For as long as I can remember, I have been a survivor. Not only that, I am tough to the point where I am cold. Being tough to that extreme comes out of necessity to survive. When RA and Fibromyalgia came into my life, i never imagined that would mean lots of medication, prescription anti-inflammatories, and even muscle relaxers. The pre-RA and pre-fibro me would have been surprised to see me give in because of the pain. When I was first diagnosed, I thought that I would never allow myself to rely on a multitude of medications to feel better and then the pain got worse and I really didn’t have much of a choice.
None of us really have a choice when chronic illness and painful conditions like RA come into our lives. I remember my refusal to take methotrexate because of how strong it was. When I was finally convinced that I had to take medication to get better, I thought that plaquenil was not as bad as methotrexate. However, the plaquenil did nothing but worsen my vision. Then, where was Lyrica which I thought would magically make me better because it was the first FDA approved medication for fibromyalgia. The only thing it did was make me gain weight.
The more the disease progresses, the more medications I was on. I convinced myself that as long as I wasn’t getting any help for the pain, I was doing better than most RA and fibro patients. Then, a rear end collision resulted in two herniated discs and one bulging disc and a lot of neck and back pain. I started taking more and more medication including a prescription anti-inflammatory and a muscle relaxer. It made me very sad because I was not in control anymore.
Three years after my diagnoses, I have not been able to achieve the one thing I wanted to achieve: remission. Sometimes, I think remission is a mystical thing like the Holy Grail or something more realistic, like an exclusive country club. Maybe it’s because I have overcome so much in my life, I thought that I could overcome this. Some things are just out of my control.
The only thing I have been able to do is to redefine normal. Maybe I am delusional here or maybe, it’s my way of coping. Those of us that live with chronic diseases, life becomes about ups and downs. We no longer see life as normal and our lives become about chronic illness, medication, survival and necessity. I stopped long ago wondering what I did wrong to deserve this fate.
I sometimes compare living with chronic illness like a walk in the woods. When you first venture out, you don’t really know what the path looks like. You soon find out that there are many different areas, some requiring you to be more careful and some that you can cross with ease. As you walk, you never really quite certain what lies ahead. Living with a disease like rheumatoid arthritis or fibromyalgia takes a lot from you and you have to decide daily how you will manage life in order to survive out there in world that’s “normal.”
The morning, I asked myself how I ended up talking a handful of pills every morning. I had to out of necessity and I wanted to be a survivor. None of us expect to give up our dreams because of chronic illness and we keep fighting until we can’t fight anymore. One day, I woke up and methotrexate, prescription anti-inflammatories, and muscle relaxers were a part of my life. I wasn’t in control anymore.
I don’t feel normal especially in a world full of normal people. I hate that when the brain fog kicks in I can’t do my job or that I appear incompetent because I can’t think or speak correctly or keep myself from making mistakes. It is hard being chronically ill because you have to spent so much time trying to be normal and your life becomes all about just making it through the day.
What happened the dreamer I once was? What happened to person who had so much to give? RA and fibromyalgia happened. Now, life is about trying to get as much rest as I can so that I can get through the next flare-up. When did this become normal? This isn’t about normail; it’s about necessity and survival.
I know that I have been fortunate. My RA, as my doctor notes, is moderate. I suppose that makes me lucky even though it doesn’t always feel that way. I know that I am going to get worse and sicker and it’s taken me a long time to accept this even after accepting that I had to co-exist with RA and fibro. It doesn’t mean that while I accept it, it doesn’t get the better of me. Anyone with a chronic illness can relate. I have never been a fan of pity parties but we all need them once in a while.