fibrowarriorgirl - Tumblr blog

fibrowarriorgirl · 2 years

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'Grippy sock holiday'

'Grippy sock holiday.' It's a way I've seen some people online refer to being admitted to a psychiatric hospital. In The Netherlands, you don't get grippy socks (I've got my own though).

I'm in a bad place at the moment. Wednesday night I was admitted here as I was a danger to myself. This was on a voluntary basis. I can't hurt myself here, I'm safe from myself here.

This is my first time being admitted in such a place. It's mentally a very draining experience. Especially with a chronic illness on top of all that.

I'm the only one I've seen here who uses mobility aids. I've already frightened a few other patients with my PNES. It's a strange place to be. My life is on hold, but that's okay. Because that's what I need right now, to have a time-out. Time to recollect my thoughts and to rest, while also regaining structure in my life. There is constant care here, which is what I desperately needed.

I hope my loved ones can now also take a break and recover. My partner has been through a lot lately, and I hate that I'm the reason for that. It's nobody's fault, but it still sucks. But I am so lucky to have such an amazing supportive network. My parents, my partner, my friends. They're amazing. Parents stopped by today and gave me a bunch of gifts, including the super cool plant in the picture! I'm so happy with it, I've named him Toby. But also snacks, a diary, pyjama's, colouring book and more! You have no idea how grateful I am for that.

So yeah, that's what's up with me now. Don't know how long I'll have to be here yet, I'm not worrying about it though.

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fibrowarriorgirl · 3 years

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What is there to say?

It's hard for me to post here, when there's nothing happening.

And I really mean nothing. Because of my PNES, I can't go outside without supervision. Going to the supermarket with my partner is pretty much the most exciting thing for me on most days. Last weekend, I stayed at my mum's house recently. It was a very nice change of pace.

My GP is trying to get me referred to an epilepsy centre. Not as easy as it seems apparently. I hope they will actually do an EEG on me there. I want to be absolutely sure it's PNES and not anything else. I'm honestly starting to think it might be Functional Neurological Disorder.

My psychologist has also reached out to the rehabilitation programme I'm supposed to start soon. Not sure if they received my referral, but I guess we'll find out.

I'm grateful for all the support I'm getting, especially from my partner. This isn't easy on him, but he is still there for me.

My life is boring, but exhausting at the same time. Not being able to go anywhere makes the pain a lot less. But that also means my flares are even worse as soon as I do do something. My PNES are physically and mentally draining. I get a lot of headaches lately and my appetite seems to be insatiable.

Better days are coming, but I'm not sure what to do while I'm waiting for them.

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fibrowarriorgirl · 3 years

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Silence

I've been quiet for a while, I didn't know what to say. I don't really have anything hopeful or inspiring to say.

I've had a rough week. It's getting colder, and I used to love cold weather. But I didn't realise that the cold makes fibro worse. I've also been stuck in my house, I can't go anywhere without supervision. I had hoped my PNES seizures would be less by now.

I used to go out for walks all the time. I loved my evening walk. I would listen to music and just walk for a while, sometimes even hours. I really miss it. My partner and I go for a walk every day, but I miss being able to go on my own.

I'm going to start at a rehabilitation centre soon. Right now they don't have availability, but they should have time for me soon. I'm probably going to be referred to an epilepsy specialist too, for my PNES. Mainly to make sure it actually is PNES and not a different type of seizure. Until then, I can't go outside by myself.

Life isn't all bad though. I'm going out for dinner this weekend, and I'm staying over at my mum's house. I'll get to introduce you all to my other cat, Loesje! Loesje has recently been diagnosed with arthritis, and now we take the same medication!

I'm having a hard time right now, that's okay. I don't always have to feel good. As long as I know that this is temporary, this feeling will pass.

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fibrowarriorgirl · 3 years

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Wheelchair practice

As you may know, I started a fundraiser recently to be able to get a wheelchair. Already €200! You have no idea how grateful I am. I will actually be able to buy my own wheelchair soon!! If you haven't already checked it out, feel free to read more about this here.

At the moment, I'm borrowing a wheelchair from a family member who does not need it right now. So I've been practising. It's actually pretty difficult to let someone push you. Giving up control of movement is scary. Especially crossing the road is terrifying. Pushing yourself around is harder than it looks, especially on days when the pain in my hands/fingers is particularly bad. But I've done pretty well. My partner and my best friend both pushed me in my wheelchair. And I'm able to do small distances by myself now too. I go outside with my partner to practice every once in a while. And I really enjoy it.

I honestly love having a wheelchair, it gives me so much freedom. Sure, it takes some getting used to. But it's great for longer distances or days out (amusement park, shopping, etc). So I can't wait to get my own very soon.

I made my boyfriend take a picture of me in the shopping centre. I can just see how happy I am in this picture. I did something scary, but I did it with someone I trust and love a lot.

Learning how to use a wheelchair has been emotional, but it's been a good thing. So even though I'm exhausted now, I'm happy.

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fibrowarriorgirl · 3 years

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Painless guilt

Fibromyalgia comes with chronic pain. Some days are worse than other days. And for some reason, whenever I have a low pain day, I feel insanely guilty. I feel like that I'm overreacting, that I probably don't even have fibro and am suddenly cured from whatever was hurting me. I cannot look myself in the mirror, too ashamed of myself. But why? Because I'm not in much pain? That doesn't make any sense, right?

Internalised ableism is what's wrong. I feel the need to prove how ill I am, the need to prove that I am disabled, to pretty much everyone. Even myself, apparently. I often make the mistake of pushing myself too far on days like this. I somehow forget that even though I'm not in pain at that exact moment, I can be just a few minutes later.

That's what's been bothering me today, at least one of the things that's been bothering me. I woke up with barely any pain. I have to refrain myself from jumping up and down from joy. But I have this insane amount of guilt. I unloaded the dishwasher today, and partially loaded it back in. Forcing myself to be at least a tiny bit useful. Forgetting I know also have to keep in mind I get multiple PNES attacks a day, which are physically very taxing. Now I'm in bed, ankles and knees hurting. They're not hurting that bad, but bad enough to keep me up. And even though it sucks to be in pain again, the guilt and the shame disappears.

I hate this conflict I have with myself all the time. I wish I could turn my brain off

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fibrowarriorgirl · 3 years

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Doing it poorly

I woke up this morning with drool covering my face, my body ached, as if I did some extreme work-out, pee on my bed and several items from my bed were thrown on the floor. So I'm guessing I had a PNES attack right before I woke up. And even though I know that PNES isn't dangerous, they still scare the shit out of me. I can't trust my own body any more.

I sobbed when I woke up. It took me hours to fall asleep, and yet I awoke a mere 4 hours later. I tried to go back to sleep for another hour until I gave up.

I startled myself when I saw a thick black line splattered across my face in the mirror. Then I remembered I had another PNES attack when I was painting last night. I went to use the toilet, quickly grabbed some breakfast and headed back to bed.

"Today I'm staying in bed." My pain isn't that bad today, only in my knees and shins. I get a headache after every PNES attack, but it fades away eventually. My fatigue is okay today, I'm not as tired as some days. Yet, today I have so little spoons. I covered myself with my weighted blanket.

Today is a bad day. I can smell that I need a shower. But I'm too scared to shower. What if I get another PNES attack? My chronic illness cart desperately needs to be reorganised, I can't find anything I need. I desperately need water too, and not the pepsi max from last night.

Scrolling tiktok is frightening too. I'm not used to take caution to flash warnings. So even though the creator of the video had huge bold letters "FLASH WARNING" a good 5 seconds before the actual flashing, I didn't click the video away. When I realised what was going to happen, it was too late. Another PNES attack, while the video kept playing in the background. Every few seconds, the flashing started again. Again, this is not the creator's fault at all. They did everything they could. I just need to adapt to this. I decided I was going to let myself feel miserable all day.

I don't what came over me. But I thought to myself 'at least open the curtains.' I tried to, but a mountain of dirty laundry and rubbish blocked my way to my window. I grabbed a bin bag and a laundry basket. All the laundry went into the basket, the rest went into the bag. I didn't sort the laundry by colour yet, but that didn't matter. Once everything was from the ground, I grabbed a table. It was covered in rubbish, dust and coffee stains. I threw the rubbish away. Yes, it's still covered in dust and stains, that's okay. I put a scented candle on it.

This took me about 15 minutes to do. And I was exhausted and in pain. But now my curtains were open, my window was wide open for some fresh air and the scent of lavender was filling the room. And yes, my room is still a mess. But it's so much better now. Once my partner came home, I had a good and well-deserved cry.

This all reminded me of a screenshot my mum shared with me a while ago. "Anything worth doing, is worth doing poorly." Even though my room is far from perfect, I did something. And I'm so proud of myself. It's been a while since I was as depressed as I was today, but I know that I did everything in my power to make it better.

My week is turning out very differently than I planned. Let's hope next week goes okay.

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fibrowarriorgirl · 3 years

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PNES

I had the fright of my life 2 nights ago. I was uncontrollably thrashing my body, drooling, slight memory loss and confusion. My partner called the ambulance. As soon as they saw I wasn't unconscious, they dismissed me. They told my partner it was probably a psychosis.

Yesterday I went to the GP. It was worse yesterday, with a lot more severe memory loss. I lost count how many attacks I had, maybe 5? At one point, I didn't even recognise our cat. I didn't know what colour my cat was, how old I was, where my mum was (she was the one who brought my partner and I to the GP and hospital), etc.

At the ER, the neurologist pretty much immediately recognised this: Psychogenic Non-Epileptic Seizure (PNES). It's nothing severe or harmful. Neurologist thinks the stress of my recent fibromyalgia diagnosis brought this on. So I will be okay, but it was honestly terrifying. A few hours after returning from the ER, I had a seizure which temporarily paralysed me. I have never been that scared before.

These seizures are exhausting and are very painful (I'm guessing the seizures themselves aren't painful. But they are when you have fibro). That's why I was inactive these last few days.

The neurologist told me that even though PNES isn't dangerous, it's still scary to experience. There is no medication for it, you need to find the trigger and reduce the stress that trigger brings on.

I will be going to the GP again in a few weeks to ask for a referral to a neurologist. I want to do some tests just to make absolutely sure it's nothing else. I doubt it's anything else, pretty much all my symptoms are explained by PNES. But rather safe than sorry.

These seizures cost me a lot of spoons, and it's a bit too much for me to handle at the moment. I will be okay, but at the moment I'm feeling a bit down.

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fibrowarriorgirl · 3 years

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Fundraiser: help me get a walker and wheelchair

I need mobility aids to get around. I currently have a walking stick, and a walker. My walking stick is honestly great quality. But my walker on the other hand... I bought this used walker for a suspiciously low price. I realised this wouldn't be a great walker, but I needed something to help me walk. It's completely rusted through and the handles are facing the wrong way. So even using the walker can be a great toll on my arms. Something I also need but am not able to afford is a wheelchair. I don't need the wheelchair for every day, but I do need it if I want to go somewhere for the day. If you are able to, please consider donating. If you can't afford it, a reblog would be much appreciated too!

The description is in Dutch, so I'll post a translation here:

"My sweet, brave daughter Elke of 20 years old has been diagnosed with fibromyalgia. It is a hard blow to receive this diagnosis at such a young age. But it does answer the question why she is always in so much pain. She is allowed to start in a rehabilitation centre and is fighting to learn to live with chronic pain. For five months now, the pain has been localized in her ankles, making walking very difficult. I would like to help her buy a good walker so that she can move around well at school and internship. And I also really want to buy her a wheelchair so that I can take her on longer trips. These aids are expensive and requesting reimbursement is very complicated. Because I can't pay for it myself, I want to ask for help through this way. Who please help me? I am very grateful to you!"

If you are able to, please consider donating. If you aren't able to, please consider sharing this! Thank you for your help <3

https://www.one2give.nl/crowdfundingprojecten/wens/491/rolstoel-en-rollator-voor-elke/

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fibrowarriorgirl · 3 years

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Sunday 26th of September: Migraines and fundraisers

I want to start something new on Sundays. I want to make an overview of the week I had and what I have planned for upcoming week.

Exactly one week ago I started this blog. My most popular post at the moment is 'Autistic women aren't as rare as you think'.

This week I've been to my classes. I even managed to follow a full day of classes.

I've travelled with public transportation a few times this week, and was disappointed by the ableist treatment I received. I am still trying to raise more awareness about this. If you missed my post about this, click here to read it.

Saturday I woke up with a really bad migraine, and it didn't go away until earlier this evening. I have been pushing myself this weekend to still get things done regardless.

And last but not least, I started a fundraiser. More about that at the end of this post.

So what have I got planned for this week? Tuesday I will go to my internship. I am going to be relocated because my current internship location isn't accessible to me. I've also got classes next week. In the weekend, I will be celebrating my friendversary with one of my best friends. Our 10th anniversary already, time flies! My mum and I are going to a Christmas market on Sunday. We were able to borrow a wheelchair from a family member for the Christmas market next Sunday.

Something that I hope to be able to start next week, is a short series here on my blog. My partner, my mum and my best friend will write a blog post from their perspective.

About the fundraiser: I need mobility aids to get around. I currently have a walking stick, and a walker. My walking stick is honestly great quality. But my walker on the other hand... I bought this used walker for a suspiciously low price. I realised this wouldn't be a great walker, but I needed something to help me walk. It's completely rusted through and the handles are facing the wrong way. So even using the walker can be a great toll on my arms. Something I also need but am not able to afford is a wheelchair. I don't need the wheelchair for every day, but I do need it if I want to go somewhere for the day. If you are able to, please consider donating. If you can't afford it, a reblog would be much appreciated too! I will also be making a separate blog post about just the fundraiser so it's easier to share.

https://www.one2give.nl/crowdfundingprojecten/wens/491/rolstoel-en-rollator-voor-elke/

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fibrowarriorgirl · 3 years

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Toxic positivity & chronic illness

This post is aimed mainly for the people who aren't chronically ill themselves, but for those who know someone dear to them is chronically ill. Although I think a lot of chronically ill peeps will be able to relate to this post.

"Stay positive." It's something that pretty much everyone hears in their life. In our darkest moments, we will always have someone telling us to be as happy as possible. Remember the last time you were upset, and someone told you something like this. How much did you appreciate this?

Sure, it can definitely help under certain circumstances. Let's say you failed a test at school. Your parents telling you "it's okay, better luck next time!" could actually cheer you up. But what if it wasn't just any test, but an important exam you failed. "Better luck next time!" is a lot less pleasing to hear. You failed your exam, you won't be able to go to your next year, all your friends did pass so you won't be in their class any more, and the next time you do the exam will be over a year from now. The phrase "better luck next time" sounds bitter more than anything. And definitely isn't appreciated.

We as humans often feel inclined to turn anything bad into something positive. It's a natural response. You see someone you love in pain, you want to be able to say something that will make it better. But we have to be realistic, there will be times when someone is in pain (physically, mentally or both), and there is nothing to say to make it better. And you trying to make it better, only makes it worse.

I've only had my fibromyalgia diagnosis for almost a month, but I've had episodic pain for over a year now and constant pain for almost 5 months now. Especially this last month has been rough with toxic positivity.

Receiving the fibromyalgia diagnosis was hard. At the time of being diagnosed, I didn't know too much about it. I had read about a few symptoms, but I honesty didn't think I could have it. So once I did some research, I was devastated with my diagnosis. And something I noticed, is that a lot of people were trying to help me by saying uplifting things.

"But Elke, what's so bad about that?" What bothered me the most, was that I wasn't even diagnosed for a week and people were telling me to cheer up. Telling me it could be worse, telling me what has helped them when they had pain once, it will get better, it will pass. And I always had the same response: "Let me be sad for a while."

I had just heard I had chronic pain. I have a very frustrating diagnosis. Doctors can't tell me what it is in my body that is causing all of my symptoms. There is no medication. I need mobility aids to get around. I will need a very intense form of rehabilitation. So yes, I was pretty depressed for a few days. The last thing I needed, was to hear it could be worse. I was grieving, grieving the life I once lived. I was in denial of the life I was forced to start living.

Maybe you're thinking that even though your positivity isn't welcome, but it can't hurt, right? Unfortunately, you're wrong. Being told that something could be worse, tells me I am bothering you, that my pain isn't severe enough to be upset about. Maybe that isn't your intention at all, but it is somewhat implied. We also internalise this way of thinking. I tell myself "it could be worse" so I can't feel bad. Even though my head can be pounding, my joints burning, with no energy in my body to do even the simplest of tasks, I'm still not allowing myself to feel bad. Because there is someone out there who has it worse.

Not only does this phrase negatively impact me, it impacts my surroundings. Let me take a friend of mine, who I will call Jane Doe for the sake of anonymity. Jane suffers from an undiagnosed eating disorder and body dysmorphia. And a few weeks ago, she told me she felt bad whenever she talked about her struggles with her body to me. "You're actually in constant pain, you have it so much worse." Do you know how heartbreaking it is to hear that? She is struggling with something I know can be so challenging. She is in (mental) pain, but "it could be worse." I am still here for Jane, I don't think of her pain as less or not as important as mine. I don't want her to feel like that.

Of course, there are many things chronically ill people are frequently told that do more damage than good. "I had pain here once, so I did x and y and it went away." We already tried x and y. We tried the whole alphabet. "It will pass." No, it's a chronic illness. It can get better, maybe. I could go on and on.

Discussing toxic positivity is awkward. Because I realise all of these things are said with love, with the intention to help, to put a smile on my face. So I don't want to point out that you're actually hurting me by saying this. I often will just smile and nod through it. And I get it, I really do. I too have done this in the past, I probably still do without even noticing. And I also understand that my loved ones also have to adapt to my new life. You don't get a handbook on how to deal with your chronically ill daughter/partner/friend/etc. So that's why I'm posting this, to educate.

Instagram account @unchartedmalady posted a quote a few days ago that inspired me to write this post. "We don't seek solutions or treatments from friends or family. That is what medical professionals are for. We want support, understanding and empathy." This perfectly describes how I feel about this.

I'm in pain, every day. Some days, I get a lot done. Maybe I'm in a little less pain, but that isn't necessarily the reason. I could be excited to do something, I could have rested a lot the days beforehand, maybe I just somehow woke up with more spoons than usual. There are also days where I am not able to do much. There are even days that I can only get out of bed to use the toilet. Maybe this is a really bad pain, but that also isn't necessarily the reason. I could have received bad news, I have just done something 'big' the days before and need to rest, maybe I just woke up with less spoons.

On my good days, I don't need much support. But on those bad days, I need you. And I don't need you to help me. I need to be able to tell you "today fucking sucks, this is why" and for you to listen. Seeing your loved one is in pain is uncomfortable, you will feel the need to say something positive to cheer them up. This might sound blunt, but learn to deal with that uncomfortable feeling. Some appropriate responses could be:

"Do you know what to do on days like this?"

"Have you been able to discuss this with (medical professional)?"

"I am here for you."

"I'm sorry you're going through this."

"Can I help you with anything?"

Something that I personally think is a great alternative to saying something positive is: "I wish there was something I could say to make you feel better." This acknowledges that you want to say something to help, but that you realise there is nothing you can say to help. And also, be honest if you don't know what to say. "That sounds awful, I genuinely don't know what to say." There is nothing wrong with being honest about that.

And to finish this post off, I am not here raging against everyone who has every said something 'toxically positive.' I am here educating about this. It's okay to make mistakes, especially if you didn't know about this. And maybe you will still make this mistake every now and again, that's okay. As long as you're trying. We're all human, we all make mistakes. If you're ever not completely sure how to handle a situation with your chronically ill loved one, please just ask (respectfully).

(Credit for image goes to uncharted malady on instagram. Click here to visit their profile)

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fibrowarriorgirl · 3 years

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Autistic women aren't as rare as you think

Did you know that women are a lot less likely to be diagnosed with Autism Spectrum Disorder? And no, this isn't necessarily because autism in women is just a lot less common. It's because autism in women usually presents itself very differently than autism in men. Autistic women often get misdiagnosed with anxiety disorders and/or Borderline Personality Disorder. And to be fair, anxiety disorders, BPD and ASD all have quite a lot of similarities.

The damage of being diagnosed with ASD later in life is bigger than you might think. I know this too well. For as long as I can remember, I have felt different in comparison to my peers. I could never put my finger on it, but something about me felt different. Not even just different, no, I felt wrong. There had to be something wrong with me.

I remember a conversation I once had with my mum, although I doubt she remembers this. I think I was about 9 or 10 years old. She had just picked me up from school and we were sitting in the car, when I said to her "I'm special, aren't I?" My mum of course responded by saying how special I was because of how kind and funny and smart I was, because my mum has always been my biggest fan. And I remember I quickly stopped her and said "no not like that, I'm weird."

Weird. It's something I've been called a lot in my life. Most times, it was told jokingly by my friends and family. Other times I was being called weird by bullies or by teachers who should've never started working with children in the first place. I've always known I was weird. So when my friends called me weird for taking something a bit too literally, I honestly didn't mind. As a child I liked being weird. Being weird meant I was being true to myself. As I got older, I noticed that being weird wasn't all that it was cracked up to be. Before I knew it, people thinking I was weird became a subconscious fear of mine. Being weird meant I was myself, yes. But it also meant I didn't belong. Being weird confirmed that I was different, special. That I was wrong.

I was about 9 years old when autism was first suspected. I was making repetitive movements all day long. The movements looked a lot like stimming, something that a lot of autistics do. I don't really remember the test they did. All I remember was that I really liked my psychologist, Sarah. We were always in a room with lots of toys. I remember that my mum once explained to me what autism was, and why they thought I might be autistic. She said "autistic people don't see the big picture, they see a bunch of small things." As an example, she said that autistic people don't see a house, they see windows, a door, walls, etc. I told her I wasn't autistic, because I always see a house. In hindsight, it is pretty ironic to see how literally I took that explanation. Taking things 'too' literally, another sign of autism.

A few weeks after that, Sarah told me that she didn't know if I was autistic or not. In her words, 50% of me was autistic and 50% of me wasn't. They ended up not diagnosing me, and referred me to a hospital to see if it wasn't actually epilepsy.

No, I don't have epilepsy. We later found out I have something called Stereotypic Movement Disorder. Which I will elaborate on in a later post.

For years to come, that would be the closest I'd ever come to an ASD diagnosis. I was also tested for ADHD a few times as a teenager, but to no avail. As I grew older, the feeling of not belonging grew stronger. I was always wondering why I felt like such an outsider, maybe it was just all in my head? I was diagnosed with generalised and social anxiety when I was 16, which I thought could explain the feeling of being an outsider. But if that feeling was caused by anxiety, why did I have that feeling all my life?

When I was about 19 years old, I started suspecting I might be autistic after all. I asked my mum what the reasoning was of my psychologist all those years ago to not diagnose me. Apparently, I met all the diagnostic criteria. But because I had empathy and a lot of fantasy, I was not diagnosed. Since then, I have been fighting for an official diagnosis. I wanted to see on paper that I was diagnosed with ASD.

This was insanely hard to do. I tried talking about it to my psychologist, who dismissed me by saying I didn't need another diagnosis. Whenever I tried to tell someone about my struggle with getting diagnosed, I'd often hear "but you don't seem autistic". I'd get asked why I thought I could be autistic. I'd give my reasons and as a response I'd hear "well you might be on the autism spectrum but not enough to be considered autistic."

I was begging people to do a diagnostic test. I needed to prove that I was right about this, and how much it would help me. Even if we did the testing and it turned out I wasn't autistic at all, I could at least let that idea go and go on with my life. It was so frustrating that nobody believed me. My mum and my partner were the only people who actually believed I was autistic when I told them my reasoning.

And then, an angel in the form of a psychiatrist turned up. After only a few minutes of telling her about myself, she asked me if I was ever diagnosed with ASD. This resulted in enthusiastic rambling on my part. I told her everything, how I felt out of place, how I was almost diagnosed, about the repetitive movements, etc. She is the one who ended up setting up a diagnostic exam for me. And this year in August, I was finally officially diagnosed with ASD. The psychologist who did the diagnostic test told me this was one of the most obvious cases of autism he had ever seen.

You have no idea how relieved I was to finally, FINALLY be diagnosed. That feeling of being different, being wrong. No, there's nothing wrong with me. I'm autistic, that's it. My psychologist, who kept dismissing my suspicions, later told me she didn't want to see if I was autistic because she thought I was looking down on myself. Never once have I seen being autistic as a bad thing. It's just who I am, that's it.

Now I live through life, knowing that I am autistic. That feeling of being out of place, something I've had all my life, is gone. I cannot even describe how liberating it is to have that burden to be lifted from my shoulders. A part of me is angry though. I have been begging for years for help with this. And time and time again, I was ignored or dismissed. Often just being told it was some type of anxiety. I also wish that my psychologist all those years ago didn't refuse to diagnose me. I met all the diagnostic criteria, that should've been enough. Imagine if I was told I was autistic when I was 9. What that meant for me, why I felt like I was different, that there was nothing wrong with me.

Please, believe women when they say they think they're autistic. You have no idea how much you'd be helping us.

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fibrowarriorgirl · 3 years

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I love it, so I can't do it

As a teenager, I really liked getting Starbucks coffee. The closest Starbucks was a 45 min travel with public transport away. And you know what, I did it often. Sometimes even a few times a week. I'd often get the question why I would put in all that effort, just to get some Starbucks. I didn't understand why people acted as if I travelled to the other side to the country. All I did was some public transportation travels. Nothing spectacular, right?

Nowadays, the closest Starbucks is a mere 10 minute walk away from me. I can even use the bus, that only takes 3 minutes. But I rarely go, even though some days all I can think about is a delicious white mocha. Why? Because it's too much. A 10 minute walk? Do you have any idea how many spoons that costs me? And I avoid public transportation at any and all costs (more about that in my previous blog post). And it sucks, because Starbucks is a small thing that cheers me up so much. It might sound silly, that a cup of overpriced coffee means so much to me, but it does.

Starbucks isn't the only thing I can't do nearly as much as I would like to. I want to go out for dinner with my partner this weekend. But I can't just come up with that on the spot. I have to make sure the restaurant is accessible to me, which is something I didn't have to do before. I realise that in itself was a huge privilege. But I can't even guarantee I can go. I can't predict with 100% certainty that I will have enough spoons. We haven't got a car, so we'd have to use public transport. We'd have to walk to a restaurant, wait a long time before we can eat and then walk back and get on a bus again. I estimate that whole ordeal to cost between 6-8 spoons. And what if I only wake up with 8 spoons? It's so frustrating to not be able to do the things I love the most.

I have been trying some low-spoon activities. I'm learning myself to knit, which is about 1-2 spoons. Video games can sometimes be a way for me to recharge, and sometimes can cost up to 3 spoons. Watching my favourite show Friends is a great way for me to recharge.

So, what are some of your favourite low spoon activities? What are some activities you can't do (much) any more due to your chronic illness?

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fibrowarriorgirl · 3 years

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Not everyday can be a happy day

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fibrowarriorgirl · 3 years

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HTM, ableist public transportation company

I want to talk about public transportation, specifically about the busses from the company HTM. HTM is the public transportation company of The Hague, which is where I live.

Something you should know about me; I use a walker. Fibro causes such intense pain in my legs, that I need a walker to get around. On days that I'm in less pain, I use a cane. But I always have some type of mobility aid. HTM has never, ever been accomodating to me.

I'll start with an incident of a few weeks ago. I was using my cane and got on the bus. Before I could sit down, the bus driver started driving with full speed. This caused me to fall and hit my knee. I texted my partner about this, and he immediately went to the bus stop I was getting off so he could to talk to my bus driver for me. He angriliy asked her why she didn't wait for me to sit down. Because now I was in a lot of pain because she caused me to fall. Her response was: "Well if she's in so much pain, you should be taking care of her instead of talking to me." We filed a complaint, but nothing came of it.

Another time, the bus driver just didn't let me get off the bus. I had to get off at the next stop, and had to wait 30 minutes for the bus so I could go back to my stop. Filed in a complaint, HTM gave me some story about how the bus driver is only allowed to stop at a designated bus stop and not anywhere else. I think they might have gotten my complaint confused with someone else's. I replied to them that I wasn't talking about that at all. Never got a response.

Today consisted of 2 incidents. I got on the bus today with my walker. Important to know: every HTM bus I have ever used, has an area designated for wheelchairs, walkers and buggies. Right next to that area, are 4 seats for disabled, elderly and/or pregnant people. I walk towards the area for my walker, but before I can put it on the breaks, the bus starts driving at full speed. 2 people are somehow claiming all 4 of the special needs seats, and aren't making any room for me. I was forced to STAND, because I cannot walk in a moving bus and the only seats near me weren't being made available to me.

The second incident: this was on the way back home. I was getting off the bus. Because of my walker, I'm a little slower. Especially because there is a very big gap between the bus and the bus stop. While I was carrying the walker out of the door, the bus driver tried to close the doors on me! I pushed them back open and waited a few seconds before I continued with getting off the bus.

I just can't believe how HTM keeps getting away with this ableism. It's always this particular company that gives me grief. So I am done with filing complaints and getting the same response over and over again. I am sharing this everywhere I can. I don't think the people at HTM's customer service understand how degrading this behaviour is. So I am done. This is what it feels like.

I am asking anyone to please share this post. Either be reblogging here on tumblr, sending it to your friends and or/family or sharing the link on a different social media platform you use. Enough is enough, it's time HTM faces the consequences.

(Image used below belongs to HTM)

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fibrowarriorgirl · 3 years

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Rating different types of fibro pain relief

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fibrowarriorgirl · 3 years

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For family members of someone with a chronic illness: being supportive of us on the bad days is so important!

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fibrowarriorgirl · 3 years

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So, what is the spoon theory?

If you're familiar with any type of chronic illness, you are bound to see some people refer to having 'spoons'. You might have heard someone say "I'm out of spoons today." We aren't talking about literal spoons we have in our purse at all times. The spoons are a metaphor. I too often refer to the spoon theory. So I thought I should post this explanation.

The Spoon Theory was first used by Christine Miserandino. She was out for dinner with her friend, when her friend asked her what it was like to have Lupus. Christine proceeded to grab a handful of spoons to visualise the amount of energy she had each day. Christine gave her friend the spoons, and asked her to describe how she goes through her day. After each activity the friend mentioned, Christine took a spoon away. Some activities took more than 1 spoon. The friend was flabbergasted to see that all her spoons were gone before the end of the morning!

That's what it's like for people with a chronic illness. Things able-bodied people don't even need to think twice about, can be the last straw for someone with a chronic illness. We have to think twice about every single task, and calculate if we have enough spoons for it.

The image below isn't a set of rules. Everyone is different, so not everyone loses and gains spoons the same way. For example, taking pills don't cost me any spoons. This image is just a guide line. And also, it can vary every day. Some days, video games are a way for me to gain spoons, on other days it costs me 3 spoons! This can depend on the amount of sleep you got, how much stress you're in, etc.

For me personally, showering is one of the most taxing tasks. Standing up, bending to wash the whole body, keeping my arms for extended periods of time. And after the shower, you have to dry off. Recently I have been using a chair in the shower, which helps a little.

I know the spoon theory is mainly used for physical chronic illness. But I also believe it definitely can be used for mental illness as well. As someone who has suffered greatly from different types of mental illness, I wish I knew about the spoon theory back then. I do have to say that the fatigue I experienced while severely mentally ill was very different to the fatigue I experience now. I can easily tell if the fatigue I'm feeling is from my fibromyalgia or from my mental illness. The mental fatigue feels like my mind is exhausted, but my body is fine. Fibro fatigue is as if I have done weeks of physical labour and both my body and my mind are exhausted.

I hope this post might help someone who was clueless about this topic. This post is especially for those who are here not for themselves, but for their fibro loved ones.

(source)

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