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Learning about Life in each others shoes…

When I come across something that I can relate too, I like to put it somewhere…..so why not share here with others, my friends who wear the same size shoes as those in my family.  This is a great story!

Carrying Super Rachel – The Logistics of When Your Wife Is Chronically Ill

Matt and Rachel   (www.brainline.com) 

 By Matt Horne

Caring for a chronically ill wife is not what I had envisioned when I was working up the nerve to ask out “that hot girl” who would later become my wife. We were in college and she was on the cross country team. She let me know very early on in the relationship that she had a chronic illness.
Nowadays, it’s just part of life. I’m pretty sure I wouldn’t know what to do with myself if she were well.

There’s a reason I call her “Super Rachel.” On her good days, she can run circles around me–cleaning, getting things checked off her to-do list, and having tons of fun. She’s amazing.

On top of that, she has the greatest attitude and rarely lets her condition get her down. As her dad says, she’s an “overcomer.” Instead of having a “why me?” attitude, she says “what can I do to fix it?” She also has the tendency to volunteer for more than she can handle, but I digress. . .

We have modified our life and come up with plans, backups, strategies, and systems to keep our household going.

We’ve worked through some logistical problems in the past four and a half years of marriage so we could make her life easier and as normal as possible. We have modified our life and come up with plans, backups, strategies, and systems to keep our household going when she’s down for the count.

Here are some tips about the logistics I’d like to pass on to help other couples who are coping with chronic illness:

Career

Super Rachel can’t work sometimes. A couple years ago, she was working part-time, working on her Master’s degree in Exercise Physiology, and working as a Graduate Assistant at the university (to pay for school). She crashed. We worked it out so we don’t need her income and she can stay at home trying to feel better.

Priorities

She was forced to reevaluate her priorities. Rachel used every ounce of her energy to please everyone else and live up to their expectations. Sometimes she was not physically able to drive home at night and I would have to put on my shining armor and drive my mighty steed (Ford Ranger) to pick her up. We had very little free time as a couple. At that time, she decided to put God first and her family (me) second in her life. School, work, and everything else is important, but not that important.

Now that she’s feeling better, she only works 2 days a week and we carpool, so she doesn’t have to drive herself. Working two days a week at the doctor’s office is the peak of her current physical ability, but she has the opportunity to help others with the same chronic condition she has.

Mobility

I searched on craigslist.org for a walker and a go-cart. (Yes, I call it the go-cart. Yes, I know I’m wrong. It is a mobility scooter. No, I won’t change.) I got the walker for $50 ($175 off) and the go-cart for $300 ($1,000 off). The walker helps her get around the house when she’s at her worst health-wise. The go-cart helps us get the shopping done, among other things.

Shopping

I used to get really frustrated when she said she had enough energy to go shopping, but didn’t. Invariably, when we got just about five items down on the list, she would need to quit and go home. I had probably 25 more things to get. It really made me angry sometimes, but it wasn’t her fault. The walker and the scooter dramatically changed things. Now, for the first time in her life, she actually enjoys shopping.

Independence

To help her be more independent on her bad days, I installed a hand-held shower head in the bath tub and bought a shower chair. Now she can clean herself most of the time.

Comfort

We used to sleep on an incline, so there wouldn’t be as much of a change for her when she gets up in the mornings. This is a common treatment for Postural Orthostatic Tachycardia Syndrome.

Cooking

It is very important for her to be able to eat when I’m not home, even when she can’t stand up. If you can’t stand for more than a few seconds, you obviously can’t cook on the stove top. We try to get a good number of things pre-cooked and in the freezer for her to reheat and I’m not talking about “healthy-choice box dinners” either.

We like to do what is called “Once A Month Cooking,” or OAMC. We’re not very good at doing it regularly, but if you do it right, you can have wonderful dinners & lunches for very little cost, and it’s all home made! With OAMC, you create a plan, buy your stuff, cook all day, and then freeze it for later. Sometimes all day Saturday spills over into part of the day on Sunday.

When she’s desperate for some nutrition and doesn’t have the energy to cook, she uses the walker to get to the kitchen, musters what energy she has to get the food from the freezer to the microwave, and then sits down on the seat of the walker (or the floor) while it cooks. After that, she can eat right there in the kitchen. Some days, we use the bar stool in front of the stove or sink so that she can get some work done.

And I almost forgot – I do pick her up and carry her sometimes!

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While their story is somewhat like ours, it is also different.  But we can relate to each other.  It may sound like it’s not bad or days are full of exhaustion, but they aren’t.  How does one keep going?  By remembering the good things in life.  Being thankful.  Having an attitude of gratitude. 

This does not mean there are always smiles and rainbows.  Or that there is not.  It means we are there for each other, and others are there to help us get through emotional humps.  They listen as we let things out – to process them in our own minds.  Friends, relatives and each other keeps us grounded.  For every bad day, we know a day will come and it will be better.  But we may have to remind ourselves.

Not every day Charles like’s his job as a caregiver.  And most days I’m not thrilled to be a patient.  But for now, this is how it is, and we always keep hope …. well, lately we’ve realized that keeping hope alive might not be the best, as there are great disappointments.  But hope that our future can still be bright.  And offer hope to those beginning their journey, and hope that God understands our feelings. 

If there is no hope, the spirit is numb.  Words and actions can take away hope…..they can also give hope.

God doesn’t cause us to go through things that are like this, but He allows. We learn, we grow, and so do others.  So in its self, wouldn’t you call it a gift?

Cathy 2015

When Your Worst Is Really Your Best

I always seem to forget how truly amazing I can be. I’m sure you all do the same. It’s so easy to feel the pain and fatigue deep in your bones and lose sight of how strong you really are.

Today was a pretty typical day. Worked last night (pediatric respiratory therapist) and dragged butt all night long. Gave report this morning semi-coherent thanks to a ridiculous amount of caffeine. Had to stay over for an educational inservice on new equipment. Went home and fought to sleep, even though I was exhausted, due to my pain level and running brain. Finally fell asleep, hallelujah!

Got up and then immediately started mommy world. I had to get snacks, go to the potty with the kids, referee arguments, soothe stubbed toes and hurt feelings, teach the fine art of sharing, and work out a “what show will be watch” compromise. Thank god (and my in-laws!) for my Keurig! Even so, I had that bone-deep fatigue that gnaws at you.

Everyone started coming home/to visit/to spend the night and my house went from zoo to Grand Central Station noise level. I can’t handle that as well as I used to. With fibro, I get more overstimulated than a sugared-up three year old at DisneyWorld. My pain increased, fatigue increased, and irritation increased.

Add to that chaos cooking dinner, kid bath time, and the overtired kiddos becoming more and more whiny with each passing second. I was pretty much feeling the same way. Finally got the kids in bed despite much stalling! I was full scale finished. Everything aching, especially my traitor back, and feeling like I hadn’t slept in a week. Misery courtesy of fibro, CFS, a bad back, night shift, and motherhood!

I started to get annoyed at myself for not handling my day well. It wasn’t until my sister-in-law pointed out that I accomplished a whole lot more than I felt like I had. The night at work may have been very long and exhausting, but I accomplished quite a bit and had a full patient assignment. I just got a promotion and have been actually keeping up well! I also made it through report without dozing off mid-sentence. That definitely feels like winning. I picked my daughter up from the sitter across town after working 13 hours and didn’t feel so tired that I was essentially driving impaired. Can I get a woo hoo?

I got a short nap in and then functioned mostly like any other mom in the world would, despite my health issues. I got things accomplished, answered work emails, and snuggled with the tiny humans. Not too shabby! I was tired but still helped build a racetrack and braided my daughter’s hair for bed. We made it through playing in the front yard, allergy medicine for the small ones, and a few temper tantrums.

These are all things that healthy people take for granted and we have to work much harder for. The greatest thing about us is that we are fighters! We’re tough, and make things happen. Some days I struggle to get dressed but I do eventually. We have to think things through to save energy. We work so much harder at things than healthy people do but we just keep going. That is pretty freaking amazing!

To my fellow fibromites, know this. You are incredible! You are brave, you are strong, you are proof that people can do anything. Every single day life for us is difficult but we keep going. That is awesome. You are awesome. We are awesome. Let’s not forget that!

TFFBA: Julie Ryan of Counting My Spoons!

 It’s that time again, folks! We have been scouring the net for those amazing bloggers that go the extra step, enlightening their readers, employing humor to add levity to their life, sharing information and tips, and more! We’ve awarded the Fibro Fighterz Fierce & Fabulous Blogger Award to another recipient! You can find out more about our latest winner below!

Julie Ryan

Counting My Spoons

Julie
About Julie:

“I was diagnosed with Fibromyalgia in 2010 and have been blogging about this lovely ride ever since, sharing my journey, what I learn, and the stories of others along the way. After a couple of extremely bad years I was able to find some relief for my Fibro symptoms through a massive diet change, giving up gluten, grains, eggs, dairy, and yeast. I also drink a lot of fresh green juice. It’s not a cure but it’s the best treatment I’ve found.”

Through blogging, Julie has been able to reach many readers and helped them learn more about Fibromyalgia and chronic pain through her informative and inspirational posts. Through her blog, Counting My Spoons, she also shares her favorite Fibromyalgia, chronic pain and chronic illness blogs via her featured Fibro Warrior Wednesday, where she interviews a different Fibromyalgia/Chronic pain advocate each week. Julie is also a contributor on the subject of fatigue at Answers.com

Learn More About Julie Here!
Visit Counting My Spoons Here!
“Like” The Counting My Spoons Facebook Page Here! 
Tweet With Julie Here!
Add Julie To Your G + Circle Here!
Check Out Julie’s Answer.com Articles Here!

Whether or not it’s the weather?

Originally Posted on April 14, 2012 by swansonmjs

Does the Weather Affect Fibromyalgia Symptoms?      HECK YA!

How can people not see how it affects everyone not just the Fibromites?

Every article you read – gives totally different replies.  Does the weather affect moods? Health? Pain? Of course they do.

There are so many studies that prove that temperature, barometric pressure, humidity, precipitation and wind affect Fibromyalgia symptoms. Studies do show that Fibromites tend to have more symptoms flare during December and January due to cold temperature & low barometric pressure.

Barometric Pressure: Sunny days create a high barometric pressure while storms result in a sudden drop. These changes can trigger muscle aches in FM patients.

Humidity: Humidity is associated with headaches, stiffness and widespread pain flare-ups in FM patients.

Precipitation: associated with a change in barometric pressure. This can result in increased pain and fatigue in FM patients

Temperature: especially rapid changes in temperature and cold tend to irritate while warm temperatures are less troublesome.

Wind: In general, wind usually causes a decrease in barometric pressure regardless of its force and therefore can trigger fatigue, headache, and muscle pain in FM patients.

One of my diagnosis is Seasonal Affective Disorder.

It is directly related or even caused by too little sunlight, which causes the body’s time clock to go out of sync, upsetting the body’s routine, and may even affect certain hormonal levels.

The symptoms of SAD are depression, sadness, lethargy, fatigue, excessive sleeping, difficulty getting up in the morning, loss of appetite or increased eating of carbohydrates, thus increase in weight, decreased activity and socialization, apathy, irritability.

Your body operates using an internal clock known as the circadian rhythm. Changes in seasons and the amount of light that your body receives can throw off your circadian rhythm, causing you to feel fatigued and more achy then usual.

I read this in one study – But I am not going to pretend to understand it.  If you do – please comment on it for me.  The study said “There does appear to be a relationship between low temperature levels and an increase in the number of pro-inflammatory cytokines in the body. These cytokines appear to be related to pain intensity.”

So what can we do to combat the effects of weather?

We know that sleep cycles change during times of extreme temperature – either too hot or too cold.  I know that we need longer deep and restful sleep.

I go to bed same time every night.  I added a heated mattress pad, lavender spray for pillows, a body pillow and ice too.

Cold temperatures are usually worse so they say to dress in layers on the chilly days.

Ok – sure and what do you do when you have allydonia along with it. Dress warm when you need to wear tank tops.

Try to increase the amount of light you have inside of your house. Purchase halogen bulbs or a special light box to help improve your mood.

Ok – here we go again~How do we do this when not only the sun streaming through the windows are too much to handle & we start wearing sunglasses indoors.

I do have the special light bulbs next to my chair in the living room (thanks to my Mom) and a light box on my desk at work.

What do we know about the weather and Fibromyalgia?

Cold temperatures and low barometric pressures are not our friend!!!!

Find what makes you feel better – whether it’s like me and go for a swim.  I will go lay in the tanning bed for a quick warm up. (No lectures on Cancer – I’m killing myself slowly with all these pills – at least let me be warm and relaxed).   I really haven’t learned how to make my own sunshine. But I am trying. I usually will open the blinds (and wear shades in my house), light candles, put out some fresh flowers, open up the windows and let in some fresh air.

Wishing you a sun-filled day!!!   (and it’s hip to wear shades)

I am a Fibro Warrior ~ Living Life!

warrior

Fibromyalgia, one more reason to Be Prepared….

be prepared

Originally posted;  Mar22013

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

warrior

Scripting Change Release Day Blast!

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:

The Basics: 

  • 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.
If this project is successful, it will be repeated, with proceeds from each resulting book being directed to a unique nonprofit organization.

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?!

SIGN UP FOR THE SCRIPTING CHANGE THUNDERCLAP HERE!

 

LEARN MORE ABOUT SCRIPTING CHANGE HERE!

LEARN ABOUT THE MTSR SCHOLARSHIP FOUNDATION HERE!

 

Mission Possible

Yippee, YooHoo, YAY 🙂 wondering why I am so happy? Well, after 4 whole months, I was able to tie a saree today, YUP a seemingly simple task w/o my arms hurting and w/o feeling like I am actually lifting 100 lbs.

A while back, around June 2013, I had freaked out about repeatedly not being able to do simple tasks, tasks that I had taken for granted like tying a saree, preparing a couple of dishes w/o forgetting the ingredients/or even what I was doing. My  Cognitive Behavioral Therapist (CBT) had suggested that I write reasonable and achievable short term goals (>=6 months) and realistic long term goals and break them up into small(er) steps so that I can take a stab at it – One Task….At A Time.

My short term goals went something along these lines (status in italics):

  • Work on improving resistance in my back and legs – working to follow a walking routine twice daily
  • Write a blog post every week – almost able to do it except when i was down with fever
  • Bake 1 dish every week – same as above except during when I was down with fever
IMG_0146
chocolate muffins
mango muffins
mango muffins
  • Cook an entire meal w/o feeling overwhelmed/confused/disoriented and increase the frequency – same as above, had a few snafu’s but with good outcomes (will post my absent-minded cake recipe soon)
  • Tie saree w/o hurting – did it today
laks
Yippee…..it did not hurt while tying a saree 🙂
  • Sign up for Tai-Chi or yoga class – on hold as i need to find a teacher who has experience working with folks in pain
  • Revise/Prep for PMP exam – exam on October 30, 2013 –  WIP
  • Stop Madhavi, my cook by end of September/mid october 2013 – DONE, first thing i did was to stop her as soon as I quit work 🙂
  • Start driving again –  on hold

Yes, there are ok days, not-so-ok days and absolutely crappy days but now, by taking each day as it comes, I am building up my resistance slowly and hopefully steadily. Most importantly, I am able to exercise self-compassion even when i am on the brink on going into a blame spiral – i deliberately pause and remember to BE HERE, BE HERE RIGHT NOW, be thankful for my blessings and be hopeful, however tough the going is.

Did I tie my saree perfectly today? No, not at all but I have been wearing a saree long enough and i know a couple of tricks 🙂 but did I feel good, did i feel like I was kicking Fibro in its rear – YOU BET!!

I now celebrate my small victories and look defeat in its face by regrouping and trying again and again and again.

Here’s to small victories!

Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more ~ Louis L’Amour 

Featured image from http://wanentrepreneur.com/wp-content/uploads/2013/01/Goals1.jpg