It’s been 5 years since I was diagnosed with RA and Fibromyalgia. It has taken me almost that long to perfect birthday plans and celebrations. I recently celebrated my birthday this weekend (and plan to celebrate it the rest of the month!) and I think I have finally found the key to enduring it without wearing myself out.
I plan in advance what I want to do.
I ask my friends and family to give me a heads up if they have plans.
I put a day or two in between plans.
If it’s going to be a long night I make sure I get plenty of rest in the day or make my day light and easy. I plan to do very little or nothing the next day.
If it’s going to be a heavy day activity I plan to do nothing that evening or the next day.
I have always celebrate my birthday in grand fashion. It’s who I am. It’s what I like to do. I love being alive another year and I believe it’s a special day. You were born with your dreams and purposes. You are fearfully and wonderfully made and you came here on that day to bless the world with beauty, your gifts and talents, friendships, love etc. I love to celebrate the day the Universe delivered another special package to the Earth.
*Singing* “What about your friends? Will they stand their ground? Will “you” let them down again?” Let’s face it. RA and other chronic illnesses will change things about you. Therefore, it changes some friends perception of you. Heck, it even changes your perception of you. It changes your energy levels. Some days it’s where it use to be but, most days it’s not. Sometimes “friends” just don’t understand.
You use to be the life of the party and you still are. You are just not at every party. You use to be able to work 8-10 hours go home do whatever needed to be done and be back out the door and off to have a few rounds. Maybe you can’t do that but you still hang out sometimes past your bedtime which also may have moved up or not depending on your sleep habits or lack their of. Nevertheless, you are all the way there when you are there!
Yet, they still may not know what to think or how to feel about the “new” UNimproved you. They may think you are acting FUNNY. They may think you can’t do something so they simply don’t invite you. I really hate that one. Let me decide for myself what I can and can’t do and if I want to hurt or not later. It’s my choice! Some get upset that you are ALWAYS sick and can NEVER seem to make it. I am sure it’s not ALWAYS and NEVER but it seems like it because once before you were ALWAYS there and NEVER missed a beat. These are the ones that take it personal. They shouldn’t but, they do. As if you already don’t feel bad enough this is like adding insult to injury as if you can CONTROL when you have pain and for how long. There are certain things we can and can not do to bring on pain or make it worse and that doesn’t always work. It is us who must adjust our plans and attitudes when dealing with pain and fatigue whenever it shows up.
I have had friends that treat me like they always have because they have known me long enough to know who I am and how I am. I have had some friends, because it’s their nature, to want to do everything for me. God love ’em! (I got that phrase from an elderly person lol). They mean well and sometimes I have to say “Thank you so much but let me try it first” and at others times I just let them do whatever it is because I know it makes them feel good. I like doing things for people for that very same reason.
The best way to solve the friends problem is to be vocal and to be honest. The best way is to know you would if you could. You know you wish you could turn back the hands of time when you could do it all but, that’s not happening and it’s cool. T.L.C is what you need form your friends. Tender Love and Care.
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.
We could blame the way we are on our personalities saying “This is just the way I am or I have always been “that” way. If “that” way has gotten in the way of jobs and relationships maybe you should think about getting to the root of “that” way. WHY are you the way you are?
You could blame your parents, your childhood, your past experiences, and your illnesses. When it comes to some of our negative and damaging ways, it’s not so much about who’s fault it is as much as it is about who’s responsibility it is to change those ways. You are not a dog and you can be taught new tricks. Instead of assigning blame which gives us a way to justify our behavior or relieves of us of responsibility, I propose the idea of citing these things or people as sources. They are the root causes branching out into our thoughts, actions, and words. What are the “sources” of my behavior? What are the “sources” of my feelings and thought patterns?
It is a matter of will, choice,and work. Real work. A real look at the source but, the real WORK begins in the effort to change those thoughts which will change those feelings and replace those actions with new and improved actions. The work is NOT easy. Sometimes help has to come from a spiritual figure or professional help to assist you in the unravel of those tangled roots and put new tools in front of you. This overhaul is a long haul and can take years to improve. I’m still untangling roots!! I don’t want to keep producing spoiled and rotten fruits in my life. I want to cut the root that produces the bad fruit.
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 have a really bad cold and if you have RA or an autoimmune disease you know having anything that will further compromise your immune system is a disaster. I woke up feeling like crap. I thought to myself: “What is this?” It’s not RA. It’s not Fibromyalgia either. “What the—-?” One minute I felt chills and the next minute I was hot. I hope it’s not the flu. It wasn’t. It is a cold. A nasty, disgusting, cold.
Well, today my fever stayed away and I had some strength. I decided to cook. I didn’t cook yesterday. Chic fil A it was and whatever one could find if they got hungry later. When you have RA you strategically cook. You want it quick and you want it delicious. So here is the quick meal I threw together in 30 minutes.
I cooked steaks on an electric grill (the old George Foreman) and stir fried some veggies. My daughter wanted rice and the complete meal was done in less than 30 minutes. I was not on my feet long. Only for the stir frying (3-4 minutes) and when I seasoned the steaks. The grill did the hard work and I sat down. I didn’t eat much of my steak but I ate all of my veggies. My appetite comes and goes with this cold. However, leftover steaks and veggies become and omelet in the morning. 🙂
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.
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.