minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
I've been steadily recovering my physical stamina and I'm pretty pleased with my progress. I'm constantly tired, but I can do a LOT more and I'm no longer (or at least, not frequently) flattened when I do overdo things.
But thinking creatively and concentrating for sustained periods still wears me out tremendously -- far more than the equivalent period of physical labor like walking or doing yoga. I've been trying to do some freelance writing projects, but I find myself utterly unable to work for more than an hour or two a day. I used to do this for 8-10 hours a day in my working days.
It's sooooooo frustrating to be so very much better, and yet so far from being able to live normally.
I'm doing a lot of brain detoxing and am trying some new neuro treatments (including Buhner's neuro protocol). My insomnia is not as bad as it was, but it's still a problem. Along with the thought fatigue I notice a certain, ahem, unpleasantness in my moods and lack of humor.
I wondered if others were having this brain exhaustion problem despite significant physical recovery, and what they were doing about it.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
yes yes yes yes yes, yessirree! That is me all over the place!
I had bad encephalopathy. At the worst, it was all I could do to figure out how to load the dishwasher, if I even had the oomph to even notice and get up, and it was exhausting to figure out the order....I think I used to have one!
Every simple motion took thought and planning, like I was having to direct myself for each step. And I could have no interruptions at all. And I would have to buzz out afterwards, just to avoid the exhaustion/pain of so much thinking.
But as I improved, new challenges arose: income taxes, medical bill year end reconciliations, coherent letters to legislators, packing/planning for small trips.
And I figured I would just dive in, and figure it out later since I could not figure out what to do first. As if all actions were a rough draft, and could be honed later.
I can do all those things now, but something is still sluggish with the pre-forming stage. So, I just start "somewhere", and something takes over automatically, and a project will get completed. And I get to where I need to be ultimately.
After 2 years, I have just experienced another small healing spurt in thinking. Sometimes I wonder if it is not a process of re-training the brain. Practice practice practice!
Also, I think I learned to process on a different level because old ways were not available during the worst times.
I have not taken anything specifically, just the regular vitamins, omega's, antioxidants.
I think candida protocols have helped a little, but at its worse, they did not make a dent.
Yoga Tea makes a "Think O2" tea, which has helped when I used it.
Vinpocetene was tried once, but my brain felt like it was popping out of my skull. After that, I was afraid of neurotransmittors. There are herbs/supplelments for brain action, but I am leary because of brain sensitivity.
I had tried glandulars for a while, but I do not recall any great strides at that time.
KMT23 brain program gives me a sparkley brain for 36 hours.
Reiki helps alot.
I felt like I was out of my body the whole time. I came back in with the senses (registering visual, hearing, etc), then a little brain, then I came back into my feet (motions did not require thought), and then my personality returned (in a new form incorporating life lessons from this illness), and now the brain is improving again. And hands and feet now move without consideration, i.e. automatically.
Basically, time and use seems to be the trick. Do what you can for now. Just start somewhere.
Just keep plugging away. For me, I figure I will continue to improve over time. And actually, I think I will be better than before because I have learned about my strength in going through this, and also, I feel a certain naivite (sp?) has been lost. Perhaps that is good.
I also am considering the possibility that part of this may be a post traumatic stress problem, and I may need to see someone. I am missing my "zest" of living which is a motivator and sustainer. I have Bach Remedy "Wild Rose" (supposed to help with the "zest" department, but I keep forgetting).
I am better in the a.m., than in p.m. If you notice a schedule like that, try to take advantage of it.
This is one of my big problems now, so I will be interested in seeing what other's experiences will be.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
I also am considering the possibility that part of this may be a post traumatic stress problem, and I may need to see someone. I am missing my "zest" of living which is a motivator and sustainer.
Yes, exactly, and very well said. I noticed this when I got my zest back for a whole day, and it was wonderful. Then it went away, all very random....
I've sent off for the maca powder and raw coco, to try the chocolate drink recipe Marnie posted. Will report how that goes (I won't do the vincopoetin/ huperazine at the same time).
Counselling has never helped me much with this stuff, but there are some somatic bodywork techniques and energy-based processes like Network Chiropractic (an energy-based approach to whole-body healing, as far as I can tell) that are targeted at issues like this. If I find the funds, I'd like to try it -- a good Lymie friend of mine is finding the Network stuff very helpful.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
What you are talking about is ME as well. It is so good to hear that I am not alone with this.
I sometimes feel like a fraud because physically I am walking lots, doing things I did not think I would ever do again, yet I know this is all I can do or want to push myself to do. The effort to do more is just too much to contemplate.
And most times I feel like I am with people but am not part of the conversation. Like I am there but not there. And I don't even care any more that I am this way.
I struggle constantly with brain stamina, mixing words, certainly cannot sustain any long work or conversations that demands concentration. I once lived a full, very active and creative life. I lost my creativity. It is gone and I don't know where it went or if I will ever get it back.
And yes, I know what you mean about the zest. I feel like I am plodding along. As long as I limit my life to manageable tasks, I can do well. Many people who see me walking, doing yoga, etc have no idea....typically the "but you look so good!" comments.
But I cannot work any more, I live a simple life and I can't even get the old attack mode to solve problems, barrel through life, laugh out loud, be the doer, the go getter, the sparkle one. That is gone. What is worse, I am beginning not to care that it is gone. I feel I lost my personality.
But I am so thankful that I am as far along as I am. Still doing some antibitics, take a long break, do some more again. I think this is what my rx will be forever. I can do this.
I take minimal extra stuff...just probiotics, tumeric or aspirin, multi vitamin, and try to eat well, keep away from the jelly beans! I crash mid-day and have to take a nap, and I also am much more alert in the morning. Sleep like a log at night.
I am grateful for where I am.
Minoucat, you were one of the first people I wrote to for advice, over 2 years ago, and it was so nice to see your name again. Glad you are doing well...
Boy, this post made me feel connected again. I am on lymenet daily but just can't get it up to comment. Feel I have not much to add that others can't say better. But this post got me!
I will be curious to hear if others are in a similar place.
Posts: 190 | From BC Canada | Registered: Jul 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Hey Mino!
I am replying because it's your post. I am not sure I have anything intelligent to say, but hey I can try.
I have not ever been one for thinking creatively so I don't think I would notice the creative part. I do know that if something requires a lot of thought I usually just drop it. It is very hard work and has to be pretty important for me to really stay with a line of thought. I often get lost where I used to be very sure of where I was going cognitively.
If I do get from thought a to thought b, it takes longer and by the time I arrive at thought c I have forgotten a.
I think this makes me pretty boring to "normal" people who are just whizzing around me with their very clear brains.
I am not sure why we have this but I suspect it has to do with brain inflammation. This is just a really big guess ........ so don't any newbies go quoting this to your doc. It is just what it feels like to me.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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bettyg
Unregistered
posted
Me too! Putting together my IOWA state senators/reps and extracting out their first & last name before each email was such a pain, plus putting , space after each and a delete so 2 lines would combine if enough room in that line.
I was good at this before; I really struggle now plus the non-stop FATIGUE. When I get done here, I takea 1-4 hr. nape! Best wishes to us all.
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Wow, guys, dunno why it helps so much to hear others are in the same spot, but it does. Hi Islandgirl, I remember you! How goes it?
robi, just because you're down-to-earth doesn't mean you're not creative, silly person! Creativity just means having the abililty to think through things on your own brainpower, without relying on cliches, stereotypes, platitudes, and other people's prepackaged thoughtlets. Thanks for the reminder about the Kane protocol. I got her detoxx book but put it away somewhere and forgot to read it.
OK, one other thing. I cry at the drop of a hat. I'm so used to it I ignore it like I used to ignore my headaches, but it's not right and I find it worrying. also it's one of the reasons I don't like being around people -- I never know when I'm going to tear up.
Bugger.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Hi all... That crying thing. I do this as well and think it is because I'm concentrating very hard to answer questions.
Example: when I am at my GPs office: to try to explain how I am doing, or what I am feeling, I cry nonstop. They call it emotional lability. I believe it is because there is so much to remember, so much to say, and I cannot organize my thoughts quickly enough. I am NOT hurting, I actually want to tell him I am much better, but I can't express myself as I used to. I don't even know I am frustrated, but my brain does. It misses my former quick wit and thinking and is weeping.
When I try to explain to my friend what I need or feel (not lyme related)....out comes a horrible rage because he just doesn't get it. Wow, I feel like I am standing beside myself, listening to her frustration. But I can't stop it, and I am an observer. Weird.
Time for me to practice new skills!
Don't know if any of you have had MRIs. I have 40 lesions on my brain. Originally they thought MS, strokes, lupus, any number of things. All were negative but IGENIX test was highly positive, and CDC criteria for lyme. (Altho I don't have lyme, according to all the ducks here!)
A neuro-psych test showed horrible deficits in my cognitive thinking.
Between the MRIs (I've had 3, no change) and the neuro testing, I did get disability. They feel these guys won't go away.
Anyone else have tests like these? I tell you, it does help to actually know there is a reason I am addled. My LLMD feels these are like scars from the lyme assault and may not go away.
Posts: 190 | From BC Canada | Registered: Jul 2004
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posted
Sign me up too. I cant be on the internet for more than 10 minutes or im in a coma. Any "figuring" does me in.
I can sometimes be exhausted and still push myself to do a physical task but no matter how I try and focus I cant read and grasp what is on the paper in front of me.]
I can never read all the replies on one post and if their is a LONG post I dont even try to read it cuz I know its futile.
Posts: 561 | From connecticut | Registered: May 2004
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posted
Brain fatigue has been one of my most prominent and frustrating symptoms for the last 6 years. I was hit with "sudden onset" of "CFIDS" then, not knowing it was really lyme.
At the time I was almost done with grad school while working and completing internships in schools. So when my brain stopped working, it was a great loss for me, as it is for all of us.
I've been on lyme treatment for about 7 months now, a mix of RX meds, herbal meds, supplements and diet. In the last 3 weeks I've turned a corner. It seems to have begun when I started taking cholestyramine.
Within the first 3 days, I noticed that I was starting to think better, and I was only on half a dose the first week. Since then, I'm speaking more clearly, with less frustration, and able to do some paperwork that just last month I couldn't figure out without days and days of struggle, or having someone help me.
Still, at times, I would rather clean my kitchen counters and dishes, or do laundry so I don't have to think. But I am seeing overall improvements and able to do more physically as well.
I have some craft projects I want to start, a scrapbook and baby blanket. This does take a lot of brain work, so I have to start it when I'm able to think more clearly, like in the morning. When I'm physically tired, my brain is too drained as well.
Take care. Things will turn around for you, hang in there. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I am brain dead sometimes.
It is awful when you feel cognitive stuff slipping away. I do play games on line sometimes to keep my brain working.
I do better some days than others. The flagyl I took last go around with biaxin really helped clear up the brain fog.
My IQ isn't nearly what it used to be but it is still good enough for me. Every once in awhile I'll take tests to see if I still have it.
I can relate to the losing the "zest" for living aspect of this illness also. My personality has changed greatly from having lyme. When I relapse it can be evidenced in my short fuse, and grumpy hopeless outlook.
Unfortunately, it is reassuring to see others are struggling with the same issues and it is not just me.
I wish everyone the best.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Minoucat, Nice to see your post - we conversed a long time ago. Glad to hear of your improvement but sorry that you're still struggling with certain issues.
You said: "I cry at the drop of a hat". In the midst of extreme physical pain and illness we don't usually allow ourselves to grieve...in my experience that usually comes later and sometimes unexpectedly. I cry when I'm going through times like that...ultimately it's beneficial.
On the other hand, it can be related to hormones. I was more emotional when mine were out of balance and feel better when supplementing estrogen (natural, plant-based)...don't know if you're having any of those issues.
Are you taking B12 per Buhner? I was glad to see that he included that in his neuro protocol. My son has had benefit from taking methylcobalamin injections 3/week - tried the sublingual, but it didn't seem to work as well.
Hope you continue on your path to healing, Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yep. ginko and SAMe(1) and acetyl-L Carnitine(3) help me a lot-away from food
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