June was not an easy month for me as I have spent most of it being sick and tired. Today is another day of being sick and tired. These are the days where I wonder what control I have and whether I am actually winning any battles. Sometimes, it feels like I never had a fighting chance. I just want to feel somewhat normal but I don’t even know what normal is anymore. Is it a state of mind or is it an actual thing?
Today has been a today of accomplishing very little. I had things to take care of and nothing has been done. I can barely keep my head above water. I keep telling myself that I am stronger than this but the more I tell myself this, the weaker I feel. One bad day can do that to you. I am struggling with understanding what this means for the overall picture. With the exception of my first year with RA and Fibro, I have never gone this long with symptoms. It is not just the pain, it is the feeling of being pain and the fatigue that are taking their toll on me.
I just want to me again – not the me before RA and fibromyalgia – just the me I was when my symptoms and pain were well managed. I am trying to get there but it is not an easy thing. People do not realize how difficult RA is and the majority feels that it is just a question of maintaining pain without realizing that there are other symptoms. It is the other symptoms that do me in. I have even dealt with my own share of complications such as the constant infections, eye issues, and stomach issues. All of these can be difficult for the RA patients. With fibromyalgia, it is not just the pain that gets me, it is fibro headaches and I am dealing with one right now. They are just as bad as migraine headaches.
I am trying to be strong but living with RA and fibromyalgia isn’t for wimps. I feel like I trade one for the other because one or the other or both are causing symptoms. This latest headache is has been pretty debilitating bringing with it neck pain. I found myself earlier near tears, some from the pain and nausea, and some from frustration. I stopped myself and reminded myself that tomorrow will be better. I want to enjoy the summer and get out of the house but so far RA and fibro made that difficult in June. Today is a new month, maybe this month will be better.
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About Lana
I will start by saying that my blog is about who I am and how I have grown, preserved, and endured since being diagnosed.
I was diagnosed with rheumatoid arthritis (RA) and fibromyalgia (FM) nearly five years ago after many years of dealing with symptoms that no doctor could explain. All I wanted was closure and, to me, that meant finding an answer to why I didn’t feel normal. Several days after having my now almost five year old, I awoke to the inability to walk or use my hands and within a week, I finally had a diagnosis and this time, it sank in that it was real thing.
Steroids, a lack of energy, and physical pain take a toll on you. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. Imagine being in a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. What I wanted was closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me and in this case it meant accepting that chronic illness was now a part of my life.
One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too.
I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FM may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worse than the physical but we all struggle with something and for me, it is RA and FM.
I’m so sorry that your summer so far has been so rough. Does humidity make the pain and headaches and other symptoms worse?
I generally have good summers Deborah but this year the heat has been too much and it is likely the reason I am struggling so much. July is a new month and tomorrow a new day – better days are ahead.
Cry it out Lana. Sometimes crying makes a world of difference.
I hope this month is better for you.
Thanks Cathy. Sometimes, we just need to let it all out. I hope July is better for me too.
Lana, And how about the fibro fog and lack of sleep?? Reading you blog was like reading parts of my mind. I have fibro and OA amoung several other things also so I could really relate to this. I have not really touched upon it yet in my blog. But this last 6 months has really messed with my writing and blog. So I do understand. I think you said it gently and understandable for others. There are some good articles in the Arthritis Journal by Dr. Andrew Holman RA Doctor from Washington who left his practice and went totally into research for fibro. Some good stuff. I wish you the best and will stop by to see what I can learn from you. You have a good attitude. I don’t get to read every blog I like as much as I like let alone blog as much as I like but then you understand that. Thank You for your openess on this.
Thank you for commenting and coming by. June was a tough month but tomorrow is always an oppurtunity to be better. Thanks for sharing the information about Dr. Holman – I will take a look. Thank you so much for commiserating – it is good to know that others understand.
I am sorry you are not feeling yourself. Give yourself a break. Whatever you needed to get done is not as important as you feeling better. I know that “keeping my head above water” feeling and it doesn’t feel well. But sometimes that is the best you can do. Know you are doing your best for the day and maybe tomorrow you will be able to do more. Or maybe the next day. I hope you feel much better soon.
Thanks for coming by and commenting Adrienne. It is nice to know that I am not alone here and that you and others understand what I am going through and what I am saying. I have to do the best that I can and that is all I have control of. Better days are ahead.
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