Posted in Life in general, Tough Choices

Hard to Believe But It Is a Part of Who I am

It has been over four years since my diagnoses of rheumatoid arthritis and fibromyalgia. People still wonder how I function and live my life despite pain and feeling sick all the time. They don’t know what a day in my life is like. They just know that I live with two diseases that wreak havoc on my life whether it is the life I have with my family or the life I have outside of my home. The fact is living with RA and fibro, although hard to believe, is just a part of who I am.

The past few years have been learning and an adjusting process.  The first year of my life with chronic illness was my journey towards acceptance. That year was a very hard year but the fact is I learned a lot about myself including my capabilities, my strengths and my weaknesses.  I was forced to change jobs and to change my future aspirations. I also learned that I could be successful but I had to change my perceptions what success meant.  Once I was able to accept that I was more than just a person living with chronic illness and pain, I was able to determine my fate but before that came a lot of soul searching. I gained a lot of weight that first year because I was inactive and because I drowned my sorrows in food. Drowning my sorrows in food made me even sicker and I had to learn which foods were good for me and which were bad.

My second year living with RA and fibro was a year of growth. I knew who I was and I knew that my life was forever changed. What I did not know was that I still I could reach for the stars and I did. I started advocating for arthritis and fibromyalgia, and worked on master’s degree in legal studies.  I also started looking a new job because I knew that there was no way I could continue living with RA and fibro and working a very stressful job. I knew that in order for me to manage RA and fibro, I had to be more realistic about my expectations.  I was still in pain and year two was just as hard as year one. The fact is I was finding out who I was really was and I saw a different side of me – a side of me that sometimes made me angry and other times made me proud.

Year three was the year my brother was diagnosed with cancer and also the year we lost him.  That year was year of growth for me as I mourned the loss of my brother. Year three also taught me how strong I was and I didn’t realize how strong I was until I watched my brother fight the hardest battle of his life. In the end, cancer won and I also realized just how weak I could be. That was how I learned that it okay to ask for help.  I leaned on my family and friends for support.  So much was changing in my life at the time and I had very little control. Year three was a big year of personal growth for me. I continued to mourn my brother and with time, that loss was easier to bear. I also learned that there were times that a person had to walk away from things that were out of their control and I learned how precious life was and how important it was to appreciate the people you love. I learned that I had to love myself and that I had to set my sights high for the things I wanted.  I learned to hold my head and not let anyone dictate my happiness. I moved that year, finished my master’s degree, got a new job, and resolved a lingering financial situation and I worked on my personal life and making my faith stronger.  Year three was a sad year for me but I came into year four stronger than ever.

I came into my fourth year with RA and Fibro forever changed and with different perspectives on love, life, success and happiness.   I took a stronger approach to dealing with RA and fibro. I changed my diet, lost weight, become more active, and made further changes to my lifestyle. I also focused on my faith and on my career.  Coming in year four, I was more prepared for the obstacles that life threw my way.  While I struggled with infection after infection, I found myself feeling better overall with the diet changes I had made. I also learned that setbacks were merely setbacks and that even after that, I could continue the course.

Going into year five, I have never been more humbled about life, people and the wonders of the world. I have met a lot of people along my journey and they, too, have taught me so much. I no longer mourn the person I was before RA and fibromyalgia. If anything, I know that RA and fibro are now part of who I am. They are part of this person I have become who is strong in conviction and who can stand strong in the worst storms. I am better for the lessons and obstacles that have been thrown in my way. For a long time, I dreamed that one day I would wake up and be symptom-free but over four years later, I am not. I always wondered if things would get worse for me and if I would ever learn to live with the chaos that RA and fibro brought into my life but things have gotten better and I have learned to live with the chaos.  Granted, remission is something that remains in the back of my mind and while I long for it, I have learned that it is likely out of my reach. I will be taking a whole of medication, watching my diet and trying to be active despite pain for the rest of my life. 

I don’t want anyone to believe that living with two chronic illnesses is easy and or that it gets easier.  The only thing that gets easier is how you deal with a life like this one.  The numbers of those that go into remission are small and most medications are only as successful as slowing down the disease. They don’t stop it; they just slow the process down. For me, that has given me time that I thought I didn’t have. I was told I would be disabled by now and I am lucky that I wake up every morning and move my stiff joints. By the time I leave the house, the stiffness has lessened and my pain is tolerable.  The other RA symptoms are much harder, especially that ill feeling like you have the flu every day. The truth is I do have good days but when the winter months are here and weather cools and dampens, my RA and fibro symptoms return in full force. Every year at this time, I know what the next four to six months will be like for me. I accept that and I move forward. After all, life won’t stop because I am not feeling well.  Whether I like it or not, RA and fibro are here to stay and more importantly, they are a part of who I am.  While I wish I could change that, I am grateful for the person I have become.


7 thoughts on “Hard to Believe But It Is a Part of Who I am

  1. Thank you for such a thoughtful and open retrospective on your journey. RA changes a lot of things in our lives — including our perceptions and expectations. May the path before you be easier than the one you’ve left behind.

  2. You paint an honest and long term picture of how a chronic disease gives one perspective. It’s a tough journey but it can give one empathy, patience, and understanding.

  3. RA changes us plain and simple. It is up to each of us how much control we allow it to have. I love the breakdown year by year you have laid out. I think mine would be more chaos and confusion. Hopefully the next 6 months will be easy on you.

    1. Thanks Terry. Most of my life with RA has been full of choas and confusion. I guess I have just learned to find the balance as best as I can.

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