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Lyme Disease
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Posted 1/18/2015 4:02 AM (GMT 0)
I'm kind of in a weird stage of my treatment/life right now. It's been years since I've worked...the first time I had to stop working was for about a 2 year period, which always felt temporary - it was obviously no picnic, but the whole process made sense and seemed to be going (albeit slowly) in the right direction. Then this second leg of it which has been another 2 years has been a lot more torturous - just as I was getting back on my feet I had a botched surgery and the lyme that was finally in remission or whatever you might call it was allowed to take back over and...you know the drill.

So now I'm in a place where some of the time I'm feeling pretty good/functional but some of the time I can't do anything at all. I'm talking not ever a full week of being functional. But somehow feeling good has actually become a difficult thing to deal with - I have this restless energy I don't know what to do with because my body and brain are so out of practice (my attention span is horrendous considering what I once was)...

What do you DO to keep busy when not working when you have lyme? What do you do to work towards becoming more functional when it has to be kind of stop and go? I've gotten to the point where I'm ready to smash my TV to pieces because I'm so sick of watching TV being something I do so much and sometimes one of the only things I do all day.

Hope this was somewhat comprehensible - like I said scatter brain with zero attention span these days.
Posted 1/18/2015 4:06 AM (GMT 0)
Try to clean the house, and then I don't clean it, and I feel guilty. This whole cycle keeps repeating itself, LOL.

You know what really helped me? Binge watching Orange is the New Black on Netflix. That thing had me completely hooked. I couldn't stop.

Reading helps, and if I didn't have something called a trigger finger, I would be crocheting and knitting. Crafts help a lot.

You've got the Lyme ADHD thing. It's awful.

Detox a lot, and spend some time in bed here and there, just resting, or watching Netflix, LOL!

M
Posted 1/18/2015 4:45 AM (GMT 0)
border,

I would read the whole day and the whole night if I could. I read a lot. I also listen to videos on youtube about lyme from the drs I like--sometimes I listen several times. I learn a lot and it helps me find out new things I can try in the future if ever needed. But it sounds like you said "scatter brain with zero attention span these days". Yes, I remember those days well, but they are gone now. Are you taking anything for your brain? I've heard Taurine helps with brain clarity but didn't try it myself. I would look into trying something to help my brain function. There is always something out there that will help. Taurine seems cheap enough and worth a shot. But like I said, I have no experience with it, sorry. Maybe others can help you a lot more than I can. I have children, so I never get a chance to get bored. I am overwhelmed sometimes because I don't get much time by myself.
Posted 1/18/2015 11:45 AM (GMT 0)
Hi Borderlyme,

I don't really ever get the chance to be bored - my life is pretty crazy-, but something that might interest you is TED talks. Sometimes I put one on while I'm in a detox bath or cleaning or doing food prep. There are a ton of different subjects, and I've learned a lot. I'm not a tv person, and I love reading. Have you ever tried audio books? Do you like to craft? I went to a painting night with friends in September, and it was really fun. I'm not an artist by any means, but it very therapeutic to paint and the time flew by.

I hope you feel better soon!
Posted 1/18/2015 12:06 PM (GMT 0)
Yeah, same tune as the rest - reading would be good. It's a great way to do just what you said, get your brain back into the practice of, you know, functioning properly. Feed the mind, right? Though, it'd have to be something that really took hold of your interest, considering your issues with attention.

But, to be honest, I'd understand if the whole reading for enjoyment thing didn't appeal to you. However much I miss it some days, I haven't picked up a book for fun in a couple years or so.

Anyway, if not for that, the informational stuff, crafts, and whatever else has been suggested, or.. movies, TV, then.. I dunno. If it were me, I'd invest in some video games or something. Nothing too complex or challenging though. Expensive either, unless you got the money. Some simple simulation or civilization-building type games might be cool.

You got a decent PC, or nah?


That's all I got though. I am not a wealth of ideas, sorry. Hope you find something. :(
Posted 1/18/2015 3:06 PM (GMT 0)
Get a dog and walk, walk, walk. Even a neighbours dog. Exercise will help you get to that next level of healing, and the dogs are soooo appreciative.

I second the TEDx talks. There are so many interesting things to think about other than lyme.

I am kind of stuck in a groove myself. I have been researching for so long on how to heal our daughter, that even now when she is better I have trouble drawing myself away.....
Posted 1/18/2015 3:38 PM (GMT 0)
There have been quite a few times I have wanted to throw the TV out the window!! But it is tricky to find the right kind of project, I found. Most things are too frustrating or totally impossible to fathom with an addled brain, or physically draining.

Somethings that I have done: (as suggested above) TED talks, organizing my family photos, puzzles, learning a language on Duolinguo (it's free), ancestry research, simple sewing projects, and cooking.

And I got a ukelele for Christmas and I'm totally obsessed with it!!

Hope you find something soon to distract you from your situation.
Posted 1/18/2015 8:29 PM (GMT 0)
I watch documentaries, movies or some series on Netflix, but mostly in the evening so I can go to bed with something on my mind besides my daughter and I. I don't like to have the tv on during the day since it slows me down.

I do puzzles in the dead of winter so my brain has another activity. I read for pleasure and to learn. I was going to start spinning some alpaca wool that I got in the fall, but never did get around to it. I may yet since it will still be the rainy season for a while.

In the summer I'm outside a lot, weeding, growing vegies and ornamentals, but not doing as much as I used to. I go on walks more then since I feel better in the summer. I saw that the daffodils are up already, so spring is on the way!

We might get a dog this year. We spent the last 2 days at a dog show, checking out different breeds. My problem is I like the dogs that need to be kept busy much of the time, like Huskies and Border Collies, etc. and they would get rather bored around here. So we might just get another Keeshond, which we're familiar with. Great Danes are nice too. :) Keesies are just goofy dogs, in the non sporting group, and herding and working dogs are more serious. Any way, dogs are a lot of company for me and they get me out walking more.

In the fall, I try to stock up the freezer with the vegies I've grown, never getting as much done as I'd like to.
Posted 1/18/2015 9:58 PM (GMT 0)
Hi BorderLyme,

My weeks sound exactly like yours. Right before Christmas I thought I was finally REALLY getting better--two full weeks of energy and normal daily patterns. Since the new year I'm sleeping, or tired, or bored, and find that I'm back to choosing the ONE thing i can use my energy on per day before I'm totally wiped out.

So it's TV (I love the new sitcoms Black-ish and Jane the Virgin because they're hilarious), or books or magazines for as long as I can concentrate on them (not more than 20 minutes or so). The thing that's freaking me out is I'm in the middle of job interviews. I am nervous about accepting a position because I know my energy isn't back yet and I have no clue what my brain will do. I've been reading my interview follow-up emails and they are not nearly as eloquent as I used to be--lot of simple wording and repetitive phrases. Nerve-wracking phase, for sure!!

The only thing that really really helps is to make myself exercise, even if I just do stretches in my livingroom for 10 minutes. I sometimes start by googling "5-Minute Workouts" so I force myself to do SOMETHING for 5 minutes--then my mind is clear, I have energy, and my mood lifts. Good luck with this, and I hope it lifts for you soon.
Posted 1/21/2015 4:31 AM (GMT 0)
Detox is my major task on almost every day...and seeing acupuncturist, LLMD, etc.

On good days, I'll try to study to renew my professional certification, count the day to going back to work and have my "normal" self & life, and daydream about doing all the adventurous things I used to do.

On good days and have extra energy to spare, cleaning the house, go run errands (esp., grocery shopping).

On bad days, try to do as little as possible....maybe just watch TV.

The most important thing to do everyday though is giving my child lots of hugs and kisses with lots of tickles and laughs. I also help him with studying everyday except on my really really bad day. He's very energetic despite having Lyme himself.....I don't always get to read him during bedtime or tug him in because by that time I'm way too exhausted.

I miss seeing friends though, but don't really get to see anyone anymore. Mostly because I'm not reliable and had to cancel with them several times because of the symptom, the herx, or the reaction to abx......Once a friend came by, but he probably thought I look too good to be sick or something (but my bones were hurting everywhere) because I haven't heard from him since.....Conclusion, easier to not try to see friends right now because either they don't understand or I'm too much in pain or too tired to see them.

Bottom line: focusing on self, getting better, family, and doctor/health visits.
Posted 1/21/2015 4:00 PM (GMT 0)
Great suggestions everyone - I'm a little depressed on top of it and I feel like I need some sense of purpose that's lacking right now. I think I was doing better psychologically when I had some sort of appointments to get to several times a week - can do accupuncture or chiropractic or anything with my new insurance though.

Hopefully it's a phase...it is also winter and since I had to move back in with my parents due to money issues the upside is they live in a gorgeous (albeit tick-filled) area with a nice built in pool, and my nephews live nearby - hopefully I'll get out of the funk when the sun starts shining more!
Posted 1/21/2015 5:26 PM (GMT 0)
I tend to play some Xbox or PS3 sometimes or get on my laptop and facebook/Twitter and other sites as well. Also getting out and going to browse at a store helps occasionally.

Also putting a calm sport on(like golf Or something, I know sounds corny but it helps! Lol) and just laying down in bed while relaxing and freeing your mind of everything can also help.
Posted 1/21/2015 6:19 PM (GMT 0)
A sunny day can help a lot! We have a frosty, sunny day today and I feel better for it. I think it's partly the barometer being up.
Posted 1/21/2015 9:07 PM (GMT 0)
I've wanted to learn weaving for a long time, on a floor loom. We have a perfect room for one. :)
Posted 1/21/2015 9:54 PM (GMT 0)
My son is on the computer every waking minute. Not sure how I'll get it away - he wants to go back to school next Wed. not sure he's ready, had a bad week.

He does Minecraft and a few other games, watches You Tube things, listens to music, etc.

Trying to get him into reading when the computer goes away - hoping he will do the school and homework this time (he was put out in Sept. and missed last spring with raging, tics, ocd, odd, etc).

Pinella, Tri Fortify Orange and Alka Seltzer Gold with lemon all seemed to help him a lot. He was only on Pinella for months, but the other two really did some good work.

Andrew had a bad week Thanksgiving and seems to be having one this past week (around 6 weeks later) not sure when he's back in school if 6 more weeks will be a disaster.

I would say try puzzles, but they may be overwhelming. Music and dancing might be good, exercise, positive energy and music is supposed to be healing.

Hang in there - glad you have parents who are loving and caring to be there for you!
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