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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posted
Well, having meningitis means you can go that long.
I tried to shower at least every other day when I was sick, if not every day. To me it seemed important to try to get off the toxins that the skin expels. I was also sauna-ing when I was sick, so I had to wash off afterward.
Now, the hair is a different thing altogether, I'd often just wash it once, maybe twice per week.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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MDW005
Frequent Contributor (1K+ posts)
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posted
I'm with sixg. shower every day. Makes me stay positve,
Can't stand the thought of bugs and toxins on me.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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randibear
Honored Contributor (10K+ posts)
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posted
i shower or take a bath every three days. more than that and my skin gets so dry i have to use tons of lotion.
i'm more a bath person anyway.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
30 days when I was in the Army - does that count?
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wow, 30 days! Thanks for your service. I'm sure going without showers was the least of it . . . but that, alone, would do me in.
I can't survive more than 2 days before nearly passing out from heat stroke, it seems. I don't really sweat so my skin seems to hold in the heat, regardless of the room temperature.
Even going one full day, I fell sicker, like I'm wrapped in plastic wrap, unable to breathe. It's actually a reaction I've heard no one else experiencing. It may be all the toxins, but it's quite a severe reaction by day two, for sure like I'd nearly pass out from suffocation.
So, getting my skin clean just makes me feel so much better. But there are days when the choice is to either cook a meal or take a shower.
So, I always wash my face and that helps. Beyond that, a spray water bottle can be very handy, indeed.
The skin is a major organ of detoxification. Even just a water spray down, of sorts, can be very helpful to remove toxins and help prevent sores. Once a sore has developed, it can become very serious, indeed.
Cleansing the skin can also help put less strain on other organs of detoxification (kidneys, liver).
Whatever it takes, a shower chair, hand held shower head, wrapping in a towel and heading straight back to bed?
Drying off, dressing is what takes so much energy sometimes, just cut all that out and hop back to bed in a big towel. Drying will happen.
There are a lot of personal care wipes - some "no rinse"- avoid at all costs anything with chemicals and perfumes of any type. They can trigger excess porphyrins in patients with liver stress. They also often contain petroleum products and no one should be using petroleum on their skin.
Trader Joe's "Kitchen Cloths" - a microfiber small towel works very well, it's very absorbent, can be easily washed out in sink and dries very fast. Very helpful with a spray bottle. -
[ 01-24-2010, 11:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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springshowers
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posted
I am with six too. When in the hospital of course and a few days prior I did not bath. I was so sick. SO that is a week.
But .. even in other worst times at home.. during herxing and flares etc.. The bath is what helped me detox the most and helped keep me feeling less that horrible.
I good long soak... Even if you have to FORCE yourself to the tub... does a lot for us.
I used to not be able to skip a day washing my hair but in the last past months my hair is changing.
I did not have enough energy to Do anything with my hair or even dry it so it looks horrible most the time. But at least I had to wash it.
If you dry scrub your body (which takes some energy I know) prior the to bath. That helps too. Since home with a new picc line instead of port I have opted for some showers and I am missing my soaks and going to go back to them ..
I agree with all the comments about detoxing and how the skin is a major player ...
Sometimes forcing ourself to do things we just do not feel like pays off... most of the tmie!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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sutherngrl
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posted
Not counting hospital stays, just since dealing with LD, probably 2 days. I can't stand not to shower or bathe; even if I am about to collapse I will still try to do one or the other. But once in a while if I feel really awful I have skipped 2 days in a row. Thats when I become a "stinkin lymie"!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Starfall1969
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posted
I've gone a week, just because I can't bring myself to get in t he shower.
Doesn't happen often, but it does happen.
I figure I'm a stay at home mom, so who cares.
The only people I see some weeks are my family and my son's school bus driver.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
3 days at the most while in the hospital.. but always had a spit bath! Can't stand not having a shower.
ICK!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tracy9
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posted
OMG now I think I better go get in the shower....I'd take a bath but the tub needs to be wiped out; impossible for me (It's a deep jacuzzi tub).
I emailed my brother for the shower seat that gets passed around the family; he had a broken foot last so he has it.
But for tonight, your posts have freaked me out enough that I may just summon the energy somehow and JUST DO IT!!!!
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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posted
When I was healthy and able to go camping/hiking--six or seven days.
Now I have a shower seat and a hand-held shower head. This has made showering on my worst days much easier!
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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CD57
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posted
A week! Eww. I find taking baths much better.
Posts: 3528 | From US | Registered: Apr 2007
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springshowers
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Member # 19863
posted
Tracy.. Cant your son help you scrub that tub.
The bathing in the bath is much different than a shower.. But for now.. Do what you got to do.
You could use just some stool or bet a board and lay it over the tub and sit on it... sometimes we have to improvize.
I hope it makes you feel better.. Really. I think it will.. Just wrap yourself up in a nice robe afterward and try to make sure it is not an energy zapper..
Stay in as long as you can too.. and enjoy it as much as you can too.. and take that time for YOU>
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
3 days on a flaygl pulse. I made my husband wait to leave for work until I got out. Only to lay on the couch all day . I watched the tv show dirty jobs all day. Now my family knows when I am watching dirty jobs to leave me alone. lol
Posts: 433 | From new york | Registered: Dec 2004
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posted
What does your PCA do? So far it seems like not a whole lot. Why doesn't she give you a bed bath or clean out the tub for you. What's the point of having PCAs if they don't do anything for you?
Posts: 365 | From Sylvania | Registered: Aug 2008
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linky123
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posted
Ten days while working out in the woods on a fire crew.
I'm 50 years old and still have oily hair, so I have to wash it every day. Plus, a daily shower makes me feel so much better.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
2 months once when my leg was in a cast, and I was forbidden to put any weight on it or get it wet.
That whole time, I had to take sponge baths while lying in bed, never washed the leg that was in the cast, and had to beg somebody to wash my hair over a bucket once a week. Ick.
Since I started Lyme treatment, I have started taking a shower every morning and an epsom salt bath most afternoons, which really helps with my pain, and has the positive side effect of keeping me extra clean.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
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posted
Probably about 2 weeks. This was prior to diagnosis when I was debilitated. I can now get help taking showers or baths if I do get that sick again since I have a Personal Care Assistant.
It's misery being filthy.
-------------------- 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.
posted
You can also kill two problems with one warm shower or bath before bed. Get clean AND relaxed for a better night's sleep.
Posts: 365 | From Sylvania | Registered: Aug 2008
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seekhelp
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posted
Maybe time to dump your PCA? Why put up w/someone who can't do a job? I'd be ****ED. I wouldn't be happy wbout the family issues either. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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linky123
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posted
It never hurts to go to the top. Would it be possible to call the supervisor in charge of this PCA and get some better results.
Maybe one of your boys could ask a neighbor to help you make the call, since you don't have access to a phone right now.
Good luck and keep us posted.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Agree with seekhelp! Fire her/him and get someone who is caring. There is high unemployment out there...surely someone caring wants to earn money.
I found this to be a most interesting thread. I thought I was the only one who had so much trouble with bathing. I am happy that I can do it myself now.
For years my husband had to wash and dry my hair. Now I can manage it if I rest between stages of the process. I am sorry that I got rid of my old shower chair, though. I need it again.
All this makes me realize how ridiculous it is that I have gone so long without any disability compensation. If you can't even take a shower, how are you supposed to work???
We have reapplied (about the fifth time) and are endeavoring to collect and copy the boxes and boxes of medical records spanning 25 years. They say they want everything. I say they should just watch me try to shower and wash and dry my hair!!!
Actually, they agree that I am disabled and have been for years. The problem is that I was not diagnosed within the 5 year period after working(and paying disability for 25 years). So now I have to show records of old symptoms that correlate with current diagnosis.
But I digress. Bathing ability is certainly an interesting way to measure how well we are doing!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Ah Linky, your missing something-the PCA is her son!
quote:Originally posted by linky123: It never hurts to go to the top. Would it be possible to call the supervisor in charge of this PCA and get some better results.
Maybe one of your boys could ask a neighbor to help you make the call, since you don't have access to a phone right now.
Good luck and keep us posted.
Posts: 365 | From Sylvania | Registered: Aug 2008
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seekhelp
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posted
What makes you think that JR?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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springshowers
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posted
It is because of this statement Tracy made
:"I am not having an easy time of this. He will do NOTHING I ask. He was all about how helpful he was going to be and expects to be paid his PCA money no matter what."
But maybe that means something we might not know of and she may read this and explain.
But I thought the same thing when I read this but when I read on she says "she" when refers to PCA throughout the rest of it.
Maybe he helps with some things and asks to get paid the PCA amount to do it..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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cantgiveupyet
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LOL thanks for the laugh Lymetoo! You are very witty!
quote:Originally posted by Lymetoo: If there's a will, there's a way. ( no pun intended! )
Seriously though I agree with JR-
Also, maybe it is time to find a new PCA..someone that will help you take a bath...one highly paid PCA is better than 2-3 that dont help!
Then you could post about how wonderful they are and how much help you are getting!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I remember a two year period when a shower was an accomplishment for me. I did so everyday. But it would wipe me out and I would be on the couch resting for hours.
I refused to stay in bed. Couch was allowed. lol Now washing my hair was a major task and often over looked.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Too be honest....I don't know. I do recall wearing the same thing around the clock
I also recall not being able to take a shower and taking a bath in stead when I was able...but no bath tub here.
And I found it was strange that my body was not getting sticky and that needing a shower feeling like I use to have before lyme.
Fast forward several years...my legs usually start with the sticky feeling now
I need a shower today but don't have what it takes to do the multi movement.
Taking a shower is still something that I am doing well at if I am able to take 2 a week.
Before lyme, I liked to take a shower in the am and then soak in the hot bath with candles and read a book in the evening.
I have a shower chair and use it at times still....just when I think I no longer need it I go through a period of time where I do....like now...but the multi tasking that will take to sit in it is out this am...perhaps later today.
I use to back pack so I did do what we called a sponge bath on some days...but that too was infrequent
The good news is that my body feels like it needs a shower now every day...just can't do it.
With time...hopefully
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Hoosiers51
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posted
Taking a shower normally makes me feel worse....for some reason it is very taxing to me.
I can sometimes drive, sometimes run very brief errands....but showering to me is harder than both those things, because of the standing in one spot, the heat, etc.
So, I normally try to shower only every 3-4 days. I would prefer to do it every other day, but for right now, every other day just wears me out too much to the point that it's not worth it.
Before my relapse (from a vaccine) when I was feeling relatively better, I was showering almost every day, and expelling that energy wasn't even phasing me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
While talking about hygiene, I also thought about brushing my teeth.
Now, able to brush teeth in the am and pm most days.
But, do recall when in years past that wasn't do able...then started being able to brush them in the am and not both am and pm.
I can also count the mount of days I have been able to put on mascara and eyeliner since 2001 on one hand.
And I no longer fix my hair but have kept it short so it is wash and wear.
Recently started coloring it again with the help of a lady who owns a beauty shop across the street.
I get the non toxic hair dye and she puts it on me for no charge, then I head home in my power chair and rinse it off.
Sitting upright at the hair stylist is not an option at this time for longer than 10 min...so it works out well.
Not sure why I can sit longer in the power chair if I am on the move versa's just sitting...need to be reclining in quiet if I am not moving.
Also able to cut toe nails now but still a problem.
I think part of it is due to the weight gain but not sure.
Finger nails don't grow so don't have to worry about that.
Nor, does the hair on my legs anymore so don't have to worry about shaving my legs.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
My kids went for long periods without showering. They felt worse after showering. It would take a few hours for them to recover from a shower.
My younger son uses a chair in the shower. He would probably be OK without it now, but needed it for several years.
My husband installed water filters on their showers and that helped somewhat.
Now they shower 2-3 times a week.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I had forgotten about the water filter thing....
I recall those times when I would take a shower or bath and need to lie down for an hour or so before i could get dressed...can't imagine being a kid and going through that.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
5 years....i took baths up until the age of 5
Dave...now showering regularly
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Tracy9
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Member # 7521
posted
I have to have at least three PCAs per the program I am on. My son is one of them. I actually have several but many are teens. They are all pretty unreliable and I am too sick to manage them well.
However put all together, they do help a lot.
My new home nurse came last night and was totally awesome. She was very caring. She was firm in that I am to stay in bed for two weeks, not get out and move without assistance. She doesn't want me left alone, wants my Life Alert up and working. She is sending PT into the home to assist me there, and get me a shower chair, hand held shower, cane,etc....I got a walker from the hospital.
She is also sending in a home health aide twice a week to help me shower. For now I am not to use the shower, but only the bathtub.
She is the nicest, most caring nurse I've had yet.
My kids are pretty self centered, but vacillate between being helpful and not. That I have to work on as I get better.
My emotional and mental health is the best it's been. A lot of negativity has left the house and I feel very peaceful and relieved. I am however in a lot of pain, and the weakest I've ever felt.
I look forward to getting back to the IVIG and getting better soon. I am hoping this was just an, albiet big one, blip on the screen.
Thanks to those of you who have been so supportive, and to those of you who aren't, please, please just refrain from commenting on my posts.
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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posted
Glad things are looking better for you- I hope in the future you will protect your privacy and that of your family by not bad mouthing those who disappoint you. Not a good practice on a public forum-and I offer that suggestion in the sincerest way possible. Please don't confuse supportive with enabling.
Posts: 365 | From Sylvania | Registered: Aug 2008
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kam
Honored Contributor (10K+ posts)
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posted
Tracy,
positive post...although I know how difficult it is to balance between managing help and have the help not affect your health when your health is so low.
As I know you are...so looking forward to when you have gotten through this rough time. It will get better although at the time I know it seems like this is going to be your life ...NOT
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Tracy...you may have all ready discovered it but scrubs work great for around the clock clothing when it is too difficult to get dressed
A friend suggested this to me and it has worked out well.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tracy9
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posted
I live in my pjs, which is fine since I dont' really leave the house, and have lots of comfy ones! And when I do need to leave to go to doctors I have comfy elastic waisted fleece pants and sweatshirts.
My PCAs are doing much better. Ryan's girlfriend has totally stepped up and is doing a LOT. She is basically running the house now! And today Ryan actually successfully got up at 5:45 am and got Cody on the bus for me, which is a very big deal for him.
I think things are falling into place a little more....just needed a few days. My "chef" PCAs came today; they hadn't been able to make it in 3 weeks, but they came and cooked a bunch of food. So timing is going really well now with people showing up and I feel blessed with help right now.
Tomorrow, home nurse coming to check on me and take vitals, PT coming to evaluate me for services, and Home Health Aide coming to shower me. I'm exhausted already!
I slept 16 hours last night. The kids are behaving today. Ryan just flushed my line and is more agreeable today.
Sometimes, it's a bad day. Sometimes, it's a better day! My pain has been steadily worsening but I got my meds finally, though I haven't touched the pain meds....wish I'd woken up today in time to call the neurologist about this. Definitely will call her tomorrow.
Headache is back which I don't like at all. It scares me because it was so severe before; but then again it's almost 9 pm and I haven't eaten a thing today since I slept till 5, so I'm going to go eat.
Again, thanks for all the great suggestions and help.
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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Member # 3410
posted
Sounds good Tracy....you are really going through a rough time of it and have been....
It will be so nice when the keet load is less or they go to sleep. HA!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tracy9
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posted
My keet load IS less, I am actually dealing now with the autoimmune disease primarily. I am very grateful to have kicked a lot of the LYme to the curb and am definitely in remission from Babesia if it isn't gone for good!!!!!
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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