Invisible Illness - What is your invisible fight?

My fight.

I am a chronic migrainuer (learn more about migraines here), who struggles with other chronic pain that I'm currently being tested for, and have been treated for anxiety and depression. Therefore, I have encountered many struggles and obstacles that are associated with all of these conditions.

Why do you fight?

I fight because I don't feel there is much reason not to. It can be the most draining exercise at times, but it's often worth it. I want to be as comfortable as possible, and to ultimately help myself out - making the experiences as tolerable or enjoyable as I can. For I am a living being and I have a limited time to live (human lifespan), and so I'd like to make the best of it. I enjoy many experiences I have had, to grow and enjoy in some way.

How do you fight?

I fight by getting out of bed mostly, and by maintaining a level of stamina whilst also being mindful of my boundaries. Yesterday was a great example. I was very much in a typical postdrome migraine state. Very low mood, zombie-like, dizzy, tired, aching a lot, poor concentration, etc. I wanted to watch Columbo in bed all day and do nothing else. But over the course of the day, I did various things for myself nonetheless. I made myself something to eat quickly, I decided to start learning a little bit of the Korean language (as the brain fog was getting me down, so it was a good feeling to be able to learn even the littlest of things every few minutes I was able to exercise that brain power), I still went to see my friends that evening and had a good time in spite of being utterly exhausted by the time I got back! It picked up my mood a lot - which is what I was hoping for, so it was worth it. Thinking constantly about ways to make myself feel better, to get better, about what I can do to accommodate myself as I ride out through challenging times is a way in which I constantly fight.. without trying to focus directly on it too much!

What do you fight for even when you are tempted to give up?

I fight for myself - to have many experiences, to see how things progress over time (in my life, in others, in the world, etc). Without me, I would have no life. I am, therefore, extremely valuable and will endeavour to take care of myself in the best way I can as a result. I may not be great at doing so at times, but I intend to never leave myself behind all the same. I want to see things, experience things, be able to do things - some I may never do, some I may... and I want to find that out! So I will try to give myself the opportunity to do so as much as possible, by continuing to fight. I feel a duty of care towards myself, I suppose.

What is your #invisiblefight?

My invisible fight mainly has to do with my depression and my self image. I also have an apparent trigger for death, which sounds really stupid, but I get really emotional over any kind of death, even if I didn't know the person. I also fight the loss of my mother, because I miss her each and every single day.

Why do you fight?

I fight because I'm too strong not to. I fight because when life kicks me down, I try to get right back up. I have too strong of a spirit to ever lose this fight, you know?

How do you fight?

I fight with distraction. If something is bothering me, I do something else until it's not bothering me anymore. While that seems like a copout answer, I might as well add that I'm not avoiding my problems, just placing them aside until I'm of the mental capacity to actively fight them.

What do you fight for even when you are tempted to give up?

When I'm tempted to give up, I reach out to friends. They're perhaps even more stubborn than I am, especially when it comes to me. Sometimes you can't handle problems on your own, and you need someone to hold your hand, and tell you everything's going to be okay. That assurance, that is why I fight. Because even if I can't convince myself that I'm okay at times, I have a decent support system to catch me if I fall.

I also fight because I know that whatever I do in the future is going to involve helping people; there's simply no other way around it; it's who I am, ingrained into every fiber of my being. That being said,I continue because I know that it'll be worth it, that I'll be helping people.

My Fight

Dealing with hereditary angioedema along with other medical problems.

Why do I fight

I want to live, I don't think my time is up. I want a better quality of life. I want others to also have the same.

How do I fight

Educating people in the medical field is a big one. It's a huge problem, as the average time to get a diagnosis is over a decade once symptoms have started. For me, it took about 30 years, difficult to confirm for certain when my symptoms really started. At the fastest, it took 29 years. 85% of the time someone has a parent with the condition, so that's ridiculous. Once diagnosed getting appropriate treatment is still an issue. Most doctors do not know what to do with us. We show up to the emergency room and getting our medication, even with documentation, pager numbers and having the medication in hand is a problem. People do die in the emergency room needlessly.

I plan on joining an emergency room education project. I teach my doctors and nurses about this when I have the chance. I hope to do more.

On a personal level I fight the fatigue by doing things anyway. I fought the difficulties of dealing with physical symptoms due to the mental aspect of watching carefully while I move a needle around under my skin to successfully hit a vein with exposure. I fight the fading consciousness that still randomly occurs some days while other times are fine. I fight my attacks with my medication. I fight how horribly I often feel by making huge lifestyle changes. I fight the lowering of my moods, dragging me towards depression due to dealing with all of this by getting out and doing positive things. Finding people to talk to, seeking out support groups even when it means thinking outside of the box. A fibro support group has been wonderful and inclusive.

What do I fight even when tempted to give up

Medication is big. One of my big prodrome symptoms is mood changes and they are never for the better for some reason This means that sometimes when I know an attack is on the way I just don't care to treat it. I fight that anyway. There are days when I don't feel so awful I need to stay in bed (although I have those too) but I still want to. I force myself up and do something even if it's small. That often helps if I have some energy to motivate me to do other things.

Tourette's Syndrome. I'm pretty well at coping with it, but it can be stressful for sure at times. I have, actually, wanted to just give up. I'm so thankful I didn't, or else I wouldn't be here! Thank you for being here, everyone :) I appreciate all of you.

What is your invisible fight?

I struggle with depression. Although I am fighting with it for a decade now, for a long time my family and I mistook it as a part of my personality. I was told that I have anger management issues, that I am just overly sensitive and grumpy, that my mood is a choice, and I should just smile more, should be less critical, should calm down, should try harder - oceans of shoulds, shoulds, shoulds.

For years I didn't seek any help, nor was I encouraged by anyone to do so. I knew a bit about depression, but no one in my circle ever discussed mental health, so I simply thought I am overreacting. I believed I really am this wretched creature I felt with every aching of my bone, because I didn't remember a version of myself without any sorrow.

After painful years on the university, during which I experienced suicidal thoughts and urges, I decided to take an action and save myself. In January 2013 I went to psychiatrist and was officially diagnosed. Ten days after that I told my family. Since that moment I've been in a lot of pain, but never again in such excruciating agony of self-doubt and ignorance.

Why do you fight?

Because I am too fond of life to give up on it. Because there is too many books to read, songs to discover, museums to visit, video games to play, wisdom to learn, to simply stop the fight now. Because there is a whole universe with its beauty that I want to admire. Because I have restricted time to tell my loved ones how much they mean to me. Because I don't have to be limited by the despair my brain evokes. Because I deserve a better life for myself. Because I can and, until drawing the last of my breaths, I will fight. Because I am stubborn and defiant in nature, and that's a good reason as any.

How do you fight?

"It's okay. Everyone's survival looks a little bit like death sometimes." / Andrea Gibson, Angels of the Get Through

What do you fight for even when you are tempted to give up?

Sometimes I will do everything right and still, the darkness will come roaring and I will gave up my hope.

When I feel like drowning, when the void devours me, when I feel so exhausted and want to give in and end it all, I don't. I give myself a time. I do everything to just survive passing minutes and hours. If it requires sobbing in the shower, it's enough. If I have to hide from the world, it's okay. I focus only on taking breath after breath and the moments they bring. I reach out and scream for help. I don't pretend that living is easy for me. It isn't. But it doesn't mean it is impossible.

I fight for myself and my own narrative. I want to tell it on my own conditions only. I am worth this battle. And so are you, my brave friend.

Thank you for reading all the way through, lovely. I hope you will have a splendid day ^^

My Fight

I battle chronic pancreatitis, chronic regional pain syndrome/reflexive sympathetic dystrophy, asthma, gastroparesis, Familial Mediterranean Fever, and a ton of other unexplained symptoms.

Why I Fight

I fight because I'm only fourteen and I have a long life ahead of me, so there's no point in letting the bad things get me down.

How I Fight

I live. I live as normally as I can. I live my life as a healthy person, a healthy person who happens to be sick. I'm not dying, so I shouldn't act like I am. I don't get upset about my illnesses because I know that I'm strong enough to live life "normally," despite the struggles.

Why I Never Give Up

Giving up = giving the diseases the power to take over. They don't deserve that.

What is my invisible illness?

4 years ago I was diagnosed with CRPS/RSD. It has ruined me both physically and emotionally and some days it feels like I can't handle it but I know I have to keep fighting. For those of you who dont know what this disease is, this is the best description I have found to describle the pain we deal with daily:

"I was asked recently at my Doctor's office by a visiting intern, "What does CRPS feel like?" This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question, the detail of your answer depends on who is asking and the extent of interest they have in the answer. If they are asking what is CRPS pain like in comparison to other diseases you give the McGILL Pain Index answer, "CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!" (look for "causalgia" on the chart). If they are asking as a friend and you don't want to scare them away you simply say "It is the most pain I have ever experienced, it hurts constantly."

After all, many patients have already lost a great many friends because of the disease and they don't want to lose more. If they are a loved one you try and protect them. You don't want them to know how bad it is. You don't ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, "I am fine. It is nothing I can't handle." Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more.

I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again. It can actually be difficult to completely let down those protective barriers to reveal exactly how much pain we are in and many times our Doctors, especially new ones, don't realize just how bad our pain actually is.

So, having said that, what does CRPS pain actually feel like? Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better. CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet, eyes, ears; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.

The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia! Picture getting pretty vivid? Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about. Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain, this, in addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer. There are many other symptoms but these are two of the biggest." (http://www.rsdhope.org/what-is-crps1.html)

Now I hope that gave you a pretty good image of the pain I'm feeling and all those others with this life altering chronic disease.

Why do I fight?

I fight because if I didn't I'd be in a wheelchair right now with braces on both my arms. I go to therapy weekly because I HAVE THIS DISEASE THIS DISEASE DOES NOT HAVE ME. When I wasn't going to therapy I ended up inpatient in the hospital under emergency care because I couldn't even pick up a pencil because of how weak I was.I will not go back to believing that I can't get through this disease. This is my fight and I'm determined to win.

I know there was another question but typing is not the best thing for me when it comes to longer forums and it actually hurts quite bad so I am going to leave it at that.