I was diagnosed 20+ years ago with Reynauds, over the years my pain grew along with my fatigue and inflammation until I also acquired the diagnosis of RA and Sjogrens. The meds for these diseases eventually gave me Diabetes and Addisons. My RA is Severe/Aggressive. Needless to say to all of you, I need some help around the house with everyday things. I know a lot of you do as well. We all learn to cope, find new ways to do everyday things, readjust our days around RA and go on with our lives. This can take a lot of time, and everyone gets there along their own route. Now, here is a wrinkle that some of you may deal with along with myself. My wife is a cancer survivor, and a long time fibromyalgia patient.
We both need help now, everyday things that happen with little to no thought in our neighbors homes take planning and timing in our home. The trouble can be at times we are BOTH fatigued, sore and just plain feeling crummy. How do you deal with this?
I try my very best to take care of my wife no matter what, no matter when. She was fighting fibro long before I acquired my stable of autoimmune illnesses, and it has always been in my mind that whatever happened, I would be there for her. Take care of her, get things for her, help her with anything she needed. I think I did a pretty good job, always tried to put her first and make her as comfortable as possible. Then RA struck. I would find myself unable to do many things around the house that I used to do. At least not without a great deal of pain and fatigue. Suddenly I had so many doctor appts I could barely keep them straight, and I was beating myself up because now she was taking more care of me than I could offer back to her. You know the early days of RA, the depression, anxiety, your life has just shattered and you have no real idea of what to expect. Something had to change and fast.
What we did was sit and discuss all of these issues. By this time I was on an antidepressant, and though my RA is not really what you would consider "controlled" at least the medications were somewhat taming the beast. I was, and still am, on Long Term Disability and SSDI. We really decided to reinvent our lives together. We have a lot of time on our hands, why not take advantage of it? We don't really worry about what time to get up in the morning, or when to go to bed at night. When one of us has a "rough day" the other one can help pick up the pieces. We try very hard to balance the chores between us, I will admit she does the lions share of them. My hands are always so sore, and my feet and ankles have finally put me in a wheel chair. BUT, I will do anything I can to help. That can be as simple as who is going to drive us somewhere, who is going to walk the dog, or who is going to run the vacuum this time? When it comes to things outside of our ability, we look outside our home! We have a guy that mows our yard, a handyman to clean the gutters or hang Christmas lights. Friends that are more than willing to help out if we only ask.
How did this all work out? We have found that in reality, none of the "chores" really matter that much. Sure the dog needs walked, groceries need to be bought, bills need to be paid, but you know what? IT GETS DONE! Maybe not on a strict schedule, but we get it done between us. The most important thing to us is to simply support each other. We KNOW what the other is going through, and that is a true blessing in itself. More than that though, we are Married (nearly 19 yrs now) but we are also great friends and truly enjoy each others company. We do not expect things from each other that we know is out of the question. We agree to do things together, or not to do them, as a team.
True, I need help at times with goofy things, buttoning my shirt, picking things up off the floor, cutting a steak. And at times, so does she. What we have found though, that the best help we can offer each other is just plain SUPPORT! In some ways I have to thank RA, it has brought us closer together than ever before. If you have these same issues, you need care yourself, yet also need to be a caregiver. Try our plan! Support each other to the very best of your ability. Do not sweat the small stuff, or even the medium stuff! (the world will not spin off its axis if the dishes do not get done on a Tuesday!) And beyond all else TALK, plans, emotions, how you TRULY feel both about things and in a physical way. It truly works for us!
Published On: June 25, 2012