The Real Chronic Illness Problem – “I’m Fine”

I will be honest, I debated writing this post because I feel that my opinion isn’t popular but I feel like it needs to be said, it needs to be heard.

I am sure it can be confusing when you know someone like me, someone with a chronic illness.  I don’t mean the normal confusing things like, “what is it exactly that you have again?”, because let’s both be honest here, you’re never going to remember all of our diagnoses (yes, there are more than just the one).

The real problem so many of us who live in the world of chronic illness face is one we bring about ourselves.  Let me repeat that, we bring about the real problem we face ourselves.  We have no one to blame but ourselves.  In communities and groups, post after post, it’s all there in black and white.  “They don’t understand”.  Of course you don’t understand, we convince you that “we’re fine”!

How can you even begin to understand what we’re going through when we are constantly trying to convince you that “we’re fine”.  Deep down, if we were brutally honest with ourselves and with you, we’d probably be sobbing, asking for a just a little relief, some semblance of normalcy to our life…but instead what comes out is, “I’m fine”.  Why?  Simple…guilt, pride or shame…take your pick, 99.9% of the time, it’s one of the three.

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I’ll try to make this relatable.  Well, let’s think about it, you don’t usually go into a big spiel about how you hate your job or how your car has broken down or that you argued with your teenager yet again this morning.  Why?  Honestly, you don’t want anyone to know that you argued with your teenager or that your car broke down.  You especially don’t want them to know how much you hate your job.  Mostly, you assume no one wants to hear it.  So you usually answer, “Fine” when someone asks you how you’re doing.  See…we’re not so different.

Just like I don’t go into how my hip-joint just dislodged a bit and I need to go hobble my way to the restroom and see if I can pop it back while wincing as quietly as possible.  No one wants to hear that!  I simply say, “Oh yeah, fine. I just need to use the restroom” and hobble my way to the ladies room, do what I have to do, take some pain medication and semi-hobble back.  Good as new!  Well, good as I can be!

Why don’t I tell the people I am with that my hip is acting up?  Shame, basically it boils down to embarrassment.  There will either be questions or odd looks followed with a smile and shaking of the head up and down.  Neither are pleasant for me and it is just easier to say I have to use the restroom.  I am guilty of this all the time.  I didn’t say I didn’t do it, I said it is the REAL problem those of us with chronic illness face, and we do it to ourselves.

So, what are we supposed to do?  Hell, I don’t know…if I had the answer to that, I’d probably be the next Noble Peace Prize winner, okay maybe not.  What I do know is that compassion never hurt anybody!

Compassion and understanding…for everyone, not just for us Spoonies, I mean why not?  Try using it on everyone, but especially those of us with chronic illness, don’t forget about us!  We fight against ourselves and our own bodies every day.  A Spoonie coming across someone with a little compassion and understanding is like coming across an angel on earth!  It truly is!  Don’t believe me, try it on one of us.  That compassionate act just might brighten someone’s entire week!

As much as I’ve tried to explain, I don’t have any expectation or judgment of anyone who doesn’t understand what it is like to live with chronic illness and chronic pain on a daily basis.  I simply ask for a little compassion and understanding when you see us out and about, that’s all.  Especially give your compassion and understanding to a Spoonie if they’re a loved one.  I know it’s difficult, we can be pains-in-the-asses (it’s the pain talking – pun intended).  Just know that there is more to us than what you see and we hide our pain for many reasons, but ultimately to avoid guilt and shame or to protect our pride.

I know that my existence is quite different from that of someone who is not chronically ill, so if you have any questions, feel free to contact me.  I will be more than happy to share all I can.  I think those of us with chronic illness and pain need to be more open and honest with those who are not.  It would also be nice if the favor was returned!  We are not as fragile as some think we are.  There are a lot who would crumble under the pain we carry daily, that takes a lot of strength!

Lastly, to the people who think that I don’t look or act “sick enough,” I have no apologies for you. I’m doing my absolute best I can in this life – you should too.

 

 

Dancing Through The Storm

So we meet again!  It’s been way too long since I’ve posted.  I am sure all of my fellow spoonies know all too well, there are many things that keep us from doing the things we love…so there’s no sense going into all of it.  However, I will update you a little on what has been going on with me lately.

Last month I had to go for an MRI because my lower back pain has been worse than the normal smattering of pain here and there.  It is painful all the time now.  So during this month’s visit at my pain specialist, I was informed that the MRI did in fact show another herniated disc that is pushing against my spinal cord, but also that a “mass” that was found in my uterus.

I was then sent to an OBGYN where they did a pap test and vaginal exam.  They also scheduled me for an ultrasound next week and then a consult to go over all the findings the same day.  It was a little nerve racking sitting in his office hearing words like cervical cancer or uterine cancer.  Honestly, I just heard cancer.  So, now we just wait and see what comes back next Wednesday.  I’m hoping to hear the word fibroid or benign.

In between the MRI results and my OBGYN visit, my boyfriend collapsed at a Christmas open house and had to go to the hospital by ambulance.  After spending two days in the hospital running tests and monitoring his vitals, they don’t know what caused him to pass out.  They did find bleeding within the subarachnoid space, which is the area between the brain and the tissues that cover the brain.  They don’t know if the hemorrhage caused him to collapse, like a small aneurism, or the bleeding happened due to injuring his head when he passed out.

See, when he passed out the first time, he came to and decided he was fine and stood up.  He should have listened to all of us there and stayed on the floor because he immediately passed out again and hit his head, again.  I really can’t fault him for standing up though because he doesn’t remember a thing until he “woke up” in the ambulance.  His entire first day in the hospital is still a little fuzzy to him.

He’s now home and is off work for a week and can’t drive for a month.  They have him on a heart monitor to make sure he isn’t having cardiac arrhythmia or any other anomalies.  He’ll also have to have another CT scan in the next week or so to ensure that the bleed in his brain is healing up on it’s own.

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So…that has just been the month!  The previous nine months have been fairly similar, just not as overwhelming…thank goodness!  I honestly cannot fathom how someone posts regularly when they are battling a chronic illness and have a family.  For me, it’s just a lot with two grown kids, two kids in college (one four hours away and one still at home) and homeschooling my 17 year old.  We have also sort of started a small reptile zoo in our home, not to mention our two dogs.  I’ll have to post about that soon!  Honestly, there are times I am lucky to get a shower regularly, see Shower Confessions.

Right now we are trying to get through Christmas and even a healthy person can have challenges doing this!  I am just praying for it to be over quite frankly.  We don’t even have the tree up yet.  Hopefully we’ll have it up this weekend.  My step-son and I are going to pick her up my daughter at IU today, so I’m sure she’ll want to help doing that.

I will have to be more diligent in keeping up with my blog this year…guess that’s my New Year’s Resolution!

Happy Holidays everyone!

 

Shower confessions…

There are some things that you may not know about someone living with chronic illness.  The reason it’s not talked about is because a lot of these things we consider humiliating or embarrassing.  I’m sharing just one of them with you today.

We don’t shower every day!  What!?  That’s crazy right?  A shower is supposed to make you feel better, isn’t it?

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Well, before I got sick, I actually thought the idea of not taking a shower every day was disgusting.  Yeah, I still think it’s not cool and somewhat disgusting but something as simple as taking a shower is a task that now takes all the strength and energy I can muster.

Sound like maybe I’m exaggerating?  I mean, how can something that usually makes most people feel better actually be so difficult and dreaded?  I know exactly what you mean, but I am not exaggerating or being dramatic.  I used to LOVE showers!  It was my favorite time of the day, well besides sleep.  It was “me” time…my haven.  It energized me and gave me optimism to face the day.  Hell, there were times I would take a shower at night too…just to wash the stress and worries of the day down the drain.

Now, I have to build up the courage to step foot in the shower because the first five minutes is the like it is for everyone else…COLD!!  Only now, it’s not just “uncomfortable”, it’s painful too!  No one likes being cold, it’s annoying.  But when you’re like me, being cold is now painful.  I could write another paragraph about this, but trust me, it hurts!  Just getting naked before getting in the shower has me covered in painful goose bumps.

I then have to brace myself and face the shock of the water hitting my skin.  Each initial drop feels like being stung by a bee.  After a few minutes, it diminishes to being poked with a thumb tack, so I begin washing my hair.  This alone is exhausting, reaching above my head, scrubbing and rinsing and I haven’t even gotten to the conditioner yet.  Some days I skip the conditioner just to be that much closer to being done.  That’s what leave-in conditioner is for right?

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Now I have to actually wash my body.  At this point, I need to sit down on my shower chair because not only is my balance that of a 1-year-old trying to learn to walk but I would not be able to stand the entire time it takes me to shower.  Trust me, I’ve fallen too many times!  So, lather up the washcloth…reaching again and bending, trying to twist to reach my sides.  All while still being poked with those annoying and sometimes painful thumbtacks, I mean drops of water.

By this time, I’ve convinced myself that I might as well endure this torture a little while longer to shave my legs, that is, if it’s a particularly good day…otherwise it’s rinse and get the hell outta there!  If I managed to shave my legs, I feel like I just completed a particularly difficult Zumba work out….but I am not in the clear yet!

Now I have to get out and face the painful goose bumps again *sigh* and just when I managed to warm up a little after that intense work out.  Most of the time I reach outside the shower and grab the towel leaving the curtain closed so it’s not so cold, but this doesn’t work all the time.  I dry off as quick as I can while sitting in the shower chair.

Then if I’m feeling brave, I put on some lotion and get dressed.  After all of that, there is no energy left to blow dry my hair or style it and forget make-up!  I’m lucky to put socks on and it’s back to the couch to recover.  So now maybe you understand that a nice hot shower isn’t necessarily going to make us feel better.  It can actually sometimes make us hurt even more!

Meditation – Can it really help??

Research has shown that up to 30% of Fibromyalgia patients can experience psychological distress, including anxiety and/or depression.  I actually think that number is a little low.  Based on this research, it is believed that our emotional reactions could be due to the way fibromyalgia affects neurotransmitters and the stress response system. This system is made up of the adrenals, hypothalamus, pituitary and thyroid glands.  In people with Fibromyalgia, the system breaks down and is unable to regulate itself.  But wait!  Everyone has stress right?  Yes, but because of Fibromyalgia, our stress response system may be unable to respond like in a healthy person, making us overwhelmed by even minor stressors.  This is why my boyfriend says I “overreact”.  Yes, I do…but not because I am doing it intentionally or trying to be a bitch.  Not only is the disease causing unnecessary stress in our lives but our stress response system is in overload!  Again, our own body is working against us.

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As depressing as all this may seem, there is light at the end of the tunnel!
Stress is unavoidable in our modern lives.  Google or Bing (the search engine I use) stress and it comes back with 99,300,000 results!  That’s more than Justin Bieber gets at 78,000,000 results!  When you think of all the stress in our lives, those of us with Fibromyalgia, it is literally 10 fold!  The light at the end of the tunnel you ask?  Oh yes!

The good news is that most of the stress in our lives, we bring on ourselves.  How is this good news?  Because it’s something we can control.  Remember the serenity prayer?  No matter your beliefs, it holds meaning.  Accept the things you cannot change, the courage to change the things I can and the wisdom to know the difference.  So, we can’t change having Fibromyalgia but we can change how it affects us, mentally.  This seems like a contradiction to the above mentioned research, but it isn’t.  Yes, Fibromyalgia doesn’t allow our stress response system to regulate the stress in our lives.  That doesn’t mean that we can consciously take over and learn to deal with it ourselves.  Is it easy, NO!  But like my mama always said, “Life isn’t always easy”.  Obviously I still have work to do when it comes to dealing with stress as proved by yesterday’s rant.  But even the rant itself is a way to release that stress I tend to bottle up and push down as not to upset the people in my life.  I work really hard at hiding my pain or frustration and stress.  I defeat myself when doing this, I know this…it always comes back to get me, usually in the form of a flare up and a mental meltdown.

I have been trying to find ways to unwind and relax and I keep coming back to meditation.  Again, if you Google this, there is a huge number of hits…about a third of those hits are videos showing you how to meditate.  38,000,000 hits can’t be wrong!  If you’re anything like me, relaxing is a foreign concept.  John (my boyfriend) actually jokes with me that I don’t know how to relax and he’s right…I can’t relax!  But this won’t stop my from trying!  I’ll admit, the idea of meditation seemed kooky to me at first and of course, in my mind, if I can’t do it “perfectly” then why do it at all.  I know a lot of you out there are just happy to take a shower in peace!  But it really isn’t something that takes a lot of time.  The consensus on the time you should spend meditating a day is between 20-30 minutes a day, working up to 30 minutes twice a day.  I know that seems like a lot of time and finding a time when things are quiet for 10 minutes seems impossible.  Stop and think though, is an hour out of your day worth the benefits?  Is it worth asking your family for 30 minutes of quiet time?  Yes!!  It is!

I have included some links for you to start your meditation journey below.  Of all the things we try to feel better, I think this is by far the most important thing you can do for yourself…even more important than trying to exercise!  😉

http://dailyheal.com/tag/meditation-for-beginners/   –  Daily Heal, Meditation for Beginners

http://altmd.com/Articles/Meditation-for-Chronic-Pain   –  AltMD, Meditation for Chronic Pain

http://www.health.com/health/condition-article/0,,20189590,00.html   –  Health.com, How Meditation Releases and Relieves Pain

http://www.youtube.com/watch?v=_If4a-gHg_I   –  This link is a video that is somewhat lengthy but definitely worth a watch!

I hope you read the above articles and watch the video as well.  Please let me know what you think by leaving a comment!  I always read all comments and appreciate the input.  If you’d like to e-mail me, my address is tinamariemiller@outlook.com