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

~^_^~