For the last year, my RA has progressively gotten worse. I
have been on all the drugs possible. Most work for a couple of years, and then
stop. So now I wait for the next new drug to hit the shelves – hopefully soon.
This time it isn’t as much the joints that is giving me the problem, as it is
the brain fog and fatigue. Everything I do wears me out. It’s like the video
games where your player loses energy as you get shot at or punched at. I lose
energy because I did the dishes, or I showered, or I walked downstairs to get
the laundry (this is a killer for me). Every night I mentally prepare my body
and brain for what needs to be done the next day. Before I get up every morning
I have already, in my mind, packed my lunch, prepared dinner, planned my shower
(hair washing day or not), and calculate if I can get the dishes put away. This
is not a controlling attitude, this is the only way I can get myself ready to
face the day. By the time I get in the car to drop my daughter off at school
and drive 30 minutes to work, my energy bar is half way used up. Thankfully I
have a 30 min commute. During that time I listen to books on tape. The rest
boosts my energy up a little bit. Some days I get to park a few blocks away
from work. Other days, I park in handicap parking near my office. Please don’t
judge me on the days I park by the office (this is a whole other post). Some
days I park farther away feeling great in the morning and realizing later that
was a mistake. Or some days I park close to work, and by lunch I am up for a
walk. A year ago I used to jog 2-3 miles during my lunch hour. This year, I don’t.
I love my job. It is so fun and so rewarding. I hate that some days it is hard
for me to work – not because of the job, but because my body isn’t cooperating.
It is so frustrating. By the time work is over, I am typically down to about
25%. If I had a lot of activity I could be borrowing energy from the next day
just to drive home. Then once I get home I typically have dishes to do, kids to
round up for bed and general straightening of the house if I can. I love having
a clean kitchen when I go to bed. Lately that doesn’t always happen. I am so
blessed to have a husband that can cook dinner. Every week I plan our menu, but
many times he has to cook the meals I planned. Whether it is schedule or RA, he
does it for me. I love that guy. The hardest part of the fatigue for me is that
it is invisible. You can look at me and I seem ok. The best way to describe
fatigue is the exhaustion you feel when you have the flu.
So, have you ever walked into a room and wondered what it is
you were there for? Most people have. It’s frustrating. So you walk out to try
to “reenact” the event by walking back in. Sometimes it comes to you, sometimes
not until hours later. For many rheumatoid arthritis sufferers, this is a
common occurrence. We call it brain fog. I know there are people out there who
don’t believe it exists, or that we are over exaggerating. We are not. It is
real. It does exist. Part of my RA, as I mentioned above, is brain fog. It has
progressively gotten worse. For a while I could hide it from others. In the
last couple of months it has impacted every aspect of my life. For whatever
reason I am not forming short term memories on many occasions. My children or
my husband will tell me something and I have no recollection of the
conversation. None at all. At work I struggle remembering simple words while I
type or converse with co-workers. One day I couldn’t remember the name clip board.
I kept saying “You know that holder that has a clip and it holds papers. Like a
board with a clip?” It took me 5 minutes to remember what it is called. It
scares me to think I could get worse. My Grandma Mabel had Alzheimer’s for over
15 years. She did great for most of those years, but it got really bad in the
end. I am afraid I am already getting it, or this is irreversible. I try to
keep lists everywhere I go, but if I don’t write it down right away I lose the
memory. Most of the time never returning. I can’t imagine how frustrating it is
for my kids and my husband. He is such a trooper being patient with me.
Through all of this I wonder if I will ever get better. I
have hopeful days and I have down days. Overall, I know I can trust that God
knows each day and what it will offer. I trust He is my ultimate Healer. He has
gotten me this far in my journey, I know He won’t stop know. As I read
scripture, pray and study His word, I am reminded of His love, mercy, and grace
He gives me. He really is all I need. I lean on Him. Abide in Him. Trust in Him.
My hope in writing is to educate those who don’t know what
RA is or what it can do to a person. I also hope to show those suffering from
RA or other chronic illnesses that you are not alone. That we all are in this
together. I have had this disease for over 20 years. Only in the last few years
(one perk of technology) have I been able to reach out to others and join
groups. It has helped me tremendously no feel so alone in the fight. So today I
confess I hate brain fog and low energy, but I know that God is bigger than
that and someday I will be released from all the pain, loss, and problems from
my RA.
