Acceptance

The road to acceptance of negative things is usually a long and winding one. More times than not, there is no shortcut. There are pitfalls on that road, and predators lurking besides it, trying to catch you unaware and leading you into despair.
If you are lucky, you have friends and supporters on that way, which will assist you over the pitfalls and scare the predators away to keep you safe.
Still, it is a very long road. No one can carry you all the way. At times, even a single step forward is a success, sometimes just staying where you are instead of running back to where you came from.
Looking back hurts. Looking forward, you often can’t see far, and what you see may not always be pretty. Still, being able to just turn around and run back is an illusion. It’s not real. It’s there to slow you down, to negate whichever progress you’ve made on that road.
Yet walking the road to acceptance is an important factor in healing the inner scars. Some of these roads never end, they are a lifelong process. Others may end abrupty one day, leading you to a brighter future and a solid base on which you can start building again.
Whichever road of acceptance you are on, don’t give up. Just take it one step at a time, at your own pace.
Grüner Tunnel_klein

Advertisements

So, how’s life?

This seems to be my year of sad records.
Negative attendance record for university.
Most doctor’s visits in a year (I’m at 20, with two more scheduled, plus one hospital stay).

This is a year of endings, and new beginnings.
I had to quit work.
I started learning Latin, and ancient Greek (and had to drop ancient Greek again until further notice because it was too much for one semester).
I started reading, and writing, Latin poetry.
I started a second BA (Latin/Ancient Greek) but am not yet finished with my first (two more classes, one per semester, plus the final exam for this module).

It is a year of firsts.
First time in a wheelchair.
First time getting answers (and a diagnosis) for all my seemingly random health problems.
First time being enrolled in two degrees at the same time.
First time applying for benefits from a disability/chronic illness fund (at my university).

It’s a year of constant adjustment.
Adjusting to my new “normal” (which, by the way, I’m still not sure I’ve figured out yet).
Adjusting and readjusting my goals over and over again.
Trying out various ways of treatment and medication.
I went to four different GPs this year (the last one is finally one I get along with and feel respected by).

So how’s life?
It’s confusing.
It’s frustrating.
It’s painful and exhausting.
It’s full of small successes, and small failures.
It’s full of new beginnings.
It’s full of friendship and love.
It’s full of support and understanding.
It’s full of uncertainty.
But mostly, it’s full of reasons to live. And for those I am grateful because they help me through the hard times.

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.