Patience. Pacing. Positivity

I am beginning to see the light again, after almost four months of really ill health I can now slowly muster a bit more, and for that I am grateful because it is not fun to constantly have to turn down invitations and sit out the family birthdays. As if being ill in and of itself isn’t hard enough, but in addition it’s quite hard to be on the outside of what, in the moment, feels like almost everything. I’ve had to turn down the invitation for my cousin’s wedding, that was a hard one to swallow, not gonna lie; but it would include traveling as well as a party with many people, neither of which I am healthy enough to undergo in the foreseeable future. For now it is the routines at home that matter, and it is because I’ve stuck to them that things are looking up a little, slowly but surely!

Like yesterday! Yesterday I changed the tyres on my car for the first time in three and a half years! I’ve tried before, but my dad has always had to take over because I just couldn’t do all four. So yesterday was a proud moment for me, a sort of reward for making sure I take care of my body when it is down, and keeping it up. I took my sweet time and had plenty of breaks, and voila! Now whenever I get in my car this winter I’ll know that I was the one who did that, and it’ll no doubt put a smile on my face for a long time to come.

Babysteps is the key these days, not pushing too hard because I’m just getting my bearings again — and avoiding people with the flu like the plague! I imagine anyone with a bad immune system is taking some forms of precautions these days. I’m glad I can function more in my every day life again, I’m up to a few hours of work these last couple of weeks too, which is very rewarding! Not about to ruin these little joys with getting the flu, so ginger tea is my go-to!

I know the curve of my illness very well by now, there’s a good period and then there’s a bad period, and that’s how it goes, it just varies in severity and length. I found this setback especially hard because of hard I felt I’d worked with my treatments, listening to my body and treating it better, being healthier and the results I saw. I felt like I was soaring compared to how things had been at its worse, these things really makes you appreciate every little detail, and suddenly I was in the figurative basement. Again. When one health issue passed and I needed to rest up and recuperate, another obstacle would occur.

All I can say is that I’m very grateful for catching a break, and I hope it’s come to stay. I also hope to get back to a point where I can stay longer than 1,5-2 hours at work because I find it really rewarding to be there. Patience is key, and I feel like my patience has really been tested these last few months.

Had to remind myself of my three Ps. I’d sadly completely forgotten what they stood for, so here they are again, as a personal reminder, but maybe someone else can get something out of them too:

Patience. Pacing. Positivity.

Forwards and upwards, it’s the only way to go, so here’s to brighter autumn!

– Martie xx

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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

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

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

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

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