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.

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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.

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.

University Paper vs Brain Fog

There’s still one paper I have to hand in for university for my current BA. One paper, and then two seminars and a written exam in June. Sounds like a breeze, doesn’t it?

Well, if you pair a very complex topic with severe sleeping problems and a brain that may randomly shut down for a complete reboot (hello, Windows, no clue how I came up with you in this context), which could take anywhere from a few minutes to the rest of the day, suddenly this one paper becomes the Iron Man.

And in case you were wondering, yes, knowing I still needed to finish this paper did stress me out. Depending on my overall mood, I’d say the stress level of this knowledge was between a mild guilt while gaming (because even with a strategy CCG, it still takes less brain capacity than focusing on a complex topic that will be graded) and paralyzing horror (as in, I have lots to do but am unable to focus on anything because I’m completely overwhelmed and wondering whether I’ll get anything done in time).

“Just plan it for the next day, make time for it.” Yeah, thanks, great advice. For healthy people. I lost count of the days where, going to bed, I did exactly that. Make a mental note that the next day, I would do X for the paper. Only to have my brain turn on me (traitor!) and prevent me from sleeping, or from getting more than a few hours of dozing between tossing and turning, and getting up exhausted and frustrated–and kind of defeated.

Believe me, working on a complex thing–any complex thing–after a night of insomnia is not the greatest idea. Unless you like lots of mistakes, or re-doing your work on a day when your focus is better.

It was a long and hard battle. I paid for it in curses, stress, frustration and gifts to my brain (aka chocolate). But, I prevailed (by the way, thanks to my very helpful brain, it took me a nice improv round of Taboo with hubby, and then a dalliance with Thesaurus, to remember this word–another thing my brain likes to do more often nowadays).

This afternoon, I finished up the paper and printed it out. (Cue the hallelujah and the angelic choir. Thanks.)

Now if I can remember to get it bound on Wednesday, and then to hand it in next week Monday, that’d be great.

Victoria est meam. Vale.