One of Life’s Many Messy Parts

‘All the world’s a stage,

And all the men and women merely players:

They have their exits and their entrances;

And one man in his time plays many parts…’

– William Shakespeare, As You Like It –

I am tired. Again. And I am tired of being tired. Again.

My head is full of worries and thoughts about my life, about me, which is making me more tired because as I can’t find any satisfying solutions they continue to grow and fester, tapping my sputtering energy faster than it is able to reload. When it comes to me a full worrisome mind often leads to a heavy, hollow body.

It’s way too warm for wool and turtlenecks, but I was craving the comfort of a thick and snuggly sweater, so here I am, wrapped in an overly large woolen knitted turtleneck while my feet remain bare to compensate for the temperature. The fabric’s pulled up to my nose, so I can see and breathe, while the tunes of Miles Davis trickle from the record player and thunder rumbles in the distance outside the open windows.

I am so tired from all the things going on in my head that I just want to disappear so that I can catch a break, reload and come back refreshed and ready to take on my own slumbering thoughts. That is a luxury I am unfortunately unable to obtain. And so I need to try and cure this helplessness before it sets me back even further.

See, in the past six months I’ve gotten a taste of what life can be. I’ve spent so many years being sick that I’d completely forgotten what normalcy was really like. I thought I knew, of course, but it turns out I had no clue what I was talking about. And now that my health has taken a step backwards, again, I am forced into standstill in order to nurse it back up, again, and I hate it. Normalcy lingers like a bitter aftertaste in my mouth as I am forced to sit back and watch as it dances just out of reach, taunting me.

My life was, is, going well. It was, is, truly on the uptake and I was, am, seeing a light at the end of the tunnel, because if I could, can, go from bedrest to short runs and doing things every day, being with friends and working six hours a week and still have energy to spare as long as I took breaks when needed, then I could, can, also truly believe that there was, is, a way out of this limbo life, a way for me to beat this illness altogether.

At one point I began thinking of the future, something that had not been a possibility before just because I had more than enough to deal with in the present and just getting to tomorrow, without lumping the future onto the plate as well! To begin playing with thoughts about my future was a daunting and exhilarating thing, I knew I wasn’t there yet and still had a lot of work to do with rehabilitation, but now I was able to ponder these things because they felt possible further down the line. The multiple what if’s were so exhilarating that I felt like I could fly, now that I’ve plummeted so has their weight on me.

I finished my book. A book that has been my lifeline on my darkest days, a project that has kept me occupied when I felt like I was failing at life, at living. When it felt like everything got taken away from me at least I had my writing. I do not know how I would’ve faired in all of this if my passion had been a sport like running or swimming, because my writing has been therapeutic at many occasions, and given me a sense of purpose at others, of achievement, when I had little else going for me. (Not taking credit away from friends and family, because they have truly been an invaluable support through everything and continue to be so to this day, and words fail me in my gratitude towards them.)

To finish writing and then editing said book is hands down one of my greatest achievements in life. I have written many books, but all of them are first drafts. This one is different, I’ve worked hard on this on and off whenever I could muster up the energy, it’s been a slow process, but it has given me something to do when working or studying was just a distant memory as well as a distant possibility. An idea that was born in 2010 has now come full circle and turned into a finished novel, next step being to embark on research to take it to the next step towards my dream of publication.

Thomas Edison said: ‘Opportunity is missed by most people because it is dressed in overalls and looks like work.‘ A tough road is up ahead for this book, and for me both writing and health wise, but I know the dream can become reality just because I am willing to do the hard work required to make it happen. But right now? Right now I need a break so that I can gather the resolve I need to get my motivation going again.

The future. Some times I want to just strangle that phrase with my bare hands, because right now it feels like mockery even though I know it isn’t, it certainly won’t be when I get some of my energy and optimism back. Three years of my life have fallen victim to this chronic illness, and even though I am doing much better now compared to how it used to be (my bad days now would’ve been a very good day three years ago), I can’t help but wonder how many more years this illness is going to claim from me. I guess that is why it’s called a chronic illness, because there really is no telling if or when it’ll happen.

All the world’s a stage and we are merely players, and one man in his life plays many parts. Shakespeare hit the nail on the head there. I suppose this is just one of the many parts I shall play in my lifetime, and I’ll hopefully soon go back to the optimistic and motivated person I know myself to be, but right now I just need to rest.

If you made it to the end of this post then I salute you, because I have a tendency to ramble on and on as you can probably tell. But it did feel good to write some of it down, like some of the weight left my shoulders simply by putting it into words. Words are amazing that way and it’s one of the many reasons why I love them so much.

Thank you for listening.

With love,

– Martie xx

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One Too Many Curveballs

Curveball after curveball seems to be the norm in my life these days. I was finally getting back on my feet only to then pick up something else and fall ill again, not that I’m surprised as this is the season where almost everyone is contagious with something big or little and my immune system is severely lacking, so… it’s a 2+2 kinda thing. It’s okay though, because after a few days in bed I’m back up again and most importantly I’m eating again, whooo, and I’m reading as I have no chance to write these day — as a result I’m waaay behind on nanowrimo, but oh well, I might not hit 50K, but I’ll get as far as I can when I get back to writing!

I got new reading glasses and you know what? It’s AMAZING! Here’s why: they give my head a break and yesterday I read ALL DAY and I didn’t have any consequences, that was such a lost luxury for me that I could almost cry with happiness! 

I got a new book delivered last night (knocked on my door at almost 7pm the DHL guy did) and I’ve been devouring that book like crazy, can’t wait to go into detail about it because it’s one of the best Young Adult books I’ve read in a LONG time, stay tuned! wink-wink nudge-nudge…

– Martie xx

Stars Shine Darkly

Antonio: Will you stay no longer? Nor will you not that I go with you?

Sebastian: By your patience, no. My stars shine darkly over me; the malignancy of my fate might, perhaps, distemper yours; therefore I shall crave of you your leave that I may bear my evils alone. It were a bad recompense for your love to lay any of them on you. 

– William Shakespeare, Twelfth Night –

Today… Where do I begin with today..? It’s been a scene right out of my personal hell, that is for sure. 

It’s been over six months since I was close to being as poorly as I’ve become overnight. I’m typing this with sunglasses on, even though the light on my phone is turned as low as can be, I just can’t stomach sounds or light today — it feels like my eyes might catch on fire and make me blind, and my eardrums threaten to split at any sound. 

I’ve gotten another cold and my body has crashed alongside it.  Hopefully it’s just temporary as it’s been a long time since I’ve been as far down in the mud as I am today, and because of that I am no longer used to it (I can’t believe that at some point in the past this was my normal) which makes it seem that more brutal. My bones and joints hurt as well, but none as bad as my wrists — it feels like they might fall off whenever I try to move a chair or use a doorhandle, and therefore my water is in a cup with a straw because I can’t lift any glass long enough to actually drink from it in fear of dropping it due to the pain in my wrists. This is not a state I wish upon anyone. 

This is just to open the door and let people see how fast things can flip with this illness, after this I’ll probably go back to my horisontal state with a pillow over my eyes and the duvet up to my chin and just exist, drifting between waking and sleeping, breathing hard as every little movement feels like a strain, until it passes. Luckily I have a wonderful cat that curls up with me on days like these and only leaves my side for meals and a trip outside, while the dog drifts in and out of my room as if checking to see if things are going alright. 

But, you know, the good and the bad is merely the flipsides of the same coin — it just so happens that the coin landed on the  least desirable side today. It will all pass, in good time. 

I hope you are all having a better Monday than yours truly. Wishing you all well. 

– Martie xx

Chasing the Sun

“Personal achievements in life are down to the mind,

As, in the future you will find:

That achievers achieve because they believe they can.”

– 20, Marrick Taylor –

Those lines are an excerpt from one of my favourite poems. My mother put it on my birthday card for my 20th birthday and I’ve kept it close every since, and these particular lines stand out in my mind this evening.

There is a medal around my neck tonight as I sit here, tucked up in bed with music on my ear. It’s a participation medal, but a medal all the same. Tonight I participated in something called “The Women Wave” or “Jentebølgen” in Norwegian. It’s a race that is 5.5 kilometers long and goes around the center of town. It’s not a race focusing on victory, but participation. Women in all ages gather and walk, jog and/or run the route. Tonight there were about 6000 participants. My mother’s workplace had a few extra starting numbers and so earlier today I decided to join as I remember doing it as a child and absolutely loving it. Should things go south I could just stop and head back to my car, things turned out okay though.

The starting gun went off at 19.00 and I crossed the finish line at 19.51. ME! The girl with a chronic illness! The girl who only a year ago couldn’t lift her own glass of water because it had become too heavy! And today I participated in and completed a route of 5.5 kilometers in 51 minutes!

I began by jogging and slowed to a walk further into the route as the edges of my vision had gone black and the world had become a bit crooked. Accompanied by chest pains, a headache (a byproduct of the low pressure weather) and abdominal pains, walking seemed like the best decision at this point. I am not going to lie, I considered calling it quits, but my legs were still steady, no wobbling whatsoever, and so I took my time and walked, testing the waters. I finished at a jog and crossed the finish line with the biggest grin, and it honestly didn’t hurt that a rugby team was stationed at the finish line as well, cheering at the people coming in and demanding high fives as I ran through them. It felt pretty cool.

Hours later and I still don’t feel a crash coming on and I’m still riding a wave of happiness because of it.

I don’t think one should ever underestimate the effect the feeling of accomplishment can have on ones life. Ones mind. I think it’s important to make room for accomplishments, because when your own body is working against you and everything feels like it’s failing it’s important to have that beacon. It’s easy to become demotivated when all seems lost and so an important thing for me on this entire journey has been to allow myself to have some steps I can master. It used to be being able to shower and blow dry my hair, then it escalated to being able to handle a curling iron again, to change into something that could not double as pajamas, to apply some makeup to my face, meet a friend for coffee. Rarely all these things could be done on the same day, or during the same week, but they were little things that made me feel better when I was able to indulge in them.

The box of things I can do that make me feel better has gradually expanded as my recovery has progressed. I am far away from being a normal, functioning human, but this gives me hope. This is proof that things actually do get better, the journey is not easy, far from it, but not all is lost forever.

Allow yourself to succeed in certain areas of your life, however small the feat my seem to the outside world remember that it’s major for you! Allow yourself to be happy at the small accomplishments as well as the large ones. Remember that even the tiniest bit of progress is still progress. Never belittle it, instead you should embrace it, feel it, live it. Let it fill you up.

Allow yourself to be happy. I want that for you. Every you out there. If you are healthy or sick, on top of the world or struggling, lost or found. I want joy for you. Because you deserve it, never forget that. There is nothing more beautiful than when pure happiness shines through from within, in my opinion it’s the prettiest thing a human can wear.

The road to today has been long, painful and a lot of times it has been without much hope. That is just the truth. A year ago things were more than bleak and I didn’t have much faith that it would improve, but now I see that all the hard work has paid off and I am more than willing to put in all the work necessary to find my way back to perfect health. However long it may take.

There is a medal around my neck tonight and it means so much more than I could possibly explain. It represents everything I’ve had to crawl through, every battle faced (lost and won). It’s a beacon of hope that things are going the right way. It’s a token of everything that has happened and everything that lays ahead.

The best is yet to come.

With love,

– Martie xx

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Give Me My 20s Back

There are times when I am 100% accepting of my situation, times when I understand that I am ill and that my life isn’t what I’d deem ‘normal’ and that it’ll take active effort and hard work to get back to full health. Then there are days like today. Days when I am not bedridden, but not feeling great either. I am at a standstill between two target lines, able to do a few things, but at the same time I can’t do too much because that just sends me into a spiral of exhaustion.

Compared to twelve months ago though this would’ve been a good day, so I am very happy that there has been progress in my situation, even if I don’t always see it myself.

It’s just that… it’s days like today that I find myself wishing for a life without a chronic illness. I am 22 years old and instead of starting my life, having fun, being with friends and just living life, I am instead carefully portioning out energy so that I’ll make it through some days. Moderation is key, and I know that. But some times I wish I could just kick moderation in the butt and go all out.

See, I want to be able to study what I care about. I want to have to pull an all-nighter at the library, to struggle over an essay that is due soon. Of course I would complain about it if ever in the situation, but my point is that I want to have the opportunity. And it’ll come, just not now. Some times I get a little bit irked about having my life on pause at an age where I’d much rather want to be starting my life and learning, and today is one of those days. So much so that I am going on a walk later despite not feeling all that great, but I am not bedridden either and so the stubborn, passive aggressive person in me is doing it anyway. If it’s a good idea one won’t know until after. It’s toying with a dangerous line, but at the same time I need to do it in order not to go completely insane…

If I’m lucky it’ll be rejuvenating and not draining, so here’s to hoping!

– Martie xx

Croissants, Coffee and Dragons

Morning!

It’s currently 07:53am and I am sat in my favourite coffee shop drinking a coffee called ‘sweet chili’, it’s honestly a hail mary during this morning! I have had about one hour of sleep total, not voluntarily I assure you. I have had several good weeks without much insomnia and I am hoping that this does not mean it is back — with a vengeance. The sky’s finally clearing after some morning snowfall, that fortunately did not settle because I’ve had enough snow for now. There’s a buzzing of people as  they’re all getting their morning caffeine jolt before work while I sit here with music low on my ear, watching everyone bustling in and out the door.

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No dairy free breakfast options available so I chose the least offensive… but it is okay because I already have vicious stomach cramps and it honestly can not get any worse.

So, why I am up this early then? Well, I was originally going to take the 8am bus into town as I have an appointment at nine, but when I woke up after finally getting some shuteye and couldn’t fall back asleep I hopped on the bus an hour early and brought my laptop instead. I don’t even feel like a zombie, which makes me think that a crash might be on the horizon… here’s to hoping that does not happen.

It’s an hour until my appointment, which is part of my treatment plan for my M.E. It’s this Norwegian developed method called ‘Norwegian Psychomotor Physiotherapy ‘ (NPMP), which has had some positive impact on people with chronic illnesses. Personally I have only had a few sessions, but I can already say I am noticing small changes in my body so I am very positive to see how this will work further down the line!

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However! It’s officially once again dragon season! Or, as some might say: time for a new season of Game of Thrones! So in honour of that I am sporting my Team Targaryen shirt today, because dragons. I’ll once again be resuming my HBO Nordic subscription when I get back home as I do every year at this time, haha! I know there’s a leak with the first half of the season out there, but I honestly do not want to cheat. We only get ten episodes and I want to savour them! I only hope I’ll be able to avoid any spoilers until the series catches up with the leak!

– Martie xx