don't know if anyone here has had a similar problem but thought I'd ask. had a stroke in December but also had the preexisting problems of fibromyaliga and arthritis (I'm only 46) was at the rehab hospital all month and they do give you therapy 4 to 6 hours a day but they therapists seemed good at balancing it and understanding too much too fast could cause a flair up of the other stuff and I'd end up worse off. (also there you weren't worried about cooking washing up cleaning and all that) The at home therapists seemed good with it too and I live alone with no close relative to help more than once or twice a week to get groceries or to doctors. Any way about a month ago was finally driving enough to stat out patient therapy for the occupational therapy part (arm/hand...will start the physical therapy leg/foot stuff next week which will mean 4 days a week when I was already barely managing daily living) been having a Very Very hard time getting this therapist to understand the situation with my other health matter and that I do understand you have to work at it but with me it may have to go slower to keep me moving but not set me back. Yet she still keeps constantly pushing me too much- half the times I've come home to exhausted to do errands for or meds I had planned or even make dinner. Each time I tried to politely explain that there IS NOT ONE THERE TO DO THAT FOR ME OR WHO I CAN EVEN CALL if I get home feeling that way. Shee kept giving me a shrug off likr I'm just being a slacker about it (like WTF why would you Not want to get beter at my age in my situation) Even the last 2 weeks when I told her certain aspects of my mobility have actually gone DOWN which she could even see but she kept on the same and me trying to be a cooperative patient went on. YESTERDAY WAS THE FINALL STRAW not sure what she did or if it just hit that critical cumulative point but this AM I woke up in so much pain in my shoulder blade area I was literally in tears and calling my doc for more pain meds. Was so bad I couldn't drive and glad I had a pre planned visit from my parents who live an hour away and are 80-ish. Existing meds only took the edge off enough to keep me from crying- new ones when I got them took it down a bit more, Called to say I wouldn't be there at therapy tomorrow as I wasn't even sure I'd beable to drive. Therapist called back to encourage me to come if I could drive and she would do more with heat and ultrasound and maybe just work my hand a little. well frankly I'm half afraid to go even if I can drive-if these flair ups set in badly they can last WEEKS OR EVEN MONTHS. If I'm luck it will ease up in several days but I'll stay more prone to one (I've been dealing with this preexisting disease before the stroke for 12 years I know my body). I just don't know what to do - it's a HUGE RISK TO ME. IT'S ALL FINE FOR HER TO PUSH M ME BUT i'M NOT EVEN SURE how much she'll ease up and I have no clue what will happen if I go back to not driving sorry this was rambling and long I just don't know what to say since this exactly what could happen BEFORE we started and she let it happen anyway despite warnings I gave. sorry I'm upset and in pain and can only type with one hand.
Geeze - yeah it sounds like you need a new therapist. If yours isn't listening to you, I'm sure she has a supervisor who will. Best of luck, I really feel your pain, I'm only 40 myself!
Get another therapist! Tell her to take a flying leap! You have seen what she does, it there any reason you can't do most of it yourself - at you own pace? And where are you? GC is a family! If I am within 50 miles of you, dear- you got a ride whenever you need! I am sure there are others who feel the same! Before the days of welfare, people formed "mutual aid societies" and helped each other. GC is already, in a way, a mutual aid society- we help each other- usually just with advice, but sometimes it can be more than that. GC is a strong community- let's make it even stronger! Granny
thanks for you're thoughts...and you offere of rides Granny but I'm near Philly and think you're on the west coast. It's funnny how all the people who wish they could help and who I think really would are ones who live to far-who I've met somewher in cyber space or old friends now in other states. Ther most frustrating ones have been ones who say they help but then never respond to a request for a specific need - it would at least be polite to give me a - soorry that won't work with my schedule. and the ones who give me a tentatuive day to come over but never confirm it...any way... I did manage top go to the therapy yesterday cause she said we could do some ultra sound and some lesser stuff. I didn't know the ultra sound was an option ther (I've had it at other therapies) So I'mm ask her next time if we can make that and some of the other modifications more regular. And I'll see how things go. But I also had there place I'll be getting physical therapy ask their occup[ational therapist to call me so I'll discuss the issues and see if she has a better idea of my conditions and if the other doesn't improve I'll switch. I just have felt so over wellmed - the "system" really assumes you will have friends and family who can be around regularly to help when you get home and there is no back up plan if you really don't (they sent me home not knowing if I could prepare any meals at all- and I have no microwave nor any room to put one- and told me to order delivery food if i couldn't- yep that was their reall answer to me) I was saying to a friend about a year or so ago that modern society has gotten to big and bussy cause people used to know everyone i their comunity and make ways to help people out in need- like The Aid Societies. Thank you for letting me vent -this has been such a frustrating and disheartening experience.
They don't understand. I'm a fellow Fibro sufferer. I can't advise you since I don't know how much your therapy is for the stroke and how much it's for the Fibro but as for me NEVER will I get therapy for my Fibro. Drs have tried to get me to go but I refused. Since moving to NYC I've changed docs trying to find one I'm comfortable with and the current one I like but he tried to get me to go for therapy. I told him no I wasn't going for torture, which in essence it would be. I'm also in your shoes -- no one to cook, clean, shop for me so I try to take it as easy possible. I explain over and over again to these people that after going out of my house for anything I'm especially in pain. My body remembers every movement and it's like all at once remembers those movements upon my return and the next day "rewarding" me with pain and then I'm so tired I sleep hard and can't get out the bed the next day. I plan my trips out and make sure I don't have anything to do the next day so I can recover. I've been a member of Fibro social groups on the net and a lot of people have the same outcome as you with therapy. I just can't see how any of those people think constant manipulation and movement will help when it's that same manipulation and movement we do on our own in everyday life is what makes us hurt. Freak therapy!