Admitting to your illness: the cane

When I am online, I admire all the people who are so self-confident in their own illness. I know I don’t have to mirror myself to others, but I like to become one of those girls that is not ashamed of the weight she gained through her medication use, or the one who proudly admits its okay to just be. Those are my standards, but I’m afraid I don’t always live by them.


I live in a household that has had its ups and downs, but to show my fragile self and the state I am in is something I barely give to people. I’m afraid I might come off as an annoying, whining, lazy shit who thinks the world revolves around her for being in pain. I want to show I don’t need to be saved or need help and I’m independent despite the illness.

But here is the truth: I do need help. I’m not always as independent as I want to be. Realising it is okay to ask for help, to aid yourself, is hard for me. It’s often the ‘what if I look like a stupid kid that won’t grow up?’ question that holds me back from those things. Apart from my loved ones, I never give in.


So when my fibro got worse during the cold weather, I noticed even small errands or walks weren’t going as smooth as they should be. My hip started locking into place during walking and my legs got longer and more painful spasms. Before all of this, walking was only tiring, but never really painful. The pain remained in my upper body, around my shoulders,neck and back. But with this additional trouble going on, I knew I needed help.


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This is where the cane comes in. After a few days I figured out that it wasn’t going to help if I only rubbed myself in with muscle relaxer and by staying put. No, I was afraid I needed a little assistance. Reading about other fibro patients who are using canes and wheelchairs at a young age gave me more confidence to buy one myself. But this is the tricky part: When you are using a visible instrument, people are going to ask questions. They will stare, they will talk about you. Being the paranoid bitch I already am, I already had 10 doom scenarios in my head. As long as you are walking and acting like any other human, you’re fine. But as soon as you are visible impaired, people look when you walk by.

So what made me change my mind? the necessity. If I have the bad day I am so afraid of, let it come. Now that I am using one (pictured above) I do notice the difference. Before, I had to hold on to everything near me. Whether that’ll be people or furniture. Hell, I’d even hold on to your cat for support. I now have my own little support-line, and I’m fine with it. 

Plus: I went ahead and decorated the whole thing with stickers and glitters. At least they’ll know I’m a fancy impaired bitch.

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Illustrations that hit close to home

This post is dedicated to the artist avogado9 on Twitter. All his art is copyrighted by him, not me.

 

I wanted to make a quick post about this artist and his wonderful artwork, which is super powerful and hits all the notes. I collected the ones who speak to me on a different level, all for different reasons.


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all rights go to avogado9 and his work.

For the love of Pets

It has been quiet around my blog for weeks, as I haven’t got the time to write a piece with events and other stuff going on. My birthday happened, and so did some complications with my medication. I felt too tired to even open my blog and get concentrated on posting, but I’m glad the storm is over and I finally have some energy to get things done.

 


When your health is at a low it’s crucial to have people around who help and support you through your process. As I am going through such a process right now, I feel the need more than ever to have company around. Someone to talk to, to cuddle with and to spend your time with. But ‘healthy’ people do have jobs and other obligations to fulfill, so your mostly left alone in your bed or on the couch.

 


Lucky for the few of those who have pets, the little (or big) creatures who waddle around in your house and keep you company. I do believe that no matter the size or the kind of pet you have, whether it’s a large-sized dog or a little bunny, ALL animals do feel pain/sadness of another being.


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When I feel pain, I can see a big difference in the behavior of my dog and cat. They get much more silent and affectionate. It’s like they actually know you feel miserable, and they try to cheer you up. Also, there is nothing better than a good snuggle with your favorite baby.


It’s also scientifically proven that pets help improve your health. For instance, when you’re having a panic attack, the purring of a cat can help your heart-rate ease down and eventually calm you down. If you have a pet, you are less likely to have a clinical depression. There are numerous health benefits of owning a pet. These range from improved cardiovascular health to a reduced risk of asthma in children exposed to pet allergens, and better overall physical and psychological wellbeing.

In one study, stockbrokers with high blood pressure who adopted a cat or dog had lower blood pressure readings in stressful situations than did people without pets.


So we can only conclude that pets are good for body ànd soul. What would we do without our fur babies ? Most likely, we’d be very, very lonely.

A Challenge to the World

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Time is so irrelevant. What’s quick to the turtle is slow to the fly. I find myself thinking about time an awful lot.

5 years ago I cut ties with people, which ultimately changed my life for the better. I got stronger mentally and physically because of it, and my stress level reduced.


But thinking that would be the end of all the negative constructions in my life was wrong. I forgot there was a thing called trauma, and it would probably haunt me for the rest of my life. It’s a thing I learned with the coming of age.

At age 22, being in a ‘pause’ of your ambitions and life progress, I now more than ever have the ‘hide and seek’ feeling. It’s a strange feeling and is hard to describe, so that’s why I  replace the feeling with an anecdote: Whenever I was little and I used to play hide and seek with my friends or grandparents, I had this nauseous feeling in my stomach when they were looking for me. Cramped in a corner, hearing the footsteps through the house, I always asked myself: ‘What if they don’t find me? I don’t want to lose the game, so I’ll probably have to hide out here forever. Just to win the game.’

That feeling keeps occurring now that I’m older, and I see all my old classmates getting kids, getting married or having a secure job. It’s coming close to an ‘Hey! Don’t leave me behind!’ feeling, but yet it is one I don’t want to admit to. Even if it means that eventually I will win the game, I’ll hide with my problems and medication stacks.


The sentence ‘You’re a challenge to the World’, was something my neurologist said to me yesterday. I saw her after half a year, and much had happened. In the past summer my migraines seemed to be a little monitored, and both of us had a good feeling about it. ‘It won’t be gone, but it will be manageable’. Of course meds come with side effects, and soon I got to experience the best of ‘em. Fainting and eyeballs which are rolling into my sockets, it wasn’t exactly fun. So that was Plan B which failed, and now we’re heading on Plan C. To me it only feels as yet another unsuccessful attempt at overcoming my sickness. I keep hiding until I win the game.


Also, kids, take your meds. I found out that painkillers that contain opioids need to be taken preventive. Results conclude: nausea, fever, heat and cold episodes, basically having a major flu.

The Holy Trinity of migraine relief 

3 remedies that might help your migraines to stop

Last weekend I spend entirely at my boyfriend’s place. I needed the distraction, after a whole week of feeling unwell, having migraine flares for days and being sick. I finally bought the Nintendo Switch, which I was thinking about buying for a long time. It’s an ideal combination console, so I can play on the TV and switch to handheld whenever I get too tired of sitting straight up. Because, yes – this happens often to me. Needless to say I am pleased with my purchase and had a blast so far with the thing.


But the weekend turned out to be one where I was able to catch up all the sleep I lost during my week, ‘cause my migraines were so bad even sleeping wasn’t an option. Even 12 hours of sleep weren’t enough, as I passed out right after breakfast. I was exhausted. So now two days of sleeping later end up with me being awake at 4 in the morning, while writing this. Not the brightest idea, eh?

But it got me thinking. What relieved me from my migraines? Even just a little. Since doctors never found the source of my headaches, I’m still guessing what exactly causes all the pain. During the last 3 years I tried almost anything. But during long lasting periods of migraines, I got my hands on a few things that are helping me a little, so sharing those might help you as well.


As announced, the Holy Trinity:

  • Icepack/wet towels

This is one of those remedies that are simple, but can be super effective. When I’m burning up in my bed and sweating for days, I get myself a towel and make it moist. So whenever a flare is coming up, I can cool myself down. I usually press them onto my temples and apply firm pressure. You can use an icepack as well, but just make sure your head/ muscles don’t go into an actual brain freeze.

  • Essential oils

Whether it’s for my aching shoulders or for my luring headaches, I have essential oils for everything. My favorite kinds are the rollers from Puressentiel, which combine multiple kinds of oils (like lavender and peppermint) for optimal relief. When I’m experiencing a fibro and-or migraine flare, I just rub some on and have a rest- so they can do their work.

  • Prescribed medication

Of course these are all wonderful alternatives, but when it comes down to the most horrible pains, a girl’s gotta have her emergency kit; mine mostly contains out of painkillers called Dafalgan Codeine. Now, I really DON’T want to advertise meds. They should only be taken when needed. Dafalgan Codeine is a paracetamol based pill with codeine, a strongly addictive painkiller used only for post-surgery. But as told, no doctor can find a cure for my migraines, and so of this moment this is the only prescribed medication that eases my pain.

 

If you think about getting medication for your health, please speak to a doctor or specialist who can help you along the way.

 

 

 

 

Check-ups, little embroidery and bujo’ing

It’s no fun when you have to convince people you’re actually sick and not a phony, especially when we chronically ill have little physical proof of it. Yesterday was my check up with the Federal government, where they would check if I am ‘sick enough’ to stay home and receive an income. Its the second time, since the previous one only contained a check for my migraine. I was in the middle of my fibromyalgia diagnosis, so it got no chance of being approved as a legal reason. I only hope that this time, I’ll get a pass. Money is no big deal to me, but I have no income whatsoever. If my doctors tell me I have the right to it, I know I deserve it.


But enough about boring money stuff, I got back on embroidery. As a break from the big table-cloth, I bought a square meter of blank fabric to draw patterns on. With some new stitching techniques I started on a new piece.



Its fun to get a break from a long-term project, so doing this went really fast and really well. Its mainly to try out the new fabric and threads, while doing something more creative.

It turned out pretty nice for a first go! I’d give myself a nice 7.


I wanted to go buy a book with all kinds of stitches in, but our local bookstore apparently is so hipster it only sells knitting books. So while I was at the store, I threw some money in the air and bought a bullet journal guide, together with brush pens and calligraphy pens. The guide has some really cool designs for monthly spreads, tracking ideas and creative lettering. More on my bullet journal is coming up in a later post!


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Thats all for now. Enjoy the weekend!

xoxo, Shayenne

Catching up on: Sewing and Knitting

During New Year’s eve, I’m the type of girl who sits home with their family and watches TV until its 12 am. I watch some fireworks, and go to bed as early as possible. I’m not the party girl that stays up drinking ‘till 4 am, and never have been. I tried it out, but it wasn’t my kind of deal. So I settled with fun nights in and good dinner, while playing UNO with my grandparents.


After our annual happenings – all mentioned above – my grandma saw me working on a DIY embroidery kit I got for Christmas. I struggled with the patch because it was hard as shit. But I’m persistent, so I wanted to finish it. ‘Wait up a minute, I think I have a piece of cloth to work on,’ She told me as she worked her way through the old rags in her cabin. She magically pulled out a big table-cloth with a stitching pattern, brand new. I was so glad to have a smooth platform to work on. Now, a week later, almost 1/4th of my cloth is done I’m actually glad I catched up on sewing. It’s a nice distraction when my migraine is really bad and I can’t watch TV or use anything else electronic. I’m already thinking about getting an embroidery patch and draw my own designs, and even knitting a scarf!


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In the photo you can see

  • my table-cloth, which now is 1/4th finished (the flowers and branches are done),
  • my sewing supplies
  • this cute kitty box I got on sale.

Hope you liked this post. That’s all for now!

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