We try to avoid the "E" word here and focus more on what we can do. We have some who (me) getting out of the recliner is a big goal. We have others who can attend cardiac rehab and function well. Or ride a horse, swim laps, walk miles with their dog. For others, activity of daily living is their movement. Use or lose it!
Every once in a while, I need to go back to a pdf that is for ME/CFS patients. It is about pacing. As ill as some of us are, we need to learn to avoid that push/crash that can happen. I do this fairly consistently... As I sit in my recliner and review how I got here again (!), I am reminded of pacing.
Here is the link to the pdf: http://www.afme.org.uk/booklets.asp It is the 7th one down. Please don't let the term "ME" dissuade you from reading this. I believe that there are applications we can draw from this even though we have Tick Born Disease.
Here is an excerpt of what pacing is:
quote:
To understand pacing it can help to think of your available energy as being like a mobile phone battery. If you completely drain the battery you have to wait to recharge it before you can use the phone again. If you use some of the battery and make regular top ups, then your phone will always be ready for use. Managing your energy through planned periods of activity and rest will mean that you are more likely to be able to do the activities that you want to do.
I hope this helps as we focus on moving our bodies.
So what can you do today?
Karen Posted by kgg (Member # 5867) on :
I want to respond to what Aklnwlf wrote yesterday on last week's thread. She is having pain in her shoulder from all of the typing she is doing.
This would happen to me as I have a lot of trigger points in my shoulder area. Especially the right one.
Do I remember correctly that you see a orthopedic doc for your shoulder? My memory is so bad lately. Anyway, I have found that massage helps. Watching my body mechanics is important. And heat.
I hope that you are feeling better soon and you can find something to help with this.
Best, Karen
Posted by Misfit (Member # 26270) on :
I keep telling myself that this is the day ill go for a short walk. It hasnt happened tho i have gone shopping the last coupla days. That counts. I did water last nite. Its just too hot! I broke out in a good sweat watering even tho it only took me about 5mins. I have much less to water now. I find if i stay in the heat too long my heart starts pounding. That cant be good.
Posted by kam (Member # 3410) on :
I am reminded that I just have to wait it out and get through summer.
Fall is coming!
Thanks for the quote Karen. I was not up to reading the pdf so thankful I had an idea.
I have often thought of this condition as a cell phone with 1/4 of a bar at times.
Posted by kam (Member # 3410) on :
Back to the basics again. Able to get to the post office this morning via the reclining pc with leg lifts.
Kind of out of it brain wise but at least was able to get there and back.
Posted by kam (Member # 3410) on :
Tues: able to drive to dog park to toilet Rosie before going to grocery store.
also able to get gas this am. Clerk brought my change out. Very nice.
Able to use electric cart at grocery store. Visit was short. Learned carts are called smart carts.
I did not feel smart in it today nor do I ever.
Still feeling grumpy. Now, I will do better when health improves. Need to take a couple of excedrin now as my outing cuased that swollen brain thing again...wasn't clear before I left.
But, I was hoping my attitude would pick up if I was able to get out.
Learned about a guy who is traveling across the US in a power chair to raise money to build a place for those with MD to be more independent and not institutionalized. Cool.
video on lower right hand corner
Posted by Lymetoo (Member # 743) on :
Hey gang!!
Thanks for the info, Karen.. it was helpful to think of it that way!!
kam.. yes, fall is right around the corner! YEA!! It's so hot here too... heat indices way above 100 today... will cool off to 90 by Saturday.
I walked 40 laps Monday and did 10 min on the machine, weights and arm cranks. I think I'll leave out the arm cranks Wed. They really make my neck hurt.
Posted by kam (Member # 3410) on :
Hurray! I was able to get further than a mile or two out of town.
Went to first creek crossing. It is not far but I do not recall the mileage...est 10 miles out of town.
Est 5 min on feet, rest on rock and then 5 min back.
I will check my calendar to see when I was able to head out that way last. But, it seems like a long time...most likely before summer hit.
Saw a small deer (fawn?) on the way.
Able to get my feet wet and take a couple of pics. They are on FB.
Posted by kam (Member # 3410) on :
Able to go for the walk in the forest this am. 5 min, rest and then 5 min out.
Mosquito's big time. Next time going to try and go earlier.
Lots of people out in the cool of the morning.
Hot in the apartment.
Also able to water the plants.
I checked and it has been 17 days since i HAVE BEEN able to go for the walk in the forest.
I checked re: the 1st creek crossing. Checked back to may and still nothing. Vision and brain faded so stopped. Bottom line is I knew it had been a while since I was able to be out there.
Resting now and then breakfast.
Lots of small flowers that I have not seen in the past on the trail. Did not bring camera although it was in the car. Just did not have what it took to go and get it and come back to flowers.
Hoping I will be able to go there again before they are gone.
Saw 3 dog park people on the trail this am.
Flies are bad this year too. The one guy said he had the whole right side of his car covered in flies the other morning.
I think we have had more rain this summer.
Posted by kgg (Member # 5867) on :
Yesterday, I picked wax beans. Today I will be processing them. Thankfully the humidity is much less today. With the humidity yesterday, I was not highly motivated.
KAM, so glad you were able to get out to the creek. The pictures you took were beautiful!
Keep up the good work, Lymetoo! I am the same way. I have to watch what I do with my arms to avoid pain.
Misfit, my heart was pounding yesterday while trying to pick beans midday. I waited until the evening and did better. Have you checked out cooling vests? I had not seen them before I met someone in Phoenix who uses it all summer. Not inexpensive, but I would think worth it with the heat you get out there!
Have a good day, every one! Karen
Posted by kam (Member # 3410) on :
Hoping to read how others are doing soon. MS Web sites use to have a variety of cooling vests and other things to help.
Glad the humidity is less today Karen and you were able to pick those beans.
need to read what ToTo has been up to.
Brain is a bit inflamed as I over used it this am.
But, good morning. I also was able to put two loads of laundry in and fold the towels and put them away from weeks ago.
The folding of the towels is what inflamed the brain.
Able to gather the trash and put it in the hallway. I was planning on taking it out to the dumpster when able.
but, a mystery person took it out instead. Cool!
Time to get the laundry from the dryer now.
Posted by aklnwlf (Member # 5960) on :
Wednesday-Me and Rocky 3 miles today! I started him on Iams Senior with Glucosamine/Chondroitin hoping it will help with his limping.
Sounds like everyone's doing great considering this heat wave.
Karen, I do have a bad arm but it's my left one. Two shoulder surgeries and one elbow surgery.
The one that I injured was my one good arm, the right. Hurt my trapezius muscle.
Since I quit my job I'm feeling much better, especially today.
Not only did some walking but vacuumed, washed my bedding and hung them outside to dry, cleaned the bathrooms and squeezed in a self pedi and mani to boot!
Am so glad to be recovering. Those pills the ortho gave me on Thursday are really working wonders.
See you all later in the week.
Posted by kam (Member # 3410) on :
AKW..you are sounding much better!
Posted by Lymetoo (Member # 743) on :
Great news, AK!! Glad you are feeling better!!!
kam.. Mystery people can be a GOOD thing, huh!?
I did my 10 min on the machine, 35 laps (sciatica again), no arm cranks (neck hurts from Monday), and weights.
Took my new camera and got pics of my buddies and a few of myself on my favorite machine!!
Posted by kam (Member # 3410) on :
TuTu...good adjusting but continuing to do what you can with what you have. Posted by lpkayak (Member # 5230) on :
hi guys-sorry i am not checking in so much but maybe what is happeneing to me is in your future!
i do have some pain in my right groin after driving in stop and go trafic...theres a lot here (nj)
but if i ride with that pain...the riding seems to stretch it out the right way and the pain goes away
what i want to keep telling ppl is my constant sweating (i think it detoxes me) and my buhner herb tea are the reasons i am doing so well.
i walk an hour a day alone (without dog) cuz i don't really get exercise with him anymore ---and 5-6 months ago i had to drive in the car to walk him cuz i couldn't keep up with him
i'm also riding about 5 times a week and now THE HORSE GETS TIRED BEFORE ME!!!! that means a lot about my fitness cuz the horse is doing well and getting more and more fit too...her name is bessie
and i've been cooking and going out to music and plays and movies...this is not the way i have lived for many many years...
i'm down a few more pounds and i'm even dating. so i'm just gonna enjoy myself a long as it lasts. who knows...when it gets cooler and i stop sweating maybe i will go backwards.
i still need surgeries...i still take adrenal and thyroid meds.
but it is just so great to be so normal for awhile.
Posted by kgg (Member # 5867) on :
Wow, Aklnwlf and Kayak, so glad you are both on an upswing! Love when life turns nice. Long may it continue!
KAM, thankful for mystery people! Especially when it comes to the trash.
Lymetoo, I forget what you did to get rid of the sciatic last time but do it again!!
I spent the day in the car running errands and going to an appointment I did not have. HA! I am not sure who was more surprised me or the staff. When I finally got home, I was sleepy.
Best, Karen
Posted by kam (Member # 3410) on :
Able to explore a little bit more this evening. Found a new trail head which was a short dirt road.
It gave Rosie a chance to stretch her legs and do her business and both of us a chance to get out of the apartment.
Took 3 pics. I hope to post them after a bit.
I'll be back to see what others are doing. Vision is still weird. Sure hope it is the monitor. Looking forward to be able to set up the new one.
Posted by kam (Member # 3410) on :
Having a bit of a pity party this am. But, doing better now that I am laying down and not moving.
Realized that the morning was better than in the past.
I was able to get Rosie out in the power chair to toilet first thing.
Fed her. Then took her to the dog park. (Forgot once again until I got there how I don't like it this time of the year because of the smell and flies)
new chairs though to sit in that were comfortable for me..I could slouch and put my feet up.
Rosie is a happy camper to be around other dogs. But. I would prefer to be by a stream. Need to find a place where I feel Rosie will be safe while I am laying down.
She seems to wander out of sight if she is not walking with me on the trail.
I was just trying to take my mind off of lyme and was doing well enough to do a bit...but had a really poor attitude towards people.
I know it was because I was not feeling well so just kept to myself as usual.
NOt ready to go home yet so drove past yard sales. Again, bad attitude towards people...traffic jams at yard sales but brain was working well enough to wait or go around cars.
Did not get out...just drove by slowly to see if there might be any reason to get out.
Still did not want to go home but knew I better.
My work out was getting on my bed and reaching over things to hook up new monitor.
noticed brain was able to figure things out even if I needed to talk myself through it.
(4 cords for monitor that I could hook up to monitor but only found two places to hook the other ends to CPU. Working fine.
REally like new monitor. I moved night stand towards the end of my bed and put CPU on top of old CPU that quit.
key board in my lap still or on my legs as I lie here. Pillows propped up so I am good to go.
next step is to see if I can figure out why I can't watch netflix movies on line.
Old CPU would run to hot so system would just shut down.
Tried new old CPU when I got it and kept getting the run around....download this program...program all ready down loaded...so uninstall and down load again.
I would do that and get the same messages.
Hopefully brain will work well enough I will figure it out this time as I think watching movies on this monitor is going to be nice.
Next is to take a shower and take meds and supplements.
Every thing is an uphill climb this morning with heavy breathing and trouble thinking.
But, at least I am able to do it for now.
Hope you all have a good weekend and a Good Luck Friday the 13th.
I will be back to read how others are doing later.
Posted by kgg (Member # 5867) on :
Busy day with my bottom dragging... I dug four holes to finally plant my raspberry bushes. Then I watered every thing. Then vacuumed the down stairs, changed the bed linen on two beds and cleaned one bathroom. I am off to my recliner right now.
See ya tomorrow! Kare
Posted by kam (Member # 3410) on :
Wow. you were able to do a lot of moving the body and brain today Karen.
I especially like the part about planting raspberry bushes and watering everything.
I just got back from taking Rosie to the dog park before taking her into the hardware store.
I walked in and sat on a stool while a guy cut 3 doles for me. Been trying to get the window situation taken care of since May so glad it is finally done.
100 degrees in the shade when I left the house.
AKW... I am not a pleasant person to be around myself today much less others. So, when I read your post I wanted to give you the raspberry!
Truthfully, I am smiling. That is so cool.
Posted by Lymetoo (Member # 743) on :
Kayak.. sounds like you're doing great. Give Kris a kiss for me!
Karen and kam... hang in there, gals!!
I did 35 laps today, 10 min on the machine, no arm cranks and some weights.
HOT here too. Unofficially it was at least 104 today.. I think the official reading was 100. My car said it was 107, so I figured 104 was about right.
More high heat tomorrow then COOLED down to (drum roll, please) 90!!! WOOO HOOOO!!!
That'll be the day!! I'm hoping this is our LAST round of 100 degree temps. We're approaching fall!!
Posted by kam (Member # 3410) on :
I am just glad to hear that it is predicted things will cool down. Wow. That is too hot but you were still able to trot! Good for you.
I was able to stop by the dog park to let Rosie do her business before going to the grocery store.
Used the electric cart again. Vision and brain is being weird again...are
But thankful I was able to get out and they had the goat's milk yogurt this time.
I still need food but at least I have breakfast.
I am looking forward to one of those mornings when I wake up with a clear head and clear vision and am able to walk along side a stream or even walk into the stream.
Posted by kgg (Member # 5867) on :
Today I processed cauliflower for freezing. Did up the dishes. Picked some beets for my neighbor and now I am doing laundry. So that includes stairs. I also got my quality time with my recliner. =)
I think summer is trying really hard to hang in there. Today it was 89. Thankfully, it was not a humid heat. But heat nonetheless. Hope every one is staying as cool as possible.
Best, Karen
Posted by lpkayak (Member # 5230) on :
i just have to let someone know this.
in my riding lesson today i did something i have never done. 61 years old! who says you can't teach an old dog new tricks???
theres somethng called a "half turn on the haunches" and i have never really done one. i've tried-but it never worked. well -today it worked. i can't believe it.
bessie and i are a good match. the instructor is really good for me to. she pushes me-but also listens when i say i need to rest.
i've also been craving more exercise. a week ago i started sit ups---hoping they might help the groin problem...it radiates to the lower back. when i started 5 were hard. today i did a hundred.
i'm not going to do more than that but i guess i will have to start carrying a weight if i can't figure out how to do them on an incline.
anyway...don't give up guys. it was a very short time ago i was not even walking.
Posted by fatherguido (Member # 25266) on :
Saturday was a good day.
I made a parachute jump at the DZ, visited my mother who just came back from Europe, and went to the birthday party of a close friend.
...and I felt great this entire day (bonus).
Posted by azdaisy (Member # 25357) on :
I LOVE you people!! you are my people. I thought I was all alone in my daily promises of movement and alas not today syndrome. I have a pilates reformer right infront of my tv and I look at it a lot! the movement makes me dizzy still so not yet for that.
I am really scared because I read, and believe the concept of those who do not get physically active DO NOT recover! and I am so weak. Who I used to be and who I am today...I feel crazy that this is me!!! Today I tried something ridiculous = Laughter Yoga!! OMG I actually detoxed and was dizzy from laughing??!!! there are apprearently clubs all over the world. Well, thank you for being here! I want to check in sometime and report that I've moved a muscle and not just from laughing!
Posted by kam (Member # 3410) on :
Welcome AZ Daisy and father guido...both your posts were fun to read. Looking forward to reading more.
Kayak..yahoo!
Garden fresh cauliflower is good!
I was able to drive up a hill and walk up a few stepping stones at another undeveloped area.
Someone had also put a small white plastic table there that I was able to sit on.
Rosie got her off leash time while I sat.
Then a trip to WM using the electric cart which means I had what it took to walk into the store.
Just got a few groceries. I haven't been doing very well with grocery shopping lately.
I go and then come home and still don't have much to eat.
Not sure how to fix that. Not sure what to get at the store lately that doesn't take prep time and is GF and sugar free and nutritious.
Posted by kgg (Member # 5867) on :
Glad you were able to get out for another jump, father guido! Still don't know how you do it!
Glad to have you with us, AzDaisy! I have read that a good laugh is equal to a work out. Can't remember specifically what they said it equaled. But good for you!
What a wonderful post Kayak! Love to hear progress! Long may it continue!
KAM, I hear ya on the food. I have always said if I had a choice between a cook and a maid it would be a cook! I am OK once I decide what to cook. It is the decision making that trips me up. And then of course in the summer it is too hot to want to cook.
Today, I made some gf bread, a wheat pizza dough, washed dishes, did a few loads of laundry and then reclined. Wish I could say I napped but could not fall asleep, so I read.
See you all on Monday! Karen
Posted by kam (Member # 3410) on :
Able to empty the silverware from the DW and 4 storage bowls.
Also able to put away the pantry stuff I got.
And take out the trash via the power chair.
Rosie and I just got back from going to the end of the block and back via the reclining power chair.
Still hot out.
I thought I might be able to make it to the 6 pm service at one of the churches down the block but it would have been another block and I wasn't up to it plus being able to get back.
Exhausted now and resting.
Posted by kam (Member # 3410) on :
The part about baking bread stuck in my mind so thought i would come back and ask what you use.
I may have asked this before and forgot.
Posted by aklnwlf (Member # 5960) on :
Just loved reading everyone's posts.
You guys are like family to me.
Me and the dog walked another 3 miles on Thursday I believe.
The heat is very fierce down here and makes me want to move!
So rest of the week na-da, zilch, zippo!
Not feeling to great today, had good intentions to putter around the yard but just couldn't face the heat.
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As I sit in my recliner and review how I got here again (!), I am reminded of pacing. ![[hi]](graemlins/hi.gif)
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I find if i stay in the heat too long my heart starts pounding. That cant be good.
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)
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