Honesty is the Best Policy…

I usually have a very positive outlook on my life and situation, even when things are bad I can usually keep my spirits up by being optimistic about what is yet to come, and I like that about myself. However, I’ve arrived at a point where I just feel helpless and defeated and I’m not sure how fleeting this feeling is, every day has become a struggle again and my motivation has dwindled, hopefully this is only temporary because my motivation has always been the one thing to keep me going when all else wasn’t working. Right now I don’t know what to say or do, I’ve used up all the tricks I’ve gathered over the years and little is working. I’m researching online trying to find someone who’s experienced with M.E cases (you’d be surprised at how hard it is to find) I hope that my search will be successful and that something good can be set in motion because right now I’ve got nothing to bring to the table.  

– Martie

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You Be You & I’ll Be Me

“All this delusion in our heads
Is gonna bring us to our knees
So come on let it go
Just let it be
Why don’t you be you
And I’ll be me…”

— Let it go, James Bay —

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The lyrics posted above always makes my mind wander, because it’s something I’ve thought about a lot these last few years; when I’ve entered into friendships and after a while parted ways, many of the individuals I’ve gravitated towards has insisted that it all go up in flames and burn us to the ground, because if it can’t survive then neither should we (or I), when in reality that’s just how things go: we grow, we change, and some times two personalities that were compatible no longer is… so, why don’t you be you and I’ll be me and we’ll just see where it leads us? Maybe we’ll drift for a while, but that doesn’t mean we can’t find our way back. Because if it has to be either or, then chances are it’s going to burn. Just like a lot of things in life you have to be open to an ebb and flow of things, instead of demanding a constant fixed point that never wavers, especially when it comes to people, especially when it comes to me.

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I’ve changed a lot over the years, especially in the last two, and I’m constantly changing because as new impressions come along as do I develop, and that is a constant process. I like it. I like being open to the world around me because it contains so many amazing places, people and experiences, and I want to experience it. I find beauty in meeting new people, even though for a long time I didn’t care much for it because my walls were too high and another person was just another creature that could tear me apart, so I stayed away; now it has all changed, now I think there is something to learn from every single person I meet, however fleeting, and unlike the past I refuse to let bad experiences break me because there are so much more good out there to counter the bad, and that is what I search for, always. Be it a good talk with someone I’ve known for years, an evening with someone I met a week ago or just a passing compliment to or from a stranger on the street, or a good hug from someone near and dear; there’s beauty in all of it.

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Today I find my good moments in the new flowers I decided to get for my desk, the cupcakes I baked yesterday (cinnamon apple cupcakes with caramel frosting, mmm) and the fact that I am wearing something that does not double as a pair of pajamas, but today that is enough because this is the height of my health and spirit in two weeks and that makes me happy because it means things are finally moving forwards again.

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And so I’ve spent the morning watching a film, to then do some yoga, taken some pictures in my room and listening to music, and I’m feeling semi-alive so I’d say that all in all it’s shaping up to be a peaceful day… and this peace wouldn’t have been possible a year ago as I have learned to accept who I am; I’ve learned to just be me, and that it is enough.

– Martie xx

[UN]LIMITED

It’s Saturday night, I’ve paused the tv and the house is quiet. The dog is looking at me, watching my every move in case there is something in it for him. I go for my phone, which has been charging in the kitchen, and unplug it before scrolling down my list of recent calls until I find the contact I’m looking for. They never gave me any straight answer on how they’d get home, so I figure I should check just in case. The line rings and rings before going to voicemail — I hang up and try another number. If she isn’t picking up then he most likely will, he’s almost as addicted to the phone as I am. He picks up and immediately I can hear loud music, conversations and laughter, my chest stings a little and I slide to the floor where the dog is waiting for me to pat his head, I oblige.

I shout over the noise in the receiver, my voice is light, easy, and I ask if I’m picking them up at the bus stop later or if they’ve arranged for some other means of transport. There’s laughter in his voice when he replies, he’s having a good time, I can tell, and he tells me they haven’t thought about it, but they’ll call someone so I don’t have to worry or stay up to wait for them. I ask if they have a key, but he mishears me and tells me, yes, they are having a great time, they’re at a pub and my sister and cousin have come to join them as well. I tell him that it sounds like they’re having fun and again inquire about the key, he doesn’t hear me and I end up placing the phone in front of my face and shouting the question into it so he’ll hear. They have a key. I laugh and wish them a good night before we hang up.

As the conversation comes to an end, my smile slowly drops and I sit and look into the large floor to ceiling mirror that is on the wall outside the door, my own face stares back at me at a distance. It’s as blank as I feel. A seedling of envy has taken root inside of me and I wish I was there with them, but I’m not, because my body is in recovery mode — it can’t handle social scenes and physical activity. The silence is deafening and I refill my glass of water and go back to the tv, un-pause it and turn the volume up a few notches to make sure it drowns out the haunting silence.

They deserve this night off, to enjoy themselves in a different setting and to take a night off from the world, I simply wish I’d been there with them. The envy isn’t forged from a dark place that would’ve wanted them to stay behind, no, just a simple wish that I could’ve come after. But it is never simple and my world isn’t perfect and so I can’t join them even though I know they’d welcome me with open arms and joy and love if I did. I am just physically not able to go, again.

The tag on my Yogi tea tells me ‘you are unlimited’ and in a deep corner of my mind I know it to be true, but then and there all I feel is a plethora of limitations. Bullet points of all the things I can’t do and all the people I can’t see because it’ll leave me drained in a bed, trying to crawl back to some form of living state.

All I can think as the pictures on the screen flicker before my eyes is, ‘am I out of the woods yet? And if not now, when?‘ I know there’s no answer to it. I’ve been in this position before (and worse) and worked my way back out, so I know it’s not forever, but in the empty house with the tv turned up too loud, two sleeping animals at my side, I can’t help but wonder when I’ll be allowed to live like someone who isn’t sick all day every day, when I can stop anticipating the next hurdle because I know it’s going to come at some point, but I also know that thinking too much about it is not worth my time because it would steal away the precious moments I have in-between all the knockouts. I wonder if I have the fight it requires to see this through, but of course I know the answer before the thought is fully formed: I have the fight, because rolling over and existing like this forever is simply not an option.

My hands yearn for a keyboard and my manuscript, but my head can’t handle it as it requires too much concentration. My mind yearns for my favourite café, a coffee and a writing session, but none of these things are possible this week, maybe not next week either; and so I’m left with the house, the tv and the couch, boxed in by limitations as I watch my favourite episodes that I’ve seen before, but I can’t think of what else to watch as the unread books that are waiting for me in my room is not a luxury I can indulge in for the time being. The time will come again, it’s just not today, or tomorrow, but maybe soon.

Then it’s Sunday, again, and I only know it because my phone tells me. The world continues to move forward while I’m at a standstill, and all the uneventful days blur together and lose significance, they’re all the same and today won’t be much different either, but there’s always tomorrow.

– Martie xx

The Colourful Outdoors

Yesterday I went outside for the first time this week to stretch my legs and it’s amazing how much can happen with the trees in just one week. Sure, last weekend there were some orange and reds out there, but now? Amplified. Plus, a lot of it has ended up on the ground as well, and add in the crisp air the outdoors is pretty much perfection right now.   

The walk was short and exhausting, but so worth it! And it was nothing a little sleep couldn’t fix.  

 
If my body cooperates tomorrow then the plan is to go for a coffee and a walk in the city just to take in the sights and enjoy the outdoors, can’t wait!

– 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

Louder Than Words

There is something pleasant about that smell of caffeine in the morning, not just any kind, but your favourite brew. 7.30am, you’re awake and so is parts of the world around you, and you go into that one special place and order up a cup of your regular; they don’t even need me to say my order anymore, they just let me out of courtesy. I’ve been assured that they enjoy regulars, though, so I don’t have to find a new place to frequent, which is good. I find a certain calm in sitting at a table in the morning, watching the traffic move outside the window and seeing people walk in and out the door as they too make sure they get their chosen drink before rushing off. My bus is always thirty minutes earlier than my appointments and obligations, I don’t need to rush.

Today I had my very first day of work placement. It was August 2013 I had to go on a sick leave due to my health and I have not returned to the job scene since, before today. It feels good to finally be of use again, to do something worthwhile. This is a process to see if my health can handle working and so -for now- I work four hours at a time, three times per week, but it is enough for now. By the time noon rolled around today my head was pretty spent, but it was a pleasant surprise to notice that my muscles were still alive and well.

I still required a short nap afterwards, something my cat certainly didn’t mind. We ended up taking a thirty minute snooze together:

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It’s been a long time coming this new adventure of mine. 2014 was a year straight out of hell, but it was also the year where everything turned around. Something clicked inside my brain with my rehabilitation and I was able to start working forwards instead of just drowning in the now, slowly. I’ve gone from being unable to lift my own glasses or cutlery, being bed-bound, unable to walk without help because of collapsing muscles, to having a pretty functional life. I haven’t had a proper workout in about a week or so, but my muscles have still gotten some challenges as I went on a weekend trip to Stavanger to visit my friend; we walked a lot and went drinking and dancing. I don’t think words can convey how grateful I am to be able to thoroughly enjoy an evening like that without having to fear a week -or more- in bed, being able to meet new people without almost fainting from exhaustion – the situations themselves are much louder than any existing words I can string together. It was a weekend for the books: a lovely city filled with wonderful people, I can’t wait to go back.

First the trip and today work, and I’m still very much alive. It’s a wonderful sensation that made me skip and twirl along to my music with joy as I walked home from the bus stop, much to the surrounding people’s surprise. There is hope, and this is the proof. I’m not at the finish line, not even close, but I’m on the right course, and with the three P’s it’ll be possible.

Patience. Pacing. Positivity.

It’s a good thing to go by, at least for me.

Take care,

– Martie xx

Body Rehabilitation

Today I went on the second bike ride I’ve done in probably five years. I figured this is the best way to rebuild the muscles in my legs as they’re completely rotten. I am not exaggerating when I say that every time I pedal I can feel my kneecap slide back and forth, because there simply is not enough muscle to keep it in place. After complaining about pains in my knees a few months back I was told that I should start walking on days I could muster it, as my knees were dangerously low on muscle and it was no wonder that my kneecaps kept locking themselves in place, hah.

I basically live on top of a small mountain. Norway is all mountains, almost. The thing is, there is nowhere to go on a bike without having to embark on hills, in fact there is one right across the road from my house and there is no way around it as I basically live in the middle of a sleek hill as well. Therefore my cycling adventures usually last (usually, she says, after doing it twice in one week) around 20-30 minutes, but boy does it work. By the end my legs are burning because of what they’ve been subjected to. I can’t remember the last time I had such an intense burning sensation in my body and it wasn’t due to illness, so this is actually quite fun.

My body is rotten, there is no getting around that, but it’s getting better. These last two weeks I’ve gone on walks every single day, I’ve also mixed it up with some jogging and then I dug my bike out of the garage and fixed it up so that I could use it again and now I’m alternating with some cycling as well. I call this my body rehabilitation because I’m rebuilding so much of it.

It’s taking time, but my body is obviously getting a little stronger each day, but every progress is good progress, however small, and this is very exciting for me as I’m reclaiming my life. I’m not rid of this illness yet, I still don’t have an optimal functional level of energy so to speak, but it’s so much better than it used to be and so I have complete faith that I can kick this illness’ ass as long as I keep working hard, because it takes hard work and dedication to bounce back from anything that has knocked you down.

Right now I’m armed with a large mug of tea and a bowl of müsli with soy yoghurt as a snack, and I’m waiting for my episode to load up of ‘I Am Cait’, reality shows are my guilty pleasure.

I’ll leave you with something that Taylor Swift said when I was at her concert in Hyde Park in June: “You are not going nowhere just because you’re not where you want to be YET!” It’s important to remember that, I think, because some times the long road ahead can look pretty daunting, but you’ll get there eventually, just take the time that YOU need, not the amount of time other people think you need. Nothing is impossible if you put your mind to it, this much I’ve learned in the last few years of my life.

I’m off to feed my guilty pleasure! I hope you have an amazing day!

– Martie xx