Let's Get Real
So how do we deal with the day to day realities of RA? First of all we need to be honest about every aspect of this chronic disease. By that I mean honestly examining how it affects us each and every day. It is easy to get caught up in the moment and stop the process of planning, but that is a trap we should avoid.
The fact is, RA is a hideous disease. On that we can all agree. It robs us of many of the things we took for granted for years. It changes our lives. It makes us confront our mortality. I am sure you can add many more items to this list of negatives. Reality is not easy with RA.
Learning to Live with RA
That said, we CAN live with it and we CAN learn to manage it. I am saying that having had this disease for 21 years now. Sometimes it will seem impossible but, trust me, you can do it. If you work hand in hand with your care team (medical, social, family, etc.) it can be done.
Of course this is easier said than done since pain and stiffness, fatigue and brain fog can be so overwhelming it is a challenge to even get out of bed, let alone plan an entire day. So, my suggestion is do it while you are still in bed or when your symptoms have lessened a bit, allowing some clear thoughts to enter your mind.
In concert with others who you work with and rely on, you can establish a plan to cope with each and every day. The bad days AND the good days. I literally mean a written plan. For example, my bad day plan may involve incorporating a lot of rest and little else into the day. Adding in necessary medications that I need to ensure I have on hand as well as supplemental items like heating pads, etc. Knowing that those are all in place gives me peace of mind. For the good days, I might have in mind a nice trip to a special place, in reserve, so that I can enjoy those “good days”.
Focus your lens
I try to focus on other things happening in my life so that RA does not dominate every moment, even on the bad days. Sometimes the simple distractions in life are perfect for coping with a chronic disease. For instance, sitting on my back porch, reading a good book, listening to nature all around me. Even on my bad days, I can do that without too much effort.
Getting real with RA
If we are getting real, RA is the toughest opponent we will face in our lives. Hands down. But that does not mean we cannot gather our will and fight it with every thought, action and cell we possess. I like to think of RA as my personal battle and one I refuse to lose. Or course, on the bad days, I am not so self-assured about this, but that is perfectly fine! Just keep repeating to yourself that you are stronger than you think and more determined than you every thought you could be. You can win the battle if you face it full on, knowing the realities, planning ahead, and confronting the truth of RA.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?