My RA Fears and Rambling

It is hard adjusting to live with Rheumatoid Arthritis.  That isn't because we want to whine, and cry, and say woe is me.  It has more to do with the fact that we never know what are limits are going to be day to day.  One day I may feel great and act accordingly,  but then I may pay for that for days or even weeks to come.  You see one of the issues those of us with RA have is that our limits change daily.  We don't know when we go to bed if we are going to be able to even get up in the morning let alone do menial tasks around the house.

A few years ago I decided to scrub the carpet at the front door way in our rental home.  It was a high traffic area and the dog had, had a couple of accidents there, so I got down on my hands and knees and scrubbed.  The next day I couldn't move my wrist.  This was the only time in my life I had called the doc up crying because none of the pain killers I had in the house would touch the pain.  I was miserable, and I was scared.  That's the thing about those really bad days, we don't know how long they are going to last.  Personally when I feel a flare coming on I have no idea how long I am going to be stuck in bed or on the couch.  I have no idea if the pain will ever go away, I know that probably sounds melodramatic, especially to someone who doesn't have chronic pain..  Truth be told though, I don't know if the pain will stop, and when you are in the midst of a flare that has you in tears and your doctors receptionist is ignoring your calls, then you start to think of it all as a little bit hopeless.  I wanted to get up and play with the kids, I wanted to be able to do my housework.  I wanted to live life, I didn't want to give up.  See that is something we have to face almost daily, we don't want to lose hope,  but some days it is so hard to keep a grasp on that hope.

I know people who have lost relationships because of RA.  I know people who have had to quit careers because of RA.  I know people who have lost almost all hope because of RA, I fear that happening to me.  I'm afraid of family members just getting fed up.  I have been told already that I'm just being anti-social by not always coming to things.  See the thing is we have gone to great lengths to make our home as comfortable as possible for me.  We have central heat and air, and it is on almost 24/7/365 days a year.  That is because if the humidity gets too high my RA goes crazy.  It can take up to a month for me to recover from one day in the humidity and heat, likewise for the cold.  We went to visit relative one year and we were told they had AC.  We were meant to spend three days and nights but left after one.  You see when we got there it turned out that the AC was only in one room, and it was broken.  By the end of the first day my hands were so swollen that I couldn't actually get my wedding rings off and we were afraid the might have to be cut off.  We avoided that by the skin of our teeth.  We took the kids bowling and within 20 minutes of being back in the AC and out of the humidity I was able to get the rings back off.  My husband decided we would go home as soon as we got back to the house we were staying at and pack our stuff up.    Even with all that, they still don't get it, I am still making excuses and being "anti-social".

I'm afraid that one day I may start using this damn disease as an excuse to not live my life.  I'm afraid that one day, it'll just be easier to give in and give up, than to press on and go forward.  I have been told by others with RA that I shouldn't allow my husband to have friends over because it puts too much stress on me.  How is that fair to him???  I have been told I had no business planning to make a big Thanksgiving dinner because it is too hard on me.  I have also been told I shouldn't have birthday parties for the kids because again it would be too much stress on me.  I never want to get to the point that I make my family quit enjoying life because I have this stupid illness.  I want to try to be as fair as possible in every way.  I prefer my husband to do his gaming at home, that way if I need him he's here, I know that, that isn't possible all the time so I try to be understanding.  I fail there constantly and I'm afraid he will start to resent me because of it.  I have asked him to let me know when I start being totally un-reasonable.  I don't want my comfort to trump that of the kids and him.  Let me tell you I am pretty sure I fail on that one constantly too.

I never want to let Rheumatoid Arthritis win.  I never want to be the person who can't simply enjoy life because I have let some disease dictate to me what I can and can not do.  That one is a hard one, because there are things I can no longer do, that I truly enjoyed.  I have had to make concessions, and move on from some things.  I had to give up working in my Family Daycare, simply because I could not longer pass the CPR certification, therefore I couldn't fulfil my duty of care.  What I don't have to give up are my dreams and hopes for not only myself but my children.  I don't have to be half a person, I just have to learn new ways.  I have to be willing to rise above, and not fall.  I have RA but it most certainly does not have me.  I can be happy no matter what...