Boot in the Back

It's been about 19 weeks, that's over four months of symptoms. 12 weeks since diagnosis. 

I'm doing okay. 

I'm fine. 

But I feel like crying every time. 

I've just come here to talk about the last couple of months. When I first got it, I got it bad. But over this time it has been okay. Mild. Like it's not even there. But there is always something there to remind me that I could any day, any hour, any minute, go straight back to the living hell. Most of the time it's the constant pain in my right arm. Or the aching of my joins, or just not being able to see through my eyes. 

It was over the first week of the school holidays. I was going to go to a retreat up north. I only get one week off course. I ended up not going to the retreat, I stayed home. And I'm glad I did. I spent the entire week in utter pain. Crying before I went to sleep, shaking, and praying to God to take it away. I was all by myself, all my friends were away or busy that week. 

A couple of weeks after that I had the worse back pain, that my hole body braced itself against the table I was sitting at, whilst my body shook out of sheer pain. 

Last night was the breaking point. I had had moderate pain all that week. But yesterday was when it broke. I was doing volunteer work with some friends at the opening night of the National Geographic most famous 50 photos. It was amazing. I almost cried at how beautiful the pictures really were. But while I was there. The pain got so bad it spread right across my body. The pain in my back felt as if someone had their boot in my back and was grinding it constantly. It felt like I was being pushed to the floor by some invisible force. I had a strong pain in my right arm, and my legs felt like they would give way. It was the most amazing night, but the worst at the same time. 

The worst thing is have to look like you are not in pain. To not cry in public. To be brave when that it the last thing you are feeling. This is not a very nice post. But I'm told documenting is  a goo idea... 

But still. I finished making my poster. I got to see the most amazing, moving photos in the entire world. (We were invited at GUESTS to the event. But ended up doing volunteer work, which was just as great!!!) So it was a good day.

Let's Talk Fatigue

This past week or two I have been reasonably well. Which is good. I guess. I haven't been in that much pain, and I will wake up some morning and feel nothing. It doesn't feel real sometimes. But there are something that have not gone away. 

My on going symptoms

• Back pains 
• Limping 
• Fatigue  

Yes. Those are the on going things. I limp almost everywhere I go, cause my hip will be in pain, then my knee will be in pain, then my legs will just be tired. The back pains have not stopped since they started on Anzac day in April... Slow claps... 

But what I really want to talk about it the Fatigue. One of the on going symptoms. 

Fatigue definition: Extreme tiredness resulting from mental or physical exertion or illness.

My mum had made the point that I am not very fit. So my body is not in a very good shape. And that is why I was always so tired. But not this kind of tired. Before I was sick, I would get tiered cause my body was not up to date with fitness. But then I would recover, and have energy to do the next thing. 

Fatigue is where you have NO energy what so ever. And what little energy you have, is sucked dry from walking across the room. A normal person has a battery like in a phone. It is easily recharged. A person with fatigue, is like a normal battery. It dies, and you can never use that battery again. Once you are sucked dry from you energy. You may never have it back till the next day.

Some days my body will feel like it has gone to sleep. And I can only move my fingers, while my entire body has collapsed. 

It is sometimes painful. Having fatigue is not just being tired. It is the kind of tired where your muscles ache with even the thought of moving. It controls you. You can not sleep it away. You can not rest it away. You can't even will it away. 

I thought of the best way to explain it. You know when you are dreaming. And you are running. But your legs are not moving. And although you run, your body is straining, the pain from the tired legs. You keep running, but you don't really go anywhere. Well that is what it feels like in real life.  

I'm just tired of feeling tired. Things like raising my arms above my head, makes me loose breath. After one little thing like that, my entire body has to suffer for it. Like I said at the start. I have been feeling better. Even though it is my monthly and a flu that will not leave me alone. I can think clear, and I am not in as much pain as I had been for a while. My body is taking a break which is good. But I know it has not gone away. I can feel it coming back. I know that it is still there, and I am going to be hit hard it the head. I don't like not knowing when that is going to happen. 

I have crutches now. But I am scared to use them in public. But I know I am going to have to use them at some point... All in good time. 

Learning How to Use My Spoons

That is right. I said spoons. Many of people will be wondering what the heck I am talking about. And to be serious. I had no idea what it meant till only a couple of days ago.

I am still learning how to handle my ever changing life with a chronic illness. It's hard. I am not able to do even little things I use to be able to do. Taking a shower, though nice, I will have to pay for it with utter exhaustion afterward. Just cause I was standing and moving my body for the time I was in there. That is why I take them at night, so that I will just sleep afterward. Things like brushing my teeth, hand writing, drawing, typing, making food. All this is becoming harder as the days go by.
Though I still push myself. I keep on wanting to be able to do what I use to.

Back to spoons. A lady called Christine Miserandino is a sufferer of Lupus. Which is not a very nice disease. I believe it is where your immune system starts to attack your own tissue and organs. It is very painful for the person who has it. One day when she was in collage. Her friend and her we eating out, and her friend asked her what it was like to live with her sickness. And that was when she came up with the spoon theory. (Link to her articular here)

You only get a certain amount of spoons a day. Twelve or maybe eight spoons. (metaphorical spoons) Each spoon is worth something that takes effort during the day. Getting out of bed, that uses one spoon. Getting ready, another spoon gone. This is a system to help you think about how much energy you are going to be using on each move. Making you think deeper and harder about how you are going to carry out that day. Walking to the shops, is it worth the spoon?
These are all life choices I am having to make. I use to walk to the Plazer with my friends from course, once or maybe even twice a day. But I have had to stop doing that. Cause it is using up valuable energy that I could be using to get work done. Also I am finding it hard to walk. I am becoming slower and slower.
Though I'm still learning how to do this. I am so use to living with energy. Today I tried using the spoon method. Then lost count. I get side tracked, when I need to be thinking about the end result of things. But I will get better at this. And one day I will be able to handle my spoons.

Really all you can do when you wake up in the morning. Is drag your but out of bed, and put on a brave face. Freaking smile too. Learning that my body is ever crashing on me, is a lot to take in. Not being able to do things, always feeling tired and in pain, is a heart wrenching. It's hard. But like it says in the bible, there is a time for for crying and a time for happiness.
There is a time to cry. Trust me, I've cried a lot. We all have braking moments. But what I have learnt the most, is you cannot let your condition bring you down. Put on a brave face, smile, be happy, but don't fake it. Really be happy. Through this whole thing, I have chosen to be happy, even when my body is giving me hell.
At youth group when my body is in turmoil. When I'd rather crying, and be mopey. I chose to be joyful. It doesn't make it any better. Because, what would that do for me? Well it would just make others around me miserable.
So that is my long talk. I want to write more. But they are all on different subjects. So will be back with more.

May the odds be ever in your favor... and may your spoons help you on.

100 Facts about Me

I thought maybe it would be best to share a bit about myself. And by a bit. I mean a hundred things. I have done this on my other blog. But I think it would be cool to add an addition over here...

Before I start, I have to say. My body is not being kind to me at the moment. I am avoiding walking at all costs cause my legs are in so much pain. And my back has been in a never ending flare up. Also for the record. I have no idea what they put in disprin... but it is sickly sweet...

1. I am addicted to YA novels 
2. I have this weird things for maps 
3. My inspirational person John Green 
4. The character I can relate to the most is Hazel Grace Lancaster from TFIOS
5. I hardly ever use my phone 
6. It's on my bucket list to run in high heels 
7. I like coffee, and wine (when I can get it...)
8. I hardly ever wear make-up
9. My hair is getting really long 
10. I want to be a YouTuber  
11. I want to take up photography 
12. I want to be a professional at using Photoshop 
13.  Pinterest is a big part of my life
14. I'm often detached 
15. I'm in love with my electric blanket #bae 
16. Numbers jumble when I see them in a math problem 
17. I have perfect eyesight 
18. I want to be a dancer
19. I want to swim with a whale 
20. I quote (a lot)
21. I'm not scared of driving 
22. I was named after a cyborg 
23. I've never gotten below an A in a project
24. I'm going to get ombre in my hair for my birthday 
25. I cut my own bangs
26. I'm like deep water
27. I use metaphors religiously
28. Taylor Swift is amazing
29. I often feel lonely 
30. I internally scream... a lot 
31. I've never had a boyfriend 
32. I'm good at keeping secrets
33. I have my own signature
34. I have an eating disorder 
35. I am pretty good at typing 
36. I want to go to a school ball 
37. I have Fibromyalgia 
38. I'm a writer
39. I'm 17 soon 
40. I want to be a mermaid
41. I like fire
42. If I could do one thing right now, it would be RUN
43. I am yet to find the perfect hoodie
44. I want to jump from a moving train like Dauntless
45. I'm an INFJ
46. My eye color is a lot of colors 
47. I've never smoked
48. I have a wild side (I promise)
49. I want a Russian ascent 
50. I am often jealous of people
51. I love Spotify 
52. The thought of swinging from a chandelier fascinates me
53. I kind of want a pet dragon
54. Chocolate
55. I never cry in front of people 
56. Never been out of the country 
57. Anything glow in the dark 
58. I'm a good listener
59. Cake is nice
60. I'm Batman...
61. I'm also Dory 
62. I cried through out the Hunger Games trilogy
63. I love big Te-shirts
64. Blood makes me sick 
65. I want to go to New York for some reason
66. Goal is to win a Award 
67. I get stage fright
68. I like to sing
69. My TBR has about 60 books on it 
70. I'm tired
71. I have always loved the feel of silk
72. Hardly anyone calls me by my nick name 
73. I came last in every cross country I ran 
74. I'm a pretty good cook 
75. I want to fly
76. I fear Oblivion 
77. I have a Tumblr
78. I also have twitter
79. I think I'm 5.6 (feet)
80. I had a TV in my room once
81. I am a leader in sundayschool 
82. I have to spell "Okay" with an "ay" any other way will drive me crazy
83. People spell my name wrong a lot 
84. I never planned my wedding. And only start to think on the subject this year
85. I cry in just about any book
86. I say SORRY a lot 
87. I like to draw hair 
88. I don't like mirrors
89. I hate the smell of a hospital 
90. I can play sport... I just wont do it...
91. Candles 
92. I own many scarfs. But I never wear them
93. I'm not a huge fan of Christmas 
94. I find it hard to wear bling 
95. Physical affection is not my love language. But it is often the kind of love I crave the most.  
96. I love the song Say Something
97. I play the piano 
98. I was born in 1998
99. I talk a lot some times. Then other times I will say nothing 
100. I'm alive

The Start of my Journey

Dear Friends, Family, fellow Warriors, and People I don't know.

Welcome to my second blog. This is my more personal blog. Where I want to share my journey. I have my other blog Stained Glass Windows, where I share all about my writing, and other such inspiration. It is the love of my life. So take a look... 

I want to start this blog with me. Now I am a lot of things. But first and foremost, I am Rachel. The girl who likes to draw, read, and write stories with deep meanings. The girl who is still looking for God in the hard places. That is one thing I want to make clear. If you take away everything away, you are left with a person, a human. YOU.

Before I tell you the start of my story, I want to tell you the present.  On May 20th I was officially diagnosed with Fibromylgia. (look it up if you may... I shan't go into detail right away) 

It have spent a long time back tracking. Searching for the answers. Looking for where it first started. My story started on April 3rd, this year. I was on camp, we were doing top team. I stuffed up my leg on the water slide. A piece of garden plastic on the ground with dish washing liquid and water. I cramped my leg.  And it stayed that way for five hours. My body had never gone through so much pain before. It wiped me out for the rest of the camp.
Then for the weeks after, my leg still hurt. I knew it was going to be like that. But the pain in the joint never went away, and my legs started to become more and more tired. Walking was becoming a hard task.
Then it was early May that I started to experience back pains. And server migraines. It was round that time that I gave in a decided it was time to go to the doctor. I had a never to forget blood test, in which I almost passed out, and a chest scan for the back pain. All the results came back clean. There was nothing wrong with me. So we went back, and gave him the the list of ever growing symptoms. The doctor checked the tender points, and told us that he thought it was Fibromylgia. (I didn't pick up the word at first.) We took another blood test to test for glandular fever. But that to came back clean.  So that confirmed it... That is just the brief run down.

What does it mean from here? Well, living. Fighting. Breathing.

I will be posting as often as I can. Just about stuff. I really don't know. I'm not feeling all that comfortable about people reading this blog. The posts will be more casual than this one.

May the Odds be ever in your favor... :)