Not Enough Spoons to Even Give a Fork

..and an exhaustion so deep a 9 year nap/coma couldn’t help it.

In my last post I spoke about the fact that I was switched over to the generic version of Cymbalta because my insurance company didn’t want to pay the insane price for the actual name brand version. I was okay with this idea because the co-pay was much lower, and I’ve used generic versions of things in the past without issue. There cannot be that big of a difference between the two, can there? They had to have been approved for sale by the FDA! Well, I was wrong. There is enough of a difference.

I remember my father telling me years ago that the generic version of a medication he was taking at the time didn’t even show up in his blood even though he was taking it daily. When they did his blood work it was nowhere to be found, even though the brand version worked fine and did show up. That should be enough anecdotal evidence to realize there’s a difference.

I started the generic version a month ago this coming Wednesday. I saw my general practitioner doctor (the one who prescribes it to me) on the fourth of July, and got her to write no substitutions on the script so that I can switch back. I didn’t have the money to pick up the actual version (it’s a $60 co-pay every month) so I have to wait a little while, but after what happened to me this past week, I’m going to try my damnedest to get the brand version A.S.A.P. This post will be about my experience on the generic so far.

The first few days on the generic I was experiencing panic attacks. Full on, full body, physical anxiety that I hadn’t experienced in almost two years. Visible trembling, difficulty breathing, fear and paranoia that I otherwise do not experience in the run of a day. My entire body, inside and out, was in a constant state of jittering. Since this was not normal for me anymore, I tried to think about what I had done differently in that past few days that would have caused this onset. I had not considered the fact that my Cymbalta was now generic to be the issue until then. When I picked up the prescription, I had a smaller co-pay and it was in a pill bottle instead of its normal blister packaging and that was the only indication something was different. Luckily, I had one last dose of the name-brand stuff, and I took it the following day in order to see if it was the generic that was the issue. Alas, the following day after taking the name-brand, I was fine. This was my “Ah-ha!” moment. I called up my pharmacist to explain and she told me to see my doctor and have ‘no substitutions’ written on the prescription. I couldn’t get in to see my GP until July 4th, so I tried to wait it out.

By July 4th I discovered a significant increase in my day to day symptoms (the one’s the Cymbalta is supposed to help with and others;) and a significant decrease in my mood. My pain had heightened which made me irritable, hopeless and sad. This was unsatisfactory as anyone could guess, so I told my doctor about that as well as the anxiety experiences I was having (which by then were calming considerably.) She gave me the ‘no-substitution’ script, thankfully. But, I haven’t picked up the brand name yet, as I have mentioned.

The week since then has been the week from hell. I haven’t seen a huge decrease in my mood, but my symptoms are off the charts. The pain hasn’t been this bad in a long, long time. But what has me floored the most is the sheer exhaustion, the brain fog that comes with it and the temperature sensitivity. I mentioned the temperature sensitivity in the last post so I won’t speak about that too much. But the exhaustion is the point of this blog post. As the title indicates, I’m so low on spoons the last week that I cannot give a fork.

People who don’t have chronic illnesses, and even I have been guilty of this in the past, say “oh, I’m so tired” and sure, they’re tired. But they do not and cannot comprehend the difference between it’s been a long day at work tired, and my body physically cannot support me exhaustion. Because there is a difference. A huge difference. Just as there’s a difference between sleepy and tired, there is a difference between tired and exhaustion or fatigue. It’s the difference between I could use a nap and I AM THE WALKING DEAD AND THERE IS NO CURE.

I’ve functioned, yes. Well, sort of. Slightly. With much protest and dismay of my body. I managed to go to my appointment at the hospital for my bladder treatment on Wednesday the 6th and spent time with my friend Chris afterwards, and then Friday I went to the comic book store with Chris before trying to go for a drive with my best friend Ashley, and yesterday I went to the art store to grab a couple things while they were on sale. The problem with those activities is, though I enjoy (and did enjoy) spending time with my friends, I pushed myself over my limit thus making things worse in the long run. The key to chronic illness I hear, and I am slowly implementing myself, is pacing one’s self. I thought I understood that. I did not. I pushed myself to do things when I shouldn’t have. What it was was I didn’t realize I was pushing myself until AFTER I had done so. And I’m paying for it royally, it seems.

Chris and I don’t spend every day together. We get one or two days a week to hang out (I’ll explain more about our relationship in another post, bear with me) because we are both spoonies, and both need time to ‘respoonify’ during the week. I usually hang out with him when I go into town on Wednesdays for my hospital appointments. The previous week he was out of town at his parents so I didn’t get to see him, so I was very much looking forward to spending this previous Wednesday with him. The problem? After walking to his place post-treatment, which really isn’t that far of a walk from the hospital, my body decided to let me know that it was knackered even though it felt fine that morning when I began my adventure. Needless to say, I spent most of our hang-out time sleeping, which is incredibly unfair to him. The sleep just hit me over the head from behind, I had no choice. And what time I wasn’t asleep, I was laying down just trying to remain conscious. I feel awful for that. He says he needed some respooning too, so it was fine, but we could have used our hangout time to watch movies, or play video games or something a little more than sleep. But, I didn’t have much choice at that point, I guess. My body took over for me.

Friday, we did go to the comic book store (and the toy store to look at their collection of transformers) and then had dinner. I thought I was fine during this time. After I dropped him off that night, I picked up Ash, and we wanted to go for a bit of a drive before going home for the night. Well, lovely idea, but it was short lived. By the time I had picked her up I was so fatigued and brain-fogged that it was a pure “out of it” exhaustion that needed to be remedied immediately by laying down and vegging out or sleeping. I could not function. It was my body telling me to stop what I was doing immediately and pay attention to it.

Those two experiences happened, and I didn’t think too much of it, other than feeling awful for letting my friends down. Telling them we could hang out and do something and then being an awful bore by needing sleep. But it wasn’t until the events of Saturday night and Sunday past that solidified to me that there is something wrong. Whether it is the generic Cymbalta or normal progression of what ails me.

Friday night I slept from about 3am until 4pm. I needed more than my normal 8 hours, I knew, but I use the term slept loosely. We all know what a spoonie sleep is like: painsomnia. It’s not much of a sleep, and lately this has been quite amplified. When I ‘woke up’, I was completely out of it and brain-fogged to the point that I wasn’t even sure what day it was. I texted Chris in order to enquire how his Sunday plans were going (he runs a children’s Pokémon league Sunday afternoons), and to wish him a good night at a stand-up show that night (*** side-note, this show was Matt Braugner. He was playing locally Sunday night, I am sad to say I didn’t get to see him live as he is hysterical, and if you haven’t heard him I suggest you do. Now) I got a reply back of a laughing emoji and “League’s not today and show is tomorrow. Today is Saturday.” Of course, I immediately face-palmed. D’OH!

The day went on with other brain-farts, none quite as large as that one, but enough to make me feel as though I was absolutely losing my mind. Which is a frightening sensation if ever you experience it. That’s one thing we will always want to hold on to. I imagine Alzheimer’s and other dementia is utterly terrifying for that very reason. You feel your mind, memory, and everything that essentially makes you – YOU, slip away from you. And that is what it feels like. I get so caught in a brain fog that nothing seems real anymore. I feel dream-like, like I’m still asleep. It doesn’t feel like reality is real, it’s all just a dream sequence or film. Its depersonalization or derealisation as the experts call it, I’m sure. You’re a walking zombie. Never have I experienced this before the last week or so. It’s terrifying!

And then Sunday came, and not only was the brain fog at its finest, I ended up feeling absolutely ill physically. Not my normal in pain, overheated self. It was more than that. I felt lightheaded and like I was going to faint. My heart was racing. I was nauseated. When I woke up Sunday, I felt relatively okay, considering. I took my morning medications, and wanted to take a run over to Walmart, etc for some art supplies because I have been craving to start drawing and working on some digital art again. (Even though I have a drawing tablet to use, I wanted to try the technique of drawing on paper with an artist pen, then scanning it into the computer to color digitally, therefore I needed some decent artist pens). So, I got ready, and I headed over. I had spent the night at my parents’ place because I was visiting, so I borrowed my father’s car and I drove over to the shopping district (by highway, this is important to note for later) and went into Michael’s Crafts as they had a sale on what I was looking for and I hadn’t been in in a while. I grabbed what I came for but I also wandered around a bit to see what was new since my last visit. That’s when things hit me. Woosh. Things started swaying. I was overheated and sweating profusely. I was short of breath, lightheaded and nauseated. I knew what this meant. I was going to pass out. I also knew that to an outsider, I probably looked very odd and maybe suspicious like I was hiding something or up to something I shouldn’t be: I probably looked nervous more than anything. So I quickly went to the cash to pay for my items and then went straight outside to sit in the car with the A/C and to down some water I had so I could try to feel better enough that I could get drive back to my parents’ place. I sat there for about 20 minutes to half an hour just trying to collect myself and breathe.

When I did finally come around without passing out right there in the parking lot with my head on the steering wheel, I thought that had to have been the worst of it and I probably had enough in me to run into the Walmart next door in order to get another drink. And I thought if I was feeling okay enough while in there, I’ll take a look at their art supplies. So I wandered around Walmart for a few minutes, found an art kit that I thought I’d like, and I was just looking at a few other things including clothing while I was there. I thought I’d be okay when BAM! It hit me again. I thought for sure I was going to pass out right there in ladies’ clothing. So, I sauntered over to the checkout to pay for my items and hoped I’d make it to the car to do what I had done after the previous store: sit in the air conditioned car, breathe and relax. Go zen. Will my body to remain conscious. Try to recuperate enough to drive home, park the car, and lay down in bed for the remainder of the day and night.

After about 10 minutes of sitting there (and witnessing a pretty gnarly accident in the parking lot that I’m unsure of how it had occurred since the one cars front end was destroyed and airbags deployed indicating that it must have been traveling pretty quickly; whereas the second car in the parking space opposite it was unscathed) I thought I could probably make it home. I may have been a little hasty with that thought.

I left the shopping district and headed out onto the highway in the pouring rain. The car desperately wanted to hydroplane about 3 times, but didn’t manage to, thankfully. But, I willed myself to remain conscious until I could find a place to pull over safely. I figured then I’d give my mother a call and tell her what was happening and that I needed help. Of course, by the time I found a spot where I could pull over without causing a bunch of accidents, I felt quite a bit better and was close enough to my parents place to continue on safely. They don’t live that far away from those stores. But, driving while you feel as absolutely horrible as I was is STUPID. I STRONGLY advise against what I did. That was an utterly dumb idea that could have had serious consequences had I actually passed out, or went off the road or something. It was incredibly dangerous to do that, and I am aware, and I plan on avoiding driving for a while until I figure out what is going on with me. DO NOT DO WHAT I DID. That is my disclaimer. Because you could kill yourself or someone else and that is beyond awful. Just don’t risk it. I’m an idiot, I am quite aware.

Anyway, the point of that whole story was to say that generic Cymbalta is making me very unwell. But also, I’m not 100% sure it’s just the generic medication. It could just be the natural progression of my illnesses, it could be something new, and it could be all of the above. I’m not sure. I have to wait until I get back over on to the real brand name Cymbalta in order to know. If there’s improvement then, bingo. That was the issue. If not, I’ll have to see my doctor again and enquire what is going on.

That also reminds me that I am being referred to a cardiologist about my QT interval, again. My EKG showed that while it wasn’t in the extreme dangerous abnormal range at that time, it was on the high enough end of normal to be a concern. That coupled with some of the symptoms I was having (and continue to have) is enough for my doctor to want me to speak with someone who specializes in the heart. Hence, cardiology wants to see me. Which, I welcome with open arms because you do not want to mess around with your ticker, amirite?

Enough of my rambling for today. I need another nap. I’ll try to make these posts more frequently, since I’m far beyond the timeline I had in mind. I apologize for that. In the meantime, hang in there and mind your spoons. I need to go have a nap.

Cheers,

JIL

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