I am in day 3 of a Flare. It started on Sunday afternoon with my sciatic shooting pain down my right leg followed by my leg deciding to run a mile without me. I was able to alternate walking and sitting, applied heat and some meds to get through Sunday.
On Monday, when everyone was watching the weather trying to determine whether it was going to hit us or not – I would simply reply – “We are getting some kind of strong weather – trust me”. My body was already forecasting the weather to come. The body aches were increasing. I could feel the myofascial trigger points increasing in both my low back and between my shoulder blades. I forced myself to go to the pool before work which did help immensely in being able to walk easier. Note: I still don’t need a cane or other walking assistance – I just walk like I am 100 years old when I have these days. I worked a full day with an even fuller night being Mom chauffeur.
On Tuesday a.m. I awoke to the phone ringing telling us there would be no school due to the snow we had received over night. I would have been calling in sick which I rarely do but the fact that my driveway and roads were not plowed gave me one more reason to stay home.
My body was rebelling the snow outside. I kept the blinds pulled all day and yet still had a migraine and was wearing dark shades. I took a long hot bath followed by ice on the back a warm blanket some meds and a NAP. I woke with hoping to feel better. There was a short time during the day when pain was lessened. Then when fixing my family dinner – my body reminded me that it was still there.
It’s Wednesday now, I woke with the same morning stiffness and aches that I always endure. But as I continued to get ready for work the pain continued to increase. Grateful to have only a headache and not a migraine with the rest of my body in high pain, jeans killing me as they touch my thighs.
I dropped our Daughter off at school and then the tears started to come. I have a 25 minute drive to work which I never stopped crying. I talked to my husband briefly; when hanging up he said I hope you feel better soon. He was trying to say something to help but when you have a hysterical pain filled crying woman on the phone what can you say?
Part II – So Alone
As I was driving to work I thought who can I call. I needed to talk to someone. I love my Family and Friends but as I thought of each of them I knew they were not what I needed. What could they do? I know my Mom would have succeeded in calming me down but all it would have done was to stop the crying. I needed more than that. The same thing goes with my friends – I would have most likely calmed myself down until I hung up.
What did I need? I needed a Fibromite friend. I needed someone who would 100% know how I was feeling. We say all the time that unless you have really experienced a Fibro Flare you can’t get it. How can we make others really understand without going through it.
I think I will print out the following recipe to share with non-fibromites.
- Stay up for 3 or 4 days to get the proper feeling of exhaustion
- Dress in clothing made of rough burlap material
- Get the flu bug to add fever & body aches
- Go out and drink way too much – this should give you the migraine, poor balance and queasy stomach
- Ask someone to take a bat and beat you from head to toe
- Spend too much time in the sun – giving you the worst sunburn you have ever experienced
- Use your arms as a pin cushion
- Add a good dose of memory loss
- Top it off with someone stabbing you between the shoulder blades once in a while with a good sharp knife
- Turn on bright spotlights and loud music several times throughout the day
- Repeat all of the above for at least 3 days
I don’t know if this will help but it’s worth a try.
I continued thinking – how alone this pain makes us feel.
I keep think is that I have family, friends, online support groups and my page where I work so hard to keep a positive outlook for others and yet why do I feel like I am all alone?
How many of us have only have an online support group that we can post our bad days and get some sympathy; and maybe some advice, and really have no-one we can call.
So many times when on some of these sites what happens is we get others who chime in on how bad their day has been too.
Don’t get me wrong I find a big need for these support groups. Heck, I even have my own small one. I believe in them. There should be a place where you feel safe to express the pain, anger, etc and hopefully get some positive uplifting support with maybe a few new things to try.
I have a handful of people I have met on these support groups that have become what I would call my Friends. These are people who I hope in my lifetime to meet and wish we lived in driving distance of each other. However except for one I have never had any contact with any of these people except for online.
I began to wonder – is there a Hotline for Fibromites? If not, how hard would it be to start one. What if I started one? A way for others to have someone to text or call when they are in real need of someone who ”has been there” and really can understand where we are coming from when we are in day 3 of a flare.
We use the closed online groups to keep our anonymity; what happens when we open up to others via text, online chat or a real phone conversation?
I know that personally when I hit a flare I may start out by voicing it but the longer and stronger they become the more withdrawn I become.
I just want to lock myself up in my room and just be left alone.
This is exactly what I tell people not to do. I know what I need to do. I need to make myself go to the pool tomorrow, have my hot baths, keep moving as much as I can.
Tonight; I am going to lie low. Tomorrow, I will find my inner fight and beat this thing.
I will put this out there to any Fibromites who are reading this – until I figure out the solution to the Fibro hotline – if you are feeling in pain and alone know that I have an ear, a shoulder and sometimes some ideas to share.
We are all Fibro Warriors ~ Living Life!
Hey guys! The holidays are getting closer, and we think it’s only right to hold a giveaway because you guys are so amazing. I mean you all get up each day and battle this awful illness, we’re fighterz! So, we’re holding our Fibro Fighterz Holiday Fan Appreciation Giveaway! So what is up for the prize?
A Full Sized Spoonk Accupressure Therapy Mat!
Here is some quick info from the Spoonk website about their accupressure mats:
“First developed in Sweden, accupressure mats provide an easy way to enjoy at home relief from stress and tension. The Spoonk™ Mat helps the body release endorphins through pressure from the mat’s discs. They may stimulate specific reflex points throughout the body to release blocked energy, ease tense muscles and create deep mental and physical relaxation.
Spoonk™ Mats are made of all natural materials:
- 100% cotton
- No synthetic AZO dyes
- High quality Plant Based foam made VPF technology
- No Fire Retardant Chemicals (PBDE and CFS)
- No toxic off-gassing chemicals
- Recyclable nontoxic ABS Plastic
- Heat pressure – no adhesive glue
- 6,210 stimulation points for optimal effect
- Original design of crown-shaped discs
Size: 67cm x 42 cm (26.5 ‘” x 16.5″)
Eco foam made in the USA.
Assembled in Canada.
High Quality FDA Certified”
We’re pretty pumped about this giveaway! It ends on the 15th, so it will arrive at our winner’s home just in time for the holidays! Picture this, laying down on your new Spook Mat, lighting a few aromatherapy candles, putting on some relaxing music and just enjoying yourself. Sounds awesome right?! You can enter our contest below using the Rafflecopter widget! There are some things you can do for extra entries, too! So check it out!
Happy Holidays, everyone!
-The Fibro Fighterz & Positivity In Pain Team
Fibromyalgia, one more reason to BE PREPARED.
I have always been the one that is “prepared”. Even long before I was a Mom – I would have the bag with everything in it. In my past life I worked at a YMCA working with the school age kids. It was a necessity to have the bag including activities for that ”just in case moment”. I find myself training my Daughter to be the same way. As she goes off to babysit – she has her bag of activities.
Of course, like every Mom I had the diaper bag that you still have when they are toddlers filled with activities, clothing, snacks, etc. I was born to be the Girl Scout Leader Mom – now it is not just a bag but a Rubbermaid container full of things. Gotta keep them busy and you never know what you may need.
What does this have to do with having Fibromyalgia?
We all talk about how we have to pack differently when we go on vacations or road trips.
That goes for any activity now.
Our daughter is in a JO Volleyball. This means that we have one day a weekend that we travel for about 1 1/2 hours to get to where the Tournaments are held. We have to be there for an hour before their first game – which is usually behind schedule – and we easily spend 6-7 hours watching games. Then… back on the road for the 1 1/2 drive.
The choice of seating is either metal bleachers or chairs with a short counter top as a table. When we arrive, she takes off to find her team, my husband is usually finding other parents and a spot on the bleachers. I make my way up the 2 flights of stairs with my bags in check.
The search begins; first for the court they will be on – then to find the nearest outlet and the most supportive comfortable chair that I can find. Then it is set up time. I have to “be prepared”. I have chair support, heating pad, extension cords, medication, bio-freeze, water, snacks, back rest, camcorder, etc.
I am prepared ready to handle whatever Fibro and the sidekicks throw my way and yet I feel trapped.
I am not housebound or in a wheel chair. I feel trapped because I have limitations. The limitations are not just physical and mental. I have all of the things needed for me to make it through the day the best way I can which also means I am stuck at my chair unless I can get my husband or someone to watch all of my things.
I believe that I can still do what I want to do but with limitations or plenty of planning.
I am not about to give up or stop going to see my Daughter’s activities. I just have to be more prepared and plan around my “good times” of the day. I have volunteered to help at the Choir Festival. I signed up for the time slot that I would have the most energy and the job that would allow me to sit, stand and walk.
It sounds like a lot of work to keep participating in my Daughter’s activities. There are days when doing so is painful and beyond exhausting.
However, she is one of the reasons that I feel I keep moving, keep exercising, and keep living my life.
There are days that I need to just stay in my comfy chair. She will be the first one to help me when I have pushed to far.
I know that not everyone is able to do what do or will agree with my ending statement which is…
I will continue to be a role model for my Daughter. I want her to fight through adversity with faith and strength. I want her to see that some days you have to take care of yourself first. I want her to see that you can take the worst situation and find some positive. Most importantly I want her to know that her Mom is a….
Fibro Warrior – Living Life
[illustration by James of foolishfire.com]
In the not so distant past, I found myself alone on a bench in the middle of Old Quebec City crying my heart out to The Titanic soundtrack, and I was super proud of myself.
Allow me to explain.
I was on a romantic birthday getaway with my boyfriend. The romantic, birthday, getaway, and boyfriend parts of that day were all wonderful, but earlier that day I had received news that ultimately led me to believe that I would not be able to return to work in September. With my hopes and dreams of the previous months all bundled up in the possibility that my employer would accept and implement my requested accommodations, I was a little more than disappointed to hear this might not happen. Problem was, I went straight from that unpleasant phone call to hopping on a plane for a fun birthday trip, and it didn’t even occur to me that my suitcase, along with two spiffy outfits and too many pairs of shoes, contained a torrent of unprocessed emotion that would spill out at the drop of a hat.
My hat was a veggie burger, ordered because I never did pay attention in French class, and neglected to notice that burger de jardin does not imply fresh, juicy ground beef. So what? Well, according to the National Headache Foundation’s Low Tyramine Diet for Migraine, lentils and tofu are OUT. So as I finished swallowing my first two bites of veggie burger, realized that it was not cow, and that my whole plan for a pain-free weekend was GOING OUT THE WINDOW, I began to lose my cool.
“Just get another burger,” my dinner date suggested logically.
“I don’t want another burger.”
“Here, switch and eat mine,” he offered.
And uh-oh, I started to cry.
“I need to go. Take your time and I’ll meet you in the park across the street.”
“Huh? I just ordered another beer…”
Once the waterworks began, they were unstoppable. Maybe it was the spectacular street performance nearby, or perhaps they assumed I was moved to tears by the soaring saxophone rendition of My Heart Will Go On playing from a touristy storefront, but thankfully nobody looked at me sideways. Little did I know that simultaneously, my handsome dinner date was turning red under the gaze of the patrons of an entire restaurant who assumed that he had just been the jerk of the century (I did run out crying after all) but was staying behind to finish his beer before seeking repentance.
As he approached the bench mere minutes later, I was finally ready to verbalize, and my disappointment over the recent bad news tumbled out to an instrumental version of Disney’s The Little Mermaid theme. His story of the restaurant glares was immediately funny (to me) and then we carried on with our fabulous weekend.
So why am I proud that I allowed myself to cry like a baby in public on what was supposed to be, and what was, a special evening in an impossibly beautiful city?
Well, because if I hadn’t, I probably would’ve spent most of my energy that evening holding it in, and I’ve done enough holding it in in my life to know that it makes me snippy and ugly and tense, and now, it can contribute to pain attacks that end in tears anyway, and those kind of tears are a lot less manageable that the ones on park benches with Celine Dion’s peripheral support. Instead of letting the fear-of-what-others-might-think rule my actions, I cried in public, and it felt liberating.
As a friend of mine, Martha Blacker, postedsome in a recent status update:
“Being emotional and vulnerable is not a sign of weakness. For those who struggle with this idea, and I mean this with all due respect and compassion, it’s time to step out of your comfort zone.”
by Brain Storm @ lousong.wordpress.com
It’s that time of year again. The holiday season. This time of year carries it’s own unique kind of beautiful chaos with it. The hustle and the bustle, the shine and sparkle of the twinkling lights on the evergreen trees. This time of year also inevitably brings along everyone’s favorite party guest–stress. All flavors of it, too. Stress in the form of finding that one “perfect” gift for someone, in the form of seeing family members you haven’t seen in a while, and even stress about getting that holiday meal “just right”. So as the holidays are hurtling towards us in the next few weeks, at what seems like high-speed, we all can use a few last minute stress busting tips!
Avoid Stressful Situations
One surefire way to reduce stress during the holidays is to try to avoid whatever it is that stresses you out, that pretty much goes without saying. But sometimes it isn’t always possible to avoid a specific stressor, so what do you do at this point? If it happens to be a certain person that is the source of your stress and it is impossible to avoid that person, try to make polite conversation, avoid hot topics (religion, politics, etc.), and ask them about the holidays. Try this: “Hey, what’s your favorite thing about this time of year? I just love….”. If they keep trying to change the subject to something you would rather not discuss, politely excuse yourself and move on to a happier task.
Breath (That beautiful pine-scented air!)
Breathing is one of those things that we do every single day. What we often don’t realize though is that breathing can be extremely helpful in a stressful or anxiety-ridden situations. If you happen to find yourself in position where you are feeling yourself becoming stressed, kindly excuse yourself from the situation, and take a moment for yourself. Find a quiet place to sit down (If that’s possible this time of year!), and take a couple of deep breaths. Now, think about this beautiful time of year. Ask yourself, what is your favorite thing about it? Is it the children’s huge smiles when they see Santa Claus, those colorful twinkling lights you see lit up on your way home, or is it that warm feeling you feel when everyone is gathered in the living room exchanging presents and drinking eggnog? Whatever it may be, close your eyes, grab ahold of that thought, visualize it and hold it there in your mind and focus on it while taking some deep breaths. When you feel that you are ready, return to what you were previously doing, but keep that thought of what means the most to you this season in the forefront of your mind, so the next time you’re feeling stressed, just think about that and smile.
That One Holiday Song
Music, in and of itself is therapeutic. So the other thing that also always comes this time of year? Holiday music of course! Do you have a favorite holiday song that you just love to listen to over and over? If so, if you find yourself stressing, try humming the tune of your favorite holiday song, or perhaps just singing the lyrics to it to yourself. If you’re not totally comfortable singing it with people around, just focus on the lyrics in your mind, go through the verses of the song in your mind. I bet you by the end of the song, you’ll feel a little better then you did before.
So this holiday season, let us all have a stress-less (I won’t say stress free!) holiday, and a Merry Everything and Happy Always to you and yours.
It has taken me years to learn, that looking backwards and staring at all I was and could do, is only self defeating. I am a different person now, Fibro and CFS rule my days and how I need to choose between what I must do and what I would like to do. Looking backward leaves me feeling too much sadness. Today..I choose to look forward.
I belong to several online support groups & pages. It is getting easier for me to tell by the questions people ask what Phase they are in or how long they have been diagnosed with Fibromyalgia. I like that no matter what phase we are in we can offer help to others. By now, you are probably saying WTH is this girl talking about? We haven’t seen anything about Phases. Well, you are right. It’s something that I have thought about for quite some time.
I believe that their are 4 phases that we hopefully will go through on our journey through Fibro land. If we are lucky we will have the support from Family & Friends to reach and stay in Phase 4.
Phase I ~ Tests, Tests & More Tests Every Fibromite reaches a point when we have to find out why we have been enduring the pain, headaches, depression, and exhaustion. We undergo blood tests, body scans, and a long list of Doctor appointments. After each test we hear the same thing from Doctors, Family & Friends that “It’s all in your head” & “There is nothing wrong with you”. This phase can take years sometimes most of your life to get through Phase I. After finally finding a Doctor willing to look at the whole picture ~ we are diagnosed.
Phase II ~ Acceptance Once diagnosed we and the others around us need to accept the fact that the pain and tiredness we have been experiencing is never going away. We have to accept the possibility of what other symptoms and evil sidekicks may develop. Most importantly we need to accept that our lifestyle will need to change. We may not be able to do everything that we want or have been doing.
Phase III ~ Education We need to first educate ourselves. The internet gives us access to unlimited information. Personal blogs and online support groups allow opportunities to see you are not alone, to ask questions, get suggestions and ideas. We need to do research – to keep looking for what might work in helping manage our symptoms/evil sidekicks. Next, we need to educate those around us. We need to try and describe how we feel in ways that others will understand and what we need for them to do to help us not just daily but when we are experiencing a flare.
Phase IV ~ Living with Fibromyalgia We should all strive to reach and stay in Phase 4. Phase 4 to me means looking at life from a positive approach. To be accepting of what I can and can’t do, that I will have good & bad days, that there will be some things I won’t be able to do and somethings I will have to do. Also, I feel it means we choose to be as positive as possible. We need to not give up, to continue to learn and try new forms of treatment, adjust activities and surroundings so that we can continue to Live life.
I am a Fibro Warrior – Living Life
Hey guys! I wanted to check in and let you all know about an awesome project that is happening!
Scripting Change “is an opportunity for writers to support causes in which we believe, with our voices and words, by contributing to an electronic book, the proceeds from which will be donated to a nonprofit organization. Depending on the recipient organization, a theme will be decided for the pieces to be included.” Scripting Change is the brainchild of the incredibly awesome Anya Kagan!
The basics of the project are as follows:
- Selected works from contributing writers will be compiled into an electronic book to be sold through an online distributor.
- The goal of the project is to have a $0 cost.
- 100% of work required to create and promote this electronic book would be volunteered.
- The book’s proceeds will be directed to a selected nonprofit organization.
- ALL proceeds from book sales will be donated to make a difference in people’s lives.
- Proceeds = Cost of book – % taken by the distributor
- The theme for the book will be related to the mission of the selected nonprofit.
- The selected nonprofit will be asked to help promote the project and resulting book to ensure the project’s success in helping their cause.
- ALL proceeds from book sales will be donated to make a difference in people’s lives.
This year’s theme for their inaugural project was Determination & Hope Through Pain! The inaugural recipient of funds raised by the Scripting Change project is the MTSR Scholarship Foundation, which provides scholarships to students who have been impacted by the high cost of medical care due to chronic illness.
I had written a poem while in the throes of severe pain last year, which will be appearing in the Scripting Change e-book, coming out on November 4th!
We want to spread the word far and wide about the Scripting Change E-Book Release Day! Help out by signing up for their THUNDERCLAP! You might remember Thunderclap from Fibromyalgia Awareness Day earlier this year, when we spread the word throughout our social media outlets to spread Fibromyalgia awareness! Well, the platform is the same, just a different organization! Won’t you help spread the word about this kickass project?!