Reinventing yourself beyond RA
In the early stages of RA, I did indeed feel like the disease defined who I had become. That is perfectly normal since you are still coping with the realities of having a disease that has changed your daily life and your future life in so many ways!
The fact is, I am different now. But how? Well, initially, I focused on what I no longer could do...like play tennis, run, cook, and on and on. It is overwhelming in the beginning and the pain and fatigue do not help with your coping abilities.
As time went on, however, and I began to make choices about the treatment and management of RA, I decided that there were still things I could control and it was time to begin to look at what I could do- not just what I could not do. That was a HUGE moment and not one easily arrived at. Once there though I realized that I needed to make a deliberate decision to pursue alternatives to the activities that had been such an important part of my life pre-RA. Truth is I am much more open to trying new things now and as a result I have become an avid swimmer and biking enthusiast.
In addition, I now have a much deeper appreciation of feeling good. The simple things I took for granted before - I no longer do, like going for long pain free walks with my dog. Enjoying the simple pleasures like watching a beautiful sunset with my husband on our back porch have new and deeper meaning for me now because I appreciate each and every day spent with loved ones.
For many women, myself included, adjusting what you can do around the house as a homemaker is really difficult. I simply cannot do the cooking and cleaning I once did. I really felt guilty about that for a long time but eventually I came to understand that if I overdid it, I would be a lot less productive and pleasant. I have a full time job that, although wonderful, is very demanding and so that had to take precedence over housework. A cleaning lady every two weeks solved that problem. I can still do the light cleaning in between her visits but having a cleaning lady has been a lifesaver.
Holidays and traveling can also present a challenge because they are 1) stressful and 2) usually require additional physical demands over and above what you normally do. So to handle them there a few things you can do. Plan ahead! I try to gradually get ready for holidays by shopping in advance and if decorations and additional cooking are part of the holiday, schedule what you really want to do and need to do, and when and try not to over do it! Also, ask for help. To be honest, I am terrible with this one. I like to do it myself and learning to ask for help was really tough for me.
I felt I was giving up some of my independence but...even if that is true...so what??? If you don't allow people to lend a hand you will actually loose even more of your independence over time. If you do not take care of yourself, prevent flares and ease pain, joint disability will result which is far more life changing. Get plenty of rest and take breaks. This is so important when routine is different because of traveling or holidays. The tendency to do too much is so inbred in most of us when it comes to traveling and holiday activities that it is really tough to make that change. But believe me, you will enjoy the trips and the holidays so much more if you follow these tips.
So over time (that is a key phrase you will see a lot!) I learned to adopt an attitude of what can I do differently to adapt to the new me? I looked for options, explored new interests, and worked to stay upbeat about change which can be very unsettling. No one likes change when it is forced on them and RA is not a change anyone would welcome. But how you learn to adjust to it is largely up to you. I decided I was not willing to give up the "essential" me, that is, the person who loves to laugh, read, watch fireworks, swim, dance, go to movies and plays and concerts, cuddle with my husband, my children and my dog, and so on. All those things that REALLY define me have not changed nor will they.
Once I came to that significant realization, the management of RA became another ongoing task to handle and so it has remained. I will not allow who I am to be determined by a disease. It is a choice I have made and one that has served me well for many years.
Cuddle with a loved one today and laugh!!!
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?