I feel like I've got a life sentence...
 

I found an excellent PT and I'm trying to follow instructions as best I can but I slip alot because it seems like I'm not really allowed to do anything. I'd like to think of what I can do but I'm stuck in a negative pattern right now.

no Driving, cutting, cooking, can opening, chewing gum, no lifting, laundry, ironing, folding, no grocery shopping, no dog walking or tug of war, don't eat chewy foods or foods that I neeed to cut?????, no lifting or reaching above my shoulders, no reading without a holder, I need to drink through a straw, no looking down instead just dropping my chin, sit up strainght from hip/waist not shoulders, knees down at an angle no straight, lumbar support cushion, arm rest while sitting but not if using keyboard, use a split keyboard w/ limited use, mattress topper, sleep on my back, lots of pillows, headset for phone, I'm sure there is more but is this a life sentence or what???? This is no way to live and i'm having a hard time with it.

Welll...
I did the "not much of anything" for a couple of months in 03- just because I barely could do anything at all :(
- but in the long run I think it was a good thing for me. Plus I was lucky to get some decent PT persons during that acute phase.
So maybe your PT is on the right track.:)

Sharon Butler recommends a similar plan for RSI/TOS.
rest
very gentle stretches {per her book or website program}
do only what is necessary for daily activities & personal care
rest after doing activities to offset that usage
-of course
drink lots of water
relaxation
proper breathing

If you follow the plan and put the time in now -you may come out much better off. I know you may get stir crazy or cabin fever LOL.
I got a subscription to Netflix and watched lots of movies, since I couldn't even hold a book anyway.

It's great that your PT is aware of these things that can be triggers for us TOSers, and hopefully the therapy is as good as the tips. Part of controlling TOS instead of letting TOS control you is learning to adapt your behavior so you avoid setting off flares if at all possible.

That said, a lot of activities maybe can still be done, or at least partially done, they just need to be done differently, or for short periods of time, or with frequent breaks. And YOU are going to have to be the judge of which activities make you flare, or how long you can do something without paying for it the next day. It is a new life, a different one. But you can still have a life!

Driving used to be a real nightmare for me. I actually sold my beloved Honda CRV and spent a lot of time looking before settling on a 2004 Dodge Stratus, which is a great car for me, cause the bucket seat cradles my achy neck and the seat is low so my hands sit naturally at 5 and 7 on the steering wheel. I don't use it like I should, but a pillow under my bad arm makes driving even better. Almost all of my driving is within 30 miles, very rarely I'll drive 60 miles to meet my Mom. Anything over that and dh is the designated driver!

With laundry, a major problem is the washer and dryer are in the basement, and I'm not real steady on the stairs carrying a laundry basket, even with a light load. I can put clothes in the wash, except big loads of jeans, and take them out of the dryer, but don't transfer the wet things between. And I fold towels, socks, undies, anything that I can do with my arms close to my body and without having to shake out!

I lift things up to abt 8 lbs, but don't hold or carry them any longer than absolutely necessary. Sometimes I'll do little shops, or grocery shop with dh, but I find the grocery store just exhausts me - too loud, too big, too confusing - it really is stressful now as compared to before.

I do use a straw most of the time as I find it is more comfortable, and a steak knife cuts most food easily, but I have had dh cut my meat on a few occasions - a bit overcooked I think!

My advice is to decide what activities you like to do are most troublesome due to TOS - driving, reading, cooking, what-have-you. Then really focus on how you can adapt those things so you can still do them, even if on a limited basis. There are a lot of good disability aids out there. When I read, I prop my book up on a pillow, and use the armrest of the sofa for my bad arm - still not convinced of the book rest thing. I packed up the stoneware and bought Corelle, so I can load and unload the dishwasher.

You do need to pay attention though to see what triggers your flares - that knowledge is the key!

In the meantime, don't be too down on yourself if you forget a piece of advice or find it impossible to follow it all - we're all only human, and we've already got so much on our plate with TOS. Stressing over it will only make you hurt worse, you don't want that, now do you? :eek:

hugs,
beth :hug:

Thanks
 

Thanks to you both! I know there is a light at the end of the tunnel, I think it got blocked by last night for a moment with my pity party.

We have gone to paper plates and plastic cups, that was one of those adaptable traits I just made over the years. Just like not drying my hair anymore unless it's a wedding or something special. I guess ther is a device to hold your hair dryer but I haven't seen one before other wise she said to bring you head to the dryer. Has anyone else?

Sorry you're having such a hard time. I had so many years pain free it has been dough going back. I believe I am resistant because I don't want to believe it has come back. I have found keeping my hair fairly short is helpful. It dries quicker on it's own and if I have to blow dry it it doesn't take as long.

Paper plates and cups are my friend also. Trying to get kids to help more with laundry because that is the worst. Boys have football so it's school clothes and sports clothes every day. Plus my daughter has field hockey, also to outfits per day.

Oh well!

Linda

Withmore
 

Wow..thats a pretty long list....my p/t or doc have never told me not to do anything on that list....ya suppose that's why I hurt all the time?? lol

Stick with it, I'm sure it will pay off in the end. It will be better than having higher pain levels. Vent and share when you need to...that's what we are here for!!

Rach

It's so hard
 

I was going to make a thread of my own until i read this. I am with you on
all those counts except chewing gum and i don't have a dog to walk :(

It seems i haven't been to the tos forum forever

The IT pump continues to greatly help the rsd pain, but it does not cover
the pain from tos - the numb fingers, spasms and sickening headaches.
that is the same if not worse because i felt good & tried to do things & then i hurt so much. i went so slowly but no matter what, like you the tos pain is there. i decided i'm going back to not doing anything anymore. not even dust 1 room a day. i tried that but left me sore and achy even tho i didn't reach.

i am in a big huge tos flare - so much it makes me nauseous.
and of course work comp won't pay for the med my doctor orders for this.
they make everything twice as bad.
I go back to bed every 2-3 hours - not like I have a choice.
Staying too long in either place causes pain levels to rise...

after surgery i was looking forward to driving but not with these shoulders and the Knife that neither I or anyone else can pull out of my back.
my doctor does not believe in the pump plus pain pills - strange how it helps rsd pain so well
the pump continues to greatly help the rsd pain, but it does not seem
help tos -- the numb fingers, spasms and sickening headaches, heavy achy arms, etc.
those sx are the same if not worse because i tried to do things.
then i hurt so much.
decided i'm not doing anything anymore. not even dust 1 room a day.
now i am back to where i was BP (before pump)!
i am in a big huge tos flare - so much it makes me nauseous.
and of course work comp won't pay for the med my doctor orders for this.
they make everything twice as bad.
I go back to bed every 2-3 hours - not like I have a choice.
Staying too long in either place causes pain levels to rise...

i was looking forward to driving but not with these shoulders and the Knife that is stuck in my back. my doctor does not believe in the pump plus pain
pills.
if i hurt he ups my pump dosage. i do agree with doing that.
some days are better than others.
so i am working hard on getting back to the good things in my life, the blessings....like my husband, grandchildren, the whole family and many friends. even that i can get out of bed ! that is how i continue on. even before i get out of bed, i focus on the good stuff in life. that seems to set my atitude for the day... because there are alot of positives too.

i didn't want this to be a huge vent on your thread, but it seemed senseless to start another one on the exact same thing.

i wanted to say you are not alone in not being able to do much.
i know that doesn't help you feel better or able to do more things - just that you have a lot of company and You are 100% right, it is no way to live.
Yet we go on anyway hoping for a better afternoon, day, week, month....
take care,
hope

Unfortunately we all have to deal with alot. This week has been hell for me and I have work issues that have to be dealt with that only I can do, and, actually I can't.

I am sorry. That sounded like I didn't care about what you were going through. Not meant that way at all. Sometimes it gets tough. Please know I am in support of you and understand what you are going through as much as I can. We all end up with different levels of pain at different times. I'm sorry. Linda

here here.
I am really bummed today because my husband just has no clue. somehow he is generally supoportive but I swear he just checked out this week. hello? I just had surgery last week...i cannot be responsible for taking the little kids to and from school andbeing home alone with them all night. if i am really really lucky i can get them to bed, but it is such a sturggle. crap. then after i do all this (all this week since my mom left tuesday morning) so he can go to work (he took like one day off when i was having surgery and an hour or so off to come and pick me up from the hospital) he dares to give me crap the last two nights when we get into bed that i don't hug and kiss him enough. I wanted to say something along the lines of kiss my @ss....but really, WTF?!?!? He is also on this 'we should have more kids" and "how long till youy think you can go back to work" and"when can you start working out so you can lose some weight" and all the other crap that already bothers me enough but he makes it 200x worse by nagging me about it. blech!!! It just is really bothering me today because I woke up in a lot of pain and it just never got better.

oh, he is home got to run

[edit] sorry about this, what a lousy day.

Hope, I hope that you can find a way to feel better. noone deserves it more.