I had a busy day Friday and was exhausted by the night. I went to bed and when I woke up it was Saturday morning. I don’t recall waking up during the night and I usually do. I was refreshed and headed out to the stores. It was my intention to bake a cake and to bake my famous wings. Well, after I returned home around about noon, I started feeling bad. I noticed my face was having an outbreak of seborrheic dermatitis. My face begins to swell and then I begin to simply feel bad all over. Malaise is what this is called. A general feeling of discomfort, illness, etc.
Fibromyalgia kicked in and man, I felt like all of my energy was drained. I ended up just lounging around the house Saturday feeling bad. I went to bed Saturday night and tossed and turned ALL NIGHT LONG. I did not make it to Easter Service or Easter dinner with my family and I have never missed an Easter dinner. I did get up enough strength to bake my famous wings but, not to bake a cake.
Today I feel much better, my skin is clearing up and the swelling has gone down. My daughter is back safely at college and all is well. I hope you had a wonderful Easter and enjoyed your week. I intend to put the last two days behind me and move forward into a productive and fun filled week.
Last week, I had a very bad fibromyalgia flare. I mean the kind that brings tears to your eyes. I was the chairperson of an event and I had things to do and very little help to do it. I pressed my way through by pacing myself, resting, and getting things done. As you may have read a few blog posts ago, I lost another loved one to Covid. This month has seem to be a month mixed with a variety of sufferings ranging from loss of loved one, increased physical pain, emotional challenges, and a few missed targets of gossip and misinformation.
It has also been a month of blessings and gratefulness. I feel it has been the turning point for me spiritually. Some parts of me that were dead to Christianity are showing signs of life and there seems to be some solid foundation in what I believe to be true about God. So, what is with so much suffering? The question is not why must we suffer but, why do we suffer?
I say we it’s not about a “must” suffering because there are choices we make that lead to suffering. The solution is to simply make better choices. However, there are things we are just going to go through that causes us to suffer. Incidents and accidents. The loss of love ones. Sickness. A not so good childhood. Relationships turned sour and rancid. Pause. Deep breath. I was sitting with my eyes closed listening to a Christian meditation, which was more like a reading of scriptures, and I heard this:
Suffering produces perseverance. It does? It does. Well, how does that work if the person suffering dies? The defeated suffering by moving into a realm where there is not suffering. To stay here, would have meant more suffering. Ok, but what if they suffered and lived and as they lived, they still suffered because of their illness or injuries? They persevere by pushing through, by treatments, by taking on each day, by adapting and attitude of positivity and gratitude. The persevere to and develop character that can help someone else to get through what they go through, something similar, or life all together. They learn a thing or two about suffering and pushing forward. They learn some things about weeping may endure for a night but, joy (enlightenment, understanding) comes in the morning. They learn about getting through it. Either hope seems to just appear for some and others make a conscious choice to hope. Hope for better days. Hope for a cure. Hope for new treatments. Hope for the suffering to end.
I got through those terrible flares like I got through some of the others. Perseverance. I get through some by suffering through them because no amount of pain meds, heating pads, or ice can help. I suffer through the hours to get to the next day and they subside. I persevere through it with prayer. That’s all I have sometimes. All I have is “hope”…hope this ends soon. Hope tomorrow is better. I “hope” they can figure out how to treat fibromyalgia soon or in the future so others will not have to…suffer.
I wake up at 3 am from joint pain. I get up and take some pain medication. I doze off and I awake at 4:15 am to a beeping smoke detector that informs me the battery is low. Thanks. I get the footstool and I remove the batteries. I get back to bed. I am up at 7 am. An inbox from the speaker that is suppose to bring a message to the congregation cancels due to a fever. I call the pastor and the pastor will have to fill in. I get dressed only to look down to see the hem of my dress has unraveled and is shredded. I change clothes twice after that and I am ready to go. But, my daughter is not. I arrive at a church with 3 minutes to spare and I am asked to fill in here and there, all over the place because only a hand full of members are there. Just when you think it’s over we arrive to the restaurant for dinner only to find out they close at 2pm and will reopen at 4pm. New hours because there is a shortage on employees.
We decide to go to a restaurant that is close to where we are but, it is very expensive. We are seated with no issues and the food was delicious. I stuffed myself silly as it was a brunch buffet. Sad but, true.
With everything that happened this morning before I could leave my home, I almost said, “Everything that could have went wrong this morning did!” But, before I could finish it, I stopped. I thought, “Words have power. They have the power to create and to evoke emotions.” Instead I changed it to, “Everything that could have gone right this morning did!”
I know that may seem opposite of what happened. I reflected on what was going on and how at every turn I talked myself into remaining calm and hopeful. When I woke up for the third time at 7 am I was still in quite a bit of pain from Rheumatoid and my muscles were aching from fibromyalgia. I am in the middle of a flare up of both! A bowl of cereal and coffee. CBS Sunday Morning. Nodding off at times and praying things would calm down. During the getting dressed fiasco, “That’s ok. It’s alright. I know I am running short on time. It’s ok. Next dress. Next pair of shoes. Next on the accessories. Keep moving Nicole.” I am ready! My daughter is not. We will be late! It’s okay. It’s alright. Breathe. Write your notes. Start the car. Wait. Wait. Breathe. Wait. Don’t fuss when she gets in the car. She is having a rough morning, too.
She gets in with college size attitude. I ignore. At church, I kept going with the flow of the turn of events. Dinner, I may have been a bit frustrated but, adjusted my attitude before walking in and hoping they had space. I realized, I had ACED the TESTS of the day. Everything that could have went right, did. It may not have been RIGHT but, it was happening and this was truly a series of tests to see if I could put into practice things I have been reading, experiencing, learning, over the years. We are tested often in this life but, there are times when we get an EXAM. This was an exam. I aced it. I felt joy and then I thought maybe I shouldn’t be too happy. After all, this is spiritual stuff. Is it okay to be happy about this?
Absolutely! Understanding brings us joy! Enlightenment brings us joy! Why not celebrate when we pass tests and exams in life? It made my heart happy to see growth. I would have gotten angry. I would have given up. I would have been miserable. But, no. I just went with the flow of things and rode the wave on out to shore using a set of skills developed over time. Breathe. Self talk. Flow. Adjust. Think. Adjust Attitude to a better one. Smile. Ignore. Adjust internal emotions with truth to override facts. Pep talks. Shuffle. Repeat. Repeat.
Ahhhhhhh the day is done!
Don’t’ believe the hype in your life that can come from what you SEE. Seeing isn’t always believing. It looked like I was having a bad day but, it was all an illusion. Are there bad days? Of course! But this was just an exam and I am glad it is over.
It finally happened. I had a housewarming for family and family-friends. And it was GREAT. We had a really good time fellowshipping with one another. Most of my immediate family is vaccinated and if not they have had their first shot.
It took me two weeks to prepare for one day because of physical limitations. Really, I started to prepare three weeks in advance. The last two days were brutal on my body and I had a few days along those weeks that were bad days and many sleep issues at night. However, I persevered. I also had help from my brothers, my daughter, and parents. I am grateful for that.
Today, I begin the process of recovery. It takes about a week and sometimes two weeks to recoup from an event like yesterday. Today, I feel like I have been hit by a ton of bricks. My body is exhausted. I am fatigued. I have a huge amount of pain and soreness. So, I have cancelled all plans for this week. I only have one goal, each day, for the next seven days that require my physical energy. I am also not taking any phone calls or dealing with any negative energy. It’s just not happening this week. No extra tasks for anyone else. This is the epitome of self care for those with autoimmune diseases. We must heed the lessons learned and the good advice given to us by others in order to preserve and improve our health.
Sometimes I go to bed feeling defeated. Sometimes I rise with power and sometimes I rise with a press in my spirit. I do not know why some of our lives have more obstacles than others. It’s not because we are special as we have been told (I don’t believe that). It’s not ALL because of the choices we make. But it’s always about the response. I believe it’s simply because this is our lot. This is our path. This is our journey and everyone’s journey is different. That’s it. I got this today with the weight of the world on my shoulders and tears in my eyes. I got this.
A few weeks ago I posted in a rheumatoid arthritis support group a tip on relaxation. One of the tips involved soaking in a tub to help relieve tension. And that is where the drama from the trauma began.
I define it as trauma because you must be experiencing some type of trauma that pushes you to release drama on unsuspecting strangers. Sadly, people that deal with you on a regular basis know you are about dramatization. They know that when they see you, you bring the drama. You see, in the comment section there were responses to my post like: I CANT SOAK IN THE TUB! HOW IS THAT RELAXING? I CAN GET IN BUT I CAN’T GET OUT. HUMPH, THAT IS SURE TO CREATE TENSION AND NOT RELAXATION. I AM TOO LARGE FOR A TUB. I HAVEN’T SAT IN A TUB FOR YEARS. NO WAY THIS CAN WORK. One lady even said to me I should have modified the post. I wanted to say, “Ma’am, I didn’t write the article. DUH. And you should have modified your thinking.” BUT…I respect my elders most of the time (because I don’t believe it’s okay to be 80 and say whatever you want to people). Also, the Spirit told me to be quiet. She’s traumatized by Rheumatoid and many other issues. This is her sadness, pain, hurt, gushing and lashing out.
Pause. When you see a post of something that you don’t like such as one that reads: “I love strawberries.” Do you hop on and respond: STRAWBERRIES ARE DISGUSTING. I HATE THEM. THEY ARE THE WORST FRUIT ON THE PLANET. CAN’T SEE HOW YOU EAT THOSE. Has it ever occurred to you, that post was not for you? I see people raving about things that are not for me. Unless I see a “what do you think?” I don’t bother UNLESS they are family or close friends. Many times, I don’t bother then. It’s one thing to say you don’t like berries or I am allergic but I wish I could eat them. It’s whole other thing to BASH and INSULT and have a total meltdown over nothing. A simple positive post or someone’s opinion over if they like pumpkin spice lattes (ugh).
Press play. I wonder did those people stop and think, I can do ALL of those other things except soak in the tub. Great article. No. They saw the ONE thing they couldn’t do and “went to town” about it. They didn’t think: “Gosh, I can follow all of these tips in the shower, in my shower chair, or however it is I get clean.” Nope. They honed in on what they could not do. The trauma of what I cannot do. The trauma of WHAT I USE TO be able to do.
This trauma is VERY real. I know about it. I live it and if you keep on living, as the elders say, you will know it, too, in some shape, form, or fashion. Sometimes, I think about my life B.R. (Before Rheumatoid Arthritis Disease) and B.F. (Before Fibromyalgia) and MY GOD! I miss ALL of the things I could do. Even the simplest things. Sometimes I stay in those memories a little too long and I become sadden, blue, depressed, compressed…oppressed. And then I have to free myself from those thoughts with therapy, journaling, talking to a friend, or…THINKING ABOUT ALL OF THE THINGS I CAN STILL DO and even if I have to modify them or have help they still can be done! “Glory to God!” in somebody’s southern church goer voice (:-D). You can heal yourself, or get some help, from the trauma of what has happened to you, whatever it is. The trauma produces the drama and quite frankly, people get tired of it. We know you are hurt but, there is a more EXCELLENT way to deal with it and release it. It’s called prayer, meditation, yoga, sound baths, therapy, Yeshua, Yaweh, spirituality, your choice of religion, forgiveness, etc. It’s called reading a books about it. Going to your temple, church, mosque, and REALLY walking in your religion. Developing a relationship with your Creator. SOMETHING! Something other than bringing the drama, spreading the hate and hurt. Lashing out has cause your relationships to be severed or strained.
What can you do? Huh? THINK ON THOSE THINGS. Think on the things you can do! Those things are TRUE, too. Those things are lovely. Those things “are” admirable. Those things “are” excellent and praiseworthy. Think about such things!
I don’t know what happened last night (Sunday night) but, I was ready for a good night’s sleep. Instead I woke up through the night tossing and turning. In the early hours of the morning I had a strange dream and then I felt pain in my right shoulder down the shoulder blade and in the bicep area. The usual suspect. It was too early in the morning for pain medication because I had things on my To-Do-List and I did not want to oversleep.
When I did wake up, it took me about an hour and a half to get out of the bed. I felt heavy and groggy. I put one foot on the floor, then the other pain shot through my back. And just like that it was gone. I got coffee on, some breakfast on the stove and in the oven. I sat down at the computer to read some emails and I realized that I had no idea what I was reading. I decided to do some other business and it was becoming increasingly difficult to comprehend each sentence. I knew then it was brain fog. This is something I was determined to do today, needed to do and it took me forever to understand what I was doing. Also, reading instructions over and over. This is brain fog. It is mentally exhausting. Draining before you can get on with a productive day. Especially, it involves reading of any kind, comprehension of any information, even if you are just reading for pleasure it’s like, “What did I just read?” It’s not longer pleasure, but a pain in the butt.
My head felt like it was stuffed with cotton and my thoughts were trying to get through. I thought I could feel my brain trying to connect the dots and that translates to even conversations seeming difficult. I can hear my self pausing so many damn times I feel and sound stupid. Of course, I know I am not.
“How can I savage this day? How can make the most out of it?” I asked myself. I thought about something Iyanla Vanzant has being saying lately during this pandemic and quarantine, “Instead of fear, why not possibilities?” So, I said to myself, instead of agitation about what I can not do, instead of frustrating the hell of myself with all f the reading, typing, thinking, talking, etc of the day I had planned, why not see what else I can do that does not involve deep concentration. I slather pain cream on my arm to dull the pain. I decide to tidy up my work space,
I finish tidying up my room. I worked on a crochet project. I was able to take care of some other financial business as the evening came around and my mind seem to work better. I got plenty of water down to help. I also did yoga and meditation to help. This is many of our lives with Rheumatoid Arthritis disease (not Arthritis) and Fibromyalgia. We call it RA fog or Fibro fog. Yesterday, I think BOTH were at work. I finally gave in to pain meds tonight. I need a better tomorrow.
A bamboo wreath from Dollar Tree, which I already had.
Leftover twine and tweed-like ribbon from a “cowboys & girls” themed party, tape, butterfly ornament and flowers picked up on an essential run to Dollar Tree.
I tied three pieces of twine together like a long rope and wrapped it around the wreath, then securing both ends with tape. I did the same with the other twine ribbon.
The bamboo wreath has slithers of space and after I cut the flowers I stuck them in those spaces. It took some maneuvering and rearranging them to get the look I wanted. It took about an hour and a half to finish. As usual, it may not take you as long. My hands were a mildly achy during this task. However, I was determined to finish. I try to make my spring wreath one that can be used throughout summer. It saves on money, time, and work.
I had plans! I vowed to not be at home tonight. I had cute dresses lined up to choose from. I was hanging out with singles. Maybe have a cocktail and enjoy great conversations. It turns out that my body had different plans. I’ve come to adjust to this most times and I know when to push through and when to stop. Rest. Yield. But I really, really, wanted to get out of this house!
I make chocolate covered strawberries every year. I’ve done this for almost 12 years. Yesterday, I had a very long day and lately I’ve become unusually tired in the afternoons. Yesterday was a day where things popped up left and right and put me behind on making berries. It also became an evening of pain with fibromyalgia and Rheumatoid. I did sleep sound but when I woke up it was hard to get out of the bed. My eyes were sore. I got up and got going. I thought my body would catch up with my mind and emotions but it never did.
So, instead of having a blog about my fabulous outing, here is one about my FUZZY night in.
I soak my hands in warm water and Epsom salt. They hurt from dipping berries. I order from the wing place literally one light away from my home. I decide to make this night a guilt free, indulge in web surfing, TV watching, anti lovey dovey watching movie night. I take a hot shower, get my FUZZY socks, and I chat it up online with whomever wants to talk. Whomever is home just like me. I’m in a few of my groups chatting and cheering up folks. I don’t answer the phone for anyone that is energy draining, complaining, disagreeable, or argumentative. Sorry, not tonight, I am in chill mode. I’ve got my incense burning and the name of the scent is Blessed Rest. And DEAR GOD do I need it! I’m bypassing the glass of Stella and opting for baked chocolate chip cookies and milk.
I don’t have a pet or object, blanket, etc. that helps me, perse. What I do have is a Rheumatoid Disease group that I am a part of. This group is very interactive and supportive. There are people in it from all over the globe. For it to be so large, it seems tightly knit. It has it shares of woes, but those fires are usually extinguished by the administrators of the group. GREAT ADMINS is what keeps a group GOOD.
I found this group upon the return of RD, when it came out of remission. The Arthritis Foundation and Creaky Joints kept me informed. But, it was the community of Patients Like Me and RD Online group that is more like a buddy. I also go there not only when I am at my lows, but also at my highs and to uplift, support, others. It’s a give and take, an ebb and flow of the group that keeps me going.