5 Changes NOT to Make if You’re Tackling Chronic Illness

Guest post by Jackie Walters of Hyper-Tidy.com

Getting diagnosed with a condition that causes chronic pain can be overwhelming. Soon, you’re flooded with advice from do-gooders who might be passing on outdated or wrong information or myths based on a number of faulty sources. Always ask a medical professional for advice on how to make lifestyle and home changes to address your chronic pain. When friends and family members pipe in, it’s often best to digest their information then discuss it with your doctor if it piques your interest. Avoid following non-professional advice blindly.

Bad advice can be useless at best and dangerous at worst. Loved ones might be offering advice based on a completely different condition. Here are some common supposedly “good” tips and advice that you may want to avoid:

1. Just walk it off. This is an extremely dangerous (not to mention unhelpful) hangover from the nostalgic days of P.E. class when absolutely any ailment was seen as a weakness. “Just walk it off!” can be modified into any number of unhelpful sayings, but the meat of it is always the same. This so-called advice is basically telling you that your condition isn’t serious, perhaps isn’t real, and can be easily shrugged off. It’s usually best to completely ignore the person giving this advice.

2. Just hire some help. Two types of people might offer this advice—those who have the means to hire plenty of outside help themselves or those who don’t understand the financial investment of such an undertaking. It would be fabulous if everyone had the disposable funds to hire help for everything from house-cleaning to laundry, but that’s not the best way to spend money for most people. If you have chronic pain, it would certainly be helpful if you had someone else to mow your lawn, and it could certainly ease your chronic pain, but it’s not always feasible. Steer clear of non-professional advice that tries to govern how you allocate your funds.

3. Just get some rest. This is the opposite of “walk it off,” and in some cases your doctor might agree. Sometimes this advice is truly genuine, but other times it’s a way for others to help make an excuse for themselves to take it easy. It’s kind of like “gym buddies” who aren’t very supportive of their same goal, encouraging one another to go ahead and have the dessert, skip spin class, and to get “back on track next week.” In some cases of chronic pain, too much rest has the opposite of the desired effect. Count on your doctor to prescribe rest and workouts specifically for your condition.

4. Put some ice/ heat on it. Ice and heat can both be great tools for pain, but they each do very different things and are prescribed for different types of pain at different stages. If you enjoy cold and heat therapy, talk to your doctor about when to apply each and for how long. Ice constricts the body (including muscles and blood veins/vessels) while heat loosens. Both might feel good, but the results may not be what your body needs.

5. Here, take this medication. It doesn’t matter if it’s an easy-to-get, over-the-counter medication, or perhaps a friend is offering up a prescription medication they swear works wonders. Painkillers are the most commonly abused prescription drugs. Plus, some medications might have dangerous results when mixed with others. Only your doctor should be prescribing medications as well as telling you which OTC options are best for your condition.

People love to help and to fix things. This goes double if you have a loved one who knows someone else with the same condition as you (or think they do). It’s usually best to be polite, thank them for their advice, and move on. You don’t want too many cooks in your wellness kitchen, especially those that aren’t qualified.


About Jackie Walters

I was diagnosed with rheumatoid arthritis in my mid-20s. Afterwards, I began making the lifestyle changes needed in order to minimize the number of medications I would need to take.

As a neat freak, I’ve always been obsessed with a clean home. So, one of the first things I did was throw out harmful cleaning products and re-organize my home so that it would be easier for me to manage my “bad” days. I also made diet and lifestyle changes to minimize, as much as possible, my joint inflammation.

I understand how scary it is to be diagnosed with a chronic illness. I love to share what I’ve learned with people who are newly diagnosed or who are struggling.

Visit Jackie at Hyper-Tidy.com

A Girl (Poem Written By Me)

I’m a girl with a fragile heart
Bandaged together with care
Cracks spread everywhere
In danger of shattering
Treat it with care-
I only have one.

I’m a girl with trust issues
Break my trust once
It’s so hard to get back
But there is hope
If you want it bad enough
You will work to earn it back.

I’m a girl who uses writing to express herself
I’m not so good with words spoken out loud
Pencil and paper are my voice
My words can be few
And full of meaning
Or lots of words with little meaning

I’m a girl who hates being put on the spot
When asked a question randomly
I freeze up, forget to breathe
My face burns red, my body gets warm
I stutter, trip over my words
Before they turn to someone else.

I’m a girl who is protective
Of her family and friends
Hurt them, I come after you
Hurt me, they come after you
We protect each other
You’ve been warned.

I’m a girl who smiles a lot
Finds happiness in most things
Even the unpleasant one’s
Life is full of sunshine
But also filled with rain
The way you see it is up to you.

28 Things About My Invisible Illness You May Not Know

The Illnesses I Live With Are: Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression

I Was Diagnosed With It In The Year: 2012

I Have Had Symptoms Since: 2012

The Biggest Adjustment I’ve Had To Make Is: Not Being Able To Do The Things I Used To

Most People Assume: I Am Faking It For Attention

The Hardest Part About Mornings Are: Getting Out Of Bed

My Favorite Guilty Pleasure Is: White Chocolate Kit Kats

A Gadget I Couldn’t Live Without Is: My Tablet

The Hardest Part About Nights Are: Insomnia Due To Pain

Each Day I Take: Antidepressants, Pain Meds

Regarding Alternative Treatments I: Have Tried Almost Everything And My Pain Management Doctor Is Running Out Of Ways To Help

Regarding Working And Career: I Am On Disability

People Would Be Surprised To Know: I Am Much Sicker Than I Look

The Hardest Thing To Accept About My New Reality Has Been: Losing Family And Friends

Something I Never Thought I Could Do With My Illness That I Did Was: Accept It

The Commercials About My Illness: Not Sure Actually
Something I Really Miss Doing Since I Was Diagnosed Is: Going On Long Walks

It Was Really Hard To Have To Give Up: Food I Love

A New Hobby I Have Taken Up Since My Diagnosis Is: Writing

If I Could Have One Day Of Feeling Normal Again I Would: Go On A Long Walk, Eat My Favorite Foods And Go Swimming

My Illness Has Taught Me: To Believe In Myself When Others Don’t

Want To Know A Secret? My Illness Is Worse Than I Usually Tell People

But I Love It When People: Ask How I Am And Actually Want To Talk

My Favorite Motto, Scripture, Quote That Gets Me Through Tough Times Is:You Were Given This Life Because You Were Strong Enough To Live It.”

When Someone Is Diagnosed I’d Like To Tell Them: They Are NOT Alone. Ever.

Something That Has Surprised Me About Living With An Illness Is: I Am More Confident

The Nicest Thing Someone Did For Me When I Wasn’t Feeling Well Was: Brought Me Food And A Book To Read

The Fact That You Read This List Makes Me Feel: Happy That You Care

To Be A Vampire

Okay, I know this is totally weird and at the same time kind of funny, but lately I have been wishing more than anything that I could become a Vampire. For many reasons. Please don’t judge. This may seem silly to you, but if I could make this happen, I would not think twice about it.

Wierdly, there are a LOT more good things about being a Vampire for me then there are bad things.

PROS

  1. They can heal easily, which means that my illnesses would no longer be a problem. This is the biggest reason. My illness has just become a bigger problem as time goes on, getting worse and worse, new symptoms popping up randomly, the pain increasing greatly.
  2. They have super speed which is just awesome and you can get places faster. Way faster.
  3. You will live forever.
  4. You can turn those you love so they can be with you forever.
  5. You can heal your friends and family if they chose not to become a Vampire
  6. You can go anywhere, do anything.
  7. You can flip the switch and choose not to feel (Not sure if that is a good thing, or downside, but it varies from person to person I guess)
  8. You can compel people to forget things, which for me would be all the stupid crap I say out loud.
  9. Super strenght
  10. HUGE tolerance to alcohol (Cannot drink it due to my illnesses)
  11. You never age.
  12. You never get cold. (With my illnesses, my temperature always can go from boiling to freezing just like that.

CONS

  1. Having to drink human blood either from blood bags or kill someone. Or, I guess you could try Stefan’s way (Vampire Diaries) and eat little cute bunnies xD
  2. Having to deal with the guilt of everything you have ever done if you kept your humanity on.
  3. Only going out at night, Unless you somehow got a daylight ring. But I like nighttime best anyway.
  4. You’ll be stuck with whatever imperfections you had when you were alive

 

Fear

“You can’t stop being afraid just by pretending what scares you isn’t there” -Michael Marshall.

This quote strikes close to home with me. For years I ran from my problems. Or, tried to. I thought if I stopped thinking about it or talking about it, that they would go away or that I could convince myself that I imagined it.

I have severe anxiety and a lot of things made me have panic attacks. Even the little things like I forgot to do something or that I think I forgot to lock up the house when I left. I can’t stop thinking about it until I get home and check. It makes me a nervous wreck.

I have a lot of things that I am afraid of. Some justified and some that are just ridiculous. My biggest thing lately with all the stress and me being sick is that I am so scared to sleep without my husband at least being in the house with me. So when he goes to work I get so scared of someone breaking in or getting hurt that I stay up all day till he gets home then crash in bed because since I’ve gotten sick I’ve been super exhausted.

I’ve been Chronically Ill for almost 5 years now. I got diagnosed with my one problem right after I got married and then slowly I keep getting more sick and with more illnesses. And the hardest part isn’t the doctors, or the tests, or medications. It’s the fact that I rarely leave the house unless I go shopping for food or whatever else I have to do. So with that comes losing the ability to be social. Okay, not losing the ability, just… Out of practice.

I rarely leave my house other than mostly doctor appointments. And I don’t have any friends that come visit very often. So when I do go out with my friends or try and make new ones it’s very hard for me. I don’t know how to have a normal conversation that doesn’t sound like I’m complaining or making it all about me.

It’s hard to admit but, I seem to just complain lately to anyone who will listen about how much my life sucks in my eyes. When in reality, my life is the best it can be. I just need to let go of the past and focus on getting better and coping with what I struggle with.

And learning to face my fears no matter how ridiculous they may be. Once I do that, maybe I can start moving forward and keep moving forward instead of one step forward and three steps back.

I just need to believe in myself.

Dear Addiction

Dear Addiction,

There you are back again pulling the rug right out from under me. You invade my thoughts, my dreams, even my life when I am awake.

You are always there. Watching. Waiting. Trying to get me to slip up and take solace in the sweet words you whisper as I sit there staring, trying to fight it with all my heart.

I HATE You. This is not who I am anymore. You may have had a hold on me, always pulling me down till I thought only pills and getting high was the answer. But guess what? No more.

I played into your hands for years. You almost destroyed everything I care the most about in the world. My family. My marriage. My friendships.

I almost lost everything because of you.

Oh, it’s my fault, you say? You are partially right. But you are also wrong. Yes, I chose to do the things I did, but you were the one whispering the ‘sweet nothings’ into my ears late at night.

You, dear Addiction, do not have a hold on me anymore. Yes you will always be there, but I know now that I do not have to listen to you. I am stronger than this. I can beat you.

You laugh at me, the sound echoing in my head. Saying I will never be free of you. That I will always be back.

But I won’t. I have something here that you can never match. I have a wonderful family. I have a amazing understanding husband. I have the strongest support system I could ever ask for.

So, my dear addiction, you and I are done. For good this time. And the best part? When I feel you trying to pull me back in to the darkness I used to consider my friend, I will have 1,000 friends and family pulling for me here.

I am not alone. But you are now. Enjoy the darkness, my old friend.

5 Reasons I Started Blogging About My Chronic Illness

There are many reasons that I started writing about my chronic illnesses but I thought I should shorten the list so here are my top 5 reasons that I started blogging.

Reason #1: To connect with others

When you get diagnosed or even start having symptoms, life changes no matter how hard you try to make it stay the same. For me, my life changed so much that I lost who I was for a while. I also lost countless friends and family and most of them 5 years later are still gone out of my life. Slowly I found my way, but I was never who I was before. Despite what some people say, I don’t think many of us stay the same, illness or not.

I have spent almost five years blogging about my Chronic Illnesses. At first I just blogged about anything and everything but the day I got my diagnosis, I decided to start blogging about things that actually had depth and meaning to me.

I still blog about anything and everything but there is one difference. Now when I do write about anything and everything, it has a lesson, a meaning, a story.

I would like to think that even if I had not gotten sick I would have started blogging anyway, but the truth is, I am not sure.

Reason #2: To share the illness experience

When I first got my diagnosis, I thought going to a support group would help me but I looked around and couldn’t find one. That was when I realized that I didn’t have to have a in person support group to get support. I found the best support groups on Facebook. I have some of the best friends I have ever had due to these groups.

Since becoming diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression,I’ve learned how to ask for support and, in return, give support to others.

Reason #3: To give my husband and real life friends some downtime

There is only so much that my husband and real friends can take of me and my illness. They need a break too.

Reason #4: To deal with what I feel

I have always been a writer, will always probably be one but blogging has helped me so much emotionally. I have been able to finally start dealing with what I feel. I am still dealing with it and honestly, I may never be able to fully deal with everything that is happening because my illnesses are incurable. They aren’t fatal, but there are only a handful of treatments for my illnesses. And even some of the last resort options for Interstitial Cystitis and Endometriosis

Reason #5: To help others

You are not alone. Even if we do not share the same illnesses, we understand each other on a level that most healthy people do not.One of the best things that happened when I got my diagnosis was finding fellow “Spoonies” that knew exactly what I was feeling, how I was feeling, because they deal with it as well.

And since I am bearing my soul here-smirk-I would like my work to help those who are having a bad day. They pull up my blog, read my posts and for five minutes, everything is okay.

What are some of the reasons you started blogging? Comment below!

Tragedy And Heartbreak

I literally have no words for what I am feeling right now. Rigby has always been considered my home, although I now live in Idaho Falls. I am so shocked and heartbroken that things like this happen and seem to be happening more often due to the ‘no balls’ challenge/dare.

I know there are several of you who have been filling my inbox with messages, and I will get back to you asap. And, yes, I will be posting about this for those who have requested to know more, to know what they can do to help those around them as well as themselves. This has touched so many people, even some who never knew him, like me. The outpouring of encouragement, letters, emails, pictures, and so many comments/emails with some needing help, others wanting to know more about all of this, others reaching out for advice for themselves as well as loved ones has gone a long way in helping those who need it and I have gotten several requests to write more about this, ways people can help, to support others, etc.

Please, if you ever need help or someone to talk to, don’t hesitate to call/write/message/text me at any time. You can find my social media sites and contact info below.

BLOGLOVIN’

CHRONICALLY ILL AND FABULOUS FACEBOOK

DANGEROUSLY NORMAL SPOONIE FACEBOOK

EMAIL: spooniesanctuaryblog@gmail.com OR dangerouslynormalspoonie@gmail.com

IC-TODAY

INSTAGRAM

PHONE: 208-534-5149

PINTEREST

SPOONIE SANCTUARY FACEBOOK

SPOONIE SANCTUARY TUMBLR

THE MIGHTY

TWITTER

Despite rumors, Rigby tragedies are separate incidents, officials say

Rigby High students greeted with touching display of support following tragedies

Obituary For Chance Alan Struhs

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Already Taking A Break-Thanks UTI-I Hate You

I JUST started my new blog and here I am already needing to take a break thanks to yet another UTI. Most people I know that do not have Interstitial Cystitis can handle a UTI and still be able to function normally and not have to change their normal schedule. They are the lucky ones.

The only good thing about getting UTI’s as often as I do is that I am able to tell almost the minute they start to appear and that means I get the medications and rest I need faster, which makes my UTI not as bad as normal-if I catch it in time.

I finally had a good day-minimal pain, less tired than normal, less bloating and pressure in my stomach- so of course before going to bed last night, I told myself that today was going to be the day I do it all! Ride around the block a few times on my new bike (Pictures below!), go to the park and swing and slide to my hearts content (Yes, I am immature-no I don’t care), spend time watching tv with my hubby, and then later we would walk around the river like we used to do before I got sick.

And, of course, the complete opposite happened. So far it is almost 7am and I have been up for hours in and out of the bathroom as well as switching frozen water bottles out as they start to unthaw. My AZO supply is already running low which is very annoying when having to take it many times a day. Since I have IC, the ‘normal’ helper for a UTI-Cranberry Juice- is one of the worst things for IC when I get a UTI. It feels like filling my bladder full of acid and I learned very early on that no matter how much cheaper the AZO with cranberry might be in bulk, to still avoid it at all costs. That means anything with Cranberry in it, tablets, juice, powdered mix, etc.

Yet another UTI. You would think that since I have had Interstitial Cystitis for almost 5 years now that I would know how to make them happen less. Well, it’s a nice theory, but no. I have tried so many things, natural remedies, OTC medications, Prescription medications from many different doctors, and nothing seems to help protect me against getting them so often I feel like I am suffering from a never ending UTI.

So, for the time being-usually about 3 days into the 10 day antibiotics I usually start to feel a little more like myself- I will be taking it easy. Resting a lot, guzzling bottles of water and baking soda (Sounds gross, and always makes me nauseous if I drink it too fast, but it helps a lot to ease the pain and burning) catching up on my Book Nerd Challenge from my local library (50 books in 50 weeks and when we complete it we get a extreme book nerd hoodie!! :D)

I will try and work on my blog more since there seems to be so much more that needs to be done before I even feel like I have made enough progress to take a much needed break. In the meantime, feel free to message me or contact me on any of my Social Media Sites!

And I couldn’t resist. I love The Awkward Yeti and this has always made me laugh-every single time.

And, as promised, here is what my new Shiny Bike Of Awesomeness looks like 😀 I do plan to repaint the green rims because when we originally looked at the bike, we tried a 20″ wheel and my knees were where the handlebars were so we got a 26″ and the green isn’t as neon! And, yes, I took off the basket but kept the cup holder :D:D

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28 Things About My Invisible Illness You May Not Know

  1. The Illness I Live With Is: Interstitial Cystitis, Endometriosis And Pelvic Floor
  2. I Was Diagnosed With It In The Year: 2012
  3. I Have Had Symptoms Since: 2012
  4. The Biggest Adjustment I’ve Had To Make Is: Not Being Able To Do The Things I Used To
  5. Most People Assume: I Am Faking It For Attention
  6. The Hardest Part About Mornings Are: Getting Out Of Bed
  7. My Favorite Guilty Pleasure Is: Kit Kats
  8. A Gadget I Couldn’t Live Without Is: My Tablet
  9. The Hardest Part About Nights Are: Insomnia Due To Pain
  10. Each Day I Take: Antidepressants, Pain Meds
  11. Regarding Alternative Treatments I: Have Tried Almost Everything And My Pain Management Doctor Is Running Out Of Ways To Help
  12. Regarding Working And Career: I Am On Disability
  13. People Would Be Surprised To Know: I Am Much Sicker Than I Look
  14. The Hardest Thing To Accept About My New Reality Has Been: Losing Family And Friends
  15. Something I Never Thought I Could Do With My Illness That I Did Was: Accept It
  16. The Commercials About My Illness: Not Sure Actually
  17. Something I Really Miss Doing Since I Was Diagnosed Is: Going On Long Walks
  18. It Was Really Hard To Have To Give Up: Food I Love
  19. A New Hobby I Have Taken Up Since My Diagnosis Is: Writing
  20. If I Could Have One Day Of Feeling Normal Again I Would: Go On A Long Walk, Eat My Favorite Foods And Go Swimming
  21. My Illness Has Taught Me: To Believe In Myself When Others Don’t
  22. Want To Know A Secret? My Illness Is Worse Than I Usually Tell People
  23. But I Love It When People: Ask How I Am And Actually Want To Talk
  24. My Favorite Motto, Scripture, Quote That Gets Me Through Tough Times Is: “You Were Given This Life Because You Were Strong Enough To Live It.”
  25. When Someone Is Diagnosed I’d Like To Tell Them: They Are NOT Alone. Ever.
  26. Something That Has Surprised Me About Living With An Illness Is: I Am More Confident
  27. The Nicest Thing Someone Did For Me When I Wasn’t Feeling Well Was: Brought Me Food And A Book To Read
  28. The Fact That You Read This List Makes Me Feel: Happy That You Care

Here Goes Nothing

So I have spent weeks thinking about this, making lists, spinning ideas around in my head, asking opinions and finally decided to just do it. So here it is! I have decided to start this new blog and have it focus on the different diseases that people have and how it effects them and those in their lives.

I just finished reading a book called You’re Not You by Michelle Wildgen. And if the book wasn’t amazing enough, there was a movie made in 2014. You can see the trailer HERE.


Bec is adrift. It’s the summer before her junior year in college. She’s sleeping with a married professor, losing interest in her classes, and equivocating about her career. She takes a job caring for Kate, a thirty-six-year-old woman who has been immobilized by ALS.

As it turns out, before the disease Kate was a stylish and commanding woman, an advertising executive and an accomplished chef. Now, as she and Bec spend long days together, Bec begins to absorb Kate’s sophistication and her sensuality, cooking for her, sharing her secrets, and gradually beginning to live her own life with a boldness informed by Kate’s influence. The more intense her commitment to Kate, the further Bec strays from the complacency of her college life. And when Kate’s marriage veers into dangerous territory, Bec will have to choose between the values of her old life and the allure of an entirely new one.

My husband is worried I am pushing myself too hard, which I probably am, but this is something I would love to do, either on my normal blog or create a new one.

I want to learn more about other illnesses and help others any way that I can because I understand what it’s like to feel like you need t0 be able to handle your illness yourself.

I understand how you spend months, even years being told that your illness is all in your head and as much as you try to convince others that it’s not, the more you start wondering if what they said is true, maybe it was all in your head.

I understand how diagnosis changes your life in more ways than get more most people even realize, especially if you have in invisible illness and you look fine on the outside.

I know how validating it is the moment the doctor comes in and says you have a Chronic/Invisible/Fatal illness. You sit there, your hands fidgeting, your heart beating so fast you think you might pass out. You want to scream at them to tell you what the tests said already, not try and make small talk first.

You are so relieved that your illness is not in your head, that you are not crazy, there actually was something wrong with you this whole time and if you would have listened to the people who told you it was probably nothing and that they wouldn’t bother going to the doctor for something so minor, you may not have caught this fast enough to help stop the progression of the symptoms. You (Well, I know I did) feel a little guilty satisfaction and smug when you tell those who doubted you that you do have something wrong with you and that they were wrong.

I know what it feels like when the relief that it wasn’t in your head goes away. Finally, I have a diagnosis and it wasn’t in my head after all! Then, sometime later after the doctor leaves and you go back home, you crash. Hard. You’re whole world has changed. It suddenly hits you that nothing will ever be the same again. You spend hours imagining how life would be from now on and how you imagine handling it. No Scenario can even come close to what really happens when you get sick.

When you get sick, everyone always says “I am always here for you.” but in my experience they say that but always end up walking away the moment you start struggling with your illness and you cannot go places or do the things you used to do. They loved hanging out with you and constantly making plans as the person you were before. They are always there for you when you are healthy and can keep up. They aren’t there for you when you get sick because you cannot go places and do the things you used to do. You change; physically and emotionally. You become a different version of you. You have to stop going the pace you were before. You’ve had to take a step back from things you love.

And….end ramble 😐

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