Invisible Illness Awareness Week ~ Do You Think People Notice?

With so many National days on the calendar now ranging from National Waffle Day to Fibromyalgia Awareness Day, is anyone even paying attention?

Does anyone even know? What's the point of trying to bring awareness one day of the year if no one wants to hear about it the other 364 days of the year? Does it even actually bring understanding to those who haven't been touched by the situation or disease? It seems I am not the only one who wonders about that.

One of my young adult friends was struggling with the idea of the need for Suicide Awareness Day. The topic hits really close to home for her and she posted about it on her Facebook page. "My problem with the day is that wearing yellow and writing love on your wrists (or whatever the plan is this year) does about as much to prevent suicide as say dumping a bucket of ice over your head cures ALS." She went on to say that the reason she was so bothered by it was that she felt that most of the people who were involved were only involved that one day and ignored it the rest of the year. 

I have been thinking about this since the ALS challenge had gone viral and the youth in my area were taking the challenge in a different direction. It became a name calling, one upping, do it or else kind of thing. There seemed to be no awareness of why they were doing it, even stating on video that they were doing the "ASL" challenge or "the ice thingy challenge" with no mention of the disease. I felt frustrated.  If there was that much attention being focused on ALS and it still wasn't bringing awareness, what would?

There are many invisible illnesses out there that people have heard of but don't know how they affect people or why. The stigma and judgment cause most of us to keep quiet whenever we can. We don't want to talk about it because of what people might think. Or worse, we already know what they think and don't want to hear it.

By keeping quiet and not speaking up, are we doing more harm than good the rest of the year? People may have heard about the illness we have and look at us as an example. Maybe, their idea of the illness is altered because they see us being strong. It makes me wonder, could we be causing others to judge someone else more harshly because we are better at faking well?

Since I started my Facebook Page and this blog, those closest to me have had the opportunity to finally see a glimpse into my private hell. At first, some were taken aback and seemed a little concerned that I was concentrating too much on my pain. Maybe, it's because it isn't always pleasant and comfortable to know the truth. I have been living with this for over 10 years. I hurt every day, not just once a year on Awareness Day or once a week on Awareness Week.  My entire life changed and nearly everything I do affects me. Yeah, I might think about it often! I just had been choosing to keep that part quiet and not share it. But, then I realized that there were so many others who shared my illness, my pain, my trials and my desire to strive for a great life while facing the possibility that this could be the best I ever feel again. I am not really sure whether they read my posts any more and that's okay. 

I carried a lot of guilt and shame over the last many years . Once I started truly accepting my illnesses, I was free to talk about them and stop trying to make excuses. At the risk of eye-rolling, judgment, or friends that just don't want to hear it anymore, I will continue to post on my personal Facebook page, my support page, blog, and talk about it regularly and not just on the designated days. It keeps people aware. After all, I have really good days where the pain is low but it is still there every day.

Of course, this isn't the ONLY thing I talk about. I am much more than just my illness! But, if it comes up in conversation; if I cancel plans; or if I am having a really rough day, I am through saying, "I'm fine, just a little tired." I have found that there are people willing to listen and try to understand if we have the courage and take the time to explain. I can't be frustrated because people don't understand if I am not being honest with them in the first place. What do you think?

Sometimes you forget how far you have actually come

I clean my church each week w/my daughter (usually on Saturdays). We went up last night to get it done early in order to take today off & enjoy the day. It is pretty far from my house (about 35 min one way). We got there & I realized that I had forgotten my key. Not only had we driven all that way for nothing but now we had to come back. Sighhh...

I keep talking about the FLY system & how important routines can be to help us become more organized. Keeping track of my keys has been a huge problem for me. I used to lose them all the time. I started making sure that they were always in the front pocket of my purse. For almost a month, I always had my keys in the pocket. When I came home earlier yesterday, I set them on the table and my purse on the floor. My daughter drove and I didn't "need" my keys to get there so I didn't even think about checking. I was devastated. How could I have forgotten? I instantly thought ughh it's the same old thing & I started to beat myself up.

But, then I realized that was not true. I had gone so many days without forgetting. I had been very careful. YES, it stunk. YES, I messed up. Guess what? I will never be perfect. I will make mistakes. But, now I know that I will have to add another layer to putting them in the pocket. Each time I leave, I will have to check the pocket & make sure that they are in there whether I am driving or not. In 4 weeks, I forgot them once. My husband pointed out that one time in four weeks is 75% of the time. A 75% is a passing grade NOT a fail. But, I want to keep working towards that 95-100%. I can't do that if I just keep thinking about how "I did it again!" Instead, I need to choose to treat myself the same way I would treat anyone else. "It's okay" and let it go.

Please Stand By.... Brain Fog Ramblings In Progress

When this little project started, I was worried I would have too many posts! Guess I hadn't counted on real life, bad days, and general brain fog!

I started a post two weeks ago and it morphed into 2 different ones that still aren't ready!

My kids started school today. I have a senior and an 8th grader. Where my time goes, I do not know!  Seems like summer just started and it is over. I have been really focused on getting them ready to go back to school and planning for their packed lunches. Groan... one of my least favorite tasks.

They never really knew what they wanted for lunch, but whatever I suggested was NOT it! Are you looking for ideas on packing school lunches? Check out our Pinterest Page. Now, if you have ever gone on Pinterest, you can probably guess exactly  where my time went!

My girls are actually kind of excited when I rattle off some of these new ideas. Don't drive yourself nuts cutting things into a bunch of shapes! I was looking for some different ideas besides ham or peanut butter and jelly sandwiches. I also like that some of these ideas and recipes are make ahead & freeze. I am always on the look out for things I can plan and have ready ahead of time.

Flares and migraines do not come with advanced notice or make reservations to visit. Sometimes, they just show up without warning. If I am prepared a little ahead of time, it lessens the time and effort I have to put into doing things I have to do and attend to my health. That's a win!

When I can find a win (no matter how small) it puts a little joy in my heart. That joy carries over to my family and those around me, which causes another win for me when I can spread joy to others!

Unexpected Lessons From My Teens ~ What Have I Really Been Modeling While Being Strong Through Chronic Pain?

Photo by K Noland of Ft. Myers FL

I feel like I have limped my way through the last 11 years. I have allowed my health and feelings to dictate my days. I have quietly pushed too hard and then suffered in relative silence. I was trying to be so strong. I had this life altering experience with my health and medications with awful side effects while I was helping to raise 2 little girls. I didn't have anyone to talk to. So, I started talking to myself.

At first, I was encouraging and then, when I didn't heal as I should have, I got frustrated with myself. A few more surgeries, more meds, more pain, and less healing lead to feeling pretty bad about myself as a woman and as a mother. Most of the time, I just hurt and wanted to be left alone. You can't really hide from those you are caring for. Believe me, when they are hungry, they come looking for you!

I had this idea that I had to do everything...AND do it perfectly. I had this picture in my mind of how my mother was and all of the things I wanted to do the same or differently. I kept thinking that I would have plenty of time to care for myself after the kids left home. So, I always put myself last or not at all. I couldn't wrap my mind around the knowledge that the picture that I had in my head and the reality of actually achieving it were way off. The very idea of perfection is ludicrous to begin with but add surgeries and chronic pain and now it is just plain insane!

I have always been a fierce advocate for my children; especially, when they speak negatively about themselves. I encourage them to give things their all so they will have no regrets. I hear myself talking to my girls, loving them and trying to guide them along through the years to be strong, confident, and capable young women. I think about their futures and wonder about them being wives and mothers raising their kids. I stopped dead in my tracks when my oldest turned to me one night while she was clearing the dinner dishes and said, "I am not going to spoil my kids the way you spoil me". I nearly choked. I happened to find this hilarious and laughed hysterically; considering that she is the one who is always asking someone to do something for her (insert eye roll here!). But, it really got me thinking.

I started to wonder, what was I teaching my kids about being a woman and a mother? Uh oh... I didn't want my kids thinking that they had to do everything perfectly. I didn't want them to work as hard as I did. Suddenly, it hit me that my own behavior, and trying to be so strong, might have actually modeled the exact opposite of what I have been trying to instill in them. Here comes the “face palm” moment:

My oldest has P.O.T.S. (Postural Orthostatic Tachycardia Syndrome - which is an autonomic syndrome that affects BP and heart rate). We don't know if this will get worse with age. I don't know what kind of trials she will face in her life. I am constantly in her ear telling her to take care of herself. Um, yeah... I haven't been any kind of role model for that. This is about the time that I hung my head and started doing some heavy thinking.

My husband and I have always talked to our kids about going to college. Based on the careers they have talked about, college is the only way to make those dreams come true. My husband would always tell them, “Do what you love”. My oldest has wanted to be a marine biologist and train dolphins since she was 5 years old. She kept thinking that she had plenty of time, until she took the SATs a few months ago. Now, with graduation looming in less than a year, she is feeling a bit rushed to make important choices quickly. I find myself reassuring her and telling her to trust her own judgment about what she wants for her life. I want her to know that it's ok if she doesn't have it all figured out yet; she just needs to start somewhere. I realized that DANG, I give great advice!! But, why aren't I taking this advice?

All along, I have been thinking that I have so much time. Why? None of us know how long we have here. What makes me so different? I would never speak to my kids the way I have spoken to myself. I would never place the expectations on anyone else that I put on myself. Let alone, someone that I know is in pain and discomfort every day. Every fiber of my being believes in my children and that God will see them through this confusing time of growing up. I have no doubt whatsoever that God has been with me through my time of struggle. So, why should I still be so hard on myself?

This life of mine never had a pause button. My life kept going even though I stopped living as if I mattered. I need to learn to train my inner voice to speak to me as though I am one of my own kids and keep encouraging me to find ways to live fully ~ not just drift from day to day with sporadic bursts of energy and flaring. Maybe I need to mother myself a little! 

Open Letter to Pain by Beni E. Splater

AN OPEN LETTER TO PAIN

Dear Pain,

You received no invitation but yet here you are. 

You are nothing but like a criminal stealing.

You stole my educational experience, my work experiences, my career, my family, my social circle, my friends, my health, now I’m financially ruined and destroyed, my vision of WHO I AM.

You invaded my body like two world countries at war with one another. You did so with no respect for human life. You have no mercy. But you forgot, when things invade, people will react, we will NOT let you push us down and then walk all over us-tearing us apart. Limb by limb.

I will continue to fight YOU-pulling all of the strength that I have built up inside of me-an endless amount of strength just for times like these. You may be laughing now when I am crying because of pain but, in the end, I will be the one standing over you with a great big smile.

I will continue to rise. I will continue to set and reach my goals, with more will power, now, than ever before. I will continue to reinvent myself-day after day, while you are being worn down. You must remember pain, you will never be able to touch one part of me-MY SOUL.

You must remember, God created me with His own Hands according to His own Image. You can never take that away from me because my faith will beat anything that attempts to shatter it!

E. Splater

Copyright, All Rights Reserved, Beni E. Splater, 2014, "AN OPEN LETTER TO PAIN". No part of this letter may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of Brian A.k.A. Beni E. Splater.Facebook Page: The biggest fight of our lives chronic condition and chronic pain

Migraines ~ Krys from A Healthy State of Mind

Hello there, my name is Krys & I have been a blogger over at a little place called A Healthy State of Mind for two years now. I was really excited when Kristine asked me to be a guest blogger here on her brand new blog, Finding Joy in the Midst of Chronic Pain. I feel very honored to take part in her new journey into the blogger world.

  

To be honest, I felt slightly hesitant at first to write about my own experiences with chronic pain. It wasn't because I didn't want to talk about them, nor was it fear of sharing my thoughts openly... It was because I feel that I am one of the lucky ones. By lucky, I mean that I am able to get out of bed every morning. I am able to go grocery shopping, clean the house, plant in my garden. I am able to do things & because of that I find myself often undervaluing the pain I do have. There are so many people out there worse off than me & more often than not I feel guilty for complaining. A little advice... Don't. Don't ever feel guilty for hurting. Don't ever think that just because someone hurts more or even differently than you, that your experiences are insignificant. It matters & you matter. Your pain, emotions, feelings, life, is just as important. Never forget that!

Moving on & back to a little bit more about myself. I am currently diagnosed with Polycystic Ovary Syndrome (PCOS), Anxiety Disorder, & Migraines with aura. It certainly is a nice little cocktail of some invisible illnesses & some not so invisible side effects. All of which are often misunderstood by those who have never experienced them. Everyone has bad days right? Right. But not everyone has them nearly everyday. Anyway, today I am going to talk about Migraines.

Migraines with aura are actually fairly new for me. I've always had headaches growing up, but last year on a road trip up to the Appalachian trail I was thrown into a full fledged migraine complete with aura. Migraines with auras are actually rare & only account for 20% of all migraines. Lucky me, right? When I first experienced the aura my first emotion was fear. I was nearly blinded by a bright wavy line that started off small & eventually took over my entire line of vision. I could not see & I had no depth perception what so ever. I cried & after it passed, I got home & I researched it. An aura actually comes before the migraine & can last up to twenty minutes. Once the aura passes the pain from the migraine begins. 

Since my road trip last year, I tend to experience two to three migraines a month. Most of the time with aura. I still wonder why they started when they did, but even my doctor couldn't explain it. Sometimes I think the change in the weather brings them, other times bright lights from a computer screen. But either way, they happen & they hurt. 

My Doctor prescribed me a migraine medication called Sumatriptan to take with my double strength Naproxen to treat my Migraines. He made it seem like if you take this magic white pill when your first experience an aura, the migraine will be stopped before it even starts. You'll be all better! Well, the first time I took it, it made me really sick. I was nauseated & warm inside my own skin. I was so dizzy that I had to lay down & eventually fall asleep because all of that on top of the migraine was just too much. When I saw my doctor again I told him that I would not be taking the Sumatriptan again. I told him how sick it made me & after staring at me blankly, he made me feel as if I took the medication wrong. Well, okay then!

I recently tried the medication again, I even took it with food to be on the safe side. Well, apparently I did not take it wrong the first time because it made me even sicker this second time. The muscles in the back of my neck & shoulders tightened & would not release. And, the migraine came anyway. So again, I laid in bed, aching, stiff, nauseous, & in pain. I will not take the medication again... I saw no point in making myself sicker. 

That's the funny thing with medications, they affect everyone differently just like illnesses. You never know who is fighting 

a battle with their own body or even with the miracle medications that the doctors prescribe.

                                                                                                                                        

Did you really just say that?

Lately, I have been surprised at how freely strangers are sharing their opinions of me (or my loved ones) and asking direct questions that seem so personal. I was shopping the other day and had an older cashier. She was at least 20 years older than me (I am 40 something). As she started packing the groceries, I asked her not to pack them so full and added that I had a hard time lifting them if they were too heavy. She stopped what she was doing, looked at me, and said, "Huh, I can lift more than that!" My first response was, "Well, good for you!" and I smiled. As she finished scanning my items and I was paying, she kept looking at me. I said thank you and started to leave. As she began ringing up the man in line behind me, I heard her comment, "Well, that was weird." and the man agreed. I looked back and they were both staring at me. At this same store earlier in the month, I had another cashier get annoyed at my request to not pack the bags too full. She kept watching me as I struggled to load the groceries into my cart and was visibly limping. She asked, "What's wrong (emphasis was placed on that word) with you?" Unfortunately, in a small town, my choices are few and it happens in other stores as well. What, am I supposed to wear a sign or something? What happened to just general compassion?

My sister broke her leg this past winter and I took her to one of her doctor appointments. She was using a walker and we were trying to find a ramp outside so she could easily get inside. A man, who was leaving, went out of his way to let me know that the handicapped parking was at the other end and I should have parked there. The parking lot was almost full and I parked as close as I could. Since I don't have a handicapped tag, I am not permitted to park in that zone, but he kept persisting. Why? I have no idea. Then, inside, another patient kept hounding my sister with many questions about how she broke her leg, was it at work, how long ago and many other questions. It is nice to show concern, but this woman went on like she was going to write a book. It was awkward and weird.

My teenage daughter has postural orthostatic tachycardia syndrome (POTS). It is a malfunction of the autonomic nervous system (the system that automatically controls heart rate and blood pressure). Sometimes her heart rate and BP just rise or drop suddenly and she gets very dizzy or nauseous. She is in high school so, naturally, I made sure that it is on her records & have spoken with the school nurse about it. The school nurse doesn't seem too concerned though. Earlier this year, she had a sudden and severe rise in her heart rate and BP. My daughter called me and told me that she didn't feel well. I told her to go right to the nurse and have her call me. The nurse told me she was fine. How did she know this? Because, she looked fine. I asked her to take her BP. She didn't think it was necessary. Why? Because, she looked fine. As a mom, I went full-on Bear Mode. I told her to do it anyway. The nurse took her BP and nearly had a fit. "Oh, I am sorry" she says. "Yes, it is very high. You should take her to the ER" she says. I am already in my car, because I knew it was a problem. My daughter had another episode the other day. I told her to go to the nurse and I would call and let them know that I was coming to get her. The nurse was with other adults and just dismissed her. My daughter explained that she didn't feel well and that I was coming to get her. One of the other adults was quick to say, "You don't look sick". The school insisted that I get a doctor's note excusing her from school. Of course, her doctor wrote a note and was very concerned by their lack of understanding and knowledge on the subject. I brought the note and some literature on her syndrome to the nurse and she acted like it was the first time she had ever heard that my daughter had this. Sighhh. She had forgotten the entire episode just a few months ago. I went through everything again, she checked her records & bingo! Sure enough, it was on there! But, her attitude still seemed to be "she doesn't look sick". I know that she has a lot of students to care for and many might just be trying to go home but it shocked and really disappointed me that she wouldn't have remembered something like that.

It really blows my mind that so many people seem to lack compassion or aren't even willing to try to understand others before they jump to conclusions. Most likely, everyone we know is either suffering from some ailment themselves or know someone who is. I wonder if the people who are easily annoyed, amused, or confused about why some people act sick but don't look sick would feel if they (or their loved ones) were on the receiving end of their own comments, inquiries, stares, or dismissal. We shouldn't need to wear signs that spell out what's wrong with us. If only people were a little more open to the fact that invisible illnesses are invisible and anyone can be sick without looking sick, it sure would be nice!