You never seem to think that CP would be lonely but sadly it is. While I am NOT the only one who has CP or even my type of CP (Fibromyalgia) I am the only one (well my age anyway) that I know take 6 meds a day just so that I can function almost normally each day. Yes, most CP patients are above the ages of 40 or 50 but there are many of us who are in our 30's and younger. It seems most times we are forgotten in the mix when it comes to CP meds. For example, the whole COX-2 inhibitor (Bextra, Celebrex etc) debacle. They seemed to talk to older people who are on these meds, well there are tons of people who aren't considered a senior citizen on these (or were on) meds. Just recently, Nexium has a commercial campaign about taking the COX-2 meds with Nexium and who are the actors? Why an elderly couple of course. We are the forgotten face of CP.
So there are two ways that I am lonely. I am forgotten when it comes to the age factor and forgotten when it comes to me personally.
Not to seem soap-boxy or anything but this is a topic that really burns my toast. Doctors don't know what to do with me because of my illness. It is so elusive at times that they aren't even sure what meds to give me for my pain. Then I know quietly the age factor comes in. I am looking at least another 40 years of this rotation of okay days followed by agonizingly painful days. They don't know what to do with me. Most meds they would give CP patients are for short time only. So again, what do they do with me? Do they risk my stomach lining, my liver, my kidneys with meds I will be on for years to ease my pain? Or do they give me the minimal they can so that I am "comfortable" but not pain free.
Pain free days are rare now. Okay on a scale of 1-10, I hover around a 2 0r 3 each day. Not exactly morphine range type of pain, but still it does hinder me during my day. Then again, I do not work an 8 hour day, I sit on the couch and can make myself as comfortable as I need to be if a twinge comes mid-day.
I have been on disability since 2002 and on SSDI since 2003. Working 8 hour days became so painful I was eating Vicodin HP (the highest level you can go) like they were baby aspirin just to get through my day. Eventually I graduated to Duragesic patches, which never really helped my pain, just made me not care as much. After about 18 months of the Duragesic patches I had enough, I was still in pain and spending $50 a month co-pay for something that sort of helped. Now I am on a little of this, a little of that, nothing that helps much to be honest. But doctors aren't sure what exactly to give me anymore. Yes, there are other pain killers out there but most doctors are so opioid-phobic that they really don't want to even give codeine cough syrup anymore without fear of the DEA coming to their office and arresting them.
What does a CP patient do? Some of us use every bit of energy we have left to fight for our right to live not pain free....that will never happen but have a better quality of life with the meds we need. I fight that fight at every doctor's appointment, every day that I fight the urge to go to the ER when the pain is really bad when the doctor's offices are closed.
I have a husband who is terrified of me going back on pain killers. He feels I have become a changed person because of my CP. Well yes! DUH!!!! Of course, I have changed. When you are living with a small beast inside, that some days asks for more attention, that fights with my insides. Ergo the loneliness, no one around me understands that pain controls my life. Differently everyday, but it does control my life down to every single pill I take 3 times a day. It challenges me to do the "everyday" things that people take for granted like making meals or errands. Then there is "but you don't look sick" behavior that exists. For those of you who don't know Fibromyalgia is considered an "invisible" illness because you can't tell who has it and who doesn't. Nothing on the outside shows us as disabled or in pain. Either we hide the pain really well or we are "too young" to be living like this. Basic incredulty of someone my age dealing with pain that someone twice my age deals with.
I'm not asking for answers here or recommendations, but this needed to be said. Not just for me, but for anyone who deals with CP everyday quietly because we have no other choice anymore because we are too tired to fight anymore.
