Wednesday, December 23, 2015

OWN IT

When you spend as much time alone as I do and when you're in as much pain as I am, you tend to encourage yourself in whatever way makes sense at the time. For example, I'll say to myself "Okay, if I get off the couch and shower, then for the rest of the day I can drink tea and watch tv." It's all about convincing yourself to do the things you need to do and get just enough exercise, in order to rest later. If you do too much, you'll be in more pain, if you don't do anything, you won't be getting the movement you need. It's just a lot of convincing, at least for me it is.


The other day I was in the bathtub and I was feeling really good (emotionally). I had just got some really great feedback on my previous blog post, and I was so happy about it. As I was finishing up, I said to myself out loud, "I'm a freakin' badass," and as I stood up to get out of the tub I go, "Ohhhh gosh." and wince in pain. And then I laughed. For about ten minutes.


I tell you this because in some ways this perfectly describes my life with chronic illness. And a lot of times people tend to say to me, "You look like you're feeling better!" just because I laugh or make a joke. Which is really annoying. It's like, do people really expect that because I have a condition and live with chronic pain, that I should be grumpy about it forever? If I lived my life refusing to accept my illness and constantly living in a state of anger about it, my life would be horrible and a million times more painful. Emotional stress and anguish just exasperates my symptoms. The thing is, the bath tub thing, that is how my life is.


Some days I wake up after getting a good eleven hour sleep, and I finally feel okay for once. I don't wake up with a headache, so I'm off to a good start. I have a coffee or two, I start to get ready. Then out of nowhere the pain starts. And, it's annoying, but it gets to a point where it's so expected that it's just humorous to me. I don't even know if that makes sense to anyone else. But it's kind of like, of course, on the day that I feel okay because I had a good sleep for once, and I'm feeling positive and happy, the pain still joins me. And sometimes the pain is severe, and I need to admit defeat and go relax on the couch or in bed. But other times, the pain is present, but I just want to enjoy the day and do what I was planning to do. Those are the times when I say, "I'm a freakin bad ass." Because really, I am. 


I'm a badass because I'm constantly in pain. I'm a badass because my legs hurt after standing for 5 minutes straight. I'm a badass because I wake up with a headache almost every day. I'm a badass because writing this blog post hurts my hands and my right arm is beginning to feel weak and shake. I'm a badass because these things happen to me like clockwork and I still go on. I still continue. There is nothing weak about that. 


I'm learning to own my illness. Illness often tends to control our lives. But, if you own your illness and you accept it, it can't own you. If you learn how to cope and how to manage your illness, you can keep that bit of control. I've learned to plan  things out according to how my body will respond. I know if I do laundry and clean my room today, that I'm not going to have the energy to go out groccery shopping tonight. And if I do both, I need to plan to relax the rest of the night, and sleep in the next day. I know that if I need to wake up at 8am, I need to go to bed at 10 to feel rested; so I'll have to take a sleeping pill in order to get to sleep and wake up at the right time. These are the things that you learn to control when you know how your body reacts because of illness and pain.


Like I said, I'm learning to OWN my illness. I used to feel embarassed that I couldn't keep up with my friends, I couldn't do the same things at the gym that they do, that my body reacted differently after having a drink at the bar, I got exhausted after something that is so seemingly easy for them. I used to be ashamed and embarassed that I couldn't do it with as much ease, and it caused me to push myself. Pushing myself to a point of more pain, and more exhaustion; which caused anxiety, stress, and a feeling of weakness, which just makes things worse. I have learned that there is nothing to feel ashamed about because I am fighting a battle every single day, every moment. Every moment, I feel pain. I don't have a moment of normal ever anymore. And because of that and how it affects me, I need to own my illness and take care of myself. 


I'm still learning how much to push, and how much to sit back and try to relax. Some days the little things take enormous effort. Some days the little things feel okay at the time, and I pay for it later. Some days taking a walk makes me feel happy and good that I'm able to stretch my legs and get some fresh air. Some days taking a walk, I cry half way through because my legs burn and I want to collapse right then and there. My pain is predictable but also unpredictable. I learn to predict which things will cause me pain, but it's not always easy to know how bad the pain will feel or when another symptom will show up out of the blue. These things, I am still learning.


But the one thing I know for sure is that I am not ashamed of my illness because every day I have a million little victories that I fight for. It's taught me not to take the little things or the big things for granted. It's also showed me who truly cares for me and accepts me for who I am. I've lost a lot of friends over the last few years, and I have moments when I miss them and the fun we had, but mostly I'm thankful that the people that don't care enough to walk through this journey with me have been weeded out. My illness has taught me how important it is not to cast judgements on others. If I were judged on how people see me sometimes from the outside; I'm sure they would assume I'm lazy and unmotivated. But what they don't know is my story. I've learned to not judge people from what I see of their life, because I don't know their story.


Your story is important. Don't be afraid to share it. You never know who it might help or whose life it might change. Don't underestimate the power of sharing your story.

Saturday, December 19, 2015

The Pain Filter

I debated whether or not to write a post today. Today was a long and exhausting day. Not much different from any other day that I leave the house. Except on this day, I didn't cry alone in my room or in the bathtub so I could easily wash away the tears in a safe place, by myself like I always do. Today, the last thing I wanted to do was think about my health issues and especially cry about them. But that is in fact exactly what ended up happening at my family Christmas party. Extended family Christmas party with cousins, aunts, uncles and all. Normally, I'd be humiliated. At first, I felt so embarassed for crying and letting my emotions get the best of me when asked about how I was handling things. But, I'm realizing that just because I cry in front of someone, doesn't mean that I'm weak. Crying isn't weakness. What I really learned today is that I've gone through hell and I'm still going through hell and I am so much stronger than I ever realized.


This is something I don't like to say about myself; that I'm strong. I find it strange for some reason to label myself as strong. Although it's true that I know better than anyone the strength I have had to summon to live through this past year, and especially these past couple of months. I have found a strength that I never knew I had. And sometimes, maybe people don't see it. I made a commitment when I started this blog to be honest and open and try to explain to the best of my ability, how it is to live with chronic pain. For me, writing is an outlet that helps me and makes me feel better. It's also a way for me to feel like I am contributing something to certain people in the world. Because of the commitment I made to this blog, I've decided to be as open as I feel I can be. That includes on this blog, on facebook, on instagram, etc. It bothers me when I know someone is struggling and hurting yet their facebook profile is filled with happy memes, and smiling photos. If you're hurting, that's okay. If you're going through something, that's okay too. Social media wasn't designed for us to express our hurt and our pain. Social media provides this filter that we view other people's lives through. A happy filter, an excited filter, a success filter, a perfect family filter, a relationship-goals filter. But there's no depression filter, no mental illness filter, no chronic pain filter, no disease filter, no hurt filter, no loneliness filter. 


What I'm getting at is that I've had a few people comment that I should "probably keep personal things, personal." Let me tell you this, we live in a world where social media is the norm and we find out that our friends got engaged on facebook through a cute photo or a heart-warming status update. We see photos of people's weddings on our timeline's instead of seeing it after it was pulled out of someone's wallet. We learn of pregnancies through adorable photos that suggest a growing bump, or a pair of excited soon-to-be-parent's. So if this is normal, if this is acceptable, if this is the world that we now live in; why can't I share my news? My news isn't beautiful, adorable, heart-warming or exciting. My news is sad, painful, upsetting, and troubling. But it's honest and it's real. This is my news and I believe that if social media is going to play such a huge role in our lives, that it shouldn't just be a place for the happy filter, but for the pain filter as well.


I am well aware that some people may read this post and shake their heads or just scoff at the fact that this blog exists at all. I am well aware that pain is personal, but so is happiness, so is joy, so is love and family. But we share those things openly, and pain shouldn't be any different. Especially in the case of someone whose life is so constantly affected by it. The honesty and openess that I have maintained throughout this journey on social media has brought me so much hope and so much support. I don't know where I would be if I didn't start this blog, or if my online support groups didn't exist, or if I didn't receive the loving and supportive comments from facebook friends, kind strangers and fellow chronic pain lifers. I guess it's hard for some people to understand, but being in my position, the online community is one of the better places to find support. I just want to be clear, I'm not writing to post to defend myself to those that may think I share too much or to try to convince anyone that what I'm doing is right. I'm just doing what I always do; I'm writing honestly about what I feel. 


If social media is a part of our lives, then I'm going to envoke the pain filter. And that is not a negative statement. 

#painfilter #LetsGetReal

Tuesday, December 15, 2015

Fight Again

"A strong person is not the one who doesn't cry. A strong person is the one who cries & sheds tears for a moment, then gets up and fights again."


For a long time I thought that the pains that I felt were normal. They were my normal. Still are. I think in cases like mine, it takes us so long to realize that there is a real problem and for our doctor's to take it seriously, that getting a diagnosis is a long and gruling process. Which means, getting treatment is a far away dream.


As things have progressed for me regarding my symptoms, I am becoming more aware of the effect things are having on my body. I'm used to the little things, the smaller symtoms. But the big ones, the new ones, are scary and it is hard to accept that right now, this is how  I have to live. I have to live with knowing that I may suddenly lose bladder control. At the age of 22 this isn't an easy thing for me to accept. I have to learn to manage when my arm goes weak and begins to shake and my fingers twitch. I've learned to cope when I get agonizing pains out of nowhere, caused by seemingly nothing, in a random body part. I'm having trouble accepting that my cognitive functions are slowly deteriorating. My mind is slower than ever, my short term memory is horrible, I lose my thought mid-sentence regularly, I forget words, sometimes I even forget how to swallow and it makes me feel like I'm going to start choking. These things have been big, scary, life-changing things.


As you all know, I had an MRI just over a week ago and I got my results back. Completely normal. So far. After going over symptoms and a lot of other tests and what not with my doctor, he informed me that he does believe that my syptoms could very well be caused by Multiple Sclerosis. I guess MS can be active and present but now show up on an MRI for years. The next step we're going to be taking is a referral to a neurologist. I'm not totally sure yet of what this will consist of but it will likely be a variety of nerve tests, reflex tests, optic tests, and lumbar puncture to check my cerebral fluid. 


I was of course hoping for a firm answer; either you do or do not have MS, or you do have something that we can treat. But that is not the case. I've got another maybe. And it's hard to accept the maybe when it makes you feel like your life is in limbo. Although, hearing from my doctor that he does believe MS is likely causing my symptoms has been a bit of a wake up call. Knowing that this could be a life-long problem for me and if it is MS, that it will continue to progress and continue to get harder. I think I handled the news pretty well. I didn't cry or get mad.. I just continued on my day. But the questions and reality of it all is hitting me now and I'm not sure what's next for me.


Over the next little while, I'd like to go forward with a bit of a plan for my life. Right now, my life is basically on hold while we wait for an answer but it's looking like it might be a while until that answer arrives. I'm not sure physically what I can manage anymore as almost everything at this point causes a flare up in pain and spasms. I'm not sure if I can get back on a normal sleep schedule with the intensity of my fatigue and with insomnia it makes that even harder. As you can see, this is all causing me stress and anxiety which makes the pain worse. The vicious cycle of chronic pain. 


I'd appreciate any words of encouragement and prayer and positivity that anyone has to offer. Often times, people aren't sure what to say to someone who is living with a chronic illness or chronic pain. Here is my best advice for those of you who aren't sure what to say: People who live with chronic pain usually struggle to hold it all together, we are normal people who deal with normal struggles like dating and laundry as well. It's okay to ask us how we are really doing, if you really want to know because you care. It means more to me to be able to honestly answer the "how are you doing?" question than it does to mindlessly answer "i'm fine" to the classic "how are you?". My illness, no matter how much I wish it wasn't, is a big and dominating factor of my life -- we need to be able to talk about it and not feel like we're asking for attention or looking for pity. 

If you're looking for something nice or encouraging to say, try something like:
"I'm here for you."
"I'm praying for you."
"Do you want to talk about it?"
Or if you're a close friend and you want us to open up,

"How has your illness been effecting you lately?"
"How do you feel emotionally?"
"Is there anything I can do to help?"


Often times, we're not looking for someone to do our chores or hold our hand at appointments. We're looking for people that we can openly talk about our lives with, just like anyone else, it's just that our lives look a little different than your lives. We experience different types of struggles. But that doesn't mean we should have to hold it all in and not talk about it.


I hope that all of you out there that are dealing with struggles right now are feeling loved and cherished tonight. Thanks for listening. ♥

Saturday, December 12, 2015

A Little Thing Called Hope

Anxiety is frustrating and difficult to overcome. I deal with anxiety regularly and I usually handle it fairly well, but it is absolutely a struggle in my life. As I am waiting on results from a test that could potentially change my life, my anxiety is in overdrive. I'm surprised I haven't gone into full blown panic attack mode yet. I feel it coming though. And because I feel it coming, I'm trying to get the thing out of the way that's giving me anxiety.


A week ago today, I had an MRI of the brain and cervical spine. I was told that my doctor would have the results within the week. My GP's office has had the results for at least two days now. I've called and asked to see if they were in and was informed that they were indeed in, but my GP hasn't looked at them yet. Which is making me even more anxious knowing they're just sitting there in the office, untouched. I've decided to just go to the walk-in clinic tomorrow to get my results. Because that's the best way to get them at this point.


I don't think it's the idea that something might be wrong that is giving me anxiety. In fact, I know that isn't what is giving me anxiety. It's the idea that everything could be completely fine. Because, I am in pain. I know I am experiencing pain. What I don't know is why or what is causing it, or if there even is a cause at all. My anxiety is based around the thought that the results will come back revealing nothing out of the ordinary and I'm not sure what to do next. I've lived with this hopelessness of not knowing what is wrong, but we've run so many tests and did so many procedures without any answers coming up. I know how I will feel if I'm told the results are negative. Hopeless.


I prayed about this yesterday because my anxiety has been driving me mad. I prayed that no matter what happens, that God will help me handle it. Help me to move on and decide what to do next. Later in the evening, I picked up a book my mom had found for me at a second hand store called Pain: Learning to Live Without it. I had automatically been annoyed by this book because my problem isn't learning how to live without pain, but how to live with it. This book so far has been a pleasant surprise. It may be just the thing I need to focus on if the results do in fact come back negative. 


I'm only a few chapters in but already I am appreciating the author and his way of understanding what it is like to live with chronic pain and suffer from Chronic Pain Syndrome. He explains the different views the world has on chronic pain and what a huge epidemic it has become. He also understands that chronic pain needs to be taken seriously; because even though there isn't always a reason for our pain that can be found in a test, the pain is still there. The brain has a pain center, and if that pain center sends out signals, you will feel pain. It's like when an amputee experiences 'phantom limb pain'. They feel pain and cramping, etc. in a limb that has been amputated, or in other words, they feel pain in a limb that is no longer there. Which is kind of like what it is like, in some cases, to live with chronic pain. This is just the start of some of the things I have been reading that have so far, given me a little hope.


I think that what I'm trying to say is that, if the results come back negative, this book is going to be my guideline. Chronic pain sufferers often feel misunderstood because the world views chronic pain either as being caused by injury or disease, a psychological problem or malingering. Which means, it is thought that pain can really only be caused by an injury or a disease or the notion of someone being in pain because it is "all in their head", or the last one "malingering", which means, people think that others sometimes exaggerate or invent pain symptoms to seek attention or financial benefits. What I love about this book (so far) is that the author (Dr. David Corey) completely SHUTS DOWN these views on chronic pain by refering to them as inadequate.


Back in 1664, Rene Descartes developed the Descartes' theory. The theory wasn't completely correct and ended up in a lot of disastrous surgeries involving cutting out parts of the brain that were believed to be causing pain. This was done because Descartes' theory explained that when harm comes to the body a response is produced on the skin, which then sends a signal up through to the body to a "pain center" in the brain. From there, the pain would operate as an alarm bell to warn of damage occuring to some part of the body. After realizing that the theory wasn't fully accurate, more studies were done and theories made. Eventually it was learned that it is possible to have damage without pain, and pain without damage. Descartes was partly right -- a signal is sent toward the brain from the site of an injury. But it is not a pain signal, it is a harm signal. And it doesn't always result in a feeling of pain. 


It explains in the book that the brain is "Control Central", where final decisions are made. Dr. David Corey explains that when you cut your finger, the pain that you feel isn't in your finger, it's in your brain. We perceive the pain to be in the finger because of the way our bodies work. For example, when you see something, it seems you are seeing it with your eye. But, that's only the beginning. The back of your eyeball, the retina, translates the light into nerve signals, which travel to various places in your brain. So, the final act of "seeing" occurs within a part of the brain (the visual cortex). It is similar to this with all of your senses. OKAY, here is where I find things get really interesting in terms of Chronic Pain. It is now understood and accepted that the pain system and the brain are procuding these pain message themselves. Again, like in the case of 'phantom limb pain', the brain produces a mental picture of the limb as though it were still there, and the person feels it there, because the brain is missing the normal sensory signals that it used to receive from the limb. Even some quadriplegics (who have no sensory below the neck) experience pain in their lower limbs.


This, is a direct quote from the book because I won't be able to explain it properly myself..

"When the brain receives harm signals and translates them into pain sensations, they are then pinpointed on the brain's own map of the body. The message the brain applies to the map-site of the injury produces sensations that we feel as pain back where the injury occured. The brain does not send pain signals directly to the affected area. I know it feels as though the pain is "out there", in your toe. But, in a sense, the brain is playing a trick on you. This is just the way the system has developed and it works reasonably well -- except when the pain messages no longer serve a function." 


Alright, I know this blog post is getting ridiculously long but I'm just trying to explain a little of what has made me gain a slight bit of a hope in the case that my results come back negative. I'm still hoping and praying for a real answer, because some things have yet to be ruled out. But, if there isn't an answer that we can find; I know that my pain is valid and that I'm not crazy for feeling it. I can learn to manage it. Hopefully, with the help of this book (Pain: Learning to Live Without It). 








Tuesday, December 8, 2015

Waiting Is Hard

Day 3 waiting on results. Waiting for results is a really brutal form of torture in my opinion. Personally, I feel that we should have the right to know what is going on inside of our bodies. The problem is that we may not understand what we're seeing when we look at a test result; but I think we should get some sort of system figured out so that as soon as the results are in, we are informed. I can almost gaurentee that someone, somewhere, has already looked at my scans and made some sort of a decision. Yet, I am still here, wondering what might be going on in my brain. I get it and I know that some people wouldn't handle it well; some people are terrified there's a chance they could be ill. But when you are already ill and have been for as long as I have, you want all the answers you can get. And when you've been told "The test results were negative," so many times, you start to wonder.. 


The dilemma I'm finding myself having in this waiting period is how I actually feel about the potential outcomes of the results. On one hand, I could be diagnosed with anything from Multiple Sclerosis, a brain tumor, lesions in the brain.. Anything really. Or, the alternative, which is absolutely nothing. Or as the doctor's say "Everything looks normal." Now, to some of you who have never been through a period of illness like this, I would like to state that this next sentence may sound crazy and unbelievable to you.... 


I'm almost hoping that they find something. I know how that sounds. It sounds like I'm wishing for an illness or a disease. But unless you've been in this position, I think it's probably hard to understand. The thing is, whether or not there is a disease or illness causing these symptoms; I AM HAVING THESE SYMPTOMS. I am currently living with these symptoms. Would it be so awful to know why they are happening? I'm at the point where I can comfortably say, any answer is a good answer. Even if that answer is something as scary as a tumor, or something as life-changing as MS. Either way, I will know. I will have an answer. For once.


Anyway, I've tried to take comfort in prayer the last few days and give myself some peace of mind. But it's proving to be quite difficult and I'm constantly waiting for the phone to ring. I'm leaving town for a few days today as well and I'm worried the doctor's office will call with results as soon as I'm gone. All of these things are causing anxiety and worry and it's all messing with my head. I'm glad to go away for a few days and be distracted and enjoy spending time with friends and loved ones. But that worry is and still will be there in the back of my mind. Right now though, I'm feeling so very thankful for the friends and family that are being supportive and just listening and trying to understand how I feel right now. It means so much more to me to have someone listen and try to understand rather than falsely assuring me that I'm okay or that I'll be fine and "I bet the results won't show anything." because, these things, in a situation like this, are not comforting. 


I already know that I'll be fine. I'm fine now. I've been fine for a long time. I could go through hell and back and still be fine. Because I'm used to fighting and I'm used to living in a body that attacks itself. But please, even if you're saying in the spirit of comfort and love, please do not tell me that I will be fine or that you're sure nothing is wrong. This isn't comforting and it doesn't feel like it's being said out of love. If you truly understood and took the time to know how I feel and how these things are effecting my life; you would want me to have answers. You would want me to know what is wrong; so I can work on fixing it or at least managing it. 


So as I continue to wait for results and answers; I just want to remind you all to please consider what you are saying before you say it to someone in a sensitive situation such as this. I appreciate all of the support and kind words; but sometime's the things that you say in times like these, are not comforting at all. I'm a person who likes to know how it is. I like honesty. Brutal honesty. I don't sugar coat things and I like to know what to expect. I like to be prepared and informed. I'm not scared that I may have a disease; I can live with that. I'm scared that I'll go through life without ever having an answer as to why I'm in so much pain. And maybe that seems crazy but I'd rather know what is going on than be left in the dark for the rest of my life.

Saturday, December 5, 2015

Today

Well, today is the the today. Although today feels big, I guess it isn't really. In reality, I will get no answers today. But at least I will be one step closer to possibly having an answer, or at least ruling out a few things. 


Today is the day I have my first MRI of the brain and cervical spine. If you keep up with my blog, you'll already know that I've been having symptoms that are striking my doctor as neurological. We've run every test we can think of the find another diagnois. I've had a laproscopy, colonoscopy, endoscopy, countless bloodtests to rule out other autoimmune conditions or celiac disease. Everything seems to come up negative. So far we've established Irritable Bowel Syndrome and Endosalpingiosis. Neither of which would cause the type of symptoms I am now experiencing. SO off to the MRI I go. In hopes of an answer.


I think I'm having a lot of mixed feelings about today. Many people hear that I'm having an MRI done and say "I hope they don't find anything to worry about." or "I hope you don't have MS." or something to that effect. But the thing is, it's not that I hope I have a brain condition; because obviously it's horrible and awful and painful and a lifelong challenge. But, I have been in pain since I was twelve. I've gone through phases where things weren't as bad. But I've also gone through flares where things are really bad. This past year has been bad, really bad, and then worse. And I've been left in the dark without an answer. Having this MRI is kind of my last hope that maybe we'll finally see what the problem is. But maybe we won't. And that scares me even more.


Either way, the result of this MRI is going to be a huge source of stress and emotion in my life. If I get a diagnosis; there's a whole world of issues to deal with: things to learn, new medications, treatment plans, etc. If everything seems normal: I'll be sent back to living my life in pain without an answer as to why. Which is what I've already been doing, but even more hopeless. 


I guess, over the next few days, I'll hope and pray that whatever happens, I'll be okay. I'll move forward and get stronger and feel better and be happier. Because that would be nice. 

Wednesday, December 2, 2015

A Little Something Good

So today, I experienced my own little miracle and I just feel like I 
need to share.

So, as some of you know, I've been experiencing some pretty scary 
symptoms lately that we don't have an explanation for. Thinking it 
could be neurological, my doctor referred me out to have an MRI 
of the brain and cervical spine. I was told I'd likely have to wait 
four months for the MRI. It ended up being scheduled for February 
10th. Last night, in a moment of sadness, feeling like I had hit rock 
bottom; I decided to try to pray and basically just yelled at God and 
told him that I needed him to show up because it's really been 
feeling like he's not here at all. I bawled my eyes out and just felt so 
hopeless and stressed about having to wait so long to get some 
answers. I ended up flipping through my bible a little and then 
going to bed.

This morning, I woke up and there was a leaf on my pillow. The 
same leaf that is usually tucked in my bible pages at Psalm 23 (The 
Lord is my shepherd..etc.). I thought this was maybe a coincidence 
but either way, slightly comforting. As I was heading out the door 
later, I got a call from the hospital. They were calling to confirm 
my MRI for this Saturday. I made her check and double check 
because my appointment was scheduled for February. She came 
back on after talking to the doctor and said that they decided this 
morning to take all day Saturday to do MRIs and my appointment 
was in fact, this Saturday. In three days. Not three months.

I know to some, this may seem just coincidental but to me, this is 
the moment that has started to restore my faith that God is still here 
and he still cares. I no longer have to wait three long months that 
would have been filled with stress and worry.

I want to encourage you all to remember that even in your most 
hopeless and darkest moments; God still cares. He hears you.

Monday, November 30, 2015

Scared.

Anxiety can be a very life-altering thing. The same goes for depression. Having both, can feel like your own personal hell. On one hand, you care so much and think so much about every aspect of your life and spend time worrying and wondering about what is going to happen and on the other hand, you feel hopeless and desperately sad and have no motivation to do anything that will better your circumstances because you feel there's no point. So, having both is really hard to deal with.

This is what I've been experiencing. It's not even sadness that I feel necessarily. It's the emptiness. My life feels void of meaning. It feels meaningless and hopeless. Which I guess, makes me feel sad, but I don't feel sad I just feel empty. Like I've got nothing left to give, and no fight left in me. I'm ready to just crawl into bed and hibernate in my fluffy duvet and drown my sorrows in coffee and medication. Which when I think about it, I know is awful. I know I shouldn't. But I do. Because, I don't care right now. I don't care that I spend my days in bed and blocking out my thoughts with netflix or with music. The goals I used to have feel too far off and unrealistic and the motivation I used to have is completely gone.

I'm not sure if it's just been such a long time with no answers that has brought me to this point, or if it's the new progression of symptoms and knowing that I won't have answers for another few months. Maybe a combination of the two. I know that I'm scared. That's one thing I absolutely know I feel. I'm more scared than I have ever been. I've begun to get so fatigued that I can fall asleep at almost any moment, surrounded by any amount of noise (which isn't typical of me at all), I experience muscle spasms and stiffness daily now, I'll be sitting on the couch completely still yet my head will start making me feel like I'm spinning as if I'm drunk and trying to lay down; and to me, the scariest of all has been that my short term memory seems to be deteriorating. Today, I was leaving a message for my councellor and I completely forgot my phone number. My own phone number that I've had for years. The number that I call when I'm out and need to get a hold of my mom or dad. The number I write on every form or online application or anything. The number that I should know off by heart, which I know that I do know. But I didn't remember it at all. I literally began talking and said "You can get a hold of me best at 705-64.... Actually, just call me back on my cell phone since you already have that number." Fully, knowing that my cell gets no service at home and he wouldn't be able to reach me on that number. 

I know, that maybe seems like one small thing. A fluke. But this is happening every day. I'll take my meds, then forget if I took them. Or I won't take my meds, because I think that I already did, and end up in pain because I didn't take them when I should have. I'll be mid-conversation and just stop talking because I forget what I was saying or I can't find the word I was going to say. It's small things but it's getting more noticeable every day. And that, makes me scared.

I've been over things with my doctor and in order to rule things out, all of my Rheumatology blood tests came back negative. All the tests we've run have come back with no asnwers. Nothing out of the ordinary. We've booked an MRI of the brain and cervical spine to be done of February 10th. Which is still months away. Which means months of being unsure and scared. At this point, my doctor has decided to refer me to a Urologist and Gastroenterologist to focus on my other symptoms that we may be able to get some answers about while we wait for the MRI. But the MRI, is going to be done because there is suspicion of something neurological going on.

*Sigh* 

Unfortunately, yet again, I've got nothing happy to end on. I wish I did. I wish I felt happy and positive. But I'm scared. I appreciate any well wishes and prayers that anyone has to offer. I hope that soon, I can find some positivity and hope and answers. Thanks for listening. 


*ALSO, just realized that my last blog post was also titled "Scared"...... sorry.*

Saturday, November 14, 2015

Scared

Since my last blog post I have been avoiding writing another because I had a feeling that I would just break down and cry. And I don't really feel like breaking down and crying. But maybe I just should.

As I mentioned in my last post; I am experiencing some new symptoms that have been quickly progressing and that have been scaring me. I've got a ton of weird things that happen on the regular in my body and I'm used to them, so it's not scary to me. It's my normal. But this, is not my normal, but suddenly it's here and it's very prevalent and it's scary. I think the scariest thing has been that I don't know what is causing the issue. Personally, I am an overthinker. I overthink the silliest and most mundane things. Like, my thought process of whether or not I'm going to shower before bed takes a good fifteen minutes. If I shower, my hair is going to be wet and I might wake up with crazy bed head. Also, my head will be cold while I'm falling asleep and it will make my pillow wet. But if I don't shower before bed, I'll have to wake up an extra fifteen minutes early to shower. But I'll actually have to wake up even earlier in order to sit and have my coffee first. And then I won't get enough sleep and I'll be grumpy. THIS IS ACTUALLY HOW MY BRAIN WORKS. Usually.

So the thing is: when something is happening to me or going on in my life I like to know why it's happening. I need answers and explanations. All of these things are happening to me and I have absolutely no explanation for them. The things that are happening are the kind of things that end up making you feel like you're going legitimately crazy. I actually have felt seriously mentally unstable. This could be explained by so many things but likely, it's being magnified by the fact that I'm stressed and dealing with anxiety and depression. Which all of those things are being magnified by the fact that everything is unanswered. It's a vicious cycle. Anyway, because of all of this, I've been thinking and overthinking. I know that I won't have an answer for another four months or maybe even more. But I feel like because things are progressing so quickly and changing so suddennly that I need to know what the possible outcomes might be. I want to know if this will continue happening, can it be stopped or prevented, is this something that I'll have to live with for the rest of my life? I want to know these things.

If I were you reading this right now, I'd likely be wondering what about this makes me feel like I'm going mental. I'll try my best to explain myself. Do you ever have one of those days when you wake up and you just feel off? You don't feel like yourself. Maybe it's because your coffee didn't taste right or you didn't get a coffee and you usually do, maybe it's because you barely slept and have a massive headache and can't function normally, maybe it's because you had an anxiety attack and are feeling emotionally drained. The last week especially, I've had that feeling. I just don't feel like me. I am ridden with anxiety, I'm weepy and crying, I have a constant headache, I am completely exhausted one hundred percent of the day, I'm irritable and grumpy and impatient. I feel like yelling at everyone about everything. I feel like I'd rather just stay in my bed all day long and not talk to anyone, see anyone, or think about anything at all that has to do with reality. But being alone just brings out the reason why I feel like this. My body is acting seriously strange.

It's hard to avoid thinking about what might be going on with you when every other minute a different body part is spasming and half of your face is tingling and burning like you have pins and needles in it. All the while being so tired you feel like you can barely roll over. It makes you wonder what could be going on.

I've explained this the best that I can. Not feeling like myself is taking a lot out of me. I don't want to do the things I normally do. I feel like I don't even care about the things I normally care about. I'm scared and I don't think that will change any time soon.

Tuesday, November 10, 2015

Human Stress-Ball

Since yesterday I have been on quite the emotional rollercoaster. I have been meaning to write this blog post since I got back from my doctor's appointment yesterday afternoon but instead I tried to de-stress by working out. I ended up bawling on my bedroom floor on my yoga mat. (Just so you know world, exercise does not relieve stress for everyone)


Anyway, if you're wondering why I broke down and bawled instead of working out I'll tell you. But first, we're going to have to go to the beginning.


Well, not the actual beginning but the beginning of this story.


I am in the process of applying for Disability. I am not currently working so that I can focus on my health and get some answers and treatment, etc. Which leaves me feeling very poor and sad and not at all independent. But, it's something I need to do right now. Applying for a disability is a very stressful process, especially when you do not look disabled. When your disability can only be seen when someone slices you open and looks inside, it is not easy to get Disability Benefits. Therefore, I've been pretty stressed. 


I had an appointment yesterday with my general practioner so we could go over my Disability Application and to yell at him a little about not fixing me yet. Because sometimes doctors are stubborn. My doctor, can be a very good doctor, but my doctor also tends to put 'bandaids' on bulletholes. In my personal experience with  doctors (which is A LOT of experience), a lot of doctors tend to treat a symptom and not the cause. Which really bothers me. If you would treat the cause, the symptom would likely be eliminated or at least not be as bothersome. But instead, they treat the symptom with some medication that leads to more symptoms. And it just sucks. I'm getting off track though.


SO, I went to the doctor's office so I could go yell at my doctor a little. And I ended up crying. Because I'm a human stress-ball at the moment. And when I'm stressed, I cry. Anyway, I think the crying helped because I now have a supportive doctor and many tests coming my way. Sometime's I think a doctor needs to see how much chronic pain affects someone emotionally to understand that something needs to be done. 



Something I haven't opened up about yet is the fact that I'm developing a lot of new symptoms that do not seem to be at all related to Endosalapingiosis. Because of these new symptoms I was sent yesterday to be tested for Celiac Disease and to have a Rheumatology Blood Screening. I'm also being referred to a neurologist and being scheduled for an MRI of the brain, neck and spine. Unfortunately, the symptoms that I have been experiencing have been quickly progressing and are mirroring the early symptoms of Multiple Sclerosis. 


I want to be clear and say that I am not diagnosed with MS. But it's now something that my doctor feels the need to look into. Ruling out MS or getting a diagnosis of MS is not a quick process. It will take about four months just to get an appointment to have the MRI done. So, I won't have any answers likely until February or March. I'm hoping and praying that there is another explanation for these symptoms. But we need to cover out bases are get some real answers. That's what this time off from work was all about. Answers. 


I guess now you probably can understand why I broke and cried on my yoga mat in my bedroom instead of working out. A mix of emotion and frustration. A big thing though that is contributing to these emotions I've been experiencing is the new symptoms I'm having. Feeling like you're not in control of your body is a really scary thing. Imagine laying in bed at night trying to sleep and suddenly you're wide awake because your hand just decided to clench into a fist over and over and over again and you didn't tell it to. You need to choose to tell your brain to act and when it acts without your consent, it's a pretty terrifying experience. 


Again, I'm really hoping there is some other explanation for these symptoms. But we need some answers. And that takes time. Over the next few months I will try to keep you all updated to the best of my ability. I appreciate any well wishes and prayers you have! Thanks to everyone who has shown their support.

Wednesday, November 4, 2015

Waddling Like A Penguin

I've started something new over the last few days and I've decided to share my experience so far because it's a topic that I think can be a tough one for those with chronic illness or pain. 


When you live with chronic pain, the every day tasks that we do can be daunting. We know it's going to be painful and we'll have to push ourselves just to do the regular things we do. Many of us end up losing the body we once had, we lose muscle and gain weight. It's a natural process when you aren't moving as much because you're in pain and when you're in pain (especially during a flare) the last thing you want to do is stand for 2 hours to make a nice home-cooked healthy meal. Many people with chronic illness end up being over weight. Which adds a whole other level on to our pain and our health.


If you regularly read this blog you'll know that I've made some changes in the past month or so including seeing a councellor, taking a break from work, pursuing new doctors and looking for a proper diagnosis, etc. One of the changes that I have been trying to make for a long time (over a year now) has been to get back into good physical shape. I know that I will never be that "healthy-healthy" person. It's not me. I hate working out. I would much rather eat a poutine than a salad. I would rather lay on the couch and watch netflix than go to the gym. BUT, in my time of change, I have decided that right now is the perfect time to challenge myself. What have I got to lose? 


The challenge I have given myself is a little something called The 21 Day Fix (this is in no way advertisement for the program, I'm just recalling my experience thus far). I had already made a change and begun eating better. I added more vegetables and would prepare them ahead of time so they were ready to go when I was hungry, I added more healthy protein and was making fruit smoothies with spinach every morning. My dad saw me making these changes and ended up ordering The 21 Day Fix for me. I was nervous when it first arrived. This box full of these colourful little containers staring me down and a work out DVD with Autumn Calabrese on the cover looking completely jacked. But, I decided to give it a try.

One thing I will say, if you decide to start the 21 day fix: Pick a time when you will have as little disturbances as possible in your schedule. If you are new to working out or haven't worked out in a while, or if you have chronic pain, you will be SORE. My first workout was three days ago and my legs and glutes are still burning. I am actually waddling like a penguin. And don't even get me started on stairs. BUT the good thing is that I know that I'm working and pushing myself. My muscles are feeling it and I am doing something good for my body. And maybe, if I experience this pain now willingly, I will experiences less chronic pain that is usually worse and lasts much longer and is completely unwilling (hopefully!). But back to my point: make sure you pick a time to start when you know you will be able to commit. COMMIT. You might want to quit when it starts hurting just to sit on the toilet because your legs are so sore.

OKAY, So it's day three now for me and other than being sore: I'm feeling good and really encouraged. I also feel determined which I haven't felt in a long while. I've already lost 2 pounds! Physically I cannot see a difference so far but it's still super early. I think the physical differences will be an even bigger encouragement though. Something that always ends up screwing me over when it comes to healthy eating is CRAVINGS. I like bread and salt. A lot. The 21 Day Fix has a meal plan that allows some of those things in moderation which I find amazing. Over the last two days I haven't felt hungry the entire time. It includes a lot of protein to help you build muscle and to keep you full. It also allows for one small amount of healthy fat a day and 2 smaller containers of "carbs". For example, I used my carb container yesterday to crush up multi-grain tostitos and used them in my taco salad! You will not go hungry and because you aren't depriving your body of some of the foods that it's used to -- you're less likely to get cravings that will throw off your diet.

I think I'll keep you all updated on my 21 Day Fix journey as I go but so far I am loving it! It is important for us to push ourselves sometimes even when it hurts and even when we're scared to do it. Something that helps me when I'm nearing the end of a work out and feeling like I can't go on I think of the reasons WHY I'm doing this..


Reasons Why I'm Working Out and Eating Healthy:

- To feel better physically
- To not have my heart race just from walking up the stairs
- To be proud of my body and what it can do every step of the way
- To love my body more and take care of it
- To control whatever aspects of my health that I can
- To feel GOOD mentally and physically
- To look in the mirror and love what I see


etc.


If you're working out or starting to, making a list like this can be super helpful and motivating. When you remember WHY you're doing it and what a huge difference it can make when you commit; it'll help keep you going and stay on track.


Thanks for listening! Wishing you all a pain-free day!

Wednesday, October 21, 2015

A Personal Challenge

Loving yourself is a freakin' challenge.

I wasn't going to write a blog post about this but the more I think about it I think that if people know that I'm trying to "eat clean", I will be more likely to stick to it. I know some people get annoyed when people post pictures of their healthy meals on Instagram and their work outs but I honestly think that Instagram can be such a good tool for inspiration and motivation. I know personally, it's the little things like posting a picture of the delicious meal I just made that keeps me going and keeps me excited.


I had no intention of starting a "challenge" but I've been doing some thinking. For a while now, I've been trying to lose weight. Right now, I am at the heaviest I have even been and for my height and actual body size I am probably carrying quite a few extra pounds. Exercise is not always an option when you're living with chronic pain. We try, but it's even harder for someone with chronic pain and chronic fatigue to exercise than it is for a normal person; and even for a normal person exercise isn't easy. I started to realize that I might just have to get used to the fact that my body won't be the same as it used to be. In order to start accepting this I decided that I needed to love my body just the way it is. When I began to do this I stopped all the negative self-talk, I got rid of the clothes I had been waiting to fit back into again one day, I bought new clothes in the right size that are flattering and make me feel good and I took advice and tips from women all over the world who love their bodies and accept themselves. 


Except, I started noticing a trend.. Most of these ladies who have all of this confidence and love and acceptance of their bodies were these ladies that were taking care of themselves. By taking care of themselves, I don't mean doing hard-core work outs at the gym every day and eating a strict gluten-free, dairy-free, sugar-free diet. I mean these women stopped the negative self-talk, they try hard to eat their fruits and vegetables and proteins, they try not to indulge every day but still treat themselves when they want to. These ladies don't even necessarily go to the gym. These ladies just care for themselves by eating the food that will nourish their bodies, and getting the exercise they need by doing small things each day. 


These are the women that have inspired me. Take for example Demi Lovato. Demi is a young women who has struggled with mental illness and self acceptance for years and has been very open about her journey. Over this past year or so she has documented her journey to a healthier lifestyle. You can see the difference physically, but she also talks about how mentally she feels so much better and happier. She chose to stop hating on herself, she chose to love her body and to take care of it and it made a world of difference.


I think that it's so important for people to hear these stories. It's not about losing weight. It's not about getting "gains" or working towards rock hard abs and glutes and getting a flat stomach. It should be about taking care of the body that you have and loving it at every point of the journey, not just when you meet the world's standard of perfection. So after all of those inspiring stories, I've decided to stop trying to lose weight. Instead of trying to lose weight and focusing on the number of the scale and all the work outs my body isn't able to do, I am going to focus on the food I am putting into my body. I am going to focus on dressing in a way that makes me feel confident. I am going to focus on getting enough rest and enough exercise in whatever way I enjoy. I am going to stop negative-self-talking and I am going to start talking to myself positively and in an encouraging and loving manner. I am challenging myself to love myself. And we take of the things that we love.


*Tip* If your best friend was struggling with their self image and feeling down, would you talk to them the way you talk to yourself when you look in the mirror? TAKE CARE OF YOURSELF. PHYSICALLY, MENTALLY, SPIRITUALLY. Don't be mean to yourself because you don't fit into the world's standard of beauty, celebrate your body as it is.

Monday, October 12, 2015

The Suffering That Is Never Talked About


I've come across this photo many times in the past few years. Those of us with chronic illness often find that the internet is a good place to seek support and find people to connect with who understand what we are going through. A place that I've found that can bring me support, understanding and even humorous things based on the life of an sick-person is Pinterest. If you're reading this I want to ask you to sign in to Pinterest and just type in "Chronic Illness". You will find everything from this above photo, to thousands of ecards based on the funny little things in our lives, to inspiration and encouraging quotes and also upsetting and very real emotional quotes that others have shared. But this above photo is what I want to talk about today.


Since the first time I saw this it has stuck in my head. It's like when someone talks about something horrible and says "And that's just the tip of the iceburg." Meaning, yes what you're talking about is horrible, but it is so much worse than we even know. I have been open and honest on this blog, but this blog, is just the tip of the iceburg. The way I speak to friends and family even is often just the tip of the iceburg. To truly get into detail about the suffering and emotional anguish would be draining and vulnerable and so difficult. I am taking steps to get there, but it is not an easy task.


Why I really feel like talking about this is because out of all the supportive people in my life, there are also those that are not supportive. There are those that have no idea how to support me and love me for who I am and what my life has become. Often time's these people who come off as not being supportive; really do want the best for us; but they don't know how to efficiently show us that. They think that there is a solution and that if you would just listen to them, they could help you fix the problem. This is what I've come to realize anyway. Fixers hate chronic illness because it cannot be fixed or controlled. Chronic illness disrupts your life and messes up your plans and those of us living with it have learnt to accept that reality.


In the past couple of weeks I have received multiple remarks such as "If you sit on that couch any longer, you're going to rot there." Also, "Get outside and stop being so lazy." Oh and another one, "Go do something with your life." And yes, I am starting to cry as I write this because one of the people that means most to be in the world is the person that is saying these things and it breaks my heart. The thing is, what this person doesn't know and refuses to try to understand is that it's not just about a diagnosis and it's not just about the pain. There are a million little things happening to my body that I never speak of because they are so normal to me at this point that that's how I view them: normal. Although, when I really think about it I know that none of those things are normal.

It is not normal that I experienced menstrual bleeding for 90+ days straight, it is not normal that my muscles spasm and twitch so violently and regularly that I can see the muscles jumping and feel them aching for hours afterwards, it is not normal that I experience sharp, electric-like pains in my neck, legs and arms, it is not normal that at least once a weak I have debilitating leg cramping, it is not normal that the backs of my knees and my elbows have an almost constant ripping and pulling sensation, it is not normal that I experiencing pulling, aching, throbbing and ripping pains throughout my lower abdomen on the regular, it is not normal that I often pee 30+ times a day, it is not normal that my actual eyeball hurts when I look up or to either side, it is not normal that I can wake up from a 13 hour sleep after fighting insomnia for 5 hours and feel completely and utterly exhausted and fatigued, it is not normal that I had a surgery that should have made me feel better and I came out feeling 100% worse, it is not normal that as I am writing this my fingers are twitching, my left wrist is throbbing, and my shoulders are aching in a way I cannot even describe. These things are not normal, yet they are my normal. 


So please, before you go ahead and call me lazy and unmotivated or get mad at me for spending the day on the couch while you went to work; take a minute and maybe ask me why I am on the couch all day today. Because, I've had a very exhausting couple of weeks in my books. I tried hard to help out around the house. I've cleaned and cooked meals for the entire family. I've went for walks and took family photos. I've planned a party and attended it. I've acquired a sinus-cold that's made me feel even more like death. I've attended doctor's appointments and family get-together's. I have tried to wean myself off of sleeping pills and am now having extreme bouts of insomnia that cause me to lay in bed for 3+ hours before falling asleep. I wake up earlier than I'd like to every day because I feel guilty for sleeping in past 11, even though I didn't fall asleep until 4 AM.


The little things that you do mindlessly every day are things that take the majority of my energy and effort. Please remember that no matter how much you may think you know about someone or an illness, you do not know what it is like to live with that illness or the emotions that come with it. Please, please, please be thoughtful and consider your words before they come out of your mouth. Maybe instead of judging someone for not doing what you think they should be doing, ask them why they are doing what they're doing; because likely, there is good reason and they could use some support.

Thursday, October 1, 2015

I'm Feelin' 22

As I logged in today to write a spontaneous blog-post, I realized that 170 people had read my blog the other day when I shared a link on facebook. My soul smiles to know that so many people have heard some of what I have to say. I hope that it helps people to change their perception of the chronically ill. I also have had the pleasure of reconnecting with some people from my past. It's funny how something like a blog post and that honesty can reignite a connection and new understanding between two people. I am thankful for that. And that is why I write this blog. It changes me, it uplifts me, it helps me, it helps others to understand a little bit better and it allows me to be honest and real about my issues.


Today, is a happy day. Today is my 22nd birthday. And yes, I will blasting the song "22" by Taylor Swift later on. After I've got a couple cups of coffee in me. This morning didn't pan out at pleasantly as I had hoped it would. I've had a rough time with insomnia over the past two months and I've been taking a sleeping aid before bed so I can actually sleep. Although, last night I took the sleep aid, then ended laying in bed, groggy and tired, with pains in my stomach. Likely, because I recently changed most of medications and now my body is adjusting to them. Which often times, causes a lot of digestive mishaps and bumps in the road. So, that sucked. And when I woke up, it wasn't much better. I ended up going right back to bed with my heating pad. But I'm up now! And reading birthday messages and drinking coffee, as I should be.


I had a really interesting conversation with a friend yesterday; I ended up encouraging her through a lot of my personal experience. When it comes to feeling like you're not doing enough in your life, you feel guilty. I've mentioned this before. This doesn't just go for sick folks, it goes for people in a lot of different situations. My friend, is amazing and talented and hard-working and she felt so upset and guilty that things weren't working out for her on the job-front. I'm sure we all get how frustrating that can be! It's scary not to have a job in this day and age. I listened to her and let her rant, because I'm a big believer in ranting to get our your anger/frustration before you find a little peace. I wasn't sure if I should say anything or not, but I realized that the things that I've been dealing with and that I've been through already could possibly help her. 


I can't even remember what I said to her exactly, but I know I talked about how sometimes we go through these stages of life when things are supposed to be up in the air. And you're going to be scared and it's hard to find peace in that, and that's okay. Sometimes we learn the biggest and most important lessons when we are in those scary and unstable stages of life. It stresses and scares us but often ends up stretching us in a good way so that we learn things we never would have known before. It teaches us to slow down and appreciate the things we already have. I know personally, it has shown me how much I have in life to be happy about and that those things are way more important than a job or a steady income. We tend to underrate happiness. It doesn't even have to be happiness really; just contentment. I have learned that being content in your life can be just as, if not more peaceful than being happy. I've learned to be content whatever the circumstances may be. Not to say that I don't go through times where I'm unhappy and depressed; because I do. But I let myself feel those things and I deal with them the best I can. Then, I move back to contentment. Because in this life, you get to choose what matters to you. To me, the most important things aren't having a job and having a steady income, or even school at this point. I know a lot of people that have a certain idea of success would frown upon that statement and that's okay. My idea of success is dependent upon my own reality. I'm sure, as my circumstances change, so will my idea of success. It has changed many times before but I'm learning to adapt and live within my circumstances and be content with it. 


So today, on my 22nd birthday. Even though I feel like crap at the moment, I'm going to smile and thank God that I have so many wonderful people in my life. I have some of the most encouraging and supportive friends around. I am so thankful for the people in my life. Especially today.

Monday, September 28, 2015

Another day, Another journey

Here I am, a week and half jobless, and stressing like I'm going crazy. Anxiety is a funny thing because even when you remove the things that usually stress you and cause anxiety; your brain finds something else to be anxious about. Since I've started my 'season of change', I've thrown myself into a couple of new things. The biggest thing being cooking. I've been cooking up a storm almost every day. It's been fun and it seems to keep my mind on something else that I can be proud of and feel in control of. So that's a good start. The next new thing has been counselling. Now, I've only been to one session so far but I was basically told, "You definitely need to come back again." As in, "You need help." Which is completely accurate at this point. 


Over the last year I have felt that it was important for me to speak out about my illness. There was a lot of reasons that I did this. The biggest reason was that I believe that Chronic Illness shouldn't be a topic that makes people feel uncomfortable. It should be a topic that we can discuss openly because so many people suffer with chronic illness or chronic pain. Another reason being that for someone living with a chronic illness, it can be very isolating and make you think very badly of yourself. We don't purposely talk down to ourselves and hate on ourselves; but when your body physically can't or is seriously pained to do the things you want it to do, you tend to blame yourself. I decided that throughout my journey; the words that I would say could either be depressing and self-loathing or they could be all about the honest struggles, triumphs and emotions that come along with the journey. From what I've heard and from what people have said to me, I have been able to help them understand a little better what it is like to live with illness and how they can better support friends and loved ones who may be in the same or similar kind of position as I am.


Now, my blog has been an outlet for me and I've stated that many times. I love being able to write openly and honestly about how I feel. This blog isn't always read and that's okay because I do it for me more than anything. Although, I do feel that getting it out there could impact a lot of lives. It can offer understanding for those who feel the same way. I hope that over the next little while my blog continues to be just as honest and forward as it is now. There are always ups and downs and I try my hardest to be open about them. As I start this new season of life where I am going to counselling, taking a break from working, pursuing treatments and options and learning to accept who I am and what my life is without putting my whole identity into being a "sick person", I will continue to update this blog and share the journey.


I know I make this "journey" sound lovely and insightful in the above paragraph but really it is anything but that. Already in the time that I've stopped working I've had multiple doctor's appointments, new diagnoses, new medications, multiple anxiety attacks, I've fully broken down about 4 times, cried in a public place, fainted at the doctor's office, finally opened up and broke down in front of my mother, begun to talk about taking a break from work, seen a counsellor, realized how messed up my head has been because of this, realized that my identity has been seemingly lost in the fog of chronic illness and also, I've done more cooking than I ever have in my life. And this is a big mess of all the things that I am trying and going through all to improve my quality of life. It would mean a lot to me to have your continued support. Being 21 (almost 22!) and not working and living at home automatically makes me feel guilty and it is not an easy path for me take. I am trying to be okay with it, and I hope that you all can support me in that.


I also want to say how much I appreciate every single one of you. Every person who has read this blog, every person who has asked me how I'm feeling today, every person who has donated to my cause, who has encouraged me to do things that I am afraid to do, every person who has let me vent and every person who is praying for me. I appreciate you all so much and I could not continue on this journey without the support of all of you. You guys really do get me through and I want to thank you for your love and understanding.