I have to say that I spent a lot of time muddling through a life with rheumatoid arthritis and fibromyalgia. Next month, it will be four years since I was diagnosed with RA. Interestingly enough, my son will also be four. For those of you who do not know, I was diagnosed shortly after E was both. A few days after having my son, I awoke to the inability to walk or use my hands. My entire body was swelled and my fingers were curled up into fists. Needless to say, it was a very scary experience. I went to the doctor hoping my family doctor would prescribe something to make things better. It was not until I heard her utter the words “rheumatoid arthritis” that I knew my life was about to change.
I was 32 was I was diagnosed and RA made me feel like I was 80. I felt like I was handed a death sentence because all the information on the internet made it seem as such. I did the only I could do given the emotional and physical setbacks I was experiences. I called my sister and I told her that I needed her. She stayed with me for a little over two months. If not for her support, I am sure how I would have gotten through the worst two months of my life. That flare-up eventually subsided and under the care of a rheumatologist, I was able to return to work. As I reread that line, it sounds as if it were easy or simple, the truth is it wasn’t. However, I choose not to look backwards because it keeps me from focusing on the future.
People look at me and assume because I advocate for arthritis and fibromyalgia and because I am knowledgeable about the two, that I have my act together. If anything, that is far from the truth. Sure I know a lot and heck, I even make plans but the truth is that no plan is perfect. I can plan and plan all I want but the fact is my life is busy and I live with two chronic illnesses. I don’t always take my medications on time and sometimes I forget to take them all together, I don’t always eat healthy, I am not as active as I should be, I don’t always avoid stress, and I don’t always get enough sleep. The fact is – I am just getting by.
I have made plans and decisions about how to best manage my health and for the most part, I do stick to the plan. For example, I make healthy food choices daily but sometimes, I don’t always have the energy to prepare meals so I order out and try to make the choice as healthy as I possibly can. Sometimes, I am too busy to incorporate exercise in my busy day but I keep moving and I hope that I am active enough. I sometimes forget to take my medications but I take them the moment I remember to. As far as stress, avoiding it isn’t easy so I have trained myself to calm down – sometimes with deep breathing, sometimes by walking away for a short time and sometimes, I seek guidance through prayer. I don’t always get enough sleep so I try to lie down or take a nap during the day. I know and understand that my best laid plans can fall though and I have learned to be okay with that.
As I get close to the fourth anniversary of my rheumatoid arthritis diagnosis, I know that I reached a level of acceptance that surpasses anything I could have imagined four years ago. I get that I am not healthy and that chronic illness is a part of my life and sometimes, I still struggle with the emotional ramifications but overall, I know that I can still live my life despite chronic illness. Of course, there will be days where I will be fumbling along but there will also be days where I feel like an expert in living successfully with RA.
I don’t think any of us really have a perfect plan in place. I think in the beginning we want to believe that we can set up a management plan that if we follow through flawlessly, we will magically live symptom free and pain free. We want to believe that the perfect plan will lead us to remission. Sure in the beginning, we follow it without slipping but after a while, it just feels like we are so focused on dealing with our conditions that we have forgotten how to live our lives.
My experience has taught me that living with chronic illness is about trial and error. You figure it out one day at time and you accept that no plan is perfect. You can try hard to eat right, exercise, take your medications, not stress and sleep well and still things can go wrong. It really comes down to how you respond to the setbacks that makes living with disease successful. For me, it is about getting up even when it feels like I have nothing left in me. Sometimes, the motivation kicks in right away but other times, I need time to pull myself together before I can move forward. I don’t consider myself an expert on living with chronic illness but I do believe I have become somewhat of an expert on living with me. And it only took nearly 37 years to figure that out!