Back toThe Future
For some reason lately I have been reflecting on what advice the current Nan (having RA for nearly 20 years) would give to the newly diagnosed Nan from 1996. Some fascinating and surprising things came up.
Present day Nan would tell the newly diagnosed Nan not to be as fearful and worried about the future. I was overwhelmed with fear and anxiety when RA first struck. I could not imagine my life even 10 years down the road let alone the nearly 20 that have passed. I was convinced that my quality of life and my longevity would be seriously and negatively impacted. Present day Nan now knows otherwise. The truth is there are so many new and exciting treatments for RA on the horizon that alternatives abound and to even project your outcomes 6 months from now is futile and will only serve to make you less optimistic about your future.
Present day Nan would tell newly diagnosed Nan to not only accept the changes that RA brings to your life but embrace them so that you can adapt and keep moving forward. I am particularly referencing those things that we have to "give up". I spent a lot of time grieving over the losses brought on by RA. I started far too many sentences with "I can no longer......." cook, run, play tennis, and the list goes on and on. Present day Nan would say you will learn to do different things like enjoy eating out more often, sharing the cooking duties with loved ones, trying new things like Tai Chi and swimming. You will learn to broaden your horizons and welcome change. In fact RA has deepened my appreciation of many things I took for granted in the past like the simple pleasure of sitting on my porch with my husband and seeing the glory of a setting sun on the horizon. Present day Nan has learned to live in the moment with a mindfulness I doubt would have happened without the onset of RA! Strange but true.
Present day Nan would tell newly diagnosed Nan to let go of any guilt about getting RA and living with RA. In those first months/years of diagnosis I wasted time wondering if I had done something unhealthy that triggered RA. Why me? Well present day Nan knows that is a silly and useless waste of time and energy. It makes absolutely no difference so move on. Present day Nan has also let go (not easily however) of the guilt of not being able to do what I once did around the house, socially, at work, etc. I still do more than enough, just with adaptation and cleverness now! I wake up every day and start my day with an attitude of YES I CAN - BUT MY WAY!
Present day Nan would tell newly diagnosed Nan to not be a martyr but take the time to grieve the loss and accept that indeed your life will be different. I still allow myself days to cry and feel sorry for myself because that is OK and a good cry does wonders for the soul and mind. No need to be so stoic that everyone thinks you are a martyr.
Present day Nan would tell newly diagnosed Nan to not only accept help but seek it out. So many of us with RA are Type A people that are almost absurdly independent and that can really get us into trouble on so many fronts. I now know that asking for help is not a sign of weakness but rather one of strength since it takes every ounce of my strength to admit I need help in any area of my life. Newly diagnosed Nan dreaded the thought of dependence and saw it as a horrible aspect of RA. Present day Nan willingly seeks guidance, assistance and yes, help, when it makes sense. I have not given up any degree of my independence and in fact I think my ability to adapt on the fly served to make me even more independent than before RA!
Present day Nan would tell newly diagnosed Nan to be open to treatment options. Do the research. It makes you better informed and prepared but always be open minded to treatments. I think I actually accomplished this one fairly quickly but it was still a challenge. The pain, mobility issues, fatigue and other challenging symptoms that are all a part of RA can almost paralyze us and hinder making any rational decisions. I remember panicking over trying to decide what to do. Present day Nan would tell newly diagnosed Nan to consult your medical team, family and your gut and go with it! If it does not work, try something different.
Present day Nan would tell newly diagnosed Nan to reach out and connect with others who have RA as soon as possible. Starting a local RA Support Group was the smartest thing I ever did in this area. Sharing and connecting with people locally, face to face, has given me a very special fellowship with others who have RA. Online support is great as well. Newsletters like this one and blogs abound so have fun and explore them.
Lastly, present day Nan would tell newly diagnosed Nan that despite the chaotic and unpredictable nature of RA you can control your own attitude and coping strategies. Humor is a great tool and one that served both Nan's very well and still does. Bring a positive, proactive and joy filled outlook to each day and you will not only be fine you will be great!
Have you managed RA fatigue better than you used to?