I Would Not Give Anything for Health

Maybe you’ve heard someone say, “I would give anything to be healthy again.”
I thought about this statement. It places health above all else. And while I would give a lot to be healthy again, no, I wouldn’t give anything.
You see, even when you are chronically ill, there can be more important things than health. For me personally, there are a few actually (and I have a really shitty chronical condition).
I wouldn’t trade my loved ones for health.
I wouldn’t trade my freedom for health
I wouldn’t trade my safety for health.
Even if there are problems in my country, I live in a relatively safe and well-off country. I enjoy a lot of freedom and rights that not everyone in this world has. I am surrounded by people who love me and care for me, and whom I love dearly and wouldn’t want to miss.
So does my life with a chronic illness suck? You bet it does. It is hard to lose the career you love. It sucks to be in pain 24/7, every week, every month, every year. And do you know how children count the times they still have to sleep until something great happens? Well, I don’t. For me, going to bed means I’m not distracted by activities anymore, which means I’ll actually feel every little pain. For me, going to bed is a coin flip between lying awake for half an hour, a few hours, or the whole night. For me, going to bed means I’ll need to find enough energy to actually get up again. What is a matter of “I want to get up so I do get up” for most people can result in me lying in bed, unable to find enough energy to actually open my eyes (and keep them open) and sit up yet at the same time knowing my day is flying away.
It sucks being unable to focus on things you want to do (like watching a movie, or reading). On some days, my energy and focus are just barely enough to mindlessly browse the Internet while time flies by.
But you know what? I’d much rather be chronically ill yet free, safe, and surrounded by loved ones, than healthy, unfree, in danger, and alone.
I’d give a lot to be healthy again. I won’t give everything.


When the Postal Owls Finally Bring Your Magic Wand

So a while ago, I had ordered myself a wooden magic wand from Heartwood Wands. I had contacted them directly because the kind of wand I wanted was sold out at that time, so they promised to make me a similar wand (their wands are all unique). I paid, was happy, got the delivery notification not soon afterwards, and then waited.

I knew it could take a while to arrive since shipping from the US to Germany can take ages, but at some point, life and everything had pushed the thoughts of my magic wand to the back of my mind. So imagine my surprise when the mailman handed a long-ish package with customs sticker to me today.

Once it dawned on me what that had to be, though, my excitement grew. And yes, I may have squeeked a little (okay, a lot) while opening it. MY WAND IS BREATHTAKING!

Magic Wand

(Just ignore the chaos on the table behind me, that’s my Latin stuff, mostly.)

The Night Micheal Jackson’s Double Stole My Spoons

I had been looking forward to the mini-vacation for over a month. Leaving for the hotel in the afternoon, going to the show by a Micheal Jackson double in the evening, then enjoying a relaxed evening at the bar (with non-alcoholic cocktails thanks to my meds) before going to sleep in a comfy hotel bed. Breakfast buffet in the morning, and then slowly making our way back home.

Two days earlier, I had had physiotherapy, and even though we had some stress with water damage that afternoon, by Thursday, our leave date, I was feeling well. I had slept reasonably well that night, my tension was manageable, and my concentration and energy levels were at “medium” (can’t even remember how “high” feels like so “medium” is good). It was, all in all, one of my better days. I’ve been having more of these since starting on my new meds even though I’m still cautious, thinking it might be just a phase before slumping.

Anyway, I was in a good mood. We left home a bit later than planned, and then had train delay, but I was still in a good mood when we arrived at the hotel. We checked in, went up to our room to put our bags there, and then went on exploring the hotel for a bit. After about forty minutes of exploring, I could feel exhaustion and pain in my legs creeping in so we went to the lobby and had some frozen joghurt while relaxing and talking.

Then we got ready for dinner and the show. My black dress reminded me pretty clearly of the fact that I had gained weight since quitting work in January but thanks to the way it was cut, the belly didn’t show too much. I made a mental note to try on clothes before leaving home for an event next time and was just grateful that I could still pull it off (otherwise, I would had sported a very elegant combo of jogging pants and wide t-shirt–at least, the t-shirt was black).

Dinner was really good even though I felt slightly out of place in the rather fancy-feeling restaurant, and feeling a ping of regret for not being able to order a white wine to my fish. Afterwards, we made our way to the show, which took place in the event part of the hotel. A Micheal Jackson tribute show. I ordered an Ipanema (my favourite non-alcoholic cocktail) and was not disappointed–might have been the best one I’ve ever had, actually.

When the show started, the first thing I realised was that it was too loud. It reminded me of the few times within the past decade that I had actually gone to a cinema, which usually ended with me having a raging headache by the end because of volume and neck and back tension building up. I hoped this wouldn’t be the case this time.

The show itself was well-made even though I realised how little of Micheal’s music I knew, and that part of it just isn’t my cup of tea. Still, I was in good company, had a great drink to sip, and an interesting stage show and choreo to watch.

If only my health had played along… But no, no such luck for me. My back and neck tensed up during the show, leading to me being uncomfortable and in pain, and the volume and everything slowly sapped my energy. By the end of the show, I was so exhausted that I went almost directly to bed. In effect, Micheal’s double had stolen every spoon I had left.

The next morning, I woke up with a bad case of cramped neck muscles from the pillow (it was too soft for me). I also realised as the day wore on that not only had the show left me completely exhausted on Thursday evening, it had also borrowed into my spoons for the next day (and even Saturday).

The show, this one 90-minute show, had left me exhausted and without much concentration or energy for two days. This is my reality now. Fibromyalgia is a chronic disease that will alter your life. In my case, because I had pushed myself to ignore my deteriorating health for so long because no doctor had taken me seriously, the changes were drastic, and I’m still discovering just how drastic. I’m hoping with all my heart that this phase of better days will last, that it is actually an effect of my new medication, and that it will not suddenly poof again. It has allowed me to get back to studying, to appear from the fibro fog that had clouded my mind for most of this year. Not every day is the same, and not every day is one of these better days, but right now, I’m experiencing more better than bad days. I will just have to stay clear of Micheal Jackson doubles, it seems.

Why I Keep Making Goals

For some people, it seems insane to keep making goals only to change them again a few weeks later because something happened. Again and again.

Not too long ago, I was told to just take a break from everything, stop making new goals, just to focus on my health and myself for a while. While this is certainly good advice for many people who get stressed out by goals (or rather by not being able to reach their goals), it wouldn’t work for me. And here’s why:

I feel lost when I don’t have any goals. No matter how insignificant a goal might be, if I have one, I know which direction I’m trying to go. If I’m left without any goals, I won’t know in which direction to take my days. I will just be floating in the wind, powerless to choose my own direction, and I don’t like this feeling. I don’t like to feel as if I lost control of my life.

So I keep making goals. Goals give me something to move towards. They give me structure and a direction. They give me back some control, or semblance of it.

When you’ve lost so much due to health, when you’ve crashed as hard as I have (because I refused to acknowledge my growing health problems for a long time because doctors made me feel crazy so I pushed through for as long as I could), any shred of control that you can regain is huge.

Having to adjust or even throw out goals because they don’t work anymore hurts, yes, but for me personally, this is still better than not having them in the first place.

So if you need me, I’ll be here making new goals, or readjusting existing ones, or evaluating goals to see if they’re still obtainable.

Brain Fog and Writing

Yesterday started out as one of those unproductive days where I end up wondering where my time went at the end of the day. So I pulled up my WIP and forced myself to write at least something. After a few sentences (that had taken a long time to think of and write), I fixed myself something to eat and watched a Coursera video while eating. Curioously enough, my brain wandered back to my WIP and I had a hard time focusing on the video lecture, so when I was done eating, I returned to my story. And suddenly the words flowed. I still needed a lot more time than in the past but somehow, I had managed to break through the fibro fog.

I added a whopping (for me) 1,145 words to my WIP yesterday, over the course of the whole afternoon. And it felt great! I felt productive and like a writer once more.

Maybe it was just one of my better days, maybe it had to do with me sleeping better on average since I started my new meds, and maybe it was sheer good luck. I’ll take it. It was finally a day that didn’t end with frustration because I couldn’t get anything done. I even cooked for us in the evening, and had fun doing so (meatballs, potatoes, and vegetables, so not exactly the easiest or fastest dinner but also no high-end three course masterpiece). And it didn’t feel as if I’d depleted my spoons afterwards.

I did, however, forget my meds while cooking and didn’t remember them until four hours later. Yeah, made for an interesting night (my dreams! I swear, whoever writes and directs them is nuts, and my sleep in the mornings is typically so light that I weave in and out of my dreams and fully experience them for hours). Now I’m kind of hoping this doesn’t trigger a new round of side effects for me since my body was finally getting used to them. Guess I can’t win at everything on the same day.

What Doctors Actually Do When They Dismiss Your Suffering

Many people with chronic illnesses know this feeling: You go to a doctor. You know something’s wrong. But the doctor brushes you off. You leave the doctor’s office, still suffering, but now also confused, hurt, angry…and possibly, at some point, too tired to fight on. You stop going to doctors. You push on through your suffering, you may even try to hide it because no one takes it seriously. But you suffer.

I’m not sure whether doctors realise what they actually do when they dismiss someone’s suffering. I can’t believe that they simply don’t care; they swore an oath to help people, after all. But no matter why it happens, there are some serious consequences when a patient is dismissed.

Patients lose trust in doctors.

Many conditions will actually worsen if untreated. Some of them may end fatal.

Patients may start believing that nothing’s wrong with them, thus setting themselves up for feelings of guilt and self-loathing because they aren’t as high-functioning as healthy people around them.

When I grew up, I was scared that I may develop arthrosis, because a loved one was suffering from it and I was showing some symptoms that pointed to it. I was experiencing knee pain and back pain on and off, I definitely had some of the risk factors, and I went to see specialists in my teenage years almost more often than my GP. I knew *something* was wrong with my body. I hardly knew days without pain of some sort; I was always tired, I’ve been having severe sleeping problems for as long as I can remember.

But each time I went to a specialist, they examined me, then told me not to worry, I didn’t have arthrosis, there was nothing wrong with me…and handed me painkillers (that didn’t really work against that type of pain) and told me to rest. They never tried to find out why I kept having acute pain. They never asked whether I showed other symptoms that I might not immediately link to the pain, and thus not mention.

After I moved away from my hometown (and my awesome GP and gyno), I stopped going to doctors (apart from a dentist) altogether. For years, I didn’t even have a GP because I never bothered looking for a new one. I didn’t have a gyno, I skipped all those recommended annual check-ups (apart from the dentals, and I only went there because I need a retainer that needs to be replaced regularly). I was done with them. I felt like I was only wasting time going to doctors because they wouldn’t really help me anyway. I was a freelancer so when I got sick, I just rested more; I didn’t need a sick note from a doctor for anyone.

At that point, I had already been diagnosed with various chronic conditions, some of which couldn’t be treated, some others which were enough under control that they didn’t need regular treatment. When you know what you’re dealing with, and what your options are, you can learn to cope without a doctor. What will drive you crazy, though, is the stuff that’s not been diagnosed, the stuff that could be something really bad, or all in your head.

Fast forward to present day.

After another two and a half years of trying to figure out what is wrong with my knees and back (since the pain kept getting worse and more difficult to ignore), and being brushed off like before, I finally have my diagnosis. But not because a doctor finally noticed; I got diagnosed after someone online mentioned my symptoms sound like this and I went to my GP requesting being sent to a specialist to get the suspicion checked out. Turns out I have fibromyalgia, and may have had it for at least 17 years at this point (several doctors pointed out that my period pain may be partly due to fibro even though the suspicion of endometriosis has also been confirmed by now). I also have a grave lack of vitamin d, which we don’t know how long it’s been there, and what kind of damage it may already have caused to my body. Was never tested until I was checked for fibro because apparently my current (and soon ex-) GP doesn’t believe in testing for it in young patients (I got extensive lab work done to find out the cause of my sleepiness, which could have been caused by a lack of vitamin d, about three years ago but it was never tested).

Why am I telling you all this?

To raise awareness. My diagnosis came after I had to quit working because the symptoms had got too bad. I am struggling with finishing my BA even though I love learning, and always excelled at this kind of stuff. I have lived my adult life in a constant struggle of “Why can’t I function like others?” and beating myself up for being “lazy”. My sleeping problems weren’t taken seriously and I was told more than once to “just go to bed earlier”. I disappointed people because I didn’t have the energy to do something, and I felt horrible for that because they didn’t understand–heck, I didn’t understand it was because of an undiagnosed chronic illness.

I am only now, slowly, regaining my trust in doctors (because I finally have some doctors again who care). I am struggling with accepting my own limitations because, due to just pushing through my suffering that seemed to have no cause for years, I didn’t have the chance to adjust gradually and maybe stop the downward spiral before it was too late; no, I crashed hard when I had reached the end of what I could push myself through.

I am wondering whether I might still be able to work if I had been diagnosed with fibro ten years ago, or even earlier.

I have a hard time accepting that being a low-functioning adult at best (and a non-functioning minion at worst) is my normal now, and that treatment may or may not help me function better again.

I feel cheated by my body and brain for letting me down like this.

But mostly, I feel betrayed by those doctors I went to for help who brushed my suffering and my worries off, who sent me home with painkillers and told me it’s nothing.

I am 29, and I carry around a whole bag of chronic illnesses and conditions. I am not fine, never was, and probably never will be. But if doctors had listened to me from the beginning, I might be in a better place today than I am.

First Week of Summer Semester

So the summer semester has started in Germany. Here’s a short log of my first week back (partially written thanks to my time machine):

Monday, April 17

No university due to it being a bank holiday; semester officially starts on Tuesday.

Tuesday, April 18

No classes for me. Doctor’s appointment early in the morning so being a zombie for the rest of the day. Still, excitement of going back to university after my long health-related break builds up. Also, looking forward to seeing my profs again. Double-checking online that class actually starts tomorrow; becoming dimly aware of a special event called “Tag der Lehre” (~ Day of Teaching) at university tomorrow, which I won’t be able to visit since it’s at the same time as my class. Oh well.

Wednesday, April 19

Finally, my first actual day of class! (The woes of only taking three classes because I’m almost done.) But first, another doctor’s appointment in the morning, slightly less early. Then, coffee and breakfast with hubby, a quick League of Legends game, and double-checking I have everything I need in my backpack. Leaving for class with high spirits even though I’m far more tired than I’d like. Arriving early so trip to the copy shop to get my paper bound, which I need to hand in next week. Then settling near my classroom with an interesting book I’m reading for my Thursday class (and which I already owned before it was on our reading list because it sounded pretty good–and it is!). Slowly, a few other students arrive for class. We collectively move closer to the classroom door, I settle for reading on the floor after standing becomes too painful (knees and back). Prof doesn’t show up, we wait. And wait. And wait. Until at two thirty, fifteen minutes after our class should have been started, someone took pity on us and informed us of the fact that all classes for the day had been cancelled due to the Day of Teaching event. Yes, on a day of teaching, there’s no teaching. Go figure. So I slunk home, grumbling, hurting, disappointed.

Thursday, April 20

Trying to shove away that feeling of longing for class, and disappointment, because today’s class doesn’t start until week 2. Yep, that’s right, my third and last class for our starting week has been postponed because our prof isn’t back until next week.  I may or may not contact my GP’s office to make an appointment for some time soon-ish (honestly, I’ve already had enough doctors for one week, so might not get around to do this until next week). Spending the day gaming and reading, and studying Latin. Oh, and doing Sanskrit homework for next week Monday. Yay, something to do with my summer classes!

Friday, April 21

I have Fridays off, so I’m spending the day mostly relaxing (aka gaming, reading, sleeping, cuddling cats).

Saturday, April 22

Another day for relaxing and studying Latin and Sanskrit.

Sunday, April 23

Today, I’m not myself. We’re gaming with friends, so I get to switch out my own life for the life of my character, who definitely does not have fibro, or any other chronic illnesses.