Facing Fibromyalgia -is this my answer?

This one's a long one, so make yourself comfortable lol

Most people that know me know that I'm sick a lot of the time.

Well, I know they see me bitch about it a lot, but whether or not they realise just how sick I am how much of the time.. well the jury is still out on that one.

I have been sick my whole life. Pretty much since I was born. The doctors don't know why, I just wasn't made right I guess lol

I always knew I had been unwell since I was very little, but it wasn't until I read the plunket diary that my mother kept when I was born that I realised that I've never been "normal" -does that mean being sick is my normal? I sure hope not.

I was difficult right from the beginning. Upside down. And my mother has never let me forget it! C section right before her birthday, happy birthday! 

I had trouble with food and settling -Well of course I did, I had just been hoisted out of my comfy room that I'd spent nine months in.. but things got worse instead of better.

A great deal of my childhood memories are filled with doctor and hospital visits. New medication. More medication.
I think back on it now and wonder if all that stuff played a part in the condition my body is in now.
But.. we'll never know.

I remember routinely having medicine forced down my throat. You feel bad for forcing panadol down your kid's throat every now and then? Try horrible medicine three times a day.

I started to distrust my parents. What kind of good parent would do this to their child? This wasn't happening to my friends.. What had I done wrong? Why did they keep doing this to me? They knew I hated it, and they knew it was horrible.

Things aren't that simple though. I know that now.

To this day I cannot consume liquid medicine. I retch if I even smell cough syrup (try explaining that one to the lady at the pharmacy, it's certainly an interesting experience when you've got the flu and just want to feel like you're not being run over by a truck).

To this day I am terrified of Indian men. When I was younger, at the hospitals I went to, most of the staff handling my case and procedures were Indian men. In my eyes all they did was make things worse.
After all I went through, none of them were right, and none of the problems were ever solved.
In my eyes I was put through torture. For nothing. How could they do that to a child?

I don't know if I'll ever tell anyone about what was done to me in those hospitals. Even those dearest to me.
I don't like to think about it even now. I hope that one day I might forget completely.

Specialist after specialist. Hospital after hospital. Up and down half the country. To try and find an answer.
Year after year things just got worse. Nothing was getting better. I wasn't growing properly.
I also spent a lot of time either on crutches or in a sling. Always fracturing or breaking something. "You can write with your left hand" -that worked out well (not).

There was one fall where they couldn't figure out why I was in so much pain. So many xrays. A cast. Bindings. Three months on crutches at age 8 or 9. Because I was on crutches so long in order to try and sort out my mystery foot/ankle problem, I wore a hole in the heel bone of my other foot.
I didn't even know that could happen.
Several months later, another foot specialist, and the conclusion was I'd had some sort of fracture that for some reason didn't come up on the xrays from the hospital, or maybe it was the docs didn't see it, I don't remember which. Events since meant that my foot had restructured, and it was too late for corrective surgery because the muscle had realigned.
Goodbye athletics.

A theory since is that some of my problems today may be caused from that change, because the structure of my body changed with it.
Who knows. There's so many theories and not so many answers.

Shortly before I started highschool I started to get extremely unwell. I was always tired. Always sick. Always feeling horrible. I remember basically living off crisps and lift (fizzy) because they were the only things that didn't make me feel sick.
I wasn't absorbing anything anyway. I was losing weight fast.

And it turns out after all the shit I'd been through already (not just with my own health), I was about to go through another journey of horror. 

What were you doing at 12 or 13? At 13 I entered CanTeen. Things were just starting to return to something resembling "normal" in regards to my brother. I didn't even get enough time to deal with everything that had happened over the time that he was sick before I was hit with more crap.

For a couple of years my eating had gone downhill. I would feel sick if I ate before 8am. Then I would feel sick if I ate before 10am. Before 1pm. Before 4pm. Soon I was just eating dinner -if that.
Not that there was anybody around at the time to notice..

Once everybody was under the same roof again, meal times were back on the table. 

Yet I was sick, and underweight. And the doctors were worried.
I was referred to see a specialist at the hospital. But he fobbed me off to some lady -which, if I remember correctly, we didn't even find out about till we got there for the appointment.

I don't remember what she talked about up until the point she asked my mother to leave the room so she could talk to me. I remember my mother being hesitant. After all, I was only 12. I was still a child.
I don't remember whether the lady reasoned with her or if I was asked if it was ok, but the next thing I remember is being alone in that tiny room with her.
And suddenly her face changed.
And then she did something I will never ever forget. She asked me why I hated myself.

I was instantly terrified, what the hell had I gotten myself into? I didn't hate myself, why was this woman being so nasty?

"Do you do it because you're being bullied?"

"I..I don't get bullied.." I didn't. There was once, something like a year before, where I had jumped up on the bars and this kid in my class said "here comes the whale!" I kicked him in the crotch (my signature move to this day haha) and went and told the teacher. He must've gotten a hell of a telling off because he was crying when he came and apologised to me. If anything it was my father doing the bullying, and while I still couldn't understand why he treated me so badly, I was long past taking anything he yelled at me seriously.

"How much do you eat everyday? You can be honest, it's ok, I won't tell your parents anything you don't want them to know."
I mumbled something about not eating much because I felt sick all the time, and she immediately jumped on that "why do you limit what you eat?" I told her I don't, I like food, but would you eat when you feel like you're going to throw up?
She was quiet for a few minutes.
"I know what's going on." 

A phrase I would come to be wary of over the years.

"Do you stick your finger down your throat?"
I had a confused look on my face. "Why would I do that?!"
"Do you make yourself throw up? You do don't you, after you eat? You stick your finger down your throat to make yourself throw up."
I think I lost it at that point. I remember yelling "why would somebody do that?! I don't do that! I'm just sick!"

At 12 I didn't know about bulemia or anorexia. After having medicine forced down my throat for years, the idea of forcing myself to throw up was terrifying. And I was here again. Nobody listening. Nobody helping. Everybody just making things worse.
Next thing I know my mother was back in the room. What are you doing to my daughter? What did you say to her? What the hell is going on. 

I was referred somewhere else by the hospital. A child psychiatric unit.
Obviously they listened huh.

When I went in to to see a guy I didn't really like the look of (he looked slimy like most of the other medical "professionals" I had seen over the course of my life) he asked me if I knew why I was here.
I said yes I did, and protested that I did not stick my finger down my throat, and that I liked food, I was just unwell.
He then smiled at me and said "that's not what I want to talk about."
I was confused. Why else would I be there then?
He then brought up a medical issue from when I was a small child and put out the theory that when I had this issue, I had a lot of attention (he made it sound so glamorous. Being poked and prodded, test after test, procedure after procedure, fight after fight, hospital after hospital -I didn't want that kind of attention), and that my brother had had a lot of attention lately hadn't he? And I was just trying to get attention. And I should stop doing that. I should stop being a spoiled brat.

My mother stood up, grabbed my hand, and we walked out of there. I think she laid a complaint. 

I was still losing weight. I wasn't absorbing what I needed to. I had started highschool and I was absent a lot.

Another specialist.
Another test.

I remember waking up from the anaesthetic and wanting to punch everybody who came near me in the face because I was so tired and what the hell do you want -not that I had the energy to do so at the time lol. I need to heal, I'm in this stupid hospital for at least a week, in this stupid hospital bed, I'm tired. Why do I have to wake up? Piss off.

I think I hit a nurse in the face. And yet she still brought me an iceblock with a smile.

The nurses that were on the ward I was staying in were the nicest I had ever had. I drew them a picture, sometimes I wonder if it's still up there.

We were told that I had the markers for a wheat allergy. Think what you will about that, everything has progressed a lot in the last ten years, it was very different back then.

So we cut out wheat. Things improved a little, but they still weren't great. Ok. Coeliac diet then.
Things got better for a little while, but then went downhill again. 

I remember a friend telling me about an exchange with the science teacher one day..
roll call

"Oh. Amber's absent. Again."
"She's really sick, she has lots of allergies"
the teacher laughed "Oh is she allergic to school as well?"
At the time I thought it was a little funny. I look back on it now and think what a rude bastard he was.
I told my mum about it, I think she talked to the principal. Next thing I hear, the science teacher is fired.

Don't make fun of your sick students, folks.

Cut out dairy.
Cut out soy.

Nothing really made a difference.

For several years I was on an extremely strict no gluten diet. I HATED it. And I suffered because of it.
We all know the fads with gluten free diets. Oh gluten is so bad for you blah blah blah.
You know what ladies and gents, we have evolved. We have been eating gluten for quite some time, and chances are you've been eating gluten your whole life.
When you take something like that out of your diet your body has to readjust itself. Sometimes it works ok, but sometimes it doesn't.
I found it harder to concentrate, harder to think, harder to remember things. Not ideal for highschool.

I was told that if I stayed on the strict diet long enough, I would be able to eventually reintroduce a small amount of gluten into my diet.

I was amazed at how good pizza hut tasted. KFC. Hell, I had forgotten how good tomato and cheese sandwiches tasted. Normal bread. My goodness, normal bread. 

Things were ok for a while, not great, but ok. I limited my wheat and dairy intake, if I have too much I get really sick and need several days to recover.

We had a series of massive earthquakes.
Every time there was a significant aftershock, I got a migraine.
Not really ideal for when you're supposed to be working.

No shops were open over our side of town because of the damage. We had a friend take us over the good side of town to get groceries.
I think that's where the latest chapter starts.

I was sitting in the back of the car (I don't really like sitting in the front), and all of a sudden I got a sharp pain in my side. I thought at the time it was just a stitch or something. I knew it didn't really make sense, but I didn't know what it was.

Over time it got worse and worse. It would come and go whenever. Just turn up. For hours it would feel like I had a knife in my ribs. I don't actually know what an actual knife in the ribs feels like, but I imagine it's not far off what I was feeling.
Every breath would hurt. Every movement would bring me to tears.
I'm not a wuss when it comes to pain, I sliced open my finger with secateurs a while back and while the blood started pouring out I calmly said "oh shit. I need you to get me a dry paper towel, and a wet paper towel. Now. Right now." I then proceeded to clean the wound and stem the flow of blood (to an extent), then dressed it. About a week later I think it was, I realised that I should've gone and had stitches or glue put in it, but hey, I haven't even got a scar now, so I must've done a decent job with it haha.

Soon the pain wasn't just on the right side of my ribs, it was also on the left. Sometimes at the same time, sometimes not.
The doctor couldn't figure out why. I was given pain killers.
Also not great for working. High. as. a. kite.

I learned to "function" while on them though. Apparently I still did a good job, so there's that I guess.

Then came the stomach troubles.
I think the first time was when I had a couple of oranges. I was sick about an hour later.
It got worse. Just about anything I ate, I would be sick 20-40minutes later. And it was pretty bad.

In the end soup and bread, or sandwiches was my go to "safe" meal.
Which confused me considering everything else was making me sick, yet wheat was keeping me ok.

More tests. More tests, more tests, more tests. Secondary tests. Double check tests.

I was sick of seeing needles and not seeing any answers. I was sick of being sick all the time. 

"The strange thing about it is that you aren't losing any weight. If you are being physically sick as much as you say you are, I would expect to see some weight loss. Since we're not seeing that, I'm not particularly worried because it would seem that you're absorbing something."

Doctors.

For some reason, he then wanted to focus on my weight, rather than the big issue, and sent me to talk to a nurse at the practice about a healthy eating plan.

Jeeze was that fun. 

She got out this massive binder and I knew this was just going to go to awesome-time central.
Pictures of wholewheat grain toast, bran muffins, muesli.
Stuff I'm not supposed to eat.

And then there was the fact that I didn't eat breakfast or lunch. Boy, was that fantastic conversation.

"What do you have for breakfast?
"I don't"
"...ok... what do you have for lunch then?"
"....I don't."
"....well then what do you have for dinner?"
"Usually I have meat and veges. I like potatoes. So we'll have either steak or chicken and then we might have say potatoes, broccoli, mushrooms, courgettes or yams, maybe spinach.."

"....ok then... well for breakfast, what if you ate a piece of toast with maybe a yoghurt?"
"I don't think I could eat that much."
"What do you mean?"
"Well I don't eat breakfast or lunch because eating early in the day makes me feel sick"
"Well look, if I didn't eat breakfast or lunch, and had meat and veges for dinner, I'd be a lot smaller than.."
I raised my eyebrows at her

"...than that."

I said yeah, tell me about it, I don't know what the hell is going on either.

She went back to the meal plan.
"What about toast then? With an egg?"
"I can't have that."
"Well then what about muesli?"
"I can't have that."
"Well it's not bad you know, there are some nice ones out there and you can put yoghurt on it, that's ok"
"No, I can't have it."
"Well, look. You're not going to get anywhere if you just go "no, I'm not going to have this and I'm not having that". You could put fruit on it, I like to put fruit on mine."
"No, I can't have that stuff, it'll make me sick."
"What do you mean? Because you're not used to it? You'll get used to it."
"No... because I have a wheat allergy......"
"What? ...oh... nobody told me that... well what about.." she flips through the book.. "no.. that's got wheat.. that's got wheat... what about fish?"
"No, fish makes me sick."
"Oh.. well there's really nothing in here for someone like you. What on earth do you eat then?!"
"...fruit and meat and veges..."
"Sounds like you eat better stuff than I do! Are you sure you don't eat cakes and things?"
"No, I don't even like cakes and biscuits."
"Oh. Well then I don't know what the problem is."

Really.

Eventually, through the ADU of all things, I was referred to a dietician. FINALLY. My freaking doctor couldn't arrange this?! But my clinical psychologist could? WHAT.

We went through a number of things, and then I was told that she wanted me to try the FODMAP diet.

Oh my goodness, the FODMAP diet.
I think I lost my mind a little near the end of it. Honestly. My flatmate copped the worst of it. I was always bitching about not being able to eat this that or the other thing, or having a fit because everything contained something I couldn't have.

The biggest ones for me were probably no onion/capsicum etc and no broccoli or mushrooms, or certain fruit.

My heart goes out to people who are strictly on this diet long term. I felt your pain. And I'm so sorry.

Broccoli, mushrooms, and fruit were a big part of my diet. Broccoli and mushrooms especially.

I LOVE fruit and veges. I don't like cakes or biscuits, but I love potatoes, broccoli, mushrooms, courgettes, yams, lettuce, tomatoes, plums, peaches, nectarines, blueberries, raspberries etc etc. LOVE.
Not so much that I would go vegetarian, but still.

I was still really sick, and in fact I even got worse. Everything I ate was making me sick, I had very little time where I was not feeling like I was going to projectile vomit at any second.

Since I was on the diet I tried to make meals like normal but without broccoli, mushrooms, and my normal general herbs/spices.
I gradually started to notice what I was not feeling so bad after, and what was making me feel horrible.
I was taken off it because nothing was getting better, and they were really suprised that I was getting so much worse.
Because, apparently, on the FODMAP diet, you shouldn't get any worse. There might not be a change, you might get better, but you definitely shouldn't get worse. That doesn't happen.
...Does now!

It did do some good though because I identified the foods I needed to cut out (for whatever reason my body has decided to reject them). I no longer eat anything with capsicum, chili, or onion in. I don't eat broccoli, mushrooms, or steak now. And I've come right in that department thankfully.

But that wasn't the end

haaaaaaaaaaaa.

I noticed that I was getting colds more often. I always had a cold. I would have maybe a week where I felt ok, then I had a cold again. Now I'm lucky if I get two days of feeling ok within a month.

And the pain was getting worse.
More headaches. Pain in my joints, pain in my bones. It was affecting my sleep. It was affecting my mood.

It was getting painful and tiring just to go to my disorder groups for 3 or 5hrs (including travel).
It just got worse and worse and worse. Things have gotten so bad that when I walk I worry that my bones in my leg are going to splinter and break. Because that's what it feels like is happening inside my leg. It is that painful. Just to walk ten minutes down the road. Sometimes it starts after only a few houses.
You know that wee knobbly bit on the side of your wrist? Have you ever hit that against the door frame? Or maybe hit your elbow on the door frame or something metal?
That deep excruciating pain is what I feel. In my hips. In my shoulders. In my neck. In my knees. In my feet. In my elbows. In my face. In my sternum. My collarbone.

Not necessarily all at once, but not often individually either.
And there's still the rib pain.

I make an effort to resist taking pain killers. Even when I'm gritting my teeth and screaming while tears stream down my face. Trying to find a position where I will get even a little respite from the pain.

Taking pain meds would be the easy way out. It wouldn't be fixing the problem.

There has to be an answer to why I am in this much pain. There has to be a reason for it. And there has to be something productive and worthwhile that I can do about it.

More tests. More tests, more tests, more tests. A ride home from the staff member who took my blood because she was worried about me.. I didn't do so great after that test.

Eventually my (new) doctor starts seriously looking at something I've never heard of before.

Fibromyalgia

She tells me she would like me to begin medication and physiotherapy.
What can I say? I don't want to take medication, but I can't live like this anymore.
I can't deal with this much pain anymore. People don't understand.

People don't understand that after walking only ten minutes it feels like you've had somebody try to break your legs and rip your spine out. People don't understand that dealing with that much pain, especially hiding that you are dealing with that much pain, is exhausting. And lonely.

Now that 2012 is over and done with, and we're slowly getting further into the new year, I think more towards February.

February might be when my life changes. February might be when I get let down again.

If the therapy and the medication works, that's fantastic, and I am hoping so much that it will...

but then.. I don't want to hope too much..
What if it doesn't work? What if the meds mess me up like the last lot of long term meds I was put on?

What if I'm still experiencing all of this pain three months from now?
I can't have that. I am determined to be even a little better three months from now.

I can't even sit in a normal arm chair without experiencing a great deal of pain.

And I'm sick of it.

So it needs to be fixed.

Wouldn't it be nice if this year was the year that I started to get better?
I think so.

On a lighter note, after pouring my thoughts for today out to you all, I'm going to attempt to enjoy this far too hot for me 26.4C weather (high of 25C? Yeah, what?), watch some anime and delve into some yummy looking cherries I bought yesterday

~^_^~

(O)h.. (C)ue (D)istress!

OCD. You've probably heard about it. You may or may not know what it is.. you may think you know what it is..

A lot of people think that OCD is just about germs, we get that from the movies and tv. They show that it's all about germs, and if you have ocd you use cloths on everything, you disinfect everything, you wash your clothes and yourself a million times a day, and all hell will break loose if you contaminate something of theirs.

Some of this is true to a point.. it is true that there are people with OCD that have the germ thing and are down the extreme end with plastic covered furniture and air purifying systems, but saying that that alone is OCD is super over simplifying, and basically just wrong.

O.C.D.
Obsessive Compulsive Disorder.

Think about obsessions you may have had over the years. Did you have an obsession with food? With weight? With a celebrity? With a movie? With a book? With an animal? With stickers?
We can have many different obsessions.

Mine are order/counting, perfection, over estimated threat, and over-inflated responsibility. ..I think I got all of them lol

I have undergone two rounds of group therapy -it's late, and I'm sick, so my mind is a bit foggy but I can say one of the things we did is CBT. Cognitive Behavioural Therapy. It's a kind of mind training, if you will.
I went through one lot for GAD - General Anxiety Disorder, and the latest was for OCD. GAD is another story for another time.

I'll break down those four obsessions for those who don't know about them.
It's personal for everybody, and what I may focus on for one thing, someone else with the same obsession may focus on something else.
For me...
       Order/Counting - I don't really like things in odd numbers (bar 1). I like things to be in even numbers. It's always been that way. And I like things to be even.
For example.. candy. If you like candy, you've probably bought a bag of mixed candy from the shop right? Say.. jelly beans. Maybe you pick through to get all of the red ones first because they're your favourite.. Maybe you pick through to get all the black ones out so you don't accidentally pop one in your mouth when you're munching on your jellybeans (bleugh!).
Me? I tip the whole bag out. Sort each colour into it's own category, and then count how many there are of each colour. I then take out however many I need to make the number of each group an even number, and then I decide on a number that all the groups will equal. So in the end I might have say 10 jelly beans in each colour group. I then put them back in the bag group by group, and then keep tally as I eat them -usually eating my least favourite first so that I have my favourite for last.
(I assume this last habit is from when I was a child and had to eat all of my dinner and was instructed to eat the things I didn't like first ie cooked carrot, so that I could then enjoy what I liked the most ie mashed potatoes.)
Does it sound like a lot of work? It is. But I never thought anything of it. Sometimes I got annoyed that it took so long, but it was just something I had to do.
If it didn't do it, I'd be left with too many of one, or I'd be left with lots of the one I didn't like, and to me, that was (and still is a little) unacceptable.

       Perfection - Now.. those who know me well probably know that I'm not really a tidy person.
And there are a few reasons for that. One is that I freak out when there is too much clear floor space. I'm not sure why this is yet, I can only guess that it is linked to some childhood trauma (as most things are). The main two though is that I'm a bit lazy (haha) and the significant other to me being lazy is that once I get started tidying, everything needs to be in a specific place.
You may think that if it's everywhere, then doesn't that annoy me too?
Suprisingly no. I haven't got a good answer for why either, and my psychologist cannot explain it.
Basically it's like I've got blinders on. You know how horses wear blinders? Supposedly it's so they only see in front of them and don't get distressed by the other things around them. So think of it like that.
I got in a ton of trouble when I was a teenager and my mum would expect me to put away the dishes cause.. well they were out on the bench! But I never noticed they were there. She'd say to me things like "thanks for putting the dishes away!" and I'd ask her what dishes she was talking about.. because I hadn't noticed them at all. Had I seen them? Of course I must have! But for some reason it just didn't get processed.
There's a twist to this though, because when I'm really really unwell, all of a sudden I notice. I notice the dishes on the bench, the clothes on the floor, the toothpaste in the sink. I notice it all. And then I have to clean it. I HAVE to. Right then. I can't leave it till later.
The dishes have to be stacked nicely (I don't do dishes, that's an explanation for another time), the clothes have to be off the floor, the sink has to be completely shiny and clean. And whatever else catches my eye has to be sorted out.
My main problem with perfection doesn't lie there though. I mentioned that once I get started, everything has to be in a specific place. I'm not remotely kidding. If, for some reason, something can not be where I decided it needs to go, I get very very angry. Instantly. Sometimes I even have "tantrums" if you like, where I get very upset and yell, and swear, and generally just flip tables (metaphorically speaking!)..
Books. Books have to be in either size order, or alphabetical order. It pains me that they can't be both. And I mean that. It physically and mentally pains me that I can't have them in "perfect" order.
Stickers. All grouped, all in nice even lines in the sticker book. I had to give up collecting stickers because it became too much of a problem.
And I guess everything else I do just.. has to be perfect. My cakes, I get very upset if something goes wrong. I prepare well, so I should be able to do it perfectly. My makeup. Dinner. My outfit. My hair. My spelling. My drawings. They all have to be perfect. I am a "gifted" person aren't I? I am extremely intelligent aren't I? I have the ability to perform to a higher standard than most people don't I?
These are the sort of expectations.. no.. orders I was given as a child. I was "gifted". I was highly intelligent. And therefore, I had to be perfect. In all aspects of my life. I didn't have a choice in it. That is just the way it was. Perfect grades, perfect manners, perfect goals etc etc. Not only did I not give an iota of a shit about any of that (I was a frequent daydreamer -mostly about fairies), I have been very unwell pretty much ever since I was born. I hated school, and I hated having to be perfect. Never allowed to waver. Never allowed to show weakness. Failure and weakness was unacceptable. And yet here I am, free from my family and their expectations finally, and still pushing this perfect persona to the forefront of my responsibilities. Makes sense huh? (not).

       Over estimated threat - this is where the contamination thing comes in. It is also part of why I hate unexpected situations and change.
Contamination. There are loads of examples of this straight out of hollywood, and there are varying types and severities of it.
For me, I don't like.. no I hate touching things that other people have touched. This includes things like doors handles, bus poles, bus buttons, trolleys, dispensing machines, even money. In the supermarket I will delicately move aside items from the front to get to the less touched items in the middle. I also do this with things like yoghurt, milk, and frozen foods, because of the contamination factor of not being cooled properly.
And you can count out shaking my hand.
Now, you make think this is a bit ridiculous, it's a bit over the top. And even after all my therapy, I will still tell you I have pretty good reasons for not wanting to touch those things. That's not to say the therapy doesn't work, it has helped a lot, but this reasoning is extremely deeply imbedded in who I am.
People's hands, to me, are walking bacteria breeding grounds. Doctors and psychologists have said to me "but people do wash their hands". I say BULL.SHIT. ...SOME people wash their hands, at best, people wash their hands SOMETIMES. I KNOW that too many people on this planet touch their crotch or pick their nose or cough into their hand and then touch those things. I KNOW that too many people on this planet don't wash their hands after going to the loo.
FUCKING WASH YOUR HANDS WHAT IS ACTUALLY WRONG WITH YOU?!
Who the fuck forgot to teach you that you should be washing your hands after that? Are you just really lazy? Cause that's one of the worst kinds of lazy.
If I'm going out, the last thing I want is for someone's willy, pee, or bum germs to be on something I'm going to need to touch. What if someone picks their nose before they get on the bus (something I actually saw a couple of months ago), and then I touch the same bus pole as they did, and I need to get something out of my eye? Why the fuck should I get conjunctivitis just because some fucknut couldn't wait till they were in the privacy of their own home to go digging for green gold? Why should I get the flu just cause some knob went shopping and sneezed on their hand, then put their hand back on the trolley?
I'm already sick enough. I don't need more of that.
And then people try and tell me that I'm being unreasonable. You can tell I'm very passionate about this stuff lol.
Also if there is a change of plans, or something unexpected happens, I get upset because if things aren't planned properly, then of course things are going to go wrong! While I know this is not true, the thought wriggles it's way to the front of my mind and nags at me, drawing me further and further into panic mode.
So basically that is over estimated threat. I am (supposedly) over estimating the probable threat of something, and then freaking out about it.

       Over-inflated responsibility - Now, this one might confuse people a little bit.. and I wouldn't blame you. As you probably know by now, I don't really like people. I don't really want to explain it because people have a hard time grasping it, and they usually feel personally attacked. It's a bit complicated. So we'll just keep it simple..
While I don't really like people, I feel like I'm responsible in most situations.
It's my responsibility to make sure that things go right.
It's my responsibility to make sure that someone isn't upset anymore.
It's my responsibility to clear up a misunderstanding.
It's my responsibility to make sure that someone is ok if they're say sick or drunk.
It's my responsibility to make sure that the bills get paid.
It's my responsibility to make sure the household is run well ie we have everything we need for food, cleaning etc.
It's my responsibility to organise things.
I could keep going, but hopefully you have the picture by now.
This isn't.... it's not like I'm like "hey don't worry guys, I'll do it! I WANT to do it!"... I actually don't like doing a lot of what I feel like I need to do.. It feels like a huge burden to me. It all weighs heavily on my mind. And when something goes wrong, I feel I am responsible. That's why I often get involved when most others wouldn't. I feel like if there's something I can do to help, I should do it. If I didn't, and something didn't go well, it would be my fault.
Almost six years ago, my little brother died. He was about 10 years old. He had battled leukaemia twice and won. Both times. Even though after the first time, they said he wouldn't get it again.
We fought again. This time was harder in some ways. I was already damaged from the first time. And while that may sound selfish, I'm sure if you knew the full story, you would realise that it's not.
After the second time, he began to get better again. He was allowed outside again, and even home for a couple of days. He went in for some tests. They were administered by an amateur nurse, and that's where everything started to go horribly, horribly wrong. Eventually he ended up in the country's leading children's hospital.
How the hell they got title, I'm still wondering. Because they fucked up big time.
I was a teenager. My birthday was coming up soon.. and yet.. I was in a surreal world. I was in the family home by myself for months. I went and enrolled at a new highschool by myself. "Where are your parents?" they asked... I told them they were up at the hospital. "Will they be able to come in and sign some forms?" they asked, "they really need to" they said. "No. They are not even in the city. I don't know when they are coming back."
I got a call. The call. I got told I needed to go up to the hospital. I needed to go there now. Pack a bag, you're going on the plane tonight.
One plane trip and a long taxi ride later, I was at our accommodation. I was told that my brother was in isolation because of everything. I was ok with that. After all isolation is the safest place for a sick child with no immune system.
The next day I was taken to see him. And I was very confused. "When did he get taken out of isolation?" I asked the doctor.... he replied that he was still in isolation. I kept my mouth shut. I kept my mouth shut even though I knew this wasn't isolation. I knew what isolation was. Isolation was a room completely separated from the ward. With isolation you went from the ward into an airlocked room. In that room you washed your hands and your arms up to your elbows. You put on rubber gloves, a gown, booties, a cap, and a face mask. The room you were in was then purified, and then the door to the room the patient was in would unlock and you could enter.
My brother was in a generic ward. With one sink and some soap near the entrace with a tiny sign saying to wash your hands. And then he was just in a normal private room. I remember standing at the end of my brother's bed, running my hand through his hair as I stared at his doctor in disbelief.
His doctor was standing in the doorway, with the door open, talking to another member of staff.
This was not isolation.
But I kept my mouth shut.
Unsuprisingly, but extremely unfortunately, my brother caught a number of illnesses while in that hospital, and the outlook was bleak, so he was taken off life support. I knew that if he didn't improve, they would turn it off. But they had told me they'd give him a week. Four days later. Half past midnight. While I was holding a glass of wine, sitting next to my (then) boyfriend, wondering, even though it was past midnight, would I get a text from any of my family saying happy birthday? The text I got at half past midnight was not the one I was expecting.
To this day, I feel that it is MY fault. I was only a teenager, but I knew that that wasn't isolation. I knew that he didn't have an immune system. I had learnt all this when I was still in primary school.
But I didn't say anything. I didn't intervene. What if I had said something? Made a fuss? Would they have even listened to a teenage girl? With any luck to simply calm me down they may have moved him to a proper isolation room. And then maybe, just maybe, I would've seen him go to highschool. I would've seen him go on a date. I would've kicked his ass because he tried cigarettes. I would've seen his wedding. I would be an aunty to his children. We'd fight about who was taking mum and dad when they were old, and we would've agreed that our younger brothers would have to deal with it.
But I can't do any of those things. Because he can't do any of those things. Because he's dead. Because I didn't say anything when I should've.

People can say "it's not your fault" all they want. While it's nice to hear, I don't know if I'll ever believe it. It's not my fault that he got more sick, it's theirs really, but in a way it's still my fault because I didn't say anything.
So. After all that depressing shit, that's why I have over inflated responsibility. It has such strong meaning that I can't just turn it off. I can't just not care.
The situation with my brother is also a big part of my contamination issue. If I don't avoid contamination, I'll die and put everyone through the pain of my death. If I don't avoid contamination, it'll be my fault that someone that I care about gets sick -and possibly dies.

OCD is usually taught or it has deep, strong, emotional ties. And that's what makes it such a hard habit to kick. We feel if we follow them, if we give in to our compulsions, that it'll make us safe. We feel that going about our days like "normal" people do makes us unsafe. What do you do when you feel unsafe? You do something to make yourself feel safe. Think of it like living in a dangerous neighbourhood. You go and buy locks for the windows and doors. You feel safer. Our compulsions are like those locks. We avoid mostly, but they can be organising, carrying around disinfectant, carrying around a ridiculous amount of items you think you might need...

I hope that this has helped some people to understand OCD. Put yourself in their shoes every now and then. Think of the terror you might feel if someone was chasing you, or breaking into your house or something. That's the terror they feel when they're confronted with the subjects of their obsessions. You may think it's funny to say things like "oh well what about if there was this or this?" You may find it amusing, but what you're actually doing is stressing that person out. Think about it, if someone was to ask you what would happen if a nightmare that terrified you actually started happening in real life, how would you feel?

Try to understand people with OCD. We're not sideshows. It is a real issue. While I have never felt that I am "missing out" on things in life because of my OCD, many people DO feel like they are. Like they're closed in or ostracised because of it.

Now, that doesn't mean you should enable them. Encourage them to seek help. When they need help, try to give it to them. Someday they may need you to help them challenge their obsessions. It won't be pretty. We call them "experiments". I just about became a sobbing mess in the supermarket one day when I decided right then and there I would do an "experiment" to challenge my beliefs. The only reason I didn't is because I didn't want to draw attention to myself -how ridiculous would it be for me to start crying in a supermarket? What if someone came over and asked what was wrong? How would they react when I told them that it was because I touched a cabinet handle with my pinky?

A lot of the time I still don't like to touch things. I like things to be in a certain order. Sometimes things are just not clean enough for my liking. But I am slowly getting better. I have eaten three blueberries off my own lounge floor, I have touched a bus pole, I opened that cabinet with my pinky, at a new years eve party I gave a few people high fives, and I didn't go into a cleaning frenzy after my mother came to stay and joked that her and my little brothers didn't wash their hands after going to the loo at night.
That last one I did freak out a lot about, but I resisted my compulsion. It still bothers me.

People with disorders and mental illness need support. We may not seem like we want it sometimes, and from my experience, we can be a bit hard to deal with. But we do appreciate the support because it is hard to come by.

If you know someone living with an anxiety disorder or a mental illness, don't be afraid to ask them how they're doing, or what's going on with them, or ask them about their disorder or illness. Don't be afraid to ask if there's anything they need. Once they come out of their shell a little, you never know, they could be completely different to how you thought they were.

~^_^~