posted
Hi everyone. I am just really struggling at the moment with feelings of hopelessness regarding my health.
I am just so frustrated that I remain so ill even after so much treatment. I am following the nutritionist's meal plan and I have an appt for a new llmd in a little over a month, but I am just baffled and frankly disgusted that I am not even remotely better after all this time and treatment.
I ordered some colloidal silver at the suggestion of one of my very dearest friends, but I keep feeling like nothing that I do will work because nothing has so far, and I have tried a ton of meds and various treatments.
My moods are like a roller coaster. I am able to always outwardly appear sanguine and calm when I am around others, but the second that I have any alone time I am sobbing and shaking and panicking . I am so tired of being like this. I feel like I am just this fount of negativity on the forum right now, but I think I have finally reached the limits of my endurance with this.
How in the hell do you keep up hope when nothing you try works? How do you muster up the emotional energy and strength to keep going when the odds seem impossibly stacked against you?
UGH. Sorry to rant and vent. I know that so many people in the world have it so much worse than I do, but I am sicker than hell and sad and frustrated and I never talk to anyone about this with the exception of a beloved friend who also has this illness.
Anyway, thanks for letting me vent. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You just met with the nutritionist a few days ago, right? You have not seen the new LLMD yet,so I'm not sure how you can expect to see results yet..try to focus on the fact that you will now be on a path to health with two new professionals instead of your old LLMD which quite honestly seemed to do more harm than good...
Posts: 1748 | From United States | Registered: Dec 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I hope your new LLMD is the best of the best.
You have to find something to live for and latch onto that for dear life.
For me, it's my kids. They need me. So, I keep fighting to try to get better so that they will have a healthy mom.
I think about how it would scar them for the rest of their life to lose me...so I fight and fight some more...even when my spirit is weak and just wants to give up.
For you, I'm sure it's your husband and father.
I gave up the front a long time ago. Those who care about me, need to know my reality. It takes to much energy to pretend to be ok when you're not.
posted
My first thought upon reading this is it may be too early for you to judge results - you've just started with a nutritionalist and as noted already here, you haven't seen the LLMD yet.
And, just because things haven't worked in the past does not mean that there isn't a program that's going to work for you in the future.
What I've seen of Lyme/co patients struggling to get better is that finally people find something that works for them. I've seen a lot of people who were very ill get better.
My suggestion is, instead of spinning your thoughts in worrying, to see if you can find something to focus on that you enjoy. If you know what you enjoy, could you start focusing on that more?
I don't know whether that will mean a more passive style, like listening to music, or watching fun TV programs or good movies,
or if you are able to do something more active, as in being able to make something, etc, I suggest you explore that possibility too.
I've seen in the past that when I was very immersed in what I enjoyed, my pain level went down. I think that was due to my creating endorphins inside, so that even my physical suffering lessened when I switched my consciousness.
Of course, that doesn't substitute for successful treatment, but it makes our lived time more bearable.
Posts: 13116 | From San Francisco | Registered: May 2006
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Jess, hang in. I would do exactly what the nutrionist is telling you to do and nothing more. no extra supplements, no c-silver. just work on nutriton until you see your NEW LLMD. Otherwise you won't know what's working and if you have problems, you will know it is the nutrition and not something else.
Take some time to do things you used to like to do. use this waiting time for you. read a good book, do some yoga if you can. get a pedicure.
it's only been a few days... it's gonna take a while to get healthy again from a nutrition standpoint, and then you and your new llmd can look at killing bugs.
Jess, can you refresh my memory? How were you dx'd with Lyme? do you have a definitive dx? Did you treat, then get c-diff, then stop? or did you never actually treat? I am just wondering if there is something else going on besides lyme and co?
Hang in there. there is no end to how miserable a chronic illness can be. For now, for this month, just focus on nutrition. I suspect that alone will start you feeling like you again. one step at a time. and it all takes a lot of time.
Posts: 1728 | From USA | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How about not trying to stay positive? Just be.
Do what you need to do to take care of yourself. Focus on commitment, regardless of feelings or thoughts. Deep inside, I bet some positive vibes will keep you going but you just may not have the "soundtrack" as in an epic movie. It's a quiet thing.
Enjoy what you can along the way, even just appreciate beauty. Even when we may not be able to enjoy much, just the action of appreciating beauty whereever we can find it will help us flourish.
Sometimes, trying to feel or stay positive is just too much of a task, like trying to be happy. Happiness is a process. I've never known anyone who got there by trying. It's by doing, just being.
And that does not mean negative thoughts or feelings need to be banished. Honor them, too, for they are really what help us stay committed. Apprecication of irony can be very helpful here. And humor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you everyone so much for the thoughtful responses.
Kudzu, yes I tested highly positive for lyme and for many coinfections as well. I was treating, got a near fatal case of c diff, then resumed treatment.
I do not know if something is going on other than the lyme and co's...my last LLMD seemed to think the lyme and co's triggered some kind of unknown autoimmune process.
Thanks again so much for the kind words. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
You can do it, you can do it, you can do it! You are not dead and you HAVE hope. All of us on this board will be your cheerleaders. I am in the depths of despair as well. Lets continue to lift one another up. I'll be praying for you.
Posts: 415 | From USA | Registered: Jun 2012
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Some days it's day by day, some days it's minute by minute. Only those that have this understand that phrase.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Thank you everyone. Jess
Posts: 870 | From ct | Registered: Nov 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i keep up hope by thinking of those worse off than me. those who fought and died of cancer. those who lost children. one close friend lost 3 of her 5 kids one afternoon in a car accident cuz of fog. i cant imagine.
another was dx with terminal lymphoma in her teens. but the therapy worked-but it left her extremely disabled. that woman runs circles around me. she is so happy to be alive.
i have found you dont have to look far to find someone worse off than you.
thats how i get off my pitty pot
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I agree about focusing on your new path. You have a nutritionist now and you will see a new Lyme doctor soon.
I hope you will seeing a good doctor who is highly recommended by Lyme patients. I sent you a private message some time ago but I don't know if you got it.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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