posted
I don't know how to handle my situation,I have become so disabled from this disease,I can barely
get around.I need assistance with simple tasks
like getting up from a chair.My wife must
keep working,so I'm left alone daytime.Until
now,I have been getting by,but now it's almost
impossible alone.Any help on how to survive?
Posts: 71 | From Mass | Registered: Apr 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi beatlyme, your post breaks my heart. You know, when I was as bad as you are all I did was watch TV and read. Day in and day out. And I cried a lot.
I didn't feel like talking on the phone - it took too much energy. And no one came to see me, either.
I wish I had good suggestions on how to survive. All I really can do is sympathize. I hope, with treatment, you can get out and about sometimes soon.
Take care, Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I'm so very sorry for your horrible situation. I've been alone a lot through this disease and it can be very scary.
My Mom was my main caretaker but the time did pass very s-l-o-w-l-y.
Could your wife get you some books on cd? That has been a WONDERFUL respite from my malaise and boredom...and it helps me escape my fear for a little while.
I have a portable cd player with earphones that I can listen to in bed. You can rent cd's at Cracker Barrel or find a club on the internet.
It's been a life saver for me.
Now, if you're more worried about physical handicaps and not being able to get around and make meals for yourself, you and your wife might want to consider hiring a caretaker.
Even a highschool student who could come and check on you before and after school and do the little things you need help with before you get comfortable in a chair or in bed.
If you need more assistance than that, I would look into healthcare help a few days a week. You're going through a rough time and praying that this severe stage is temporary (which it most likely is), it would be worth spending the money for a caretaker for your safety.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I posted some things that have made a world of difference on here somewhere.
But, I applied to the county for help and received 4 hours a day.
When I moved to AZ, I received 4 hours a month.
But, I am doing better now.
My service dog helps me get up from a chair. I call her over and have her get in front of me and then I tell her to brace.
I put one hand on her rump and one hand on her shoulders.
I put as little weight on her as possible.
It is more of a physics thing...not sure that is the word I wanted to use.
But something about having the weight forward and over and then her to help me works better than having a chair in front of me to help me get up etc.
I also know they have recliners that will help you get up but cost is a factor.
My reclining power chair as made all the difference in the world too.
I am able to get outdoors. I need that.
I also had small power chair that I used indoors to get around.
I no longer need it unless I have over done it.
Handicap bars in the bathroom help too.
And a shower chair.
And putting the computer next to the bed so I could lie down while on it.
When I first moved here, I was more part of the dead than the living.
some of it was because I needed help..more help than the county was providing.
I also got meals on wheels when I first moved here.
It was good because I was scared at times that something would happen and no one would know.
Since they came daily, I knew at least they would know something was wrong.
But, I felt worse while on meals for wheels. I later learned that I do better on a gluten free/sugar free food intake.
But, I also have had some major other factors that have helped too.
You will improve.
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
Service dogs will also pick things up for you and turn light switches off and on and open the refrigerator and the cupboards.
Not to mention being a great comfort especially if they are tuned into you not so good days and don't leave your side.
I have no clue as to why that is so comforting but it is.
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
I also started getting sleep.
And I learned that I do best in the am until around 10 am.
Then I need to be down until after 3 or so.
IN the past, it was not until after 3 pm that I would be able to function.
I went without food where I use to live when I did not have help and could not get up to eat and did not have the power chair.
It was good when meals on wheels came as I was hungry but not able to fix something myself.
I also have learned to fix easy things now.
The deli has premade broccoli salad which I like and fresh fruit salad and beans.
The butcher has premade chicken paddies that I just need to put in the oven.
IN the past, I would not have been able to do that.
I use paper plates and cups and bowls to cut down on dishes.
And because I use to drop things a lot.
REcently started to use regular dishes and glasses.
But, I put them on a tray and eat in my recliner.
In the past I needed to lie down and eat..too weak to sit upright or recline.
I used a straw to drink.
I have odwalla juices on those days when I am too weak to swollen food.
Frozen fish fillets have also worked out well for me on my better days. You just need to put them in the oven too.
I use a timer. Brain will not recall when I need to take them out.
I think the biggest lesson for me was to get off my feet and allow the power chair to move my body.
I had my power chairs donated to me. It took a long time. I knocked on a lot of doors.
But, looking back I was not well enough to be out in a power chair and would have put myself in harms way.
WE have a senior van here for transportation.
It is noisey and rough and I dont' like it.
But, it does get me out of the house.
don't know what the transportatin system is for your area.
I am not a senior yet but due to disability am allowed to use the van.
Wearing myself out. Need to stop.
Hope this helps. I know we are all different at where we are with this.
I noticed some suggestion books on tape, etc.
I still can not listen to music or books on tape or read.
I pass the time next to the computer playing games.
At first it was simple ones. Lately I have been able to do scrabble.
And I no longer have that sick flue like feeling while playing.
I still need to limit time on computer or I will get taht sick flue like feeling.
Just connecting with others via the computer helps big time too.
Those who understand.
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
Thinking about you again.
Another thing I did when I was so weak and sick was to wear sweats or jogging outfit around the clock for a few days.....
....Until I was strong enough to change.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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keep posting! i found this always helps when i am down in the dumps. my family and friends are supportive, but sometimes you need to talk to someone who just gets it-and the people here do.
so keeping fighting. like your name says, you can beat it. and when you do, it will be one of your life's greatest victories!
Posts: 368 | From freehold, nj | Registered: May 2007
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bettyg
Unregistered
posted
beat lyme,
have you been approved for SSDI, disability inurance benefits, and are ON MEDICARE NOW??
check into this, if your dr/physical therapist have MEDICAL DOCUMENTATON YOU CAN'T GET OUT OF CHAIRS, ETC. even with PT; medicare will pay 100% ?? for this.
check with medical equipment place nearest you to make sure you have all current info on how to do this.
or perhaps it was $300 ... sorry; neuro lyme!
hubby didn't go thru PT so medicare declined this even though he has parkinson's severe rolling hand tremors!!
i love it; 1.5 yrs. ago when i had a new hip put in, i lived in that for 3-4 weeks to sleep, etc. it's been a lifesaver.
kam has excellent tips for you since she's been thru this too! best wishes!! xox
IP: Logged |
posted
I empathize with your situation! Others have made good suggestions. I was lucky that I had a partner and friends that could help me, and I never got quite as bad, since I had a few short courses of ...'treatment'....
Do you have a cane? That may help, if not. ave you started treatment? If so, at first you may have some really hard times, but then things will almost surely start to improve.
I found some herbal things helpful. To mention a few: "Nutrijoint"- supplement. "Joint-ritis" roll-on arthritis reducer.
The ther's always aspirin or ibuprofen
Note: I think 'celebrex' has been taken off the market, but in case it hasn't, it's something too avoid! I was SERIOUSLY INJURED by taking that- it ate holes in my intestines, causing severe abdominal pain and rectal bleeding.
For GI distress caused by pain meds, for me the herb Yarrow was very helpful.
Be sure your wife helps you get "set up" in the morning and see if you can find someone you can call to help, if something should happen. If worse comes to worse, there are probably agencies you could call, or even, call an ambulance and go to er (a last resort, though!), depending on your ..'insurance'... situation.
DaveS
quote:Originally posted by beatlyme: I don't know how to handle my situation,I have become so disabled from this disease,I can barely
get around.I need assistance with simple tasks
like getting up from a chair.My wife must
keep working,so I'm left alone daytime.Until
now,I have been getting by,but now it's almost
impossible alone.Any help on how to survive?
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
posted
I'm going to suggest reading all about this disease. At the bottom of my post, there is a link to the Lymbrary. It has lots of information for those who have been lymed.
There's also TreePatrol's information--again at the bottom of my post or at the top of the Medical/General Forums.
Reading and searching here on LymeNet and other forums can be invaluable! When you're fighting a disease it's best to know what you can about it.
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