Coping with a disability

I am sorry you are in pain.Perhaps you could ask your doctor if theres other alternative you can use to take away the pain.Luckily, i never have any disability but i feel for you because i have seen alot of people with disabilities and its hard.I hope you are feeling better now.

Perhaps you can ask the doctor about other methods? Clearly your current regime isn't managing your pain. There are actually a lot of good books about managing pain out there. I also went on Gabapentin for one reason and I'm convinced it's taken the edge off of my fibromyalgia. Since becoming ill myself I've certainly become a lot more spiritual, but some days it's not enough and I do feel like giving up myself. I wish there was other advice I could give you, short of illegal substances! I really sympathise with you and hope you find help and relief soon. Check the web for organisations, groups or open clinics in your area for pain management and also for your specific ailments.

Oh shucks! It's terrible having to live your life like that. My heart goes out to you. But I know, you're doing all you can to live normally and I commend you for that. :) Anyways, I'm not sure if you can call this disability but I'm always disabled and my activities are limited (to whining and wincing in pain) everytime I have my monthly period. Yup, I have dysmenorrhea and the pain really kills me all the time. You see I only have those supposed monthly period twice or thrice a year, so when it comes, blood comes in whole solid and it's really painful to discharge them. There are times I pass out because of the pain. it's because my brain can tolerate the pain while my body cannot. I mean, I have a high threshold for physical pain because of this "disability" that sometimes I don't feel any pain when someone punches or pinches me. Before I learned to control myself, I used to throw everything I get my hands on to anybody I see or to everywhere I want to because of the pain. And I will cry with agonizing pain because crying seems to make me forget the pain. But as I grew older, I came to learn controlling my physical pain, I ignore it most of the time by doing some listening and singing. Sometimes, I cook my favorite food and eat it as a reward :D. It's actually easy when you get a hang of it...

I don't have a disability myself but am a carer for my partner who is disabled. He has no feeling below his right knee due to an op that went wrong about 11 years ago. Due to this he also has severe depression. The slightest touch on his leg leaves him in agony he is in pain 24/7. It also effects him when he is walking as he can not feel when he puts his right foot down and often falls over,he is suppose to use a crutch but is too stubborn to. It also means that he is not allow to work and has been signed off for life. He is like you and hardly ever complains. The doctor has recently put him on stronger painkillers but although these help they don't take the pain away completely. Im sorry to hear your meds are not working at the moment. I hope that you find something to help you soon. I also think you are entitled to whine now and again as it sounds like you put up with much more than most people have to.

I have atrial fibrillation and osteoarthritis along with mild depression, panic disorder, and dependent personality disorder along with some PTSD I am working on. My panic disorder affects my atrial fibrillation and 2 years ago my occassional episodes ended up going chronic. They are now back to being occassional, but often. During the year it was a chronic condition, I kept getting sicker and sicker and had trouble doing anything other than just what I had to to survive. That affected the arthritis in that my muscles lost tone due to lessened activity. So now that I am feeling better with the heart issue, my legs and muscles along with the bone pain gives me much trouble. I can only walk very short distances, so I don't go out much anymore although I miss the activities I used to participate in. I haven't gotten to the place where I have felt comfortable with the idea of going out in public in a wheelchair yet. But that is coming because it is getting to the point that I really want to join in the active life again. I just don't know how to start. I have all these emotional things going on inside me about the whole thing. Also, I lost most of my friends when I got sick. They just seemed to disappear from my life so going out alone with a wheelchair frightens me. I have never been one to go out and do things alone, so doing so with a wheelchair is even more intimidating for me. As for the pain, so far I have gotten along with just extra strength acetaminophen, but in dosages that would be considered too high I am sure. But it is what I can afford. I haven't been treated for the arthritis because of no medical coverage. It gets put on the back burner. I know I need pain medication, but I hate taking medicine. I was just recently allowed to get off of some of my heart medications so the idea of getting on something new isn't to my liking. I manage my pain by not doing much of anything that would make it worse. Anytime I have to go out to the store or elsewhere, I usually end up with at least two or three days afterward that are full of pain even though when I do go out, I use the available motorized carts, or make sure the distance I have to walk for whatever the situation, is very short before I can again sit down. Surgery at this point is out of the question because of the heart issues. I am open to sharing ideas with you and anyone else. Just got a used computer chair that I use for kitchen work and will eventually use for carrying things from one room to another since I can't carry stuff anymore. I can't believe how weak my muscles have become after being so sick, and how my balance has been affected so that I don't do a lot without my cane for fear of falling down.

Hi Tess, I am on disability and have been for the past 9 years. I have a multitude of medical problems: diabetes, rheumatoid arthritis, sleep apnea, degenerated disk in my back causing back pain most the time, anxiety, depression, gee must I go on? LOL Your not whining! Anybody that has a health condition that causes pain or discomfort has to let it out every once in awhile. I don't go out of the house much, don't like to be with crowds of people and it hurts to walk too far, so I try to keep busy here at home. MyLot, which I found a couple of days ago, has kept my mind off of my pain and has really helped. I sure hope you feel better real soon! Char :-)

you are the engineer of your own health. i have severe arthritis in my knees and have been told i shouldnt have surgery because my knees are not bad enough, yet i am in constant and severe pain and was told by a doctor that the only way i could go back to work was to be on narcotics...i am opting for surgery! go back to the doctors and take care of your health!

I'm sorry to hear you're in so much pain. For over a year now I've had severe pain in my joints in my ankles making it hard for me to walk at times even in my own apt.... I'm not really a medication person, and I get that from my great-grandmother who was a nurse, thought all docs were a-holes to begin with, would only rely on natural herbal remedies, never took anything stronger than aspirin and lived to be 98. My doc wanted to give me a med but when I read the possible side effects said a big no thank you...it could trigger off strokes and heart attacks. For sometime I was using that Glucosamine stuff and it helped tremendously first time I took it, but then it didn't. So I hunted around for other natural remedies...and you'll laugh at this....Cherries...yup, cherries. Since they are out now I've been buying them like crazy and eat a good sized handful and while not completely pain free haven't taken or needed any painkillers in about a month, and feel so much better. I'm on disability but not because of that, but panic disorder with agoraphobia, or should I say I'm an overcoming phobic...at one time in my life I was completely housebound, couldn't even leave my apt, to get the mail..I no longer have panic attacks...not in years....and while I'm not ready to book flight to Europe I'm so much better than I used to be. Uh, maybe all that positive self-talk?? LOL

hi TessWhite I have been partly disabled now for a long time so Ihave learned to cope with a bad foot in a brace, and now loss of use of my left arm after a fall two years ago caused me to shatter my left shouldder. I had to have a shoulder joint replacement surgery and in spite of a lot of physical theraphy I lost most of the use of my left arm. I cannot raise my arm more than about ten inches. but I am coping and right now I have had a month of nerve pain with these stupid shingles ouch and ouch again. I am not yet able to wear my day clothes as bra and panties rub on my sore spots but the pain is getting better now. I take tylenol at night because it seems to hurt more then but in the day I do a lot of mylotting which keeps my mind off the pain. sorry I cannot offer any great ideas on pain management.

I'm really sorry to hear you are in so much pain, Tess. It must be absolutely horrific. I was complaining about having a few hot flushes ... but they are obviously nothing compared to everything you're coping with. I hope you manage to find some relief for at least some of these conditions. Bless.

hi, i myself have lupus which involves a number of illnesses for me, and i use dihydrocodiene for pain relief. i am also on steroids to help with inflammation. sometimes i use a hot water bottle or a TENS machine. it really does get you down, being in pain all the time, and people dont understand, i just wanted to say, you are not alone. forums are a great place to express yourself, and to have a good moan take care

Tess, My heart goes out to you. I have medical issues but thank goodness I am not in pain. I am dizzy most of the time but I can't complain to much. I feel like I am on a ride most of the time and can't get off. Sometimes I can't read, watch tv, play on the internet. I had to quit my job because I got so sick trying to work on the computer and all the other stuff that goes with it. I went to physical therapy for about 6 months and they helped me with that. I hope you feel better soon and don't loose your hope and faith. Beachgoer01