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Old 09-13-2008, 09:11 PM   #1
MainelyKnitting
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Anyone else disabled/bedridden?
I spend the majority of my time in bed (knitting, of course! lol) and was wondering if there were any others who were in the same type of situation? I barely leave home, since any kind of traveling makes my pain worse and have to have help to do any type of shopping, etc. and have to have my family help most of the time with housework and other daily things.

I have Central Pain Syndrome (or is it RSD?... they can't decide), Fibromyalgia and Rheumatoid Arthritis. Being only 44 y/o (as of yesterday), I can say that sometimes I feel I'm the only one in this situation, but I know there must be others.

Pain is just a normal part of my life, no matter the medications I'm on and knitting gets me by and keeps me sane. I am so glad that I found this forum and I hope to become even more involved here as time goes on. Coming here and "visiting" is like a trip out for me and I want to thank you all - even if I don't reply in a thread, I do read most of them.

Anyone else in a similar situation?
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Old 09-13-2008, 09:21 PM   #2
Puddinpop
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I am sorry to hear that you have pain all of the time. You are very young to be going through this. Keep writing in the forum, so that we may get to know you better.
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Old 09-13-2008, 10:03 PM   #3
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Thanks for your kind words, Puddinpop!

I've actually had pain issues for over ten years now, so in a way I'm used to pain, it's the 'not getting out of the house' part that I'm not used to, since I was always a very active and involved person. We raised 8 kids (hubby had 5, I had 3 when we met) so you can imagine how busy I was, ha ha. I think feeling "stuck" is the worst part of it, but I do manage to get by on the "one day at a time" method. Of course, over time the pain has gotten worse, but also in that time, I have learned strength in ways I never knew I had.

I keep myself pretty busy, really. Right here within reach is my laptop, tv remote, phone, paper & misc stuff like that and as always, my knitting bag!! I used to crochet almost exclusively, but now I love knitting more!

I just love this place, it's so interesting and I've learned so much already. I joined the September Mitten-A-Long and I keep up with what everyone is up to in that KAL and the others that are ongoing. It helps to keep me inspired in my knitting, as well.
Yeah, I'll be hanging around a lot, ha ha.
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Old 09-13-2008, 10:48 PM   #4
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Hi,
Well, I certainly feel for you. I've been bedridden for months at a time and I know it is no fun. It may be for a day or two, but after that it can drive you crazy! I have had 5 back surguries and then after a really bad hyterectomy and complications from that, I was in bed for 6 months, BUT the good side was I found out that one of the medications I was taking for it really helped my back. I have taken every and I mean every pain medication known. Now I wear a Fentanyl patch and another med. and I can actually walk and go to work. Sure most days I come home and have to lay down, but it's better than before.
Have you tried alot of medications? Have you had a second, third or even fouth opinion?
Big Hug,
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Old 09-14-2008, 01:46 AM   #5
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Wow, 5 back surgeries!! That must have been tough. I can't have any surgeries now other than if it's a life or death situation, since any surgeries (even dental) that I've had in the past few years have made me much worse off. I'm glad to hear that you've recovered enough to be able to return to work, that's great. I've never had the fentanyl patches, although I go through different regimens of pain meds, changing when one doesn't work very well anymore, on to one that does and back and forth... You know how it goes with those kinds of meds, you get tolerant quickly and that's no fun.

Yeah, I've had more "opinions" than I care to remember. Living where I do, it's quite a drive to go to the specialists, so I've limited those visits now that things are like they are (if that makes sense). Kind of like, after so many telling me there's nothing else they can do for me besides trying to keep me comfortable, there's not much of a point to pursuing it anymore.

The first year of being in bed was the worst, at least now it's a little easier to deal with.

Thanks for writing - have a great night!
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Old 09-14-2008, 02:03 AM   #6
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I can't imagine what you are going through, but you have a great attitude!
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Old 09-14-2008, 03:37 AM   #7
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My sweet husband of thirty five years has MS and spends a lot of time in bed. He feels exhausted all the time, and if his meds aren't done just right, he looks like he has Parkinson's; at 56 he's losing most of his muscle mass.

I have fibromyalgia and RA, and CPS which they used to call RSD. (I still call it RSD, it's mine, and I'll call it what I want! ) Most days I'm up and about, but several days a month I'll just crash. The house could burn down around my ears and I'd not be able to do anything about it. He takes twenty-two pills a day, and two injections a week, I take eight pills a day, and one shot a week. Good thing we're both former nurses.

You sound like you have a good attitude about being in the house most of the time, so does my DH. It's hard for me not to be going out more, but so many people have it so much worse, I won't complain.

Quote:
Pain is just a normal part of my life
Why they call them "pain killers" is beyond me. They just take the edge off, not get rid of it. But I am thankful that after a lot of research, I found one that works well enough for me to be able to take care of things around here.

Lot's of (gentle) hugs~~~~~~~~~
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Old 09-14-2008, 03:38 AM   #8
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I remember when my mom was on bedrest after back surgery last year. It was friggen awful taking care of that woman because she would not keep her butt in bed. I would spend all day there, helping with what I could, you know laundry cooking taking the dog for a run. She got to spend time with my babies. Then I would go home at 5 or six when my husband was headed home from work. Give her a call to check that she ate dinner and she would say, oh yeah it was great now I think I will go to the store and get dog food. I was like " Are you kidding me, get your broken butt back in bed and I will get the dang dog food." Could not get her to stay in bed for the life of me. Her reasoning was, Im only fourty why should I just lay up in bed all day, its no biggie to run to the store real quick.

I also understand your problem with the doctors, my brother suffers from tremors and the docs told him there was nothing they could do for him until it got so bad he couldn't zip his pants. And he told the docs word for word, "Everyone looks at me like I am a raving lunatic on crack and you want me to wait till I get my d*** stuck in my pants before you do something about it, go f yourself dude." mind you he was 15 at the time and he thought they could just give him a pill and it would be all good.
Like I love to say, thats why doctors are just "practicing physicians"
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Old 09-14-2008, 08:00 AM   #9
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Sorry to hear about your pain but your attitude is great. I have RA but at the moment it is well controlled with medication, so I am lucky.

I have a good friend who is partially disabled due to severe back problems and she has found great comfort in knitting. I try to visit often and take her to buy her yarn and she has become a really good knitter.

Look forward to seeing some of your FOs.
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Old 09-14-2008, 08:37 AM   #10
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Oh how well I know your pain. I have had three back surgeries and believe me it is not fun. It fixed one problem a disc that burst which in turn pinched a nerve. Now that was a pain that I could have rip a face off. Meaning the doctors, they did find the reason and fixed it. Then it started a pain no one could find. So now I take at least 17 pills a day. So most of the time I am in bed. I only get out and about for little things like yarn. My husbands is great taking care of me, and the house when I am laid up with the pain. Even with the meds and the Spinal Cord Stimulator implant the pain is always there. My knitting does keep me sane and coming here helps a lot for me. This group is a great place of the friendliest people I have ever found.
Keep on knitting we are all here to help with anything.


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