kgg
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Welcome August! Part of me is amazed and sad at how quickly the summer is going by, the other part is thrilled! The heat and humidity is not my friend.
This thread is about not giving in to the tick born illness we have. It is not about feeling guilty when we are not running a marathon but celebrating the things we can do to move our body. In light of that, we count activities of daily living: washing dishes, vacuuming, walking, stair climbing. But we also celebrate those that can do more: horseback riding, cardiac rehab, swimming, hiking, etc.
Below, I am going to re-post two posts from this past weekend that shows the spectrum of what we do here. The first is from Tracy. She was swimming and doing great then pushed it past what her body can do and paid dearly. Haven't we all done that? Finding that balance so that we can move our body with out the crash is a hard lesson.
The second post was from LPKayak, who has had some victories recently such as relocating to a an area that fits her better, horse back riding 7 days in a row and losing 20 pounds. Congratulations!
Unfortunately, I have joined the club of couch potatoes here. We have some members who are struggling with colds, joint pain and just feeling wretched. But I still was able to do laundry (stair climbing) and some dishes before I had to have quality time with my recliner.
So for you who are in this club, I would encourage you to try to move your body when you can. Gently. If you are herxing too much, amend that. If you are having a flare, treat that. The goal is to move the body and not give in to this disease!
So what can you do today?
Karen Posts: 1685 | From Maine | Registered: Jun 2004
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kgg
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Hello everyone....really enjoyed just reading everyone's updates! So uplifting! Wonderful tips on keeping cool, too!
I need some help on modulating exercise. Who woulda thunk it? I used to post on this thread about walking a mile here and there; then it had been so long that I've been bedridden and unable to do a thing, I haven't posted in forever.
But now I have a pool, and I've started swimming. And I've been so busy swimming I didn't come and post it every day, LOL!!! I was going to....but I kept track of it in my Lyme log. (www.lymelog.com.) Anyway...now I am having trouble having any clue about modulating it.
I have clearly missed days due to bad weather and when I feel horrible. But I just swam a streak of five consecutive days, about 20 minutes a day of nonstop swimming, and I am in agony. Here's what I wrote in my Lyme Log last night:
"I really overdid it with swimming. Today I felt very tired, but I forced myself to swim anyway. When I first started my arms and legs felt like lead weights and I was very out of breath. As I kept going it got a little better, but I had to take breaks in between; compared to the last few days where I have breezed right through it.
Then when I went to bed, late at night the pain set in. It was awful; my joints hurt horribly! It was very painful but my legs also felt restless; very hard to describe, like I needed to move them but if I moved them at all they hurt like hell. I took 800 mg of Ibuprophen, which I am not supposed to take being on Coumadin. That did nothing. After suffering for a couple hours I broke down and took 2 Vicodin which finally took the pain away.
A while later I was still aching all over though my joints felt better so I took 10 mg of Valium which is prescribed for muscle pain though I very rarely take it. What a painful night, all in all. I need to learn how to modulate myself with exercise. I guess today I really needed to listen to my body. I knew I felt too tired to exercise; I've swam several days in a row without a break and could tell I was too tired to swim.
It could also be that my adrenals are overtaxed; and I realize I haven't been taking any supplements in over a week; which means I haven't taken any adrenal supplements. So between that and being physically exhausted I should not have swam today. I was just gliding along with ease up until today, thinking I was doing great, dammit!"
I am assuming I should take today off, but then there's that school of thought that when you are in pain you should push through it or else you will "freeze up"...and that pushing through it will help you to get past it.
HELP!!! Thanks in advance! And remember, I've gone from being basically bedridden and doing nothing for about 3 years to swimming like this for about the past 3 - 4 weeks.
Posts: 1685 | From Maine | Registered: Jun 2004
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kgg
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lpkayak Frequent Contributor (1K+ posts) Member # 5230 02 August, 2010 12:35 AM
hi-sorry i haven't been checking in. its that thing that when you feel good and start to do real life stuff and you want to pretend your not a lymie...its happening to me.
bessie is going great. i wish i could post a pic of us. the owner of the barn likes me a lot and is letting me ride 7 days a week for the price of 3.
tonight for the first time(in a long time) kris started playing. he ran away and then stopped and stared at me and waited for me to say come and then he ran to me like a crazy dog. its an old game we used to play at one beach in nh. he did it about 5 times and then was pretty sore---but happy. i gave him his tramadol and he took a nap.
i've also been walking a full hour now...but not everyday. its really been hot and no sea breeze. but a few times a week i do it.
and i keep thinking about my kayak but just haven't gotten it together to go yet. but i think i am finally strong enough.
ive lost over 20 pounds in the last two months with the riding and walking. that maks 40 altogether in the last 6 months...so i'm pretty happy about that.
i have had to put time and energy into packing up my fat clothes and finding my next size down clothes---(two sizes down really)but i had to buy some new ones cuz i don't have 100 degree clothes since i came from nh to nj
i am really doing well and i think it is two things:
1. constant sweating-at least 16 hours a day-sometimes more. the heat is gross here-i take a shower and by the time i dry off i'm sweating again. but i think it is really detoxing me
2. buhner tea. it still happens that when i stop it for some reason i go backwards. i have been taking 1/2 cup a day of a really strong batch i made and i can't believe my energy. i did a lot today and i'm not ready for bed yet. i rode, packed, did tons of laundry and cooked for two hours....its almost like back in the day when i was supermom.
so i'm just gonna be grateful here and enjoy it. i think this is the longest i have gone in the last 5 years without going into the hospital.
i'm gonna do a parasite post in medical cuz something happened to me - but i'm probably too tired tonight. its after midnight and i feel like i can sleep---so nite.
ohhhh! to the new ppl. i was where you are a very short time ago. within the year. two years ago i was in a wheelchair. i remember exercising for 2-3 min and thinking i would die. my suggestion is slow it way down but don't stop. just do what you can in one day. often a 24 hr rest is necessary between sessions at first (read dr.b's exercise writings)
but mostly hang in-be creative about what you CAN do...think positive...and just do something each day. don't beat yourself up about how little it is. take care all.
-------------------- please excuse my typos . my hands are really, really bad now. toooooo much pain to proof. sorry.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
Thanks kgg. I hope the world of couch potato is treating you well. Some days I feel so proud of "just doing laundry."
lpkayak, I posted this on Med Q's, but thought I'd ask you since I know you're such a fan...Do you know what Dr. B's tea does (detox, kill bugs, general support, etc.)? I want to start it, but don't want to start it at the same time I start something with a similar function and pummell myself.
I had a nice slow pj Saturday with the fam. Got a nice long nap in, too. Yesterday my activity consisted of crawling into and sitting in a bounce house while my daughter jumped around. That was nice .
Today got up and walked to work.
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Tracy9
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Well, today I resumed my swimming. It went well. I did wake up feeling very achey, tired, and sore still...but once I got up and moved around a bit it got a little better.
I swam the same amount I have been. I did take yesterday off. I went a little slower today...took a couple breaks, but did the same number of laps I have been doing (I add two a day.) I'd say I swam a good 20-30 minutes.
So I feel okay, and I'm glad I pushed myself to do it today. A friend said, don't let more than one day go by without exercise and I think he is right. I hope I can do it tomorrow; I have some appts and hope I can fit it tomorrow.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Today I brought in the recycling bins, took the kids to school, walked to work and this afternoon I am picking up some stuff at the pharmacy and some food for our dog and it's cheap family dinner night at our restaurant, so I'll pick that up, too.
Tomorrow I start my more reduced work schedule to be able to nap in the afternoon.
Thank god.
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kgg
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Glad you were able to get back in the pool, Tracy! Here is an excerpt from page 230, Insights into Lyme Disease Treatment by Connie Strasheim:
"People with Lyme disease find most physical activity exhausting, often requiring several days to rest to recover. At the same time, they feel compelled to continue their usual exercise program to stay in shape.
Many of my patients insist on going to the gym every day of the week, and I must tell them that they are not allowed to so this! Even though they feel awful after their workouts (this is not always a good thing), they think that they are doing something positive for themselves.
In order to recover, they must carefully budget their energy expenditure, and make sure that they leave themselves as much energy as possible after their workouts, so that they may properly recover from the exercise. Physical activity that leaves them exhausted will complicate their recovery.
I tell my patients that it's better to walk instead of going to the gym, but only as far as they are comfortable with and only if it improves how they feel. If they feel poorly afterwards, then it means that they are doing too much."
Since you asked last week for opinions, this is mine. I would only add the extra laps on a weekly basis. See how you do for a week and then see if your body would tolerate adding more laps.
If this was me, I would be swimming every other day. Or other days, do water exercise but not laps. Something that would not raise your heart rate so much. Sometimes it is the aerobic exercise that gets us. You can walk in the shallow end. Do leg raises. Slow jumping jacks. Pus ups on the steps. But not raise your heart rate. Then do the laps the next day.
FWIW, Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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kgg
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Yesterday, I spent the day in the care and sitting. My elderly father had an ultrasound on an aneurysm and then had an appointment three hours later. Lots of sitting.
Today I will be doing catch up house cleaning as it is raining. I will walk up to the mail.
Lymetoo, make them come back and get that air conditioner fixed right! It is too hot where you are to live without it.
KAM! I hope you are OK. I get worried when you disappear. Hope you are doing all right.
Greengirl, may those afternoon naps be healing for you!
Have a good day, every one! Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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kgg
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No exercise for me today. And I have a headache now for the first time in a long time, so I am off to bed.
Posts: 1685 | From Maine | Registered: Jun 2004
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kam
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I will catch up with what you all have been doing when that part of the brain is working.
I was able to vacuum out the pebbles from the back of the car seat and the passenger seat...but it wasn't really a wise thing to do.
Not really up to it.
I tried to put a blanket down in the back so it will be ready next time a couple of dogs get in the back but I just couldn't do it. I was drained.
I have not been on line as my monitor died. The manager loaned me her monitor for now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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aklnwlf
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Tuesday and Wednesday-Me and Rocky walked one mile each day.
Am sore from all the data entry hence the cutting back on my computer time.
See you all later!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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Tracy9
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I have continued to swim every day, adding two laps a day, despite the pain.
Clearly, now I have exercise dependence. I saw this on AOL news today:
What Is Exercise Dependence?
Exercise dependence means that exercise in and of itself is the main goal. According to Hausenblaas, signs of exercise dependence include:
Exercising for longer and longer periods of time.
Consistently thinking about exercise.
Giving up work/family/social obligations to exercise.
Ignoring injuries in order to exercise.
Experiencing withdrawal effects when not able to exercise (e.g., increased anxiety, stress, depression).
...since I do all of these things, I guess I've gone from laying in bed, barely moving for three years to "exercise dependence."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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I should add I've been having anxiety already about what I'm going to do in the winter when we have to close the pool.
I've been researchig these blow up pool covers that allow you to operate your pool year round (ours is heated). It is already causing me considerable anxiety. I'm thinking, OMG I'm finally out of bed, really exercising, seeing some gains, and it's going to come to a screeching halt as soon as we have to close the pool!
I'm becoming obsessed!!! Now I have a new disorder!!! Exercise dependence! Or more concisely, SWIMMING dependence!!!
(I'm up to 40 laps a day, per my own special counting method. It's a 40 foot pool, I count each way, up and back.)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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kam
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Tracy...I see you are still having trouble sleeping through the night. Hang in there.
Not able to read what you wrote but hope to soon.
Water therapy this am. Body is not in as much pain as it has been lately.
But, the brain and body were just plain out of it.
I really struggled to roll the cover off the pool. It is a small pool. Thankfully, the PT guy came in and finished the job.
Mostly, I just kept moving to different parts of the pool and just sitting there. Est actually pool space is about 8 ft long and maybe 5 ft wide.
But, today it looked big too me. Usually it looks so small.
Did not want to get out of pool as body felt good being in there. But, after 15 min needed to get out before I was too weak to lift my body out of there.
No shower this time. Still have wet suit on but it is hot out this am so it is a good way to keep cool.
I remember laughing a few times when I tried to do something. Can't recall what that was all about right now.
Oh yes. I was trying to use the kick board. I usually do well with that and can do a couple of laps.
Today, I stayed in one place no matter how hard I tried to kick. Just too weak I guess. I don't know why I found that funny. EAsily amused I guess.
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kam
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Just read your intro Karen. Good intro.
Glad to hear Kayak checked in and has been horseback riding and lost 20 pounds.
That is so cool about Tracy. Even if she did crash.
vision is going again so will be back to read more later.
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posted
Take care of yourself, kam. I hope you will do better next time you get to swim. Each time is progress..no matter what.
Yes, it was really hot Monday and Tuesday too... about 102-104. Today was wonderful. We got a cool front and it was rainy most of the day. I think the high was around 85!!
The manager is going to come out tomorrow to replace or clean out something on the AC. He seems to know what is wrong. I think it's something he made a temporary fix on last week.
I went to exercise for the first time in 3 wks Wednesday. It was great seeing everyone again and getting to chat with them. One of the nurses and I talked and laughed together for about 20 minutes. It was fun.
I did 35 laps, 10 min on the machine, weights and talking. Lots of talking!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kgg
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Low energy day for me. I walked up to the mail. I did some dishes. Seemed like I was busy today, but did not accomplish much. And it did not resemble exercise at all.
But what is cool is we having a trout pond dug. And it is deep enough to possibly be a swimming hole. We shall see. But that will be for next year.
Lymetoo, you must be in pretty good shape to go back to exercising after a 3 week hiatus and not have to drop back on your laps and time too much. Good for you!
KAM, glad you were able to get to the pool today. I remember laughing at myself when I first tried those water aerobic shoes in the pool and ended up going upside down!
Aklnwlf, hang in there. And rest up. Glad you are Rocky are getting some walks in.
Exercise Dependence.... my body doesn't allow for that. So I guess I am safe from at least that affliction. Be careful, Tracy. Glad you are getting some water time.
Take care every one! Karen
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Tracy9
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Swam 42 laps today. Pain from swimming continues but not getting any worse so I keep doing it. Must go to sleep early tonight as I am picking up a friend's mother in law early tomorrow to go meet her son, coming home from Iraq at the airfield, after a year long tour. Should be a very cool experience!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lpkayak
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no exercise the last two days and i gained 2 pounds back but i don't even care.
i drove 8 hrs to pittsburgh (it only took 5 1/2 to get back) and spent the night with my youngest son. hes 26. he was at a conference for biologists. he gets his doctorate next may. i haven't seen him in 2 yrs. it was great. i'm so proud of him.
and this kid had lyme many times starting when he was 3 right thru school. but we aggressively gave him doxy for every bite and he is ok.
everyone one sounds good except kam having a ruff time. i hope it gets better soon.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
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Hoping I can catch up on how everyone is doing later when able
Surprised at how different monitors affect me now. Closing eyes as I type this.
What I call suicide watch is over with now. I am just a wet noodle so need to build my strength back up.
I was able to walk out the front door and get in the car and drive to the dirt road so Rosie could stretch her lelegs.
I stayed in the car
She ran into one of her 4 legged furry friends, Rosmeo. Romeo joined her for a short bit and then took off to go with the others. The Rosie joined him for a short bit and then came back to the car.
That lucky dog. How many of us find our Romeo in the cool of the morning in the forest!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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How cute about Romeo and Rosie!! I can just see it happening before me!! Hope today is a good day for you, kam.
kayak... That is so wonderful. I'm proud of him for you!!
If any of you read this on Sat afternoon, say a prayer for my husband. He is working with a BIG star today and I SO want him to do well!!
======
I did 40 laps Friday, weights, hand cranks and 10 min on my favorite machine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kgg
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Prayers lifted, Lymetoo!
Kayak, so glad you were able to get to see your son. Two years is a long time. Agree, very proud of him too!
KAM, I am glad you are a little better. Hate when that happens, but probably not as much as you do! Take it slow.
Today was family day with my dad and step-mom. And their two dogs plus our two. So cleaning, cooking and now I am off to my recliner...
Best, Karen
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aklnwlf
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Me and Rocky walked a mile yesterday and just a short stroll today.
Quit my job yesterday. It was too hard on my shoulders and upper back.
Am so relieved. Will post more when my right shoulder is feeling better.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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kam
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ALW..good to hear about you and Rocky going for your 1 mile walk and a stroll. Still looking forward to doing this at some point.
Glad you are relieved about no longer having the stress on the body from work.
Karen...the recliner sounds good!
tutu..praying your husband has fun and all goes well!
Kayak...glad you got to see your son and congrats to him.
tracy...wow 42 laps sounds like a lot...wondering how many laps it takes to do a mile. Very cool.
OK brain is going so hoping to be back to catch up before we start a new week.
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kam
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Sunday:
OK starting with the basics. Able to take Rosie across the street in the reclining power chair with leg lifts this am to toilet. That was a struggle
Able to take Rosie to dog park.
Able to be on feet from apartment to car and then again to let Rosie out of car as I drove on the dirt road and she ran.
naps twice today. Not sure what is going on. Guess I needed it.
[ 08-08-2010, 09:36 PM: Message edited by: kam ]
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aklnwlf
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Just chilling. Took muscle relaxer, pain pill and anti-inflammatory for upper right back.
Hoping I will recover soon for the strain from over-typing.
See you all later!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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