Chronically Ill Queen

Nathanaël | 20 yo | French | Fibro Warrior

[aztoriae]

Taking some time to rest during this chaotic month since my body is starting to rebel against me 🌺

#selfie #me #face #body #tanning #sunny #day #nature #rest #selfcare #spoonie #fibromyalgia #chronicillness #good #vibes #snapchatfilter #tired (à Carcès)

[warriorgoddesswriting]

Why Do You Hide?

“Why do you hide your illness?”

Maybe it’s because people don’t even believe me when I tell them I’m sick.

Maybe it’s because I can feel people become uncomfortable when I talk about it.

Maybe it’s because I’m tired of having to disclose extremely personal medical information to random people. 

Maybe it’s because I’ve had doctors doubt me. 

Maybe it’s because I’ve had people I love doubt me. 

Maybe it’s because I’m looked down upon when I need help.

Maybe it’s because of all of the times it’s been implied that I’m just not trying hard enough to get better.

Maybe it’s because it’s easier to pretend I’m okay than it is to explain that I am in fact in pain this very minute even though I’m out of the house because if I didn’t do anything every time I was in pain I would literally never do anything because I am in pain every minute of every day.

Maybe it’s because I’ve had my sanity questioned when I try to open up.

Maybe it’s because I’m terrified of the harassment I would face if I identified myself as disabled.

Maybe it’s because I know you’ll never understand unless you experience it (and I would never want you to).

Maybe it’s because I’m so freaking sick of hearing the judgment in healthy people’s voices. 

Maybe it’s because society has made me feel that disabled people are lesser than able-bodied people.

Maybe it’s because I don’t feel important enough for anyone to care.

Maybe it’s because I feel like nobody would want to be around me if they knew how bad things really are.

[theminilesbian]

Understanding Chronic Illnesses: Spoonies and Unchargeables.

Understanding and explaining how having a chronic illness affects the lives of those who suffer from them.

[chronicallypainful]

Accommodations don't remove my disability.

Accommodations don’t completely level the playing field between me and my peers.

Accommodations don’t change the fact this speaking math to a computer is at best half the speed of typing.

They don’t prevent my fatigue or help me stay awake in that early morning class (that wasn’t offered at any other time).

They don’t fix all of the inaccessible computer infrastructure or recoup the time that I spend emailing seven different departments about their inaccessible online trainings.

Accommodations can’t remove the stress of asking for extra help or give me extra hours in the day to study.

Accommodations don’t change the fact that, if my peers sleep eight hours a night while I need 10, my peers get an extra 14 hours per week to study or relax.

Accommodations don’t remove the fog that clouds my brain when sensory stimuli overwhelm me.

They can’t stop pain from breaking my focus on my academic work.

Accommodations are crucial, but they don’t remove the effects of my disability.

Accommodations give me a tiny foothold, a place to start, but I still have to climb a huge, icy mountain myself.

[goyphobia-deactivated20250906]

[Takes a multivitamin] Shit. Where’s that energy. Why am I still disabled.

[fibromagic-blog]

Personal Update 27.03.18

I’ve been in severe pain since sunday night and it doesn’t seem like it’s getting better. It’s my second flare this month and on top of that since it’s spring and there’s pollen everywhere my allergies are starting to act up again.

I went to Uni this afternoon because I had a presentation for my British civilisation class. I think it went well but now I’m absolutely exhausted. Also, I hate when people see me suffering and this time I couldn’t hide it. I was limping, walking like a 95 years old and I was basically wearing pajamas but I did have a little bit of makeup on so it wasn’t that bad . My friends were there to cheer me up and were very supportive, I’m so glad to have them in my life!

I have a belly dancing show on saturday night so hopefully, I’ll feel better by then! 

Hope your week is going better than mine!

xoxo, Nath.

[drowning-sunrise]

“Someone else has it worse, don’t worry about me.”

You know what? You’re right. Somebody out there definitely has it worse. Their illness is more debilitating. Their life has had suffering in it that you can’t begin to imagine. They’re in agony. They undoubtedly, incontestably, have it worse. 

But don’t think about them. 

Imagine that someone you love, a sibling, a parent, a friend, or even a pet, was experiencing just half of the pain that you are. Just half. 

Now try and convince me that you wouldn’t drive them to every doctor in that field, no matter how far away. Tell me that you wouldn’t spend hours online poring over articles and forums in an attempt to find something that would make them better. Say that you wouldn’t do everything in your power to make sure that they were as comfortable as possible at all times. Because I know you would. You’d take care of them, because it’s not a measure of how much pain they’re in, it’s that they’re in pain at all. 

Treat yourself with the same kindness. Someone has it worse. Someone has it better. And then there’s you. You deserve all of the love and effort that you would undoubtedly give others. I promise. You’re sick enough. You’re in enough pain. You deserve help. 

[helpfulpoppy]

To my fellow spoonies:

Your pain and fatigue are real.

You deserve treatment for your symptoms.

You deserve knowledgeable doctor(s) that listen to you.

You deserve love and support from friends and family members.

It’s your right to say no to anything that makes you uncomfortable or puts you in pain or taxes you.

[fibromagic-blog]

Fibromyalgia and me : my story

I started having my first symptoms when I was 16. It started with pain in my jaws which prevented me from eating anything that required a little effort to chew. Thinking it came from my teeth, I went to the dentist and had an X-ray. Turns out my wisdom teeth were growing underneath my other teeth and I had to get them removed. The dentist also told me that the pain was possibly some muscular issue. Once my wisdom teeth were out, I didn’t think about it anymore and everything was fine for a few months.

During the summer, after I came back from a trip to Ireland, I started experiencing severe pain in my knees and I was exhausted all the time. As I was working out quite a lot at that time, I thought I might have hurt myself while doing squats. I went to the doctor’s and had another X-ray and a blood check. The x-ray was normal but we found that I had some anti-nuclear antibodies in my blood. So I was directed towards a rheumathologist.

This rheumathologist thought I had either ankylosing spondylitis or rheumathoid arthritis because the pain had spread to all my joints. I had many other x-rays and blood checks. The genetic tests for ankylosing spondylitis came back negative and there were no real signs of arthritis. I started taking anti-inflammatory pills on a daily basis. I was then put on methotrexate for about 6 months.

For a few months I was not feeling so bad, the pain in my joints was bearable except during flare ups. I could still workout 4 times a week. But then, I started experiencing dizziness and my doctor decided to stop methotrexate for a while. I started it again after a month of break but it was still pretty bad. 

When I started university, things got worse. The pain was not only in my joints anymore but had spread to my muscles as well. I was hospitalised a first time and saw a new rheumathologist after experiencing some sort of paralysis on the right side of my body. The rheumathologist told me to stop methotrexate because it had damaged my liver. As for the paralysis thing he told me it was just stress...

But I knew that something was wrong with me. I was hospitalised a second time in a different hospital and a different service. After many blood checks, scans, x-rays and what not they told me I had some anti-muscular antibodies and that I might have myositis.

I spent two years in and out of the hospital, I did tons of different exams and every time they came out normal.

I was in so much pain and completely lost. I went through a period of severe depression and anxiety from which I have been recovering for the past year.

We tried a treatment with immunoglobulins ( which are derived from human blood). I had a lot of side effects but it did nothing for the pain.

In September, we found out that the anti-muscular antibodies were gone, which is good news since it can be associated with many forms of cancer. I have then been directed toward a pain management center and was told that I almost certainly have fibromyalgia.

The pain is still the same. I experience pain and fatigue every single day but I’ve gotten used to the “everyday pain”. The flare ups are still difficult to bear and I don’t think I will ever get used to that.

As for depression and anxiety, I’m definitely out of the severe episode and I’m feeling a lot better now. However, and since I’ve been struggling with these issues for basically my whole life, I sometimes relapse. Thankfully, it is never as bad as it was 2 years ago.

I still see several doctors and a physotherapist twice a week .

I have learned to accept my disability, to take care of myself and to love my body no matter what. It has been a long journey and it is still an everyday struggle. But I try to stay positive and to love myself. I am not at war with my body anymore and I know it needs some extra love, and some extra care!

This is a very brief summary of my experience with fibromyalgia. I will definitely develop some of the things I talk about here later. (Also, if there are any grammar, vocabulary of spelling mistakes do not hesitate to tell me!)

Have a great day!

xoxo

[fibromagic-blog]

Hello everyone! I have decided to create this side blog to share my experience with Fibromyalgia with you. 

My name is Nathanaël, I am 20 years old and I come from a tiny little town in the south east of France. I am currently studying English litterature, language and civilisation at university. I am also a belly dancer, a writer and I am learning how to dance bachata.

I have been suffering from a chronic illness for almost four years now and even though I still don’t have a real diagnosis, my doctors are almost certain that I have fibromyalgia.

On this blog, I want to share my experience with this condition as well as some tips and tricks that I have learned and that might be helpful to anyone who’s suffering with some kind of chronic illness.

If you have any questions or you want to talk about your own experience with a chronic illness my ask is always open :)

You can also follow me on instagram: @suzaikuu

Or on my main blog where I post about different fandoms, aesthetic, fashion, and a lot of other things. 

xoxo