I have had my moments before RA and Fibro where I didn’t want to be bothered but usually, like everyone else, I was going through something or simply moody. You eventually come out of that and get back to life. Well, this isolation that occurs with chronic illness and chronic pain is a different slope. A very slippery one that can have you sliding down a slope into deep dark valleys of depression or becoming a permanent hermit. Whether you know it or not neither one of those scenarios is going to improve your pain in the long run. It’s going to make your suffering worse and often facilitates it.
Yes, we all need time alone and some of us more than others. However, I have learned that if I don’t eventually turn that ship around I am headed into the deep waters. The truth is we need human interaction. Some of us can’t get away because be have a spouse or children or family or all three to take care of. We find ways to isolate ourselves by skipping family outings and gatherings. This is okay but, when it becomes all too often and never getting out what are you really shrinking back from?
We have to address the mental toil our illnesses take on us and not let it get the best of us. I found myself drowning numerous times in isolation because of the pain, because I KNOW no one understands and to avoid certain things I thought “people” thought about me REAL or PERCEIVED. Alone time and isolation are two different things and I think you can be isolated even if you have a spouse or family. You can be there but NOT there mentally and emotionally. I urge you to get the help you need by finding a good therapist to help you cope ,understand or deal with whatever you are going through. Many of us feel the same way. You are not alone.
Of course I did the research on this proverb that Jesus quoted in the Bible “Physician, heal yourself” but, I want to take a different perspective on this proverb. What if we are all Physicians in this day an era when it comes to HEALING not only our bodies but, our minds, hearts, and souls? Meaning what if we have the knowledge, the information, the “wherewithal” (just wanted to say wherewithal because I have never used that word! LOL) to heal whatever ails us?
We KNOW making healthy choices and giving up bad habits can help heal our bodies. We know that meditation, a spiritual life and prayer can help heal our souls. We know that talking with a good therapist, wise friend or good leader can help us repair the mental anguish we suffer from. For all we know, all of these things combined can work miracles. We are miracles! Developing a listening ear for you body, your heart, your mind and taking heed…(please take heed) can make us better physicians to heal ourselves. Oh yeah, and a good physician knows that what works for her or him may not work for others.
You’re too YOUNG to have…Arthritis.
Response: First of all, it’s not Arthritis it’s Rheumatoid Arthritis and yes there is a difference. Second of all, I know.
Well, you know, we all are getting old, we all have Arthritis.
Response: It’s not arthritis, it’s Rheumatoid Arthritis. It’s not your grandma’s arthritis. It affects more than your joints.
What’s wrong with you anyway?
Response: That’s a rude way to ask me.
You’re ALWAYS sick.
Response: Probably because I ALWAYS have R.A. (Rheumatoid Arthritis and Fibro).
We didn’t ask you because we thought you may be sick or “that” may be too much for you.
Response: That was very considerate of you BUT, could you please ask me what “I” would like to do and not decide in advance what I can and cannot do? Thank You.
You’re always sleepy.
Response: I don’t sleep well at night.
I really hate R.A.
Since I was diagnosed with Rheumatoid Arthritis and Fibromyalgia my life has been turned upside down. I think I am at about 180 degrees now, so I am midway from being right side up. I have not been working in the traditional sense and I had to move to cut expenses.
To be honest with you, I wasn’t crazy about where I stayed but I absolutely loved the neighborhood. I was blessed to find a place that was twice the size with a lower rent, not too far from my old neighborhood and shops but, the neighborhood I am in has it’s woes. In my condo, there are some things I don’t like. They really get to me because I am a firm believer in when you do something, anything you do it right. And when things are not done right or half done I can get physically ill every time I see it! I am a Pisces and we love to be surrounded by beauty. I won’t tell you what it is that disturbs my peace when I see it. I will reiterate that is drives me NUTS!!!! I also stay on the busy side of a street so sleeping can be a challenge as you know having RA and Fibro you already can’t get much rest.
However, in order to keep my sanity and blessings flowing I often have to remind myself how blessed I am remembering things can be 10 times worse. I also have to create some happiness and beauty where I am. I will plant a garden. I will decorate. I will get a dog. I will get some fish for my aquarium. When I look at the things that make me go UGH!!! I start to name all the things I love about this place. I love my neighbor and her son. She is my friend of over 15 years and her son and my daughter are cousins (I am an honorary aunt). We help each other out. We sit on the deck and sip cocktails and enjoy the night sky. I love the space. I love the beautiful tree outside that blooms and when the sun hits the bark it illuminates the entire space. I love my carport. I love that it is gated. I love that we look out for each other over here. I have lenient landlord and who will fix things quickly. I have two huge closets. I am down the street from my sister. The tile floor is beautiful.
Half the time when I go into the UGH mode I find it is really because I am feeling down about my circumstances or I am having a extremely tough day physically and emotionally. I say to my God, my wonderful Creator of the Universe: It is well with my soul. I trust you in this place. I can create my way out. It is not my final dwelling place and I am so very thankful for the layover on my way to my heart’s desire.
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.
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.*
In comparing our lives to a river, I don’t believe it’s a straight narrow river. I believe it is a river that is narrow at some points and wide at other points. I also believe there are many many bends in the river of life. Some very deep ones. So deep you think you are going in a circle only to end up back where you started from.
I have found myself finally at a bend in life. I was going downstream in raging waters. I had no idea there was a bend somewhere downstream. (Not all bends are on the map in this journey. Surprise!). I have felt like giving up. I have laid down in the boat and said forget it. I thought about jumping off the boat during the storms. Then the sun would rise and I would dry out but, still going down. And here we have a bend…
Approaching the bend you think “Yes, I am turning around!” But what you soon realize is this bend is so deep and miles long you just may begin to panic or think you are going in a circle only to end up where you were. Well, honey, you will not. It’s just a very deep bend in life and you will come out with a mighty force. So, just do your best to maintain a positive energy around you by putting positive thoughts in you and ride the bend. Busy yourself with what you will do better, different or new once you are out of the deep bend. No worries…Glorious view are on the turnabout.
-Nikki (In Mindful Coffee Meditation this Morning)
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. 🙂