Let's Talk About Spoons

This post should be fun! I hope... I'm hoping I can translate the Spoon Theory well but I will include a link to the actual resource at the end of this, in hopes of her explaining it better than I ever could. I'll still talk about it in here a bit as well as just discuss a bit about how my day went while using this Spoon Theory.

Of course by now I'm sure you're going: "....Spoons? Why the heck are we talking about spoons? And there's a theory about them?" Yes, actually, there is! But not about literal spoons. I quite love this metaphor as it's a brilliant way to help others understand how chronic illness affects those who have it. 

So, what are these metaphorical, glorious spoons?

You know how in the morning you wake up and you feel amazing? And how you feel like this is going to be a great day and you could literally climb Mt. Everest? You slept very well, and feel absolutely refreshed! Nothing is going to stand in your way today! Then some days, you wake up knowing you didn't sleep very well the night before, and you're just feeling a bit down on your energy... And you feel as though that day is going to not be as great as the others because of this?

Well, when talking about the Spoon Theory, we like to refer to that energy as your allotted Spoons of the day. In layman's terms: Energy = Spoons. 

This term was coined by Christine Miserandino, an author on a site called "But You Don't Look Sick".

It's a very good term and a very good metaphor for what this is (or would you call it an analogy? Jeeze, my English skills are off tonight).

Spoons literally means energy, as stated above, and she happened upon this way of explaining chronic illness to a friend of hers while out to lunch. I won't get into depth too much about her personal story, I will include her link at the bottom of this post as I said before, but its important to note why this came up.

Many people don't understand what being chronically ill means. As shown in the title of that website, an excuse many people use is that we don't look sick. It's true, because a lot of times what's going on is happening internally, out of reach of others' eyes. However, the one who is experiencing the illness itself is well aware. This is called Invisible Illness, because it's something that you cannot see with your eyes.
There will be days, of course, that you really do look as sick as you feel but for myself personally, it's only because I let others see by choice (or because I really just didn't have the energy that day to take care of myself properly).

It's very hard for some people to understand this, and my father is actually a prime example. He's in the belief (even though he claims he's not) that if you can't see it, it's not really there. His words and his actions make this quite easy to see that he feels this way.

The idea of using Spoons to represent energy was formed to explain this situation to others of this mind set, or just to those in general who might not understand.

Now to get back on track!

So, Christine was at lunch with her friend, and her friend asked her what it was like to be sick in the way that she was. She tried the usual ways of explaining it, and she just didn't seem to get it. Having gone through this myself, I can understand her frustration and her need to resort to simpler measures. 

In a moment of brilliance, she started to gather up Spoons and used this as a tangible way of explaining to her friend what it's like to deal with this kind of illness. She gave her friend a certain amount of spoons, and then told her to go through her daily routine. However, each thing she did cost a spoon (energy). 

This was to symbolize how those with chronic illness only have a certain amount of energy to use in a day, due to the symptoms we deal with. For myself with POTS, I get very tired and very worn out easily and have to pick and choose my battles for each day as do many others with chronic illness. Some get immense pain, some fatigue... It's merely to symbolize how long in a day you can go before you can't go anymore.

So by the end of her morning, her friend had already lost all of her spoons, which really helped to show how difficult this kind of condition is for those suffering from it. 

Here's an Example

To help explain this a bit more, I'll take you through my day today. 

I woke up this morning, with less spoons (energy) than normal. I had a bad night last night, and I couldn't sleep very well. I ended up with about 6 hours of sleep, which is hard for me when I get so tired easily. 

I knew that I had to baby sit today and that I'd need most of my spoons for that, but I was very tired and was worried I wouldn't have enough regardless of what I did today.

I would say for today, I had about 15 spoons compared to my usual 25.

I got myself out of bed, which cost me one spoon, and then went to brush my teeth which cost me another spoon. After this, I took myself down the stairs (which for me, costs another spoon) to get breakfast. Thankfully, breakfast wasn't very hard, so it didn't really tire me out at all so I won't say it cost me a spoon. I just popped it into the microwave then headed back up the stairs, which in turn did make me lose another spoon.

So, with just one morning, I'd already spent 5 of my 15 spoons for the day and only had 10 spoons left for the rest of the day. 

Eating, however, seemed to replace one of my spoons, granting me 11 instead of 10. 

Making sense? 

EVERYTHING YOU DO costs you a spoon (energy). And those with chronic illness usually have less spoons (energy) than those who are very healthy.

Hopefully this made sense, and will help you understand it! I aimed this more towards those who don't understand chronic illness rather than those who do. However, if you suffer from a chronic illness and have never heard of this theory, it's a good thing to read because it's so true! 

That's it for tonight, and tomorrow we'll pick up on the actual day to day happenings of being a Spoonie (this is what a lot of us have started referring to those chronically ill as and I LOVE it).

So good night unto you all, let's make amends if we be friends, and Robin shall restore amends! 

(hahaha, gotta love Shakespeare).

Well wishes!

- Rosie

(Resources: The Spoon Theory )

It's About Time! - My Journey Pt. 6

This SHOULD be the last post about this, and then we'll get going on my day to day ramblings. I'm exhausted right now, so I'm not sure this will be a great post. I went to the gym today after getting a small tattoo (which wore me out in itself due to the nerves over it. I've gotten three and I still freak). I did thirty minutes of cardio and then another thirty of weight training. Needless to say, it was an exhausting day. So let's get on with the show, yes?

April 30th, 2014

The time between my psych appointment and waiting for the appointment that would finally help me was TORTURE. I was so impatient and thankfully it was far enough away that I eventually forgot about it. Well, the week before my appointment, my body decided it was a wonderful time to get MONO. I was freaking out at this point, that I'd be too sick to go to that appointment. I ended up in urgent care on Sunday, the weekend before my week of dealing with Mono. Due to my POTS, I was terribly dehydrated and had to get an IV for fluids. I felt a lot better afterwards but my throat was still sore. I ended up back in Urgent Care that Wednesday, finally getting diagnosed with Mono. This made my POTS symptoms flare up terribly, and I have never felt sicker. I was bedridden the entire week and sore near my spleen as well as my liver. This was just a mild case of mono with POTS, so I really don't want to know what a severe case would have been.

I asked the doctor if I could still do my appointment on the 30th and I made it quite clear how important this was. She said I could as long as I felt up to it. I made it my personal goal to make sure that I would be at that appointment. And I did! I was still really sick, had a fever going in but I was feeling a bit better... In terms of sickness, that is.

By this point, my nerves had started to spaz again, making me think that this appointment would be an utter failure just as the others were. Especially because Mono was making my POTS act weirdly. A few days before that weekend, my heart rate had been almost at 200 BPM near constantly, then randomly that weekend it started acting NORMAL. I was worried we'd go in and they wouldn't see anything.

We get to the appointment at the hospital and I had to fill out the questionnaire about previous health as well as heart conditions in our family. They took me back to do an EKG and shortly after it, we found out that my heart was already displaying my symptoms. My EKG had registered as "Sinus Tachycardia, but otherwise normal". I got a little excited at this point, but did my best to keep my cool. I didn't want to think anything of it until we saw the actual doctor.

We headed back into the room now, and the nurse came in to do the medication, allergies, etc. questioning then we moved onto testing my BP and heart rate while sitting and standing. We didn't even do it at the desk as per usual, we just went straight to testing the complaint of POTS. This pleased me thoroughly, but I was once again concerned that nothing would show up.

I WAS WORRIED FOR NOTHING, LET ME TELL YOU!

Resting heart rate while laying down. due to being sick, was at 102. The MOMENT I stood up, it jumped all the way to 132. The nurse said this was definitely indication of POTS but she was a nurse, she couldn't really see anything. By now, my mom and I were grinning excitedly but I still wouldn't let myself get hooked on this finally being the day I got answers.

The nurse practitioner came in and started going through a lengthy interview process with me. She told me afterwards, that some of my symptoms coincided with POTS but I knew all of them did. I wasn't going to say anything to her, of course, because doctors and nurses don't like when the patient acts like they know more (when honestly, I did know more than she did and it was obvious). She said the doctor might want to do a tilt table test but they'd for sure be doing an echo cardiogram.

The doctor finally came in and he thought I said something about my symptoms that I did not, which led him to think I had something called Vasovagel. I'm not sure still what this is, but we looked into it and it was NOT me. He wanted to do a tilt table test to check for this but said that treatment for POTS and this condition were pretty much the same. He said I had POTS, there was no question because we'd had three different instances of it showing up and that was enough to diagnose it. He said we could do the tilt table to check for the Vasovagel but that was all we'd need it for. Seeing as how I didn't have those symptoms for that, even though POTS and this condition fall hand in hand, we decided tilt table was unnecessary.

So we'd gotten me medication and salt tablets, which the medication sucked. We can get into that in another post, and we also got the letter in the mail today explaining the situation. I had called later the day of the appointment because they didn't put this diagnosis down for me which was upsetting after the months we'd gone through to get it... And we finally got the letter they'd told us we'd get today, but it said something along the lines of "your symptoms do coincide with POTS and you do have two instances to back this up, but we did not do the tilt table to confirm this diagnosis". So they still didn't give a definite answer, but sent information about POTS to us to learn more about it. Which I don't really need, I know a lot already. It was just aggravating that they still didn't give it as a definite diagnosis, even though the doctor said I had it.

Either way, I have it ON PAPER now that I have POTS (even if it's not saying it word for word), and that's all I care about. My nightmare had FINALLY ended and I was happy. Well, I AM happy. Pretty dang happy if I do say so myself, but now comes the harder part... Learning to deal with a chronic illness and the trouble it will bring into my life.

So that's my story! That was my awful, awful journey through diagnosing but even though it was sucky, I really can't complain. This is amazing to get diagnosed so quickly. Usually it takes at least a year or so before someone gets answers. It's taken even a decade to get answers for others too.

Until next time, readers, and I wish you well!

- Rosie

You Don't Know What You're Talking About - My Journey Pt. 5

I know these posts are lame and somewhat boring. I'm trying my hardest to make them somewhat entertaining, but really, this is some not so fun stuff to read but it must be shared to help you understand where I'm coming from! That, and I really feel like others who have gone through this will benefit knowing that others have suffered as well. I know I do, when I see others talking about their issues with this condition or others that are similar that leave the doctors clueless. That and if you're like me, I get a kick about reading about others issues. I don't enjoy their misery, I'm just intrigued in reading other people's accounts of their health journey.

Sometime In March

My birthday had come and gone, I was thankfully able to spend some time with friends at a hotel over night then do some shopping. It was a bit too much for me to do, but it was fun none-the-less.

After that weekend, though, reality came back and hit me hard. I was at a loss and had to wait until I could see my psychiatrist before anything more could continue on. I was low. Very, very low with morale and just my over all way of thinking and feeling. I felt like it was hopeless to continue on with this, and I was starting to believe the doctor. Nothing was wrong, right? The heart rate, the dizziness, the headache and the fatigue was just in my head! And when I was sitting, I'd feel just fine! At the time, of course, I didn't recognize the correlation between standing and sitting just yet.

The time finally came, however, to see my psychiatrist and I couldn't be more nervous. I was a ball of nerves. You could probably bounce me up and down like a bouncy ball due to how tense I was.

I honestly don't remember too much now about that appointment, but what really stands out is when my psychiatrist brought up POTS. He asked me if my symptoms got better laying down and if it happened when I stood up. I said yes, I hadn't thought of that, but it did feel better. So he tested my vitals within the office and it showed the POTS.

This set me off on a huge researching endeavor. I learned so much and the more I read, the more I realized this was ME. I was hell bent on making sure my doctor diagnosed me with this, because at this point I didn't know what else it could be. I called my doctor later and told her nurse what we thought it was and rather than talk back directly to me, they merely transferred me over to a cardiologist.

Now, I would separate this into another post, but I've already managed to get myself riled up about this appointment that I really need to get typing on it in here.

March 20th, 2014

This was the day of the cardiologist appointment. I was excited and I knew that I'd finally get answers. Or so I thought. We went in, my mom insisting to come along to this appointment. She was now thinking something was going on despite not believing me before. She was paying for the appointments, as was my dad, but I was pretty sure they were only doing it to prove me wrong, that nothing WAS wrong. This is something they do often, whether they realize it or not. They don't ever believe me when I say something's wrong due to making up stories as a child. They fail to see that I am now a young woman, no longer a teenager/child wanting to get out of class.

We do an EKG in the office, it was normal and the doctor comes in. Instead of testing the theory of my heart rate changing from sitting to standing, he starts to tell me about his own 'professional opinion' without doing any further testing or any kind of searching for what could be going on.

The conversation more or less went like this:

Well, unfortunately when we reach this point and everything comes back to normal, there isn't anything we can really do. You're healthy on paper, but yet we have the heart rate raising. It is more than likely Sinus Tachycardia, which changes during breathing in and out. All you can really do is exercise more and drink a lot. There isn't a need to check into this a bit more. I don't think it's POTS, we would have found that in the Holter Monitor testing. 

Well as you can imagine, I was BEYOND pissed and by this point, I wasn't taking no for an answer anymore especially now that my mom was starting to side with the doctor rather than her daughter. I KNEW something was going on but no one would listen. I had HAD it. I kept pushing and pushing, insisting it was not with my breathing and that it ONLY happened when I stood up/sat up rather than lay down. Finally he said he'd have the nurse come back in and check my vitals laying, sitting and standing. Why he didn't do this in the first place, knowing the complaint was BEYOND me. As I said before, I'm not happy with this doctor's office in the slightest bit.

The nurse came in, and low and behold, my heart rate jumped up to 124 after I stood up. I don't remember what the resting heart rate was before that, but your heart rate shouldn't jump that high after standing.

The doctor came back in now, totally whistling a new tune. He admitted now that this was enough to diagnose POTS, but he still didn't do it. He decided we'd check my Cortisol by doing an Cortisol AM test to see if it was too high. He then suggested we go see an endocrinologist, thinking this might be hormone related due to the fact that I'd had pancreatitis so young and my lymph nodes were so swollen. Immediately, my mom and I didn't agree with this idea. We'd already tested all of my hormones, why did we need to go see an endocrinologist?

He also prescribed taking salt tablets to see if it would help.

So we're driving to the pharmacy to pick up the tablets, when we get a phone call from the doctor. He told us not to get them as he didn't feel we had enough evidence of anything being wrong to give me this. He didn't feel comfortable with it and he admitted he didn't know how to handle this as he didn't know what was going on.

On top of that, he was refusing to give me a doctor's note for my job, due to the fact that there wasn't enough wrong with me to keep me out of work when I wasn't able to work either.

Once again, we were back at square one and I was about to lose it. I called my psychiatrist and asked him for help, if he knew of anyone that could POSSIBLY help me with POTS. And then he told me the information that would be my saving grace. He told me about this clinic, that specialized with fainting and the heart, and that they might know how to help me. Something about this just told me we were finally on the right track, but I wasn't about to let my hopes climb sky high just yet.

So there you have it! Things were finally starting to look up after months of issues, and my job was AMAZING through out this, which I've failed to mention. They were very supportive.

We'll pick up again tomorrow, so I bid you adieu and wish you well!

- Rosie

I LIVE - My Journey Pt.4

Well, that was an unexpected two days off. I had meant to come on again last night and finally get on with this story of my diagnosis, but... It wasn't happening. I went to work out for 25 minutes and ended up talking with my friend for awhile longer due to some unfortunate situations going on in her life at the moment. Then after that, I just crashed due to rearranging my furniture due to a spider being found in my bed. You know, the logical thing to do after something like that transpires. I hate spiders, okay? Don't judge me!

Around February 6th, 2013

So, I was wrong in the last post about all of this. Things didn't really start to get too bad until AFTER this appointment itself.

I went back to the doctor, and we realized nothing was wrong with my heart itself. Having tested everything else, we needed to start looking at other things (and we never did an MRI, which to this day still bothers me. I have POTS, yes, but due to my anxiety I worry it's worse than that and I'm still not pleased she never did anything to look at my brain, because at the time, I was presenting symptoms of something much worse. If you cannot tell, I was not and am not pleased with how this situation was handled).

ANYWAYS!

We decided to check the function of my adrenal glands, as she thought I might have an adrenaline problem due to the heart rate and my body being sweaty randomly when I'm the type of person who never gets BO. So I had to do this lovely test that checked all of my hormones. It was a 24 hour urine sample test. Basically, you had this lovely little pee-catcher that you put over the toilet seat and did your business in that, then you had to pour it into a jug. My family laughed about it the entire time and referred to it as 'my pee jug'. It was somewhat embarrassing, but I got over it pretty fast by telling myself this would give me some answers. (Hahahaha. YEAH RIGHT)

I took it in the next morning, to ensure it got sent off right away, and we had to wait a few more days before it could come back due to it being out of our regular office. We also just found out recently, that our insurance doesn't really cover this and our doctor didn't inform us of this nor did they handle the situation well at all, so we have to pay 600+ dollars out of pocket now, due to their negligence. If this wasn't the only place our insurance covered, I guarantee you I'd be out of there faster than a kid running to their presents Christmas morning.

A few days later, when everything went to Hell

We got the results back, and everything was NORMAL. I could have told them that, because I had a feeling this was something strange within itself. I knew it wasn't related to hormones or anything of the sort. Well, I had been having some breast pain that day and because I didn't know if it could possibly be related to this issue or not, I sent the doctor a message about this. Because of this situation, she assumed I was paranoid and then remembered that I do see a psychiatrist for mental health... And decided to tell me that, after two tests, this was nothing and it was ALL anxiety related. I had NEVER been so angry or upset in my entire life. I saw that message and I broke down crying my eyes out.

I've dealt with anxiety for my entire life. I am twenty years old now, I know my body and I know how anxiety effects me. This came out of nowhere, I wasn't having any kind of stress. I wasn't in school, I loved my job, and that was it! Granted, my dad is a stressor in my life, but I've always dealt with him. That doesn't mean that I was even more stressed than usual and if I were, I'd have known. So she told me to go get psych evaluated and for those of you who suffer from mental health, you will know that this happens ALL THE TIME. My psychiatrist even agreed that it does.

So, I knew now that I would not be getting any kind of help unless I got cleared by a psych professional and because of this, I really started to doubt that something was wrong with me. I started to believe her, that it was all in my head and that I was just a big mess of mental health issues.

I set up an appointment with my psychiatrist and explained the situation, he wanted to see me as soon as possible, but soon as possible wasn't until early March, near my birthday.

I was down, and by this point, my depression was starting to spiral down as well. I wasn't happy or able to handle anything going on in my life. I put on a smile for everyone else but on the inside I was feeling incredibly discouraged.

I hate to leave this on such a sour note, but as per usual, this post has gotten away from me again. I will try to make another post tomorrow. I'm going to the gym again, and have some things to do, so I might end up too tired to do much of anything but if not, you can bet there'll be another post here.

May the Fourth be with you and I hope all is well!

- Rosie