When I first became sick 20 years ago, I never, ever imagined that I would live 20 years with the daily pain that I have had to endure. We hear all of the time that a person can deal with anything when they know that it is short-term, even pain. As women, we are used to pain: labor pain, menstrual cramps and pain, and the other pains of just having the privilege of being female. But even some of the most terrible pain we experience, such as labor pain, is made bearable because we know at the end of it there will be a reward: a beautiful baby to love and cherish. But as chronically ill pain patients, we have no rewards at the end of our long days filled with pain. We search endlessly for the purpose for our pain and pray that maybe tomorrow will be the day that we will get some relief from our misery.
I have lived with pain and sickness for 20 years. A total of 240 months; 87,600 days; 2,102,400 hours. That is a lot of time spent being miserable and people expect you to just “suck it up”; “get over it”; “move on”; and “deal with it”. I have spent almost 90,000 days of my life feeling pain around the clock, even with the aid of prescription pain medications, and while I feel that I have done a damn good job of “dealing with it” on a daily basis, living with chronic pain is not easy and is not for the weak-minded.
I wrote a post a while back that it takes strength to have ME/CFS & Fibromyalgia and it takes great strength to deal with chronic pain. Pain sufferers are always fighting a war because pain management is a joke, really. We are given pain medications. After a while, we build a tolerance to those drugs. Then our drugs are increased. We build a tolerance to those drugs. They are increased again or changed to stronger or more addictive drugs. If we take too many because we can’t cope with the pain, we are called “addicts”, but if we don’t take them at all, the pain is so severe we can’t get out of bed and work or take care of daily functions and then we are “lazy” and “not trying hard enough”. No matter what we do, it’s never the right thing. We are losers in society’s eyes.
No one wants to be our friend because heaven forbid if we need someone to talk to we are told we are “whining”. Our families abandon us because no one wants to be around the sick, pain person again – we are blamed for being “too depressing” and “no fun”. When people say things like this about the people they are supposed to love, do they ever stop and think about how their life would change if the shoe were on the other foot? Of course not.
I broke my back when I was 27 years old and went from an incredibly active and fit person to someone that lost bladder control then became addicted to the pain medication. After a few years of that and not willing to allow the surgeons to start cutting I got clean of the meds and started to live with the pain full time. It has been 12 years now since the accident, I get around pretty good but do live in constant pain. It’s strange how it becomes just normal. I think the day I decided to start living my life properly was a day about 2 years after the injury that I was in a pub actually and feeling sorry for myself, I was able to walk again properly by that time. A man came in on a wheelchair and had it insert a cathider to urinate. I walked out of the washroom and swore to never feel sorry for myself again, to date still doing good, I do have bad days still however, I think at that moment I accepted that my life will never be the same again, but that it could be a lot worse.
Sandy Robinson says
Hi Wade – Thanks for your comment and story. There are a lot of people out there worse off than me and I am thankful that I do get around better than some do. I am thankful for that. I hope you continue to keep your positive attitude and be an inspiration to others! Best of luck to you!
I have to tell you that I really empathize with you, since I spent nearly 3 months trying to convince doctors I was having severe backpains. Not being able to lie down comfortably, took nearly an hour of excruxiating stretches to be able to walk enough to get ready for work. Once I did get to work it was a matter of sucking up the pain (with plenty of pain meds) to keep going. Did not have a decent night sleep in those 3 months and once I did get a doctor to give me an MRI, he was shocked that I was even able to move and ordered immediate surgery. Had 2 surgeries in 2 weeks to correct multiple collapsed discs.
I only endured 3 months of severe pain and you have endured over 20 years! Can not even imagine how you get through each day.
Pain is so hard to convey to people who have never had REAL pain.
I do not know the pain associated with Fibromyalgia, but any constant pain is too much. I hope you have found some relief over the past year and maybe found someone you can lean on. My wife was my rock and am ever grateful that she kept at the doctors and helped me get about everyday. Without her I would probably be back on the floor writhing in pain. My pain is mostly gone now – a bit of pain in my legs persists and will for years to come (according to the doctors, but I can live with it).
I’m a guy but I feel for you because for the last 32 years I’ve been living with around the clock pain that has only become worse over time due to severe multi level degenerative disc and lumber facet joint disease, bilateral sacriolitis, bilateral bursitis of the hips, disc herniation, and more. I had a good professional pain management doctor who prescribed me the max dose of Vicoden then it was switched to Percocett because all other conservative treatments have been tried and failed. I was also told by more than one expert don’t get any operations because in my case it would make a bad situation even worse. My pain medicine doctor was good, he had the medical proof with my MRI’s to justify giving me those medications then one day the hospital where he had his office began to pressure him from what I heard to cut way back on medications, he got fed up and ending up leaving the practice and the hospital never got a replacement doctor and just closed the pain management office which left everyone having to look for a new pain doctor. Why he was being bothered I don’t know because he was professional and monitored everyone so there was no abuse going on with medications with anyone the only logic that comes to mind that the government must have put pressure on the hospital. Long story short what is being done to chronic pain patients is discrimination against disabled people and I think the only way this is going to stop is if everyone files a national class action lawsuit against the government because those us who have trouble getting any narcotic prescribed so that we aren’t tortured with the pain are being left to suffer when it’s uncalled for. What others don’t seem to understand is that not everyone who is prescribed a narcotic for around the clock pain has an addiction problem nor does it mean they will. I always took my medication correctly, as directed and I never had a problem with it, I was only taking it because I wanted some kind of quality of life back, to be able to sit up, walk, try to do some basic normal things and now despite having all the medical proof I’m having a hard time finding a new pain doctor who wants to help. Sometimes I think both these doctors and the government forgets that people living with around the clock pain and have been prescribed a narcotic is because the medical industry has failed us, they have failed to find a cure and nothing else can be done, it’s a last resort. Sadly I also heard a news report that suicide rates have gone up because people in pain aren’t getting their medications as they should and couldn’t stand the pain anymore. That is horrible especially when there is some kind of help available with these medications. The government claims they are concerned about addiction/abuse but have you noticed when it comes to having no border security you have all kinds of criminals bringing in dangerous, illegal drugs but there’s no concern over that? It doesn’t even make any sense the way government does things. The majority of disabled people suffering with chronic severe around the clock pain don’t abuse their medications and they just don’t get it. People just want relief from the pain and use their medications correctly we just want to feel more like a normal human being again, no abuse of medication.