Uncategorized

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!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Advertisements

Ok Under New Management

IMG_463650335813544

Am Looking for new writers, contributors, also Positivity Posters MeMe makers. Nothing has been done since Dec 2015. And I account for that part as I am staff and writer.. We need; facts, Personal story section, Healthy Eating Section, Exercise is Hard but for the ones who want to – I need someone to write a story on low impact exercises and everyday chores that can get you up and about. Since the previous people gave up and stopped writing AND LET THE SITE FALL ASLEEP. I am so glad I was cleaning out my WordPress account. Because I have been looking for a voice for the common everyday person who needs answers that could help them. Something anyone anywhere can do. Any new research can be posted and verified.

I need a lifestyle writer, A Ask Fibro Mom, Ask Fibro Researcher, The Vent Room, Medicine War Columns; One Pharmaceutical way, One Alternative Medicine Way Writers. Personal Life stories, and General Information Stories and Deep Interest Columns on Fibromyalgia

We need Facts, True Life stories, Healthy Eating Habits, New Research, and Alternative Medicine. Let us bring this Magazine and Site a world of information for anyone to understand….. Please if interested please fill in the form below. So I may get a hold of you for an online interview. Thank you let you let us be the magazine that survives by its loyal patrons. Contributors to any stories will be checked for factual information as we will not be full of wishful thinking but truthful. Let us make this most popular magazine ever. Can not wait to hear from many supporters to keep this site alive

‘Dear Unbeliever’ :what I would say to the fibromyalgia doubters

The Invisible F

Photo by Mnxan Opena Photo by Mnxan Opena

In the immediate years following my diagnosis with fibromyalgia (fms) I struggled tremendously with people’s disbelief and confusion over my pain.

That people couldn’t comprehend that a person could look perfectly well on the outside while going through a raging storm of pain, incredible exhaustion and other symptoms baffled me. The lack of comprehension wouldn’t have been so bad if it wasn’t often followed with judgements and suggestions of how I could shake off my pain with positive thinking, meditation and the host of never-ending recommendations.

I was still coming to terms with my diagnosis, learning how to navigate life with a chronic pain condition and this was complicated by the need I felt to validate my suffering to others who didn’t seem to believe (doctors included). Looking back I wish I had been firmer, braver and bolder. Here are some of the things I wished I…

View original post 615 more words

Late Nights…

Most people do not know that I struggle with fibromyalgia. Chronic deliberating pain that often makes it impossible for me to complete simple things….like combing my hair and buttoning a shirt.

I received the diagnosis of Fibro and borderline Lupus in the military after being in for 16 years.  Just like many others, I thought my persistent pains and aches were just a part of the toll of running, numerous deployments and working in difficult enviroments. After 2 days of intense all over pain, my doctor informed me that my body was undergoing a major change. There was no cure and that my symptoms would get  worse as I got older.   I begin to realize that “late nights” would take on a different meaning for me.

My love/hate relationship  with my body began shortly after that. “I will fight this!” I vowed. I didn’t realize how hard the battle would be. After retirement, I continue to exercise and eat right. My body fought back…with a vengeance. Reminding me that no matter how hard I tried, It would always be ahead of me in the race. Always one lap ahead of me…the only thing I could do is try to catch up.  To keep running!

My laps are never easy. My body gives me signs and symptoms when a pain flare is about to occur. My body warns me of impeding rain, I plan accordingly. It tells me when I have been on the go too many days in a row, I take a day of rest.  It warns me when I am stressed, I plan a solace …

I bargain with my body daily. Some days I win, and some days I lose….never graciously. My defeats  come with intense stiffness, excruciating pain, sleepless nights, light sensitivity, pain and memory issues  Some flares last for a couple of hours to several days. My pain is worse at night, when I am alone and the world is fast asleep.  Late nights curled up in a ball under a heated blanket filled with insomnia and pain. Some nights  I have often sat outside watching the stars….praying….waiting on the sun.

When I wake up, I feel like a new person….literally I am.

My ability to push through my pain daily keeps others wondering.  I look great on the outside, but  Im constantly trying to keep up. My high pain tolerance level allows me to operate normally on a pain level that many would have to seek medical attention for.

My trips to the ER  come every 4 to 6 months. The nights when I can no longer find a home remedy to bring my pain level down. Over the counter meds, epson salt baths, yoga , exercise and meditation lose their strength.  I become immune to regular pain relievers . Even prescribed narcotics cease to dull my pain.  I sit for endless hours in an ER to receive a shot that lulls me into a peaceful state.

It is during this time, I often mentally battle with my ability to continue on this journey. It is during this time I understand how many people with chronic pain have opted for the presumed “easier way out.”

I’m grateful my spirituality  prevails and the morning brings a joy!  I count my blessings after late nights and I am truly thankful….thankful that Im not confined to a bed or a wheelchair. Thankful that I know that each  flare will pass….eventually.

Thankful to see the sun peek through, reminding me that I  made it through to another beautiful day.  Thankful that through it all, I’m still running…

If you are struggling with any pain, whether physical or mental.I pray  you find the strength to wait on the sunrise.

Peace, Love & Empowerment

Vo-GIRL-CRYING-facebook

Fighting through the fog..

Favim_com-18493So this weekend I was able to reflect on many things and reflect I did…Unfortunately I was admitted to the hospital on Saturday. I have battled fibromalaygia for 7 years and often the chronic pain I experience is unbearable! I am always in pain, however some days, I have what is referred to as a flare. My children often push me to go to the ER on my  worst days and this weekend I obliged…even though I knew it would not be pretty…My intense pain is always met with a shot…in my hip.  Its not fun as you can imagine, but I have pushed through for many years.

This weekend, I felt different…the doctor informed me that I would be staying over night, because my blood pressure was low. Needless to say over night, turned into a weekend and I reflected….Although I often keep my struggles private…I  have learned that crosses can not be beared alone and as I sat in the hospital bed…several reminders were dropped into my spirit.

I thought back over my life, my journey, my accomplishments and I was reminded about all I have given and done for others over my time here on earth…its been too much too count. I was reminded that I must take a little more time for me..I was reminded that I was expendable and also informed that I was not getting any younger. Reminded that some things are not that important and that some people are very important!

Reminded that I must not continue to give until I am depleted…My 2015 resolution was once again dicphered and I analyzed it well.   I fought through the fog of fibro and will continue to fight…

I was thankful for the family and friends who checked up on me.. the ones who reminded me of all the “reminders” I often forget about,,,grateful for the texts and phone calls.

This post is simply a reminder to each of you that life is simply what you make it…live it and live it well, beacuse you only have one and that “one” is valued by many.

Peace, Love & Empowerment

Steph

http://www.I-Speak-Female.com

http://www.virtuousvibes.com

Calling All Spoonies! Help me make “invisible illness” more visible with the #spoonieselfie challenge.

Spoonie= someone who lives with chronic pain who identifies with Christine Miserandino’s Spoon Theory- a theory that illustrates how people who are chronically ill must carefully manage their limited energy, or “spoons”.

Stock headache/pain photographers need to widen their scope.

Maybe some chronic pain sufferers look like perfectly made-up young women with perfectly symmetrical features and perfectly styled hair, holding their pore-less, freshly powdered faces while in the throes of pain, but I’m willing to bet it usually looks more like this:

 photo 1 (6)

or this

photo 5 (2)

or even this

photo 2 (8)

(Why would I eat the corn when I can smoosh it against my eyeball? It goes right through you anyway.)

In reality, pain is not pretty. Bras are off, crying is on, and makeup and hairstyles go every which way. Features are crumpled, made-up yoga poses ensue, and there is usually a fair bit of snot, right?

Here’s the challenge spoonies:

Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to annaeidt@gmail.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.

Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]

If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.

I want all bodies and experiences to be reflected in the images we are bombarded with daily. Time to throw so-called invisible illness into the mix.

Anna

(originally published @migrainebrainstorm.com)