desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I am having one of those days..and need to express myself by writing it out.
I feel like I just cannot do this anymore. And I know most everyone has been there /done that..
I can get feeling better - even normal. Over the summer/early fall I was back in full swing. Running - like really running! Hiking, working, shopping, waking up feeling like a normal human being, and forgetting that I even had lyme. Was pretty much symptom free. Even wondered if I really ever had lyme (i.e. denial:))
Now today and for the past couple of months I am back to square one and the nerve pain in my head, scalp and face is sooo bad again. All my TBI symptoms are coming back again and I cannot get to my office to see my clients cuz I cannot even get out of bed. Scared I will have to close down my practice again...
Taking this med and that med to help with the pain, all the while feel like I am losing that connection to my deep core sense of self.
Hiking is my religion and I feel like I am dying without it...I feel dead inside today and do not know where to hang my hat of hope on anymore.
I cry to let some of this out but it just causes the nerve pain in my head and face to flare up like someone poured boiling water on me.
This is going on 10 years, 10 years of my life that I lost - my late 30's to now.
I have a hole in the back of my head - a literal hole from a neurosurgery that landed me deeper in lyme hell and it feels like the ketes are taking residence there.
Losing hope....Yes, I am back on my magic exlir of Doxy. Biaxin, Mepron and ART and I know in time I will get feeling better but that it will be just a tease because it never lasts...
I have the greatest LLMD but even he is not the Divine and cannot fix something that is not fixable.
So as you can see (if anyone is still reading this!)I am having one of those days...One of those days where I don't know how to hang on to a sense of hope that seems so fragile.
Thank you to anyone who took the time to listen. Namaste...DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I'm so sorry- hang in there- wish I had the perfect advice, but I don't, so thinking positive thoughts for you-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i woke up really depressed cuz i am pretty much in a wc and walker full time now---its been coming on for a few months---and i gave in and realized i needed help and i hired ppl but i am so embarrassed and ashamed about how messy the house has gotten and i know it is hard for me to express myself to these helpers...i get so exhausted with the interactions and explaingin why i need what i need
anyway..to day a made a list of a few things i wanted to do...little things...consolidate dog toys...find totes for helper to use
i put my timer on for 1 hr (i am so slow in the wc) and i worked for 1 hr and then rested for 1 hr
in the past-when i was walking i have used this---but have to set it or 10 or 15 min up and half hour down...
it just helps me to see i have done a little something by the end of the day
some days i just make a list and it feels so good to cross 1 thing off..even if there are 10 on the list
other times...i just lie around and hate my life...but i usually can think of something worse - and try to happy about what i have that is ok...now that i have sleep meds that work i get all happy about staying asleep more than 3 hrs
this disease sucks. and them not finding a cure yet sucks. i hope you can figure out what you need to do to be a little happier
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PLEASE, PLEASE check out the current "PARASITE WARRIOR SUPPORT THREAD" Many folks here that have been chronically ill started to treat for parasites/worms and are "seeing" results.
It is now considered the number 1 co-infection of Lyme by ILADS. This infection has gone unrecognized even by the best LLMDs. Google parasite symptoms.
What feels like ketes taking residence in the back of your head could very well be parasites. Don't ignore this because it could be the missing link toward your road to recovery.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
desertwind, you are right in the fact that all of us have had days like yours.
It always seems like we are the only ones that have days like that because is it so horrid.
I have found the only thing that has helped me is because of these previous bad days I know I will
more than likely make it through the next bad days.
I have also developed some coping skills and not ashamed to use ativan and tramadol when the anxiety and pain kick in.
I also have found that this combo allows me to sleep through a part of the bad days.
I now do anything that will help me get through the day.
Diversion has been the most helpful. Find something to do to take your mind off just how awful this disease really is.
I call friends, do research, watch TV, but sometimes I am too sick to do that.
l know that the bad part will be over at some point.
I agree with other posters, if you have not done the parasite protocol yet, DO IT now.
I think that has helped me more than anything.
I just got a stool test back that says I still have parasites and yeast infection.
I have started back up on parasite meds and still on Nystatin.
This is not a fun disease and sadly there are many of us here to help share the misery it creates.
A doctor once told me to find joy or beauty in every day.
That is something I have adopted, though very hard at first.
It has made a difference in my life.. You could try that and see if it helps you.
Take care and hope things get better soon.
Posts: 620 | From Ks | Registered: Oct 2011
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-22-2013, 02:59 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I proclaim to be an ant:) .
My computer was down all weekend so I did not get a chance to check and respond to this posting.
A heartfelt "thank you"...I really want to take time to read and digest all that you said and write a proper reply.
Words of encouragement make all the difference in the world - I am very thankful to have this sense of community.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I sent you a post and for some reason it didn't go through.. Won't re-write but will say I hear you.. Oh, how I can relate. Have no answers been this way 15 plus yrs. Hoping that good day will hit us soon..the only thing I know mine won't last.. hugs
Posts: 1058 | From VA | Registered: Oct 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Hey phyl6648 - Thanks for the attempted PM....that is such a hard thing of knowing that feeling good is only a tease.
The encouragement that is recieved here is so priceless.
I typically have good coping skills but the day I wrote that post I had enought of trying to cope and make it through...I want more then that.
I get tired of re-negotiating my terms with life with each set back or herx or god knows what. I think we all have that day every once in a while where you need to just let it out and be real. Guess that was me being real.
I am back on my feet again and trying not to hold my breath in aniciapation of when I will crash again. Geez..in the summer I was off abx.s for close to 5 months and doing great. I use that as a place of hope in that feeling good can happen again - for all of us.
I am going to take the advice on here and start on a long term parasite cleanse and try to add a few new things to the mix.
Thanks for helping me feel better...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
"I can get feeling better - even normal. Over the summer/early fall I was back in full swing. Running - like really running! Hiking, working, shopping, waking up feeling like a normal human being, and forgetting that I even had lyme. Was pretty much symptom free. Even wondered if I really ever had lyme (i.e. denial:))"
Sounds like you had a pretty good run of feeling amazing - if your body could do it for such an extended period of time tell yourself it can do it again.. maybe next time your 'ups' will stay up for longer! best!
Posts: 394 | From Southeast | Registered: Oct 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Thanks tailfeathers (great screen name BTW).
I certainly am working towards that end and trying some new things. I think learning how to be comfortable with uncertainty is a big learning piece for me...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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