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.

im-fine-meme

 

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.

 

 

Advertisements

Apologies, Excuses and Ramblings

So I am sitting here once again in front of my laptop with my coffee (also with my phone opened to Pokémon Go, only level 3 currently) beating myself up for not posting more regularly.  I know as a semi-well-rounded woman in her 40’s that I have every right to be pissed off at myself.  That is what makes it worse.  You know when you brow beat yourself knowing that you had way too high of expectations to begin with, that you shouldn’t be mad at yourself, but yet you’re kicking your own ass anyway?  Yeah, well this isn’t one of those times.

Then of course comes the excuses…I need quiet to be able to focus on writing (no, I really do)!  Quiet in my house is a joke!  Even if I’m home alone, my little darling Shih Tzu thinks that it his sole purpose in life to bark at anything that moves!  Then you have the flares…I have had so many flares lately, I should be fucking glowing bright red and sat along side the road!  I used to love summer but now I just dread it.  I live for spring and fall…those are the only two seasons that somewhat give me a break.  Sometimes winter if I don’t venture outside for weeks at a time – which I have done!

Bella & Bear

Going back to my Shih Tzu for a minute, he thinks he is this big furious bear (which he is appropriately named Bear) but the minute you light off a firework, you’d think he was going to have a heart attack!  He shivers and pants and won’t leave my side or my lap for anything!  If I do have to leave the house, I have to have one of the kids watch him so he doesn’t die while I’m gone.  He also freaks out if you have a certain ringtone or clip your nails or run the vacuum, but fireworks are really the only thing that makes him shake and pant.  So for the week leading up to the 4th of July and the week after, I am pretty busy holding a Shih Tzu like a baby – forget about writing!

We also have Bella our bulldog, but nothing gets to her except getting a bath.  She really doesn’t enjoy those at all!  And food, if there is food around, she will whine until you give her some.  It’s quite comical actually, that is until she’s been doing it for a half an hour.  She’s quite persistent!  Here’s a little video of her doing just that… Bella Being A Big Baby

Then of course, we have the kids who are always coming and going.  Between the two of us, John and I have 5 kids – all from previous relationships/marriages.  We are one boy shy of a Brady Bunch!  He has a daughter who is 24 and a son who is 19.  I have two daughters, 22 and 19 and a son who is 17.  The three youngest live at home with us full-time, so we have two 19-year-olds and a 17-year-old coming and going every day.  That’s enough to make your head spin, but I love it – most of the time!

TOP LEFT: Connor & Cameron (John & my sons)  MIDDLE LEFT: Courtney & Cameron (My youngest daughter & son)  BOTTOM LEFT: Becky & Courtney (My oldest & youngest daughter)  TOP RIGHT: Austin & Samantha (John’s son & her boyfriend)  BOTTOM RIGHT: Becky & Zack (My oldest daughter & her boyfriend)

So as you can see, even though I can’t work anymore…there is hardly a dull moment around here.  This isn’t even including the reptile collection that we have that require attention daily.  Yep, we have snakes and reptiles too!  I’ll have to post about them another time.  I am getting a bit drained from trying to get this out today – because I promised myself I would!  So, hopefully you can all forgive me and continue to hang out and look for more random posts from me.  Don’t forget to subscribe, follow, stalk me online, whatever you have to do – so when I kick myself in the butt again, you don’t miss it!

 

I’m Going To Post Regularly…My Second Biggest Lie

Well it’s only been five months since my last post, not nine months like the time before that.  Hell, you would’ve thought I went on Maternity Leave or something!  Hopefully this decrease in time becomes a trend and the gap in between my posts continue to decrease. One can only hope, well hope and actually work toward this goal!

I can’t believe I left you guys on such a cliffhanger in my last post though… How horrible of me!  But instead of dwelling on that, Let’s Recap, where did I leave off in my world of limited spoons?  Oh yes, my MRI/uterine mass and John’s accident at the Christmas party!

First on the list…

While having an MRI done on my lumbar spine they discovered a “mass” on my uterus.  I was then promptly sent for a pap and vaginal exam and after that scheduled for an ultrasound/consult because they suspected uterine/cervical cancer.  After experiencing a cervical biopsy without any anesthesia at all (which I don’t recommend by the way), it turns out I don’t have uterine or cervical cancer, thank goodness!

They did however do an endometrial ablation because the lining of my uterus was abnormally thick.  This procedure aims to destroy the lining by using scalding hot water to burn the lining of your uterus and at the very least, makes it very thin if it’s abnormally thick like mine, sounds fun right?  Not really, but it isn’t as horrible as it sounds.  I was very grateful that I was under general anesthesia for this procedure however!

A few days of horrific cramping at home after and that is about it for recovery.  You do have to deal with the aftermath of attempting to destroy the lining of your uterus however, and it is not pretty!  Weeks, yes…I said weeks of a period-like state (I can’t really describe it here and you really wouldn’t want me to) and then you pray to whatever higher power you believe in that you don’t have to deal with Aunt Flow ever again.  Well, my higher power must think that I suck because I still get a friendly visit from my Aunt but she doesn’t stay as long and isn’t nearly so obnoxious anymore.  So maybe I only suck a little bit.

Next on the list…

John, my boyfriend, had collapsed at a Christmas party with no warning.  He had been drinking but was not heavily intoxicated. We were actually getting ready to call an Uber when he collapsed.  He actually collapsed twice.  As most men, it was because he was stubborn.  The first time he collapsed, he regained consciousness pretty quickly and wanted to stand up.  We all advised against it, but here’s where the stubbornness kicked in and he stood up anyway.  You guessed it, he went right back down, like a sack of potatoes actually.

Anyway, he ended up with bleeding in the subarachnoid space, which is the area between the brain and tissues that cover the brain, like a small aneurism.  That’s some pretty scary stuff and after two days and countless tests, they didn’t have any answers for us.  They didn’t know if the fall caused the bleeding, by hitting his head twice, which I highly doubt.  He was fine, talking one minute, paused, his eyes rolled in back of his head and down he went!

The good news is that if it was a small aneurism that caused him to lose consciousness and the bleeding, it didn’t leave any residual effects or damage that they could find; and they did 3 CT scans in 2 days.  So we were cautiously sent home with a very long list of instructions.

Since the original incident, he hasn’t had another episode and all the cardiologists and neurologists have released him to his full range of activities including driving.  They even did a series of sleep studies on him at home.  I didn’t know they could do that!  This, I guess is the difference between having insurance and not having insurance.

So yeah, I think that brings everything up to speed from where I left you poor guys hanging a long five months ago!!  Jesus, what is wrong with me!?  And not one of you lovely people left me a nasty message during that time.  Those who did send me a message were concerned about how John was doing and how I was, not one nasty message about why there were no recent posts.  You guys are the best really!  What did I do to deserve such amazing readers?…you’re really the best!

I can promise you I have been working on some new stuff for the blog – and no, it’s not just the boring “what is going on in my life” stuff.  So keep watching and I’m sure to be ranting and raving or singing praises about something soon!!


LATEST NEWS: My youngest daughter that started her first year of college at Indiana University in the fall is now home for the summer! YAY!

 

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.

398191_480845425270974_1486052890_n

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!

 

Borrowing Spoons

I am still learning how to function with this constant companion of mine called chronic pain…always trying to see how much I can do, how far I can push myself, how much I can “get away with” before it knocks me down.  I am still trying to accept this familiar yet relentless and sometimes all-encompassing pain and exhaustion.  I am also trying to simply enjoy my life as best I can.

On the good days, which are few and far between, I can end up doing too much and throw myself into a flare and need to rest.  Rest…I am growing to hate that word, it now has a negative connotation for me and it really doesn’t describe what is going on with my body while I’m in a flare.  I am truly recovering.  Just like someone has to recover from surgery, my body needs time to recover from a flare.

image 329 1

The best way I can begin to describe a flare is, imagine Jillian Michael’s from The Biggest Loser just worked you out 12 hours a day for 7 days straight, during which time you have the worst case of the flu imaginable!  No joke…it can actually be worse than that at times too!  Sometimes when my back pain is flaring up, it feels like someone has reached into the middle of my spine and is trying to rip it straight out of my body.  That may sound like an exaggeration but let me tell you, there is really no other way to describe it.  I would welcome the 32 hours of back labor I had with my daughter during those times!

Unfortunately, I never know exactly when a flare will hit me.  Some triggers are obvious, like doing too much but other things like the weather, stress, an infection or getting the flu can also trigger a flare.  Additionally, I never know how long it will take for me to recover from a flare.  Those are the days/weeks/months where I have to just be patient with myself and “rest”.

f17bc52475eb399273a0cde19b66cd4d

Over the past year, it feels like I am almost in a constant flare.  I do still have some good days here and there but I have also seen a decline in my ability to participate in a lot of activities.  Last year at this time, I could manage going to the grocery store for a few things, if someone went with me.  Now it’s a rare occasion that I am able to walk through the front door of the store, let alone walk through all the aisles.  Once in a while I have a day or two where the pain isn’t so intense and my energy levels don’t resemble that of a 90-year-old woman.  Those are my good days!  The days that I don’t want to waste spoons on things like grocery shopping.  I want to spend time with those who are important to me!

This past weekend, to my surprise, I had a couple good days!  It’s times like these that pushing myself a little beyond my limit, especially on a good day, was worth every spoon I had to borrow!  John had made plans to visit his daughter Samantha and her boyfriend Austin.  She moved to Indianapolis several years ago to go to college, so we don’t get to see her as often as we’d like.  I regrettably had to miss Samantha’s graduation from The Institute of Arts earlier this year due to a nasty flare.  It really is difficult for me to plan things anymore because I never know how I am going feel. (see my post “Unreliable“)  So you can imagine how thrilled I was to be feeling up to going with him this time!

We decided to stay over Saturday night and meet Samantha and Austin for breakfast on Sunday as well.  John travels a lot for work, so we were able to use his Marriott rewards.  I am truly grateful for that because their beds are actually somewhat comfortable and they’ll give you extra feather pillows, a comfy robe, etc.  We even had little chocolates on the bed when we arrived!

The Colts were playing the Bengals on Sunday at Lucas Oil Stadium and we knew the city would be packed.  Because of that, we decided to have dinner in Fort Wayne before heading down to avoid the crowds.  After dinner and a few hours drive, we checked in at the Marriott North around 8 pm and took a cab downtown to meet Samantha and Austin at The Slippery Noodle Inn.  We usually stay downtown but it was a last-minute decision to stay over and all the hotels downtown were full.

slippery-noodle-sign-closeup
The Slippery Noodle – Indiana’s Oldest Bar

The Slippery Noddle Inn is a blues bar and well, blues is my favorite genre!  It is also Indiana’s oldest bar, so that was pretty cool!  After watching the band for a few hours, we made plans to meet up with Samantha and Austin for a late breakfast the next morning and went back to the hotel.  Our little overnight trip couldn’t have been better!  Breakfast Sunday morning was awesome and it was so nice to just sit and visit for a bit.  John and I had a great time!  We seriously needed to get away even if it was just overnight and it was great to see Samantha again and finally get to meet her new boyfriend Austin.

Remember earlier I talked about recovering?  Well, the day after coming home, it felt like my entire body was screaming!  I truly think I could hear my muscles screaming out in pain!  It was bad enough I was reduced to shuffling around with my walker.  I am still feeling the effects of our little trip today, almost a week later, and I knew I was borrowing spoons during our visit but it was spoons well spent!!

Sick Humor

Wow!  Has it really been two months since I posted!?  How time flies when you’re in pain!

Although I may have slacked on writing, you guys definitely haven’t slacked when it comes to reading my blog!  It amazes me that I still have readers!  You guys are so amazing and loyal!  The thing that keeps me writing is all the feedback I get.  It’s so comforting knowing that there are others out there that know exactly what you’re going though.  It’s so difficult dealing with everything that comes with living with a chronic illness or “limited spoons”, no one wants to feel like they’re alone in this.

During my journey with chronic illness and pain, one of THE most important things I think I’ve learned is you have to maintain a sense of humor or you can easily find yourself wallowing in self pity. I like to call it “sick humor”…get it?  Ok, ok…it’s lame but makes me chuckle!

Black-and-Teal-Weeds-or-Wishes-403x403

I do the best I can to see the lighter side of being sick but will admit, there are times I still find myself in a fetal position at the bottom of the pit called “woe is me”.  You can see what I mean by reading some of my past rants, I mean posts, past posts.  Once I am able to let it all out, I get up, wipe away the tears and tell my body to “bring it on”…I am ready to get on with life again!  There are times we just have to get it out, let go of all the frustration and anger and give ourselves a minute to grieve for everything that we’ve lost.  Don’t make the mistake of staying there too long…get it out and get on with it!

As I mentioned earlier, a good sense of humor can be your saving grace!  It’s not always easy but being able to find humor amidst all the pain and frustrating crap we deal with on a daily basis is, in my opinion, truly necessary.  One area I needed a lot of improvement in finding humor, or at least not taking things so seriously, was during doctor’s appointments and medical procedures.  I used to get so upset and frustrated with medical office staff.  They always seem to mess up appointments or there are discrepancies over charges or they simply just don’t give me any information regarding procedures, test results, etc.  I was so bad, John started telling me to “be nice to the doctor and his staff” the mornings of my appointments.  I’m sure I was labeled a “problem patient” in my chart!  Hopefully, now they don’t cringe when I walk in.  I finally decided I needed to look at my appointments differently.  It’s actually as simple as that…shifting how you view things.  I now go into the office thinking how can I make someone smile instead of what’s going to go wrong today?  I also use the “two week rule” if something does go wrong.  It’s simply where I ask myself, am I really going to care about this in two weeks?  If not, is it worth getting upset about now?

Sometimes “brain fog” can offer up moments of humor.  I recently asked others in my chronic pain support group, what are some of your funniest brain fog moments?  For some reason or another, we seem to like misplacing items like keys and phones in the fridge!  On the flip side, we also put things that belong in the fridge in the cupboard at times.  I have put the milk in the cupboard and the cereal in the fridge!  What is that all about?  Instead of getting mad that the milk spoiled or your phone has to “defrost” before you can use it again…just try to see it for what it is, a silly mistake.  The last time I checked, we’re all human and no one is perfect!  Try not take being sick so seriously.  Yes, there are times that we need to be serious, like when considering new treatments, medications, etc. but if you can shift your perspective a little each day and be willing to see the lighter side of it all, you will find you’re sometimes able to enjoy this life you’ve been given.

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.

p345608b

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!