I have an alibi. I was in the bed sleep, minding my own business and all I did was wake up. You’ve got the wrong house! Let me call my lawyer. Someone’s going to pay for this! (Probably you!) It’s the SURPRISE FATIGUE. The kick in your door and take no prisoners fatigue, except your body. But, I haven’t done anything! Oh well…that’s what they all say!
You see I can understand if I was physically busy today or if I have had a long week of things to do. I can understand fatigue showing up at my door. But, what I can’t get use to is when fatigue shows up for no logical reason. I want it to have a reason. I need it to have a reason. It would be nicer if it showed up like the Girl Scouts selling cookies so you could politely decline. “Oh no, no thank you, I got some fatigue last week. Try back in a few weeks. I have three doctors appointments, a family gathering and a birthday party to attend. Not to mention household duties and parental/spousal responsibility.”
Or maybe you could say “Sorry, buddy. No one by that name lives here.” And give it this strange look.
But unexpected fatigue is rude and as brutal on your body as the fatigue you experience when you can understand why. Fatigue can come from mental or physical exertion. As I reflect on my week or just the day before I realize I have dealt with quite a few “mental” exertions: Stress solving a financial situation, not so good news about an unresolved medical mystery from the doctor which left me pondering, completing a book I have re-read and edited again this week before the final release. I forgot to pay my dental insurance and now I have to try to get it reinstated. Oh…I see why you may have showed up fatigue. Nevertheless, you are still unwanted. I had great plans for today!!!
The first thing I let go of was the definition in my head of consistent exercise meaning everyday and 30 minutes to an hour of exercise. It was the beginning of a breakthrough. Each time I didn’t exercise daily or didn’t make the 30 minute mark I was disappointed. In the chronic pain world I live in it may not happen every day and it certainly may not happen for 30 minutes. Consistency is any 3 days or more. Time is whatever my mind and body agree upon.
The second thing I did was stop assigning days, exact times i.e. at noon and what exercises I was going to do that day in stone or at all. I realize my body may not want to walk on Monday if I my hips have given me the blues all night or the soles of my feet are tender and swollen. My shoulder blades may be on fire and I can’t do butterflies with light hand weights (3lbs). Knowing in your head that your exercise days are flexible and interchangeable relieves you of the pressure to do what you said you were going do at 5:00 A.M. before you head to work or get the children ready if you took a painkiller at 1:00 A.M. it’s not going to happen! And it’s okay. You can choose a different exercise. You don’t get to say well can’t walk oh well. You say can’t walk…let me do some hand exercises or upper body exercise…let me stretch. You can you tube and google hand exercises, feet and toe exercises, chair exercises, yoga for flare days. Give yourself options.
Next, I set a goal and then I set “realistic” goals. You see, in my heart I want to set a lofty goal and then when I fail at it I will be disappointed. So I set a lofty goal and then I set a realistic goal. I am going to do 100 butterflies because I think I am the old me but, then I say if that doesn’t work I will settle for 10. So when I do 10 or 12 I am happy! If shoulders start to hurt at 5 I am happy. I will do 5 more another day. See???? Win-win.
The one thing I wish I could have done first was STOP COMPARING MYSELF WITH OTHER PEOPLE EXERCISING OR MY OLD SELF. However, I will tell you the truth: It is something I STILL from time to time. I will say I have learned to think “Wow, that’s awesome she or he is doing 10 miles. Great job!” and I keep going and taking my breaks as needed. I can be happy for others and I can be grateful my body is still giving me her very best under strenuous circumstances. I often thank my body after I am done or if I can’t finish I thank my body for trying. In therapy, I am learning to move on from the old Nikki and embrace the new reality of Nikki. I was fabulous doing 5 miles and I am fabulous doing 1 mile no matter how long it takes. Somethings in the past do not serve me in a positive way and reflecting on it does nothing for my new reality. I have many things I can still be grateful that are not physical. And so do you!
*We have flares and they can last a day or weeks or months. Do what you can and get the rest you need but, just keep going at your own pace.*
On December 31st I had a dream in which I was shown I had access to all sorts of jewels. It was a hidden box of amazing pieces and stones. My first thoughts upon waking up were “Hidden Jewels”. I knew then “God, the Divine Creator of the Universe” was telling me that on the inside of me are jewels I didn’t know I had access to (or maybe forgotten because you know I believe I have been here before and perhaps they were collected in lifetimes…yeah I know I love me too). I went to the mailbox in the dream to get some mail and the person in the dream (a good friend of mines was dressed as the mailman) said “There is a box hidden in this box” and that is when I “opened” the hidden box and there were these amazingly unique jewels of all kinds and sizes. Some were loose pieces of gems and stones. Many others were fashioned into necklaces, earrings, and bracelets. It seemed as if I could never get to the bottom of this large long safe deposit box. It was long and deep.
So, I wanted to answer two questions for you. 1. How do I know if I have hidden jewels if no one tells me or I don’t have a dream or epiphany? 2. How do I access the hidden jewels?
- I am telling you NOW that you have hidden jewels on the inside of you. So now you know! (Pass it on)
- Open up. You access the hidden jewels by opening up to the possibilities and opportunities that come your way. You access the hidden jewels in meditation and prayer. You access the hidden jewels by staying connected to your Source and yourself (your heart). It’s that simple!!! It will come to you…sort of like a dream 🙂
So go forth, from here on out and “Be Jeweled”. Adorn yourself in your gifts and talents. It’s not showing off. Who puts on their jewelry and says “Oh…I hope no one notices my favorite necklace.” They are your gifts. Go forth and “Be Jeweled” with an open heart and mind as the keys to accessing all of your other hidden gifts and talents.
It must be nice to be not have to work 40 hours or not to work at all. It must be nice to receive food stamps or assistance. I wish I got food stamps. I wish I didn’t have to work.
It never ceases to amaze me the dumb and thoughtless things that fall out of the mouths of human beings in relation to the unknown situations or hardships of other people. I don’t know if I am get older and less tolerant of ignorant statements. Standing in line, the woman in front of me paid for her food with food stamps. After she left, the cashier says to me, “Must be nice not to have to pay for food. I wish I had food stamps and could sit at home.” Before I knew it I responded “Really? You wish would lose your job or due to an unforeseen illness or accident be rendered unable to work and take care of your family so that you wouldn’t have to pay for food and sit at home?” Silence.
Must be nice to wonder where your next meal is going to come from. Must be nice to fall on hard times or be marked as disabled. Must be nice to feel like a loser because you receive government assistance and everyone in line thinks you’re a leech. It must be nice to worry about your family’s future. It must be nice to all of a sudden have it all and lose it. It must be nice to work all your life and retire and can barely make ends meet.
No, it must be very stupid to say things without thinking about how a person ended up where they are. And for all you don’t know, it just may be a temporary set back. Be careful what you wish for this could be you.
Thank you. You’re Welcome.
I can’t do that because of my toe.
I can’t do that because of my hip.
I can’t do that because of my knee.
I can’t do that because I am in a wheelchair.
I can’t do that because I use a cane or walker.
I did “that” or tried “that” and it didn’t work.
I can’t because I have RA, Fibromyalgia, Lupus, Osteoarthritis…etc…etc…etc…
Okay, first of all (and yes, I am doing that sassy rolling the neck thing with my hand on the hip), you can’t tell me I don’t understand because to some degree I do. So not to offend the sensitive soul of one with an autoimmune disease, let me talk to myself for a second.
Nikki: You can’t or you won’t? You can’t or does it hurt? You can’t but what can you do and don’t say nothing because you can do something. You can’t or are you afraid? You can’t or you feel as though “they” may be “looking at you funny?”
Well, Nikki (YOU), you have to change your attitude first of all. Yes, I know you went through or may be going through the “why me phase” or experiencing “B.A. nostalgia” (Before Autoimmune). But, listen, you have to become the very thing mentally you were before and that is a fighter or warrior. If you never were that then you must become one or you will speed up the process of the toil it takes on your body. Nikki (YOU), you can not or will not go out without a fight! You are the ROCKY of your illness.
So how can you improve your attitude?
- Prayer works miracles
- Meditation works wonders
- Positive quotes on the mirror or your nightstand that relate to attitude, inspiration, etc
- Instead of always searching for the bad things about your illness or disease search for people who are living successfully with it and draw from their ideas and perspective
- List or say five things you are grateful for every day morning or night
- Drink more water (just thought I would throw that in there)
- Eat healthier because you will feel better physically and it will help you feel better mentally
- Face your fears about your illness or disease and think more about what you can do than what you can’t do and be forever grateful for that
- Try it again and again and again. Try something new. Create an exercise of your own.
- Cherish the good moments, spurts of energy and use them to your advantage. Don’t worry about “I will hurt later” because what I have found is you are probably going to hurt later anyways.
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.
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…