being able to speak to people who understand.
sutherngrl and sixgoffykids I feel exactly the same way. I ask myself all the time, "What now?" and "Is this Normal?"
deerose: Thanks for your response. I do need to learn to forgive those people and move on. I am trying because I do realize that it make me bitter inside.
I take it one day at a time and continue to work on letting it all go so that like everyone said I can move forward with my life.
Thanks again everybody for taking the time to talk!
![[Smile]](smile.gif)