Ylthin

It’s (Almost) Monday ! ~ Fighting Invisible Battles

Hello, my name is Ylthin and I suffer what is called invisible illness. It means that while I usually look fine on the outside, smiling, joking as every other person, I suffer several chronic illnesses that causes me to be on constant pain and to deal with several side effects requiring me to live each day as they come.
This is why my Monday topic happens only today, I didn’t have enough spoons yesterday to write and the heat managed to kill my last “focus” brain cell, making me look at the white page for fifteen minutes without a proper sentence coming out.
Frustrating I tell you. But this is what being me is since four years now and while it’s still hard for me to fully accept it, I came to learn how to adapt to it.


What is an invisible illness, or an invisible handicap.

People view on handicap is generally always the same, someone who has something showing on their outside that they lack of the ability to do what a healthy human being can do. The most classic example is someone using a wheel chair, it’s clear at this point that this person has a handicap and nobody will question it.
Unfortunately, most of people suffer of invisible handicap, would it be mental, physical or both, and while those affect those people’s life, someone unaware of their test result may doubt or question said handicap. Especially when you request a privilege such as being first on the line or having a sit on the bus.

Here is a personal example

I didn’t always needed a cane to assure my balance, but I do benefit of the seats reserved to handicapped people. Once, on a very bad day for me, I stepped in the tram which was crowded, the handicapped seats being taken by four adults around forty-five years old to whom I asked if I could sit. None of them reacted while clearly having heard me and a pregnant woman gave me her seat, which I refused, causing another person to give me their own seat.
The four people I asked a seat to then proceeded to speak rather loudly to how young people were such entitled assholes, forcing those older than them to move and such thing, until I gave them my priority card which finally got them to shut their mouth (even though none of them apologized).

This is one of the problem you face when you suffer from an illness which cannot be noticed on the outside. I can stand up, I have the right amount of limbs and no prosthesis anywhere to be seen which is the case of the large majority of people suffering of a handicap. This is why we’re often saying that we are fighting invisible battles, especially for those, like me, who suffer from a still rather unknown chronic illness called Fibromyalgia.

Me and my Bro.

This was the title of a personal blog I had in the past where I was attempting to explain the struggle to suffer from Fibromyalgia and to be recognized for it. As well as to explain how lucky I have been to have had friends who were suffering from it, so I didn’t spend between 5 and 10 years to know what I have.
In France, we only begin now to consider the idea that Fibromyalgia is a thing and those who suffer from it aren’t simply trying to find an excuse to do as little as they can. Last year, when I filled my handicap help request, they wouldn’t take it in account at all, at least now they do and it’s a big progress.

Diagnosis

Fibromyalgia is affecting each person differently and there are so many possible symptoms that it makes it complicated to diagnose it, for now, the best way to do so is to test the Fibro points and if at least 11 of those are painful, it’s necessary to look for the other symptoms that can be related to it.. Or not. Here is a nice list which sum up most of symptoms, even though you can easily find lists with way more of those, there is even a 150 symptoms checklist available for whoever wanna panic instantly as most of those are pretty common.

Enjoy a part of the list

Treatment

Here comes the really fun part of the Fibro. There is no treatment. We know that some medication such as the Duloxetine has some effect on the pain induced by Fibromyalgia, but doctors and searchers have absolutely no idea why. The idea behind the treatment is to manage as best as possible the pain and the other symptoms, whichever they are, and to encourage the person to see a therapist as it may help to recover from it. But maybe not. Nothing is certain after all.

Living with your Bro

The complicated part of living with such invasive chronic illness is you never know what will happen tomorrow or even in an hour. The only thing you can be sure is you have limited energy, you are easily tired physically and mentally and some tasks which were easy to do a few years ago are now complicated.

Various examples:

  • I couldn’t write this text as yesterday demanded too many spoons and I simply didn’t have any left to write.
  • I usually need two hours in the morning before being able to do anything efficiently, during those two hours, I’m in pain, my body doesn’t react smoothly and by mental functions aren’t at their best.
  • I generally need to nap after taking a shower because showering takes a lot of spoons. Some people need a break after dressing up as well, I’m not at this point but it may happen.
  • If I’m in need to travel, to see my therapist for example, I need to prepare a snack, something to drink and take my cane even if it’s a good day because I know that the return will be hard and painful (and I’ll sleep for at least 3 hours right as I get home).
  • I can’t have a fixed schedule, my life is dictated by my chronic illnesses (fibromyalgia, chronic migraine, lumbar disk decease or PTSD symptoms) and they don’t care if I have an important appointment or if it’s Monday and I intended to write a text about invisible illnesses.

I didn’t write that loooong text to complain about my situation. I have the chance to have been diagnosed rather easily and to have a doctor who is willing to learn more about the illness so we can progress together. I’m also followed by several specialists and medicated properly even though they also come with their lot of undesirable side effects (for example, being under Morphine to handle the pain augments the frequency and the length of my Migraines while at the same time lowers the effect of the medication to stop them).
I wrote it because I had the chance to be part of a community where two people were suffering from Fibromyalgia and told me to have it checked. Since then, I try to educate people about it as they may feel all this familiar or remember of a friend who doesn’t manage to know what happens to them and their symptoms are pretty coherent with the diagnosis.
If I have an advice to give, if you are taking an appointment with a general doctor, take with you some documentation about the tender points and a list of the symptoms where you will already have checked those you suffer from. Not every doctor knows how to handle Fibromyalgia and sometimes the best is to ask to be sent to an algologist if you have the opportunity to do so.

I have no specific question for you this week, only a request: Please take good care of yourself.

Cece09

Sounds horrible what you have and the experiences you have with it. Ive read stories before about other invisible illnesses and yeah its typically the same thing where you aren’t taken seriously and judged. Even when you show proof no one wants to admit what they did since that admits fault and thats never allowed.

I know when I started my lets just call it high school I got Reactive arthritis in my 1st year I believe. Now for the most part you couldn’t really tell at all but every now and then I would start walking weird because it was physically hurting me to bend my knee so I would unconsciously try my best not to move it as much. It was so bad at certain points where I literally couldn’t move my whole body. When it happened in my neck it would lock in place. This is during the time my slurred speech and anxiety kicked in so it added to the bully quite a bit.
I was lucky enough to get over it in around 6 months since its not permanent just a whole lot of badly functioning body parts during the time but I wasn’t getting much help from my doctor. Its not her fault but when you give me a heavily accented foreigner you can’t expect me to understand especially when the writing was ineligible. I will say though something thinned my blood. To make sure it was gone I had to get a blood test but it took 6 tries with the 6th having a machine in to find my 1 and only good vein. Feet should not have needles in them, screw getting a foot tattoo ever

Ylthin

In France we also have the problem that some doctors, for some reasons, think there is a sort of competition between them and use the patient as a tool in their doctor war.
When my lumbar disk disease was diagnosed, my rheumatologist gave me a specific medication so I would stop being in pain. That’s how I discovered that I had an allergy to codeine. Since an appointment with my rheumatologist is 8 months waiting minimum (it’s the best in my district), I decided to take an appointment to a generalist next to my home and ask for a switch to another medicine without codeine.
The doctor I met what the worst asshole I EVER met in my life. He had a student with him, and was making open comment about my appearance and hurting me just for the sake of showing what may be wrong with me, even when I asked to stop.
He then asked me to undress ENTIRELY, in front of him and his student, I refused and only accepted to take off my shirt and without the student in the room. He tried to force me, even though it’s my RIGHT to say no to get undress unnecessarily and I’m allowed to refuse the student to be there as well. It’s a right.
He insulted me, hurt me even more while doing his test, then when we came back to his desk, he said that the rheumatologist diagnosis was bullshit and anyway, he wouldn’t give me any pain medicine.
I avoided that medical center for over a year and a half after, I didn’t even requested to have some physio because it meant going to that place again and meet that horrible man in the corridor.

As for your story, I’m so sorry you both suffered and were bullied. I don’t know where you live and I know that in some part of the world it’s complicated to meet several generalist or specialist doctors, but I found that checking on Internet what it could possibly be, then meet a generalist with a whole list of symptoms properly written (so you don’t stay stuff like “it tickles here when I do that”) helps a LOT to get some help. Don’t tell them you looked for possible illnesses on internet, if they ask, you can just tell them that you looked for your symptoms so you could explain to them the best you can. Also, don’t hesitate to get a letter to meet a specialist to get things checked. Not all doctors will send you to see one, but a lot of them need a letter to take an appointment.
Of course, I hope you won’t ever need those advice, but if it happens again, it will help you to go faster through the medical administration hell.

PS: There are creams to lower the pain, it’s usually used for kids or huge syringe work. You can ask for some to your doctor for that tattoo job.

Formidolosus

So sorry to hear what you are living through! A few people very close to me have similar problems and it’s difficult for any one looking at them to see anything is wrong, so it leads to awkward situations and conversations. I can only imagine how tough it must be! Stay strong.

Ylthin

That’s true that there are days when it’s complicated, but I try to see the positive, I value the good days better than I would have in the past :)
If the people you know have troubles to explain when their energy is low, don’t hesitate to give them the spoon link. Being a spoonie is hard, not knowing how to explain what is a spoonie is even harder as your family and friends may become judgmental and eventually think that you don’t do some activities with them in purpose and ceases to invite you.

ninglor03

Hey, thank you for sharing your story with us! I know it’s not always easy. And I know very well it can be a real bitch living with an “invisible illness” (I like the name :) ). I’m doing so for… well more then 14 years for sure now. Probably though ever since I was born. During school they figured I had rheumatism, which eventually turned into Fybro and now… I’m psychosomatic with depression. It’s just such an unknown field of illness, that even doctors are not too sure what is what and how to live with shit. I had times I couldn’t leave my bed because everything hurt - sidenote: that was my rheumatism time and it ALWAYS occurred when I was super stressed and life was basically too much for me to handle. I had times I had to walk around with crutches because I couldn’t use my legs properly - which was a real pain bc my hands are always the worst tbh. I took a lot of painkillers, but the usual stuff. Never had morphin or such. Until at some point they just didn’t work any more. Right now my body is constantly thinking of new ways to tell my, my live is way too much to handle. Bc being psychosomatic means for me, that one day I might have tons of pain and the next day I can’t see properly or I’m constantly dizzy or I’m starting to have a food intolerance. That normally works until I figure out it’s only my body screwing around with me, so it stops. For a while and something new happens. But the pain is always the ultimate thing for me. When ever things get really really really too much, I’m getting pain. Like everywhere. I sometimes can’t even breath properly bc my ribs hurt. So yeah. Life is a bloody bitch. I’m super sorry to hear you’re having to deal with Fybro. I know it’s really mean and i can be even meaner. The most important thing is, to find a way your life works out best for you. Which sure is not easy at all. (I mean, just look at me. Ten years out of school and I’m still literally no where!) But good for you to have the… card? I assume it’s the same thing like my handicap thingy I’m getting now? Bc although Germany might be a bit quicker with the whole business I had way to many… internal problems to apply.

I’m wishing you ALL the best! Keep us posted, ok? I hope you’ll find a way with less pain and more… happiness! :*
Sry for the block of text ;)

Ps: I totally wanted to share my experience and totally forgot: I had it inside my family. My brother had a though time, with me getting so much attention as teen bc of the whole business. Right, I still get a lot of attention but he moved out and has his live, so there is more distance and he can handle it better. But back at the time… he once complained, that it’s just really hard to understand and he doesn’t really know if I’m really ill or just pretending. If I at least had a bandage wrapped around my head one could see I had something… It hurt like shit. Coming from my own brother. But yeah, I guess it was really rough for him so I’m trying hard to not take it too much to heart.

Ylthin

Alright Nin, you and me need to have “The Talk” and I waited to have slept and recovered a little more to answer to you because “The Talk” is important and should be done when refreshed and having time ,) !

A psychosomatic illness is only a way for doctor to say “I don’t know man, it’s certainly related to your feelings, something that happens in your head and we cannot do anything for it beside telling you to solve your problems”. Basically, it’s saying “hey, can’t help you, see a therapist, bye.”
You should test the Fibro tender points, I bet that they are still really painful and that you suffer from that and that you may be trying to go in a direction your mind doesn’t exactly want you to. Depression is part of Fibro lot, and when you don’t manage to get a grip on something positive, something you WANT to do and are forcing yourself in a situation you don’t want to be, your body is pretty vocal even though it cannot speak.

Did you ever crave of some specific food ? A sudden urge of a banana for example, that’s just your body telling you “hey, I need this to function, give it to me”, and in the same way, it also can stop you from walking. It did that to me for 9 long months.
It was during my nurse’s studies (which of course I had to stop), things weren’t great in my couple, but I didn’t want to admit it, and while beside suffering from irritable bowel and migraine everything else was pretty much ok, I suddenly fell in the middle of a shift and couldn’t stand up anymore. For several months I was seriously depressed, doctors couldn’t find what was my problem because there was no visible issue, it was psychosomatic and the key for the problem to stop was for me to find why I couldn’t walk anymore.
Happens it was pretty much straight forward, deep inside, I didn’t want to continue to live that life, I realized that while I had some affection towards my ex, we both weren’t in love anymore and we needed to move on with our life. When I got it, I slowly could walk again.. Pretty useful to move on literally isn’t it ?

Fibromyalgie is a chronic illness that will never completely disappear and the psychosomatic part you’re speaking about is just your body being more vocal regarding something. The only reason why a doctor would suddenly tell you that you don’t suffer from Fibro anymore I can see is they didn’t know what Fibro was and didn’t want to bother learning, so they just threw all your symptoms in a “psychosomatic” bag to not have to care about the problem. Which is terrible, because people suffering from Fibro need specific treatment like Duloxetine to fight against depression and the pain you endure.
For me, the actual psychosomatic part you’re describing is your body trying to tell you that something is wrong and you need help, and it doesn’t know how to push you to solve the problem so it gives you a lot of symptoms (you’ll note that those are parts of the Fibro symptoms though) so you pay attention to it and find a solution.
What you need is to test the Fibro Tender Points and to print that checklist to see exactly where you are and read this little overview which also explains the medication and why.

One last thing. Do a google search to find a group of people suffering of Fibromyalgia in your district and ask them which specialist you should see. It is extraordinary difficult to be alone to find the right doctor, it takes a lot of time and a lot of bad experiences, but you can skip most of it by asking people with the same experience as you have. Beside, not feeling alone in your suffering and like you’re the only one who doesn’t have a solution will help your depression. Trust me.

FINALLY ! You need to stop thinking that you are literally nowhere and cannot do anything.
Being handicapped close some doors for sure, I cannot be nurse, there are a lot of other stuff you and me cannot do, but it doesn’t mean that every single door is closed. No, it means OTHERS can be opened and we need to think of it in a positive way.
You, me and thousands of other people may not follow the “classic” work-family-house-kids-car-dog cliché. Work is often what makes us feel worthless, because our society is built on the idea that money define how much you worth yourself. Which is complete bullshit. The fact I’m not working is what allows me to write such lengthy message and to educate people about invisible illnesses, it allows me to write, to draw, to read, to think on things others may not be able to because of their tight schedule. What we have is very precious, we cannot work the way other do, but we can use that time to make a difference would it be by creating artworks and writing books, or simply being there and have time when one of your friend is as their lowest.
Please, stop considering that you’re nowhere, you are where you are and you have to mourn the idea that you’re not where you thought you would be and severe that envy you have when you look at what the others can do. Focus on what you and only YOU can do. Focus on creating your own new life including the fact that there are things you cannot do and others you can.
It is hard, there are moments you’ll stay three days in a row in your bed crying because it’s hard, it’s painful, and you can’t move, but the day you’ll be ok, you’ll know that you can make it count. Never forget that for people battling an invisible illness we have to have a double schedule, what we want to achieve and how it has to be adapted every single day.

Don’t give up, find support, find people who know what you’re living and can give you direction so you can surround yourself with medical help and find your own personal life goal. You’ll see, as soon as you’ll make a few steps, you’ll feel far far better.

ninglor03

First off all, I really can’t say when and where psychosomatic came up. I kinda feel like I might have come to the solution, bc some points never really seem to fit with the Fyrbo definition. For example the tenderpoints. Apart from my lower back I don’t seem to be affected by them. And since the pain stopped at some point for the most part, it just… I dunno. So yeah, I’m really not sure if my doctors said it or yeah, I did.

Thanks for the links. Especially the checklist made me doubt again. Bc I have a lot of those things and that is freaking me out right now. A bit. But yeah. I guess I really should see my doc and talk with her again about the whole thing. And try to work out with her what really is going on with me. While I mostly accept, that my life and circumstances are different, I also try a lot to not think about the whole thing and just… well ignore it. I’m aware this is no solution at all, but if I do I’m so overwhelmed by the whole thing, that I just trigger myself into having pain and basically everything.

I do know we have a group in our town. My mum pointed it out to me YEARS ago and I - being the socially freaked out person I am - stored it in my brain and just tried… to ignore it. So it was pretty convenient when it came down to not being Fybro but psychosomatic, right? Ugh, I’m so good in denying stuff.
Yeah, sometimes I really feel the “feeling better” part. Like with my ceramic painting, but I ultimately always reach a point where everything is turning into too much and therefore into stress. It’s like my whole system is against sticking to things and being content with something.
Sry, I’m ranting. Didn’t mean to do that. I still love ceramic painting and I’m excited I might work at the studio. So yay! \o/

tsupertsundere

I had a friend in college who had fibro, and it really fucked hard w/them. I’ve also been deep in the shits myself with invisible illnesses, though luckily with time and therapy and coping I’ve righted myself (largely). My energy reserves have taken a hit, though, and I know EXACTLY where you’re coming from with spoons. (That’s partially why I haven’t been very active in the past month or so)

Thank you for writing this post out; I’m glad to hear that, at least, fibro is being taken more seriously by doctors and hospitals. I hope it leads to better treatment. I know you’re doing your best <3

Ylthin

I wish you weren’t a spoonie like me, but hey, let’s take it positively, I understand exactly what you mean when you say that you lack of energy. I sure would like things to be different, but since I have educated myself pretty well regarding my chronic illnesses I can educate other people. The spoon theory is a blessing that should be shared to anybody who suffers from this specific problem, it’s so hard to explain to your family and friends otherwise, sometimes they even think that you just don’t like them and end to not offer you any more activities together. Lately, I’ve been pretty sick to the point that yesterday I had to take 2x4 hours naps x_X !

Doctors are all different, I met some assholes as much as cool ones, what is REALLY important is to find a doctor you can trust and who trusts you, you can then educate them about your illnesses while bringing documentation. It doesn’t matter if they know a lot about Fibro or any other invisible / rare / not recognized officially illnesses, what matters is they have to be opened to the discussion and accept your knowledge and documentation about those.