Letter to Normals

Normally I would just post a link to an interesting article I found, or quote it. But I found this to be right on target. I am going to post the entire article and a link below. This site has a lot of great information and coping advice. It is the Fibromyalgia Network. I belive this relates to those with any invisible illness/disorder/disease.
Letter to Normals: Getting Others to See Your Symptoms

"These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seam like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can't move. With this one it gets more confusing.

Please repeat the above paragraph subsituting, "sitting up", "walking", "thinking", "being sociable", and so on... it applies to everything. That's what a fatigue based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that  one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and an often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end?!) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct. - if I could do it, I would.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chonic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at on point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with fibro then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the internet) between people with Fibro, if something worked we would know.

I depend on you - peple who are not sick - for many things.

But most importantly, I need you to understand me."

(I cut out a few paragraphs as they are more specific to Fibro)

Letter to Normals

As I said last post...It's hard to understand the unknown. It's hard to understand what you've never personally experienced.

I will be walking for the Chiari & Syringomyelia Foundation's Unite@Nite Walk June 16th in my neighborhood. If you are walking Solo (as I am) or interested in joining a team, I have set up Team Chiari-Life feel free to join and help us reach our goal!!
To Donate, Register, or Sponsor please click here:
Team Chiari-Life

Check out DesignsByDayzi for Chiari Awareness items, proceeds go towards the walk!

-Alicia

Social Life

Having a social life with Chiari is difficult. It's really hard to make definite plans. You never really know how you're going to feel.

Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes now...my luck, I'll have to cancel. If I say no now, again, my luck...I could have a great Chiari day. I don't know how I'll feel. I get a look or a response that isn't too understanding. I don't know how I'm going to feel 3 weeks, 3 days, let alone 3 hours from now.

So how do I handle a situation like this? How do I handle being invited places without being able to give a real answer?

"You never go out!" "You never feel good" "Your head always hurts" "You don't have to drink! You can just go and still have fun!"

Ok... These responses come different ways. I then feel like I get these behind my back (I'm not saying this does happen...It's just the feeling I get)
"She never comes out" "Don't bother, she's not going to come out" "She'll have an excuse" "She has better things to do"

Examples...I have situations where I used to be asked to hang out all the time and slowly the invites happen very rarely or stop all together.

Drinking...it doesn't mix well with me. 9.5/10 times drinking kills my head. No a drink will not "help your head" as I've been told many times by random people.

-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in OCMD...my head was killing me while we were in the Sandbar. I had a cup of ice up against my head, this ass walks up grabs the cup out of my hand and mocks me and dumped it back in my hand. -End side note.-

If I'm having a good Chiari day...well theres a good chance I can go and enjoy myself. But as I said, I don't know how I'll feel hours from then. I could get there, enjoy myself, decide to have a drink and well Chiari says F.U. no...then the noise, the lights, the pounding, and the pressure. It all begins.
It could go the same without having a drink on a good Chiari day. I could do the same, go out and have fun. Chiari says you know what? You're letting loose too much. Time to slow down. The noise, lights, pounding pressure begins. Is it some kind of sign that I'm overdoing it? Am I straining myself having a good time? Am I not allowed to have a good time?

Ok I know I hardly ever go out. I know myself. I know how I could feel. Why put myself in the situation? I do want to enjoy life. I do want to see my friends and family. I don't want to sit on my ass all day in front of the tv. Some times that is the easiest.

Others may think this disorder is used as an excuse. But really, it holds us back from a lot of things. If only I knew when and how I would feel. Hell, no one knows when they're going to feel like crap! But most people can get out of bed in the morning and just get moving. For others, it takes us time, it takes a lot of effort to get going.

On bad Chiari days...well I automatically know my answer for hanging out.
Inviting in advance is where the problem lies. It is hard to plan for the future. (Vacations and parties and things like that are a give & take...I'll get to that then) If I'm asked the day of or the night of to go somewhere...I'm more than likely able to give a definite answer.
Chiari comes along with me wherever I go. I can't just leave it at home for a few hours. (I wish)

Making long term plans...well you sort of have to go with the flow. Making plans for vacation...again you don't know how you'll feel. But do you really want to skip out on a week vacation? At least you can lay on the beach and feel like shit? Other sorts of plans...Weddings, Birthdays, etc...you have to do the best you can to make it through to support your friends and family.

Basically what I'm getting at...when you invite someone out with an invisible illness...take into consideration what they are going through. You may not fully understand what they are dealing with and thats ok. If they can't make it out....don't stop asking. If you feel they aren't coming out because of other reasons, talk to them about it. If its the case stated above...try asking closer to time/date. You both may have better luck. They won't feel left out and you'll get to spend more time with your friend again:) You're support is what they need. It helps a lot.

This brings me to the Spoon Theory if you haven't heard of it or read it yet. Please take a minute to read it. This is a great way to explain how someone with an invisible disorder/illness/disease goes through their daily life. Some people have more "spoons" than others daily. Be greatful if you have an endless amount!

Yesterday I had all four wisdom teeth taken out. 2 were impacted and the other 2 just pulled. My mouth is quite sore. I feel like I have lock-jaw. Joe took good care of me yesterday too. He took me in and brought me home all doped up. Then he ran a bunch of errands for me and brought me dinner. Dinner was a large thing of KFC mashed potatoes. YUM! <3 Joe! Today it's pudding and jello. J-E-L-L-O!

Joe & I at the Washington Capitals game.

My sister, Karen, over at DesignsByDayzi has made these awesome zipper ribbon pins. They are now available in her Etsy Shop. She is donating the proceeds to ConqerChiari. She also has some brain lockets for sale! Check them out! If you purchase, be sure to mention where you heard about her!

Comments welcome!

Don't forget to "LIKE" on facebook. You can click the link on the Right or here: MyChiariLife
Keep watch for our next Chiari Carnival coming at the end of the month!

Words

Chiari in words:

CHIARI

Life

Friend

Help

PAIN

Understanding

Alone

Helpless

Stress

Confusion

Headache

Disorder

SUPPORT

Numb

Damage

Surgery

Decompression

Research

Invisible

Reality

Recovery

Symptoms

Awareness

Fear

Anxiety

Purple

Survive

Dizzy

Burning

Pressure

Balance

Restriction

Tension

Sensitivity

STRENGTH

Straining

Loss

Swollen

Vomiting

Insomnia

Endurance

Community

Syringomyelia

Struggle

Different

Spoonie

Frustration

Conquer

Diagnosis

Scared

Hopeless

Brain

Heal

Tolerance

Learning

Adjustments

Change

Coping

It is not just a headache.

Yesterday I had one of my bad Chiari days. I woke up with this pressure pain all over my head. It felt like someone was blowing up a balloon inside my head. The balloon was continually being blown up with nowhere to go and not popping. (Really hard to explain the pain.)
It felt like my blood vessels were going to explode. It was a throbbing pressure that went from the back of my head/neck all the way up through to my eyes. As if someone was taking an icepick to my skull.
I don't get these often anymore. (Thank God!) It lasted all day. A few ice packs and aspirin later...pain level lowered. So I didn't call off work; I knew it was a slow day. I got off work and the pain level went right back up. It was a miserable trying to fall asleep. More aspirin and ice packs. Finally fell asleep. Woke up at 4 AM and it was finally gone (as good as gone anyways).

This came out of nowhere. If only there was a way to predict when these days were going to come up...I'd be able to prepare myself. (Not that it would necessarily help)
I hate that when you say headache it comes with the assumption that it can all be taken care of with some tylenol. A headache? Oh ok that's nothing. It's not just a headache. I want to punch the person who gives me that reply. You don't understand what I'm feeling. You do not understand my pain. You do not take the time to listen to me tell you. Why do you ask me how I am in the first place if you really don't want to know the answer? Frustration.
Anyways...I have always had a hard time describing my head pain. Its a weird pain. What do you do when you are explaining it to someone else?
All chiarians out there... I'd like you to post here with your description of your worst Chiari "Headache"
Don't hold back on your description. What does it feel like when you are having a bad Chiari day?


Oh and Happy Friday the 13th!
In honor of Friday 13th ScaresThatCare is having their $5.00 Donation Day. Click their name to help out sick kids and a chance to win some cool prizes! Learn More Here

My sisters blog on Photography & Modeling :Model Eliza Jayne