Sometimes, I find myself stammering for the right words, and they won’t come out of my mouth. The cognitive difficulties of a life with RA and FMS are the worst part. Sometimes, I can’t think or my memory fails me and it is the most difficult and devastating part. I take the same route to work everyday and yet, I sometimes get lost because I can’t remember what I was doing, i.e. going to work. Sometimes, I leave my home and arrive at my destination and don’t know why I am there. The majority of my cognitive difficulties are mostly because of the Fibromyalgia, but I have also read that RA causes some including brain fog.
The hardest part is knowing that no matter how smart or educated I am, my conditions are winning this one. Research has shown that the cognitive dysfunctions related to FMS are related to other symptoms of FMS and not FMS, itself. Some of those symptoms include depression and sleep disturbances. Most importantly, the pain seems to play the biggest role in cognitive performance of patients meaning that any person dealing with and managing chronic pain may require more cognitive effort and this may interfere with performance on cognitive tasks. The higher the pain level the more severe the pain condition and this turns into more severe cognitive issues.
An “Arthritis Today” article noted that new research, although not related to fibromyalgia alone, shows that “ chronic pain may affect the brain .” In this research, functional MRIs looked at the front region of the brain which is associated with emotion and is constantly active. With chronic pain conditions, the affected region of the brain does not shut off when it should and in the process, neurons are worn and cause disturbances to the brain as a whole.
I know that I have a tendency to overdo things on my good days as many of us do. However, the reason I do is that it allows me to remain productive and it means that RA and FMS aren’t winning. I look at the things that these diseases are capable of, and on most days, I want to fight back. Other times, however, I just want to find a place to hide where I don’t feel stupid, lost or less productive. So many people around me – family, friends and coworkers – know that I have these conditions but they don’t – and probably never well – understand the struggles that I face on a daily basis. The cognitive issues of disease leave me stammering and at loss for words, forgetful, scared and humiliated.
My job requires me to be alert all the times because of the detailed nature of the work and the deadlines, and I can’t always be. I am struggling with that and wondering when I will have to throw in the towel. Despite my employers knowing that I have these conditions, that is all they know. They don’t care how the job gets done or how much it takes out of me provided it gets done. I am not faulting my employers here; it just is difficult when no one gets how much harder you have to work than anyone else.
The bigger question is how long can I hide it? It is clearly tearing me up inside, but I pray that my medications do their jobs so that I can continue to be productive even if its just for one more day, one more week or one more month. You can only live for today and the make the best of today because we never know what tomorrow will bring.
Just like each person who is suffering from a deliberating condition or conditions, I grieve for the things and the abilities that I have lost and for what I will lose. It is not question of dwelling but questioning of wondering how our lives would be if not for chronic illness. The cognitive chaos that goes in my mind so many times a day is also the reason I hang on. At least, I know it is happening and if anything, it means I am still sane and I will take that as a good thing.