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.

 

 

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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!

 

For Family and Friends, Part 2…Showing Support

In Part 1 of this series for Spoonie Family & Friends, I discussed how easy it is for spoonies to isolate ourselves because of the pain.  I also talked about how easy it is for all affected to fall into the “resentment trap”.  The “homework” for part 1 was to sit down with your spoonie and have an open and honest conversation, you could start out by asking how being sick has affected them emotionally and yes, physically.  Also discuss how the changes have affected you and how you feel about those changes.  Maybe finish up the discussion with possible solutions to the particularly frustrating changes in both of your lives.  If you haven’t already had this conversation, hopefully you are thinking about how and when to have it.

Speaking of homework…let’s start off Part 2 with a little homework shall we?  Your homework for this segment is, I want you to read as much as you can about your spoonie’s illness.  Actually, before you dive into internet articles or buy any books, you’ll want to know all of your spoonie’s diagnosis.  Conditions like MCTD and Fibromyalgia are usually the primary diagnosis, but more often than not, we have other conditions.  In my case, my primary diagnosis is MCTD and Fibromyalgia but I also suffer from Migraines, IBS and have severe Osteoarthritis.  Believe it or not, there are some of my friends and family that think my hip replacement was due to MCTD or Fibromyalgia.  It actually needed replaced due to osteoarthritis.  Most of my family and friends aren’t aware of all my conditions because, quite frankly, they haven’t asked (or haven’t read this blog).  Even after you’ve done your initial research on all of their diagnosis, be sure that you’re staying on top of new and updated information as well!  There are advances made everyday!

There are also a lot of different symptoms that go along with each illness.  Two people can both have Fibromyalgia but experience different symptoms.  Sometimes we aren’t even sure which condition is causing our symptoms and we can develop new symptoms as well!  It is very helpful to have a list of all of our symptoms to take to doctor’s appointments, so maybe you can help your spoonie come up with a list while you’re asking about them.  I know you’ve probably heard complaints about aches and pains, but you probably don’t hear about every symptom.  Asking about all diagnosis and then learning all you can about them including the symptoms that come along with them seems like a pretty simple thing to do, but trust me, this is a HUGE show of support!

While we’re on the subject of showing support…you may feel like you are being supportive when you say things like “you look good today” or “I hope you feel better soon”.  These types of comments are usually made by friends or family that we don’t see too often.  On the surface, these comments appear supportive, but let’s dig a little deeper shall we?  I call these comments “throw away comments” because they’re thrown out there in an attempt to show support. I bet if you were completely honest with yourself, you might feel awkward when confronted with our pain and don’t know what to say.  As the ones on the receiving end of these type of comments, I can tell you, it can make us feel even more frustrated because it’s obvious to us that you don’t really understand our condition.  Chronic illness is just that, chronic.  We aren’t going to “get better” and telling us we “look good” when inside we feel like our bodies are being torn apart doesn’t really make us feel any better either.  So, I guess what I’m trying to say here is that if you think we look good, maybe try asking how we’re feeling first.  If we are feeling particularly bad that day, you could say “Is there something I can do to make your day a little easier or better?” Maybe just ask us if we want to talk about it.  Just being able to tell someone how bad we’re feeling and what is going on with us physically is a comfort to us.  Feeling comfortable and safe talking about what we’re going through with someone who loves us is truly therapeutic!

So now that you know more than the average bear about our illness and you know what you should probably avoid saying…what are some of the more practical ways you can help?  A pretty obvious way you can show support is by helping with things around the house, but don’t go crazy here!  If we’re unable to work due to our chronic illness, chances are we aren’t able to do a lot around the house but we can still do some things.  We can probably dust, do some laundry, wash the dishes or pick up around the house, things that don’t require a lot of bending, reaching, etc.  Things we might need help with are vacuuming, mopping, cleaning the bathroom or maybe help with dinner sometimes.  You get the idea.

We sometimes have issues with “brain fog”, so we also really appreciate it when you help us remember doctor’s appointments or other obligations.  Heck, why not come with us to our doctor’s appointment?  If you ask us later in the day what the doctor said, chances are we will have forgotten something.  We might also have a hard time remembering things we want to ask the doctor.  If you can’t go with us, maybe you could help make a list of things to discuss.  Things like that list of symptoms you helped us with!  If you have questions, write them down and we can discuss them with the doctor as well.

Another area where we sometimes have problems, again usually because of that lovely brain fog, is medications.  It would seem like a no brainer that we should be able to keep our medications straight since we rely on them to function, but it’s not always that simple.  See my post “Simple Mistake = Lost Spoons & Lots of Pain” for a good example of thisIf your chronic illness sufferer is anything like me, they probably take several medications.  Medications can become tricky if you have more than one.  For me, I take one three times a day, another is every four hours and yet another is once a day.  That doesn’t include the ones that I take as needed.  You can see how this can become confusing very quickly!  To help with this, I use a weekly organizer that allows me to remove each days section.  It’s pretty nice not having to take the entire organizer with me if I need to leave the house!  Another bonus is I only have to think about it once a week when I fill it.  The true beauty of it is, each day of the week has dividers for morning, noon, evening and bedtime doses so I never have to wonder if I took a dose.  I just look at my organizer and if the pills are gone, then I already took that dose.

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I saved the best for last!  It’s really a few last things.  First please, please, please don’t stop asking us if we want to go out or do something.  I am sure your spoonie has probably declined your invitation more than a few times and maybe you’re tired of being turned down.  You might even feel slighted because they had to take a rain check one more than once, but yet, you saw them out and about days before or maybe after.  More than likely, it’s a flare up of symptoms and not because they didn’t want to go out or see you.  You also have to consider the amount of energy or “spoons” required for us to do certain things.  It may take days for us to recover from an outing.  Even before an outing, we need to plan and conserve spoons.  We always have to think about what we are doing…if we want to go out on Saturday, we have to ensure we are resting and not overdoing things on the days leading up to Saturday.  So it’s probably a good idea to give us some notice if possible.  That doesn’t guarantee that we’ll be able to go, but it definitely increases the odds!

I actually have a really good example of what I’m talking about.  A few weeks ago was my boyfriend’s daughter’s college graduation.  She lives and goes to school in Indianapolis, about 2 hours away.  Just a few days prior to her graduation, I was doing pretty good…not great but good.  I was able to go to the store (with help) and actually do a few things around the house.  The day before her graduation the pains in my legs started, not just cramps or muscle spasms but PAIN.  Both legs felt like one big charlie horse on steroids making it almost impossible to walk.  On top of that, I was also having some pretty bad dizzy spells, which in combination with my legs, put me in my wheelchair.  The next morning I still wasn’t feeling better and I knew going was out of the question.  Even with my wheelchair, I knew I couldn’t make the trip.  If I have to sit very long at all, usually more than 30 minutes, everything starts to ache and hurt.  This is on a good day!  Going to the graduation included a 2 hour drive there, 2 hours back and at least a few hours of sitting in an auditorium with possibly dinner after.  There’s no way I could endure all that without having to lay down.  I know riding in a car doesn’t seem like it would be “difficult” but having to stop every 30 minutes to get out and move can make a 2 hour drive turn into 3 hours or more pretty easily.  If I try to endure the 2 hours without stopping, I can barely move when I finally do get out of the car.

Now, my example isn’t a far stretch from going out with friends.  First of all, just “getting ready” to go out can mean needing to rest afterward.  Then the drive, sit for a few hours and maybe try to do a little dancing and drive home.  Even without the dancing, that is a whole different story than say, going to the grocery store.  So, if you really want to spend some time with us, maybe have a girls wine, cards or movie night in.  Instead of going out for a date night, order carry out from your favorite restaurant including dessert, light a few candles, make your own drinks and rent a few DVDs.  We really do want to spend time with you, it’s just sometimes our bodies don’t cooperate.

I said there were a few things…adjusting to spend time with us is just one.  This next one is the BIG ONE!  Well, at least for me it is.  I’d bet it probably is for your spoonie as well.  There are times we need to talk about what’s going on with us, especially emotionally.  Of course, there are online support groups but it’s pretty easy to get lost in all the posts.  Talking about the emotional side of our pain with you, someone who truly knows us and cares about us is a great comfort.  Keep in mind that a lot of times when you hear “I’m fine”…it’s because we don’t want to burden you with our pain and yet we really just want someone (you) to tell us you know we’re not okay.  Try being patient and reassuring while we are learning to open up.

We may need to talk about things other than our pain, like things we have had to give up.  I’ll admit, there isn’t a week that goes by that I don’t break down into tears because I’m either overwhelmed by the pain or I’m overwhelmed with sadness, anger and frustration because of all I’ve lost or had to give up.  It’s been almost 3 years since I had to quit my job and let me tell you, acceptance has not come easier with time.  At least for me it hasn’t.  I’m sure you probably think that staying home all day, watching TV or laying in bed would be awesome but it’s not!  When most people have to call in sick, they feel guilty.  It may even hurt the household budget if you have to miss more than a day.  Now imagine that guilt and stress every day.  We have lost our independence…a sense of who we are.  We can no longer contribute monetarily.  We can’t always help around the house like we want to and that takes a toll as well.  Trust me, it’s always there in the back of our minds!  Trying to accept all of this doesn’t happen over night and it definitely isn’t easy.  It truly is an ongoing process but with your understanding, doesn’t have to be a struggle for either of us!