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MainelyKnitting
09-13-2008, 09:11 PM
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?

Puddinpop
09-13-2008, 09:21 PM
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.

MainelyKnitting
09-13-2008, 10:03 PM
Thanks for your kind words, Puddinpop! :hug:

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!! :knitting: 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. :thumbsup:

Jen17
09-13-2008, 10:48 PM
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,
Jen

MainelyKnitting
09-14-2008, 01:46 AM
Wow, 5 back surgeries!! :help: 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. :happydance: 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... :roll: 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!

Jan in CA
09-14-2008, 02:03 AM
I can't imagine what you are going through, but you have a great attitude! :hug:

Debkcs
09-14-2008, 03:37 AM
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.

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~~~~~~~~~

nicolejc83
09-14-2008, 03:38 AM
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"

sue in canada
09-14-2008, 08:00 AM
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.

gingerbread
09-14-2008, 08:37 AM
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:roflhard:. 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.


:waving:

MainelyKnitting
09-14-2008, 09:47 AM
I can't imagine what you are going through, but you have a great attitude! :hug:

Thanks! Well, I do try - although I didn't always have this attitude and I do have my days where it drives me crazy. But it's those times that I really try to find something different to do... a new pattern or something like looking through the posts here to find some inspiration to try something new - and visiting with all you wonderful people!


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.

I'm so sorry you also have the pain issues and your poor hubby - keep hanging in there - you both must be supporting each other, which is awesome! Not everyone that deals with this type of thing can handle it and it can be hard on marriages. Thankfully, my hubby is very caring and concerned and I don't know what I'd do without him.

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~~~~~~~~~

Thanks for the gentle hugs - you know the drill, ha ha! I agree with the "pain killers" - you described it well - they do take the edge off, but they certainly don't make me comfortable. I am so glad to hear that you are able to do things around the house and in your life. That is so great! I dealt with most household/shopping things for years, but it was surgeries that put me where I am now, they made me worse off after each one and I wish that things were different, but that's how it is....


Like I love to say, thats why doctors are just "practicing physicians"
Exactly! :roflhard:

It sounds like you were a huge help to your mom - awesome! Out of our 8 kids, there are only 2 that live close enough to help and of course they have their own lives, so I try not to bother them unless I have to. It's hard to have to ask them to go to the store all the time, etc. Thanks for sharing!


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.

I'm sorry to hear about your RA, but I'm glad that the meds are controlling it, there has been a lot of breathrough with arthritis recently.

I bet your friend just loves your visits (and the yarn!). I don't know anyone that knits around here. The lady that taught me to make socks and mittens moved about 8 years ago, so I've been on my own since then.

FO's - I just posted a picture of some of my September KAL mittens this morning. You can see a picture here (http://www.knittinghelp.com/forum/showthread.php?t=83245&page=9). I took more pictures last night and plan on putting them up here on the forum sometime today.


So most of the time I am in bed. I only get out and about for little things like yarn:roflhard:. 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.

I know what you mean about "only getting out and about for little things like yarn" - that had me actually LOL!!! That was so funny!!! :roflhard:

It sounds like your husband is like mine - I guess that makes us lucky, since I know for a fact that a lot of men can't handle this sort of thing. They had thought of giving me an SCS, but since surgeries make things worse, they don't want to risk it. Keep your chin up - we're all in this together, right?



Thank you to everyone for your replies (and hugs!) - all of you are awesome!!! :happydance:
I visit here countless times a day and always look forward to it. I also look forward to getting to know everyone and helping when and where I can.

Gentle hugs to all of you!! :grphug:

cindycactus
09-14-2008, 09:54 AM
OMG. I woke up this morning feeling "not so well". Now I am ashamed of myself after reading your posts. God Bless you all. :muah: I am so glad you find comfort in knitting. It is a wonderful thing. Welcome and keep posting.

MainelyKnitting
09-14-2008, 10:02 AM
I woke up this morning feeling "not so well". Now I am ashamed of myself after reading your posts.

Oh, please don't feel badly - I bet you probably deal with or have had things in your life that I never have - remember, we all have things to deal with, it just may be in another way.

I am glad I have found the comfort in knitting - I really do believe it's what keeps me sane. Thanks for writing!!!

:hug:

Jen17
09-14-2008, 10:13 AM
Teri! Can you please write me about the Spinal Cord Stimulator device! I had a trial run with it that did not go well, etc. You are the only person I have come across that has one! I would love to talk to you about it. My son works with neurosurgeons and I might go see another one, but before I try this again I want more information! If you read above you can see what I wrote to Mainelyknitting (wish I knew her first name!).
Thanks,
Jen

Jen17
09-14-2008, 10:20 AM
Sue,
What is RA? Sorry that you are in pain, too..
Jen

Jen17
09-14-2008, 10:42 AM
Hi,
Me again! Do you have a first name or should I call you Maineley?:)
You said you have tried alot of different meds, but if you haven't tried the Fentanyl patch, I would strongly recommend asking your doctor about it. Not everyone can use it. It is a patch that comes in different strengths. It starts at 25 mcg's and goes on up. I started at 50 then 75 and now I'm at 100. It is strange that I read your post yesterday and that I'm talking to you and the other girls on the thread today. I woke up this morning and my hubby was threatening to take me to the E.R. The pain is just getting worse and I'm wondering if I may have a problem with my hip. The location of the pain has changed and is getting worse. It's weird, because the sciatica is hurting in different places. This is at a really bad time (is there ever a "good" time :roflhard:), because I just took a different position at work and I'm still in training. I really don't want to go to the doctor again.
Well, back to the Fentanyl, it really does work (usually!) You put the patch on and then change it every 72 hours.
Thanks for letting me talk about this. I know you understand! I don't talk to anyone about it unless I absolutely have too, including my husband. I usually try to hide the pain.
Jen:knitting:

Jen17
09-14-2008, 10:46 AM
Cindy! Don't feel that way! Everybody had different things in life to deal with. Maybe there is something in your life, now or before, that you had to deal with that wasn't physically painful, but maybe difficult or painful in a different way!
So, I hope you are feeling better today!
Take care,
Jen

NikitaShera
09-14-2008, 10:46 AM
Mainlyknitting: So sorry to hear of your pain. You're a great model for the rest of us on KH! Is RSD and Central Pain Syndrome the same?

Thanks

Jen17 or anyone who can help, how did you get the ravelry symbol on your signature section.

Jen17
09-14-2008, 11:13 AM
Nikita, I pm'd you!
Jen

P.S. Ok. I saved it to my desktop and sent it to you as an attachment. I hope it works. If it doesn't go to Ravelry and post over there. PLUS! There are other ones with different saying and colors.

Let me know if it worked!
J.

sue in canada
09-14-2008, 11:29 AM
Jen17 RA is Rheumatoid Arthritis. Luckily I was diagnosed quickly and for me the medication works. I am willing to put up with a few side effects to be pain free..

Jen17
09-14-2008, 11:47 AM
Hi Sue,
Duh, I should have known that! My coffee is just kicking in! I'm glad your medication works for you :)

Jen

Debkcs
09-14-2008, 12:00 PM
OK, I have to ask also, Mainely, what is your first name or would you prefer to go by MK or something?

I truly believe that attitude is everything when you're faced with any illness. It's OK to moan and groan about a cold you may have for a week, but it sure doesn't help any in the long term.

newamy
09-14-2008, 12:40 PM
I feel I must chime in here regarding Fentynal patches. They are also called Duragesic patches. They contain a very strong narcotic and they are not without dangers. They are for chronic pain only. Never acute post surgical or new injury pain. Never for anyone who has not already taken a lot of narcotic pain meds on a regular basis before. People have died when they have been innapropriately prescribed for acute pain and for this reason the box states for chronic pain only. I'm saying this for the benefit of anyone reading this thread not just Mainelyknitting or Jen17. It's not the sort of medication people should go running out to the MD to ask for unless they have had long term serious pain issues or progressive pain related to cancer.

That being said, it is very effective. The way it works however also bears caution even in those where it is okay to use it. When the patch is applied the medication deposits into the subcutaneous tissue and fat within a few hours. It then slowly metabolizes giving the wearer roughly 3 days or releif. If someone has an adverse reaction- allergy, acute confusion, or nausea/vomiting from it simply removing the patch does not take the medication away. It was deposited in the fat tissue and one has to wait several hours for the body to metabolize the med and for the effect to go away. If a care giver or spouse is apply the patch for someone using they should wear gloves so they do not absorb the medication into their skin.

Another suggestion regarding chronic pain is a pain clinic. They are far and few between in my experience but when a patient finds one they can be very helpful. Usually a nurse experienced with chronic pain works with you and makes suggestions to your doctor about what to prescribe. There may also be an MD at the clinic specializing in pain management. Lots of family practice MD's or Internal medicine docs are not well versed in chronic pain management and working with someone who is can work wonders. Sometimes it's finding the one medication that helps, it's also developing a system so you don't run out of medication when you need it the most. For some people other modalities like physical therapy, massage, even acupuncture in conjunction with the medication can be useful. So I would encourage to look around in your area and see if there is a pain clinic, check surrounding cities as well. Maybe you could get a referral to one. It's a thought.

MainelyKnitting
09-14-2008, 01:03 PM
Hi,
Me again! Do you have a first name or should I call you Maineley?

OK, I have to ask also, Mainely, what is your first name or would you prefer to go by MK or something?

Everyone can call me "Maine", "Mainely" or "MK", whatever is more comfortable for you. I kinda like "Mainely", lol! :teehee: See, I had a bad experience on the 'net once using my real name, so now hubby and I both use nicknames, sorry about that.


You said you have tried alot of different meds, but if you haven't tried the Fentanyl patch, I would strongly recommend asking your doctor about it. Not everyone can use it. It is a patch that comes in different strengths. It starts at 25 mcg's and goes on up. I started at 50 then 75 and now I'm at 100. It is strange that I read your post yesterday and that I'm talking to you and the other girls on the thread today. I woke up this morning and my hubby was threatening to take me to the E.R. The pain is just getting worse and I'm wondering if I may have a problem with my hip. The location of the pain has changed and is getting worse. It's weird, because the sciatica is hurting in different places. This is at a really bad time (is there ever a "good" time :roflhard:), because I just took a different position at work and I'm still in training. I really don't want to go to the doctor again.
Well, back to the Fentanyl, it really does work (usually!) You put the patch on and then change it every 72 hours.
Thanks for letting me talk about this. I know you understand! I don't talk to anyone about it unless I absolutely have too, including my husband. I usually try to hide the pain.
Jen:knitting:

I actually haven't tried the fentanyl patches yet, I suppose I could ask the dr when I see him on Thursday, though. I guess what it is is that with all that stuff in the news last year about the leakages and deaths, it scared the crap out of me and I think that's why I haven't thought about using them. I have heard that they can really help control the pain and can be of great comfort! I guess I'm a baby, lol. But at this time, the pain med I'm on is working better than any I've been on in the past, so I almost would hate to "mess" with that and also I don't think that I could use the fentanyl with the medication I'm on currently. But, I appreciate your thoughtfulness and can discuss it with my dr this coming week to see what he thinks.


I'm sorry to hear that your pain is worse today - that's no fun at all! :hug: If you have to go to the ER for your pain it's a good idea to have discussed the "ER plan" with your dr beforehand if it's possible. Sometimes, ER's tend to see addicts a lot, so when they see a pain patient it's hard to understand how to best treat them. If your dr has contacted them by letter beforehand, they can better treat you if you have to be seen for pain issues.


Cindy! Don't feel that way! Everybody had different things in life to deal with. Maybe there is something in your life, now or before, that you had to deal with that wasn't physically painful, but maybe difficult or painful in a different way!
So, I hope you are feeling better today!
Take care,
Jen

I agree completely! We all deal with different things and there's if there's one thing I've learned it's that we cannot compare ourselves in life, whether it's physical pain, emotional pain, etc. We all deal with traumatic and sometimes painful events, maybe just in different ways. Never feel bad for having the feelings you have, they are yours and your feelings matter.


Mainlyknitting: So sorry to hear of your pain. You're a great model for the rest of us on KH! Is RSD and Central Pain Syndrome the same?

Thanks for your kind words! RSD and CPS are both the same in the way of the amount of pain that is felt. Both have descriptions of pain that are so above what others would be able to describe. It's like they are off the pain charts. Both conditions have very similar issues, but with RSD there is redness, etc that most CPS patients don't have. Notice I say "most", that's why the two are sometimes confused. I know I haven't really explained anything here to really answer your question, but it's just that the treatments in my case (whether it is RSD or CPS) would be exactly the same as it is right now, just "comfort measures" as they call it, which means medication to help ease the pain.


I truly believe that attitude is everything when you're faced with any illness. It's OK to moan and groan about a cold you may have for a week, but it sure doesn't help any in the long term.

You are so right! It took me so long to learn that, but even longer to "live" it. I sure spent a lot of time groaning about my pain, my life, etc but now it's part of who I am and I have accepted it and learned to live with it as best I can. I think that's all any of us can do.


I feel I must chime in here regarding Fentynal patches. They are also called Duragesic patches. They contain a very strong narcotic and they are not without dangers. They are for chronic pain only. Never acute post surgical or new injury pain. Never for anyone who has not already taken a lot of narcotic pain meds on a regular basis before. People have died when they have been innapropriately prescribed for acute pain and for this reason the box states for chronic pain only. I'm saying this for the benefit of anyone reading this thread not just Mainelyknitting or Jen17. It's not the sort of medication people should go running out to the MD to ask for unless they have had long term serious pain issues or progressive pain related to cancer.

Thanks for writing that - it's so true! There are patches available by prescription called "lidoderm" (lidocaine) patches and many people mix them up - there is a huge difference between lidocaine and fentanyl patches and I think you were smart to indicate the usage for the fentanyl patches. Anything like this has to be used/taken with all the care and education that we can get, they can have adverse reactions otherwise.

Another suggestion regarding chronic pain is a pain clinic. They are far and few between in my experience but when a patient finds one they can be very helpful.

There's a pain specialist (an anethesiologist) that visits my area (I'm in the sticks, ha ha) and I see him every six months. He keeps in regular contact with my regular physician, they work out my medications, etc together. I agree that a pain clinic can be a wonderful thing. Too many family doctors don't have the intricate knowledge of the medications, side effects, (to say nothing of experience with chronic, intractable pain patients) that the pain specialists/clinics do.

ecb
09-14-2008, 05:51 PM
I have to say how much respect I have for you and anyone who deals with real Chronic pain, I used to work at a pain Center (connected to TJUH in Philly) and learned SO MUCH about pain and pain control while I was there. I am dealing with a pain issue, and I am pretty sure it will never fall into a Chronic pain category, because my pain is short lived and intermittent
it goes like this; used to be only 10 or so seconds long, of moderate to severe electrical searing type pain no more than 5-10 times a day.
Over the past year it has gotten worse to the point I get over 20 a day and they last upwards of 40 seconds to a min each (my kids sometimes time them if they see them)
This pain is not made better with exercise, but rather increase in the next day or so if I have a heavy activity day. the first Dr I went to was sure it was a Sciatica type thing, even though I explained not all the pains were in my legs, and since then I find the part of my body seems to move around. On the worst days I get pains in all 4 quadrants and the core. "good" days I only get pain in one side or even one quadrant, and no, the pains rarely occur in the same place over and over.
I have noticed that the pains tend to be where a muscle would be attaching to a Ligament.

Obviously I have reached a point I M looking to maybe do something about it, medication does not help, and I DO NOT want to take anything like narcotics, which is frustrating, becasue most Drs assume that is why I am there. I just want to understand and find a way to make it stop, to go away, not to just take a pill (patch, epidural, swab, whatever) IF this is eventually determined to be something I cannot controle some other way, but I M not there yet.

I know how hard this little bit of pain is to deal with, so I have MUCH respect for people who deal with real, unrelenting, chronic pain.

MainelyKnitting
09-15-2008, 06:57 AM
Thanks so much for sharing your experiences. I'm sorry to hear about your pain. I wish I could have replied sooner, but my pain level has been horrible since yesterday. I have days like this all the time and typing can really make it worse, so my responses are limited or non-existent during those times.

I agree about the meds - I went years before having to go on pain meds and I feel good about that decision. Now, there is no way I could go without them, since even with them my "quality of life" is pretty bad (pain-wise). I don't like that I have to use them, but it's the way it is. If there's one thing I've learned, it's that there is no sense in fighting the inevitable. I don't mean to say that you will be in the same situation, only that I started out with not wanting them at all, too.

Have you looked into massage therapy or maybe acupuncture? I know those things can be helpful in many cases.

gingerbread
09-15-2008, 10:21 AM
Gosh I must be one of the lucky ones I have a pain doctor where I live in VA. Thank gosh for him, he has done me very well . Once he said that they could not do anymore for my pain with pills. Let me tell you I went off the deep end on that . He said I was a good candidate for the Spinal Cord Stimulator. I had to go through loops to get it. My insurance did pay for it. I also had to see a shrink sorry bout that word . I can' t spell the right name. Anyway he said I was ok for the implant and within a few weeks I had it put in. It is great and like anything if I do to much it doesn't work as good as it should. I also still take my meds but at least I can cut back on those.:woot:


:waving:

Knitting_Guy
09-15-2008, 10:26 AM
Sorry about your pain and being stuck in the house. I understand completely. I live in pain every day of my life since my car wreck and spent several months bedridden during recovery from that wreck.

Of course I always knew I would eventually recover, so it is different from your situation, but I understand all the same.

Keep on knitting and try to stay positive :mrgreen: At least you have net access which allows you to reach out to the world.

InterNette
09-16-2008, 08:39 AM
I am a caregiver to someone who has lost most mobility and is in chronic pain. He had back surgery and both knees done to try and improve his back strength but it never worked. He too has been tested for fentanyl patches but the expense is having us go through the va pain clinics to make it more affordable.
Since he had so many hospital stays anf surgery that is how I took up knitting. I am not a hand quilter but a machine quilter and I couldnt stand the lost time doing nothing with my hands and of course I couldnt take my work to the hospital so I went into a knitting shop and said I have to learn this and have loved how much it has saved my sanity.
All through hospital stays, rehabs, appointments everywhere, I have knitted patiently my way through those hours. I would have gone crazy without knittings saving grace, I am so grateful for it. I myself a couple years ago had some health issues and again, knitting went everywhere with me.

Now if I could get someone else to drive I would gain even more knitting hours. How I wish I had a long commute on a train each day to decompress with my needles, lol. I am probably the only one I know who wishes I worked 2 hours away and sat back to enjoy the ride.

ladyjessica
09-16-2008, 09:47 AM
Mainely, your story (and so many other people's stories too) is truly an inspiration. I've been depressed lately over some personal and family issues, and while I try to stay positive and look on the bright side, sometimes I just can't take it anymore. But your story and especially your positive attitude have really helped me today. I wish I could take some of your positivity and give it to my dad.

He has diabetes and was basically displaced from his job almost 3 years ago because of it. Somebody else younger wanted his job, and because his eyesight was deteriorating it sometimes took him a little longer to complete his job. Well, the someone younger and my dad's boss pretty much worked together to get rid of him, and ever since he just hasn't been the same. He and my mom have fought (and won, btw :happydance: ) a lengthy legal battle against his employer, but his health has deteriorated drastically. He can barely see at all now, he had to have part of his foot amputated in January, and now he's been in bed for almost a month because he has another sore on his foot.

His overall demeanor is terrible - he's moody and has a terrible attitude. I understand he's frustrated, but it's also frustrating for my mom and me because we have to live with him and he doesn't understand how his attitude affects us. He's very limited, but there are still so many things he could do, and he won't. All he wants to do is sit and stare at the TV all day, every day. Also, they won their legal case, but it's being appealed by his employer , so it could still be years before they actually see anything from it and that takes a toll as well. He's just not my dad anymore, and I can see my mom growing more and more resentful towards him every day because he's holding her back from living her life.

Anyway, sorry to ramble. This is what I deal with every day. I'm not in physical pain, but I have a lot of emotional pain because of the injustice and for what these people have done to my dad and my family, and sometimes it's hard to step back and see the big picture. I just wanted to thank everyone for their positive attitudes and for helping me remember that no matter how bad I think things are, there's always a way to make them better. :hug: :hug:

Nobones
09-16-2008, 11:18 AM
I just saw this thread today, it's wonderful that everyone is giving you such nice support.

I too have fibromyalgia/CFS, I have spent months at a time doing sod all and feeling exhausted doing it! I have other medical problems that have made things tricky to deal with too. I also took up knitting as a way of keeping myself sane, and found this this place as a result. I've had more support from the guys on here than some of my own family members, they are a great bunch of people who seem to be here whenever you need them no matter what time of the day or night you seem to be posting.

I also used to think it was just me (I'm a little younger than you 29) but it's been great to here and learn from other peoples experience's. I have tried Fental patches and they didn't work for me. Not only did they not so much as take an edge off, they made me horrendously sick. My Doctors are talking about fitting a morphine pump, but I have to admit, I'm very scared at that and haven't talked any more about it. I too have a very supportive hubby, I love him to bits, and couldn't be without him, just like you. He's a star he does all the cooking and cleaning, picks out yarns and patterns for me and some friends. What would we do without them!

Hope you're having a good day today, if you ever want to chat more, drop me an email.
Take Care
Love Nobones xx

willowangel
09-18-2008, 12:30 PM
Just wanted to say hi, and I think you're a fantastic model for us :-) I was bedbound for about three and a half years when I hit 19, with CFS and Fibro. I then had a few shining years where I still couldn't work, but I could get out and about. I'm now on a downward spiral again, and am having a hard time dealing with it after getting a few years of relief. Today I had a shower and that's all I managed.

Still, I can knit and that's good, and the cocktail of drugs keeps me at least a little mobile :-)

tokmom
09-18-2008, 01:12 PM
My best friend was diagnosed with RA and Fibro when she was in her mid 30's. She's on many meds, but still is productive and can work, thank goodness. She has bad days where she just can't get out of bed because of pain and exhaustion.

My husband has chronic neck pain from degenerating discs and narrowing that puts pressure on the spinal cord. He's been to pain clinics, had botox injections, lidocaine injections, etc..He finally went on a pain meds on a constant basis. It was a stigma he had to get over because he thinks everyone will think he's a junkie. But after nearly ruining our marriage and life, he went on the meds and hasn't regretted it since. He has most of his life back.

I feel for you and your pain. :hug:

MainelyKnitting
09-20-2008, 11:26 PM
Thanks to all of you for writing - I've been reading the replies, but the past few days I have been in horrific pain. I had to see the doctor on Thursday and any time I go out I end up like this. I just didn't want any of you to think that I was ignoring the thread.

I will write more when I'm feeling a bit better - I am on the mend, really.

Hugs to all of you for sharing - it means SO much to me!!

:grphug:

sue in canada
09-21-2008, 08:02 AM
I hope you will get some relief and feel better soon.

Puddinpop
09-21-2008, 09:48 PM
All of you guys that are in pain, I am praying for you. If you get a morphine pump, it won't let you go over a certain limit. I know it's bad, but I think it's even tougher on your body if you don't get any relief, don't you think? Talking about just being able to take a shower, I know when I am sick with the flu or something, a shower is a big deal. It can really zap you, but at the same time make you feel better cause you are clean. Anyway, I can't imagine what you are going through, but I am glad you all are able to use the computer and join this group, because there are so many wonderful people here. You will be adding to this group of wonderful knitters. :muah:

MoniDew
09-22-2008, 04:15 AM
I just wanted to send :heart: :heart: :heart: to all of you chronic pain sufferers. I am so sorry that you are hurting! :grphug:
________
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Nobones
09-22-2008, 10:15 AM
All of you guys that are in pain, I am praying for you. If you get a morphine pump, it won't let you go over a certain limit. I know it's bad, but I think it's even tougher on your body if you don't get any relief, don't you think?

That's what my doctor says. I don't know what bothers me about it, maybe it's the fact it's got to this point it seems so permant. But things are getting worse so I'm going to have to do something, and cutting down on the stuff I can do isn't an option.

(Sorry Mainelyknitting for pinching your thread for a minute! Hope today is a better day for you xx)