kam
Honored Contributor (10K+ posts)
Member # 3410
posted
During my recent telephone consult with Lyme Doc's assistant I was asked what my average day is like.
I was thinking of this while I was driving out to a trail head about 5 min from my home.
Today was a good morning...with the help of excedrin.
I was able to get in the car at sunrise and drive out to the trail head...walk 5 min, rest and then walk out.
Back to lying in bed next to the computer now until I am doing well enough to get up and fix breakfast and take meds.
I also slept in the scrubs so did not need to get dressed this am .....saving energy there
And I did not need to scrap the ice off of the windshield...saving energy there too.
If I am not able to be on my feet from the community room to my car, I head out the door in my power chair and either take Rosie across the street to toilet, or downe the quiet street or around the block...depending on how well I am functioning.
This made me think of priorities.
First priority is to get Rosie out three times a day to toilet and exercise a bit. 4 if I am doing better than most days.
Second is to fix something simple to eat and take meds and supplements.
After that, it is icing on top of the cake.
yesterday I was able to fold some towels and put them away....towels that have been waiting to be folded and put away for maybe 3 weeks now...maybe longer.
I also was able to start up the dishwasher this am.
On average, I guess I am able to empty or fill the dishwasher about once a week...never know when the brain and body will be doing well enough so just have to keep trying until I succeed.
And I am able to go to the grocery store now once a week via the tram and my power chair...don't have a lift on the car so need to be dependent on the tram to take me places in the power chair.
Sometimes I have a good outing grocery shopping.....need to go first thing in the morning when it is quiet and usually shop without a list as making a list is rare.
Trip is usually under 1 hr including traveling time.
It is also a good outing if I am able to put the groceries away after wards. If not, I jut put the frozen or refrigerated items away and then rest.
Not sure what the average is on taking a shower. I can take a stand up shower for the most part now.
Guessing that happens once a week or twice a week although I would like to be able to take a shower more frequently.
Another priority is to try and get 3 cups of tea in me day: detox tea, licorice tea, thisle tea and or pau de arco tea.
Usually am not doing well enough to do this....so detox tea is first priority.
Ok need to rest now.
Just wondering how things are going for you and what you are able to do now.
I am seeing improvement which certainly helps me to keep going.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I wish my docs asked me what an average day was like. I dont think anyone has ever asked that before.
for me I wake up during the week at 730a and get 1-2 kids ready for school. It depends on the day who is going where. I also take most meds now, feed and let dogs out
pain level on waking 6-7 out 10
that means getting everyone dressed, fed, luches/snacks made. one on the bus and drive the other one...
I think this is the hardest part of the day for me.
If I have the house to myself, meaning both kids are at school, I have been going back to bed, this is at about 930am. pain level maybe a 5-6 now
If i dont have the place to myself this means i have to clean up after the little one, make luche and snacks and sit on the couch while we watch movies and play games. much of this is VERY difficult for me. I need several "breaks" where i go to my room for 15 minutes or more where its comfy and quiet.
I lay in bed awake for a few minutes and pretend to be a good mom again. my dad is around in the same house (diff section so my son is never alone)
this is a new thing having the place to myself. I plan on using the time for appointments and PT type stuff.
I also try to shower and complete 3 tasks or whatever is on my list. I try to have a list every day of easy things to accomplish. take meds again
today- nothing on my list. I pick the kids upafter 3 and then its activity time, or support group time, homework time etc...pain level at least a 7 I let the dogs out several times a day.
then its dinner, or maybe dinner is first .lol/. take some more meds/supps feed dogs and let them out
then Bathing kids and putting kids to bed. then its lights out at 8pm for me IF I make it.
most of the time He does the bedtime part because i am too sick and tired at night. thats when my pain is the worst. pain level 8 average dogs out again,
I havent been making it past 8-9pm in weeks. take the last of meds before bed
phew, I am tired just thinking about it! and boy do my muscles ache.I really dont know how I am doing all this now that i see it written out in my face, no wonder I am on the verge of collapse
thanks for asking kam!
Posts: 3905 | From USA | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wonder why I do so much?!!!!
Maybe it is because nobody else in my house does.
Average day?
Wake up at 4:30am after 6.5 hours of sleep.
Get ready for work.
Wake up kids at 6:00am. Get them ready for school.
We all go to school together at 6:45am. (I work at their school).
Work with children (speech therapy) from 7:45-2:40.
Gather up children and come home.
Do homework with children. Wash at least one load of clothes.
Drink one cup of coffee.
Relax between the laundry and cleaning and homework.
Make dinner. Eat. Get the kids in a bath and to bed by 8:30.
Watch about 45 minutes of TV.
Fall to sleep around 10:00-10:30pm.
Start over again.
The weekends are more work with tons of laundry, the grocery store,
Horseback riding lessons for my daughter, etc.
I think if I ever get the chance to stop....I will really relapse.
I don't think about pain. Just part of my day.
I do think about napping all the time though.
Just don't ever get the chance.
Hope both of your days get better.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My day is pathetic usually. At least I feel that way.
Wake up late (or can't get out of bed) until 11-12.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Don't know why...but i find this interesting. Amazing what we can do with so limitations
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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julielynne4
Unregistered
posted
I never thought about this, either. But I agree that it's a pretty significant question, and I think it would be nice (and informative) for our LLMDs to ask.
My weekdays: -wake up 5:30 shower and get dressed, drink a cup of coffee -6:15 leave for work -(hubby gets the kids off to school and day care, thank God) -work until 2:30 (special ed teacher, high school) -pick up kids from bus stop/sitter at 345 -4:00-5 sit on couch and zone in front of computer, asking the older kids to get snacks for the little ones -I do not get up unless I have to (which is often, lol) -5ish make dinner (or call for pizza) -6-9 - help boys with homework, make lunches, clean up dinner, give girls baths, read books to girls, put kids to bed) 9-11 - sit on couch with hubby who is just as tired, go on lymenet, facebook or other 11-11:30 go to bed (am woken up at least 2 or 3 times each night by daughters' night terrors, bed-wetting, or ear infections)
Weekends: sit on couch. sit on couch. grocery shopping. nap. church. nap. sit on couch. Prepare for monday
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I know when I had an active life and then I had to start taking Friday's off work. I would be down for 3 days and then return to work.
But, then I was not able to sit upright at work or walk to my classroom...they would let me use the golf cart on campus to get to my classroom, do simple math, read, etc until my body shut down and I had to call my supervisor to be in the classroom while I laid on the floor in the office.
I was too out of it to drive home. Medical on sight was not able to get a blood pressure reading or find a pulse.
I have gone from being bedridden to being able to do a little bit each day...at least I can fix simple meals for myself now, eat in the recliner with a tray and get my service dog out to toilet via the power chair 3 times a day.
I am seeing improvement but it is very slow. I can see parts of my brain coming back a bit.
I am so thankful for what I am able to do now. I am so concerned for those who are still bedridden and in lala land.
Julie, sounds like you have found a balance as much as you can.
Geneal...concerned about you too....do something fun today...doesn't take long..just a minute or two of fun.
Blue..same with you...sounds like you too have found a balance of doing what you can and finding a way to cope and take your mind off of lyme during your down times
Concerned about you too Melissa...guessing we all need to find a minute or two of fun now and then.
I was able to run a errand or two yesterday which is unsual for me.
I saw a guy in a truck going down the road with a Bison head in the passenger seat of his car. I kind of thought that was worth my trip.
Some people take their dogs out for a walk...he was taking his Bison out for a trip I guess! Wonder if he had a name for it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Oh wow, a bison head in the passenger seat??!
Good stuff.
Posts: 423 | From Upstate NY | Registered: May 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Blue..I like the squares. How did you do this??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
As I am reading this from the ones that have learned to adjust with lyme and its limits...I think back on how long it took me to figure things out.
Hoping this thread will help others who are on the learning curve...doesn't it seem like we are always on the learning curve...just when we think we have it figure out...there is a new curve in the road.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I have no social life really, don't go outside more than probably once or twice a month. Without more energy, I can't do much. The exercise I do indoors is what I save my energy for since it's keeping my heart alive, blood moving and hopefully helping me detox.
It doesn't decrease the inflammation though, it only numbs it for a short period. It took me many years to be able to do that type of exercise. It may seem obvious at first that since I can do 1 hr on the bike, that it translates into function in the real world -- but it doesn't. Walking is tough since I have foot problems (flat feet that don't seem to respond to proper support....yet. Still trying to find something that prevents the over pronation).
I want to spend time being productive, and I'm not. This disease is still my number one project and will remain the primary focus unless the symptoms alleviate.
To make the little boxes, just use this:
[ list ] (Keep the brackets closer together. I spread them so it would not post)
[ * ] (Same with this. This code makes the square that you're so fond of. Hehe
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Blue...I have no social life either with the exception of going to the dog park now and then ...
..even when I go there I usually keep to myself as talking and listening will cause me not to be able to walk out of the dog park...something with the brain
....And when I am able, I do stop and talk to one guy who seems to be standing out doors a lot at the complex smoking his cigarette..I try and stay down wind from him...
...or is it up wind...upwind..away from the smoke
I have tried being around people but there are very few I can be around with this.
I have often wondered how i would do on horseback but don't have the means to give it a try at this point.
When I read about your difficulty with walking, I thought of horseback for you too.
I have difficult sitting upright so most likely would not last long at all and don't have the strength needed to ride either..but I keep dreaming about it.
My power chair really helps me get outside. When I first moved here going across the street seemed further than I could tolerate and even then I would do the tossing my cookies thing.
And be in such a brain fog that I kept wondering why the moon seemed to be shining in the same spot for months.
Then the fog cleared and I realized it was some kind of radio tower dish.
Now, I can go around the city block in the power chair..I learned to travel on low traffic roads as the noise and movement is still a factor.
Not sure if you are up to a power chair. but, it has really helped me.
I rented a scooter when I first came down sick. years later learned that power chairs are much better for me than scooters...something with the weakness in the arms and the brain having to do more
I think you have been fighting this for a long time too.
I will try the bullets later. Brain can't handle that right now.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
my social life is also non-existant.
I went out a few weeks ago. It took 3 days to prepare my body and 4-5 days to recover. I couldnt sit still and the pain was unbelieveable. I actually had to leave early.
I was relieved to leave but I was disapointed.
I havent been out with friends since.
Posts: 3905 | From USA | Registered: May 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Amanda...I was just about in tears reading your average day. Not able to take it all in at this time.
I saw things where you have learned to adjust...this is good.
Also hoping others will come along with ideas that will make life more do able for you too.
Hang in there.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I am guessing you are still in High School. Although I am in University, I can relate to your day. I struggled through class (or fell asleep, or missed entirely), and it was horrible. I took a reduced course load, but in retrospect, I should have reduced it even more.
There are resources to help people in your situation. I know people in High School with Lyme who either have tutors who come to their house (part time or full time), and some who just have a modified program at school. The US has an IAP or EAP program or something.
You need to find someone (your parents would be best) to advocate for you, since schools aren't usually very good at listening to the students. You might want to try to continue to do school the way you are, but you could make your quality of life so much better. When I tried to do full-time school, I just made myself seriously depressed and even sicker.
It isn't right for you to have to abandon any hope of a social life, or even just enjoyment, to finish school. And, if you are sleeping, or unable to concentrate, you really aren't getting what you should be getting out of school anyway.
There are a bunch of parents of kids with Lyme on this forum. I am sure they could help you and your parents investigate your options. At least take a look, and see what you can do. And if you want to talk, feel free to PM me.
Nicole
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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