Today is Rheumatoid Arthritis Awareness Day and I must admit for the last 5 years I have not really publicly displayed anything on this day. Sure from time to time I would share a post about RA but, really I didn’t want anyone to know I had it. And when I did talk about it, it was as if I were just as invisible as the autoimmune disease itself. This is my first year fully, okay, 85% embracing this day.
I decided to see it as a day to say HEY, WE ARE HERE. EVERYWHERE. LIKE…ALIENS THAT LOOK JUST LIKE YOU working in your office, at your schools, etc. ( YOU KNOW THE WHOLE “BUT YOU DON’T LOOK SICK” COMMENT WE GET 🙂 BUT NO 🙂 ). And by aliens I mean this foreign illness has invaded our bodies without warning or permission. Straight from the “OTHERLAND” (MOTHERLAND).
It’s a day to explain to you it’s not “JUST ARTHRITIS” and it affects more than your bones. It can affect your heart and lungs and rarely, the brain. It also likes to bring along with it Fibromyalgia, Osteoarthritis, Diabetes and a “party of five” of other things. It interferes with friendships and every type of relationship there is.
It’s a day for others to learn a little bit more about what I go through daily.
So, last night I was going to go a bonfire, earlier this week I was suppose to go to an open mic poetry night, I also was asked to attend a business meeting but, as you can guess, none of that happened. I noticed last night that not much of anything has been happening even with careful planning. It hit me this morning “like a ton of bricks” (as I heard an old man say frequently and often thought that could be painful), maybe how you use to manage your pain is not working anymore. Your plan (manual) needs to be updated to match the increase of activities in your life or the slowing down of activities in your life. Those of us in this community know how much energy it takes to do the daily basics, keep a clean house and clothes, take care of a family and self, plus work and then other things outside of that. Even with all of the careful planning sometimes Dr. Evil (that is what I call RA) has other plans for you! (Muah ha ha ha….NOT FUNNY) and so you have to work around it or go to sleep! It is a juggling act with no applause and sometimes you feel like you are waking up to a circus of what to do now and what to next and what not to do. So, today I will take some time and see where it is I am going wrong and how can I not only manage the pain or fatigue (physically) but, manage the illness itself (mentally)….better.
What are we talking about here people? or doc’? or trainer? (wow, you have a trainer? No, not me…you…the reader.) You want me to exercise consistently when I have Rheumatoid Arthritis or Lupus or Fibromyalgia??? I can’t predict my pain so if my pain in unpredictable how can I be consistent?
Well, I have struggled with this mentally as much as I have physically. One day I am riding high and the next day I am rolling on the ground. It can be very discouraging when you desire to be consistent in your workouts or light exercises but, for reasons beyond your control you cannot. In the meantime, friends and strangers whirl around you getting on with it. If you struggle before any autoimmune illness certainly having one doesn’t make it any easier.
Well, here is a thought I had just the other day as I made some healthy choices for lunch (see delicious fruit above and I had a lean cuisine as well). I may not be as consistent in exercising because I can’t always control my body BUT, I can be consistent in what I put into my body and there folks…we have a victory!!!! This one absolute is about a made up mind (and not about a made up body) what you purchase at the grocery store and what you bring home. What you eat is more important in contributing to a healthy /healthier lifestyle than exercising alone. Yes you still must exercise! But the point of this blog is to control what you can and the one thing you can possibly me more consistent in is making better choices in what you eat. Do I always make the right choice? Of course not but, I have found some control in trying to be consistent in food choices. Whereas many of us battling autoimmune illnesses feel as though we are not in control. I hope this helps.
Before my diagnosis of Rheumatoid Arthritis at this young age, I never was very fond of chronic complainers. There is nothing like trying to enjoy a meal at a restaurant, an outing with friends, a family gathering only to hear a complaint after complaint after complaint.
Nothing zaps your energy faster than being bombarded with an earful of complaints. I think you may even find yourself hurting more after a positive event with a cloud of negativity surrounding it. I often excuse myself early or move to another room (or outside for quietness and fresh air) if I can. I have been trapped in a car or an outing with a complainer and it is no fun. By the time I get home I am drained. In a situation like this I can only run (in my mind) to the front door and lay in bed. I try to watch something on television or read a book/magazine or “Pinterest”my way back to happy. 🙂
The point is you have to detox from complainers and be vigilant about not being the chronic complainer because you can also increase your own pain.
There is a “Spoon Theory” used by those of us who have an autoimmune disease such as Lupus or Rheumatoid or Fibromyalgia. I will get to the relevancy of that shortly.
I woke up with much energy. I slept in a little. I went to the outlet mall in Mississippi which is only about a 25 minute drive from where I live. I went in one store with my daughter, my mother, and my sister. We left there and stopped for a late lunch on the way back. I dropped them off and came home. I felt my energy waning right after I left the outlet. I thought if I could get home and get some rest I would be fine to go to an event with my old classmates. I purchased tickets last week. I have had my dress and shoes and accessories planned for a week.
I came home but, I had to get back out because the dog (I am dog sitting for my brother-last minute) needed food. I came back home and I couldn’t relax. I know I needed to but, I just couldn’t. I asked myself, what the hell happened to all of my energy? I only went to the mall and back. Then I thought about the Spoons. I just started using this even though I have known about it for some time.
So where did my 12 spoons go?
- Two loads of laundry this morning and folded one= 1 spoon
- Breakfast-no spoons
- Clean up room (didn’t finish) = 5 spoons
- Get dressed=1 spoon
- Pick up sister and mom, drive to outlet=2 spoons
- Help daughter pick out clothes=1 spoons
- Drive home and drop off mom and sister=2 spoons Out of spoons at this point but, I have to do more
- Go back out get dog food=(-13)
- Fix a snack = (-14)
- Get dressed for bed (-15)
- Chic down!!!!
Well…there you have it. About tonight…
I didn’t mind or dislike washing my hair no more than any other person until I was diagnosed with Rheumatoid Arthritis. In the beginning it wasn’t so bad because I could still manage it well. Lately, it has become more of a dread not because of detangling the hair so much. It is because it is takes forever (hours) for me to all of the steps. I have to rest in between or comeback to the twisting/rolling/blow drying later. And even when I am doing that I must rest in between or risk pain, a flare up and soreness (soreness courtesy or Fibromyalgia) later.
However, today was the worst day and an eyeopener. I can’t hold the hose to wash my hair as long as I use to. This frustrated me to tears today. Wash and stop, wash and stop, wash and oh just yank the hose and beat the sink with it! Yeah…that did not solve the problem but, it relieved some frustration. (My deep yoga breaths and count to 10 went right out the window). So, after I gathered my calm I simply took my time. I am on a tight budget and going to the beauty shop is a luxury.
Sometimes, many times, it will be the little things that get you. Cry. Yell. And adjust. And get creative. And keep going. The victory is in the never giving up.