23 May 2016

My Story, My Journey & My Experience: Lets Create Awareness

From the 11-17 May is ME, Myalgic Encephalmyeitis or some of you may know it as CFS, Chronic Fatigue Syndrome, awareness week & just because it may not be ME/CFS awareness week anymore doesn't mean we should stop talking & bringing awareness to such a shitty chronic illness. I was diagnosed with ME after suffering with Glandular Fever, a viral infection, which made me the the most ill I have ever been. I know I'm not the only one suffering & this post is to create awareness to a serious chronic illness that many of us are suffering from. I also wanted to share my story, I know that there are others out there suffering & if my story can just touch one person then my job is done. It's important to remember that ME is a illness that varies from person to person, symptoms & treatments can vary meaning what works for me personally may not work for someone else. I'm not going to sugar coat anything in this post either. I want people to know what it's really like, it's not easy, in fact it's bloody tough but when life gives you lemons you make lemonade right?

What Is ME?
ME leavers suffers exhausted after minimal activity & is characterised by many different symptoms. It usually flows from a viral infection but can also steam from non-viral infections such as vaccinations, chemical poising, & serve physical trauma such as accidents & operations. Sometimes there is no cause. ME symptoms include, extreme exhaustion, post exercise fatigue & malaise, temperature irregularities, headaches, muscle, skin, bone & joint pain, loss of concentration & memory loss, depression & emotional instability, heart rhythm irregularities, sore throat & swollen glands, no refreshing sleep, sensitivity to pain & light & the list goes on. The main thing to remember is that symptoms are going to vary from person to person.

How Is Is Diagnosed?
There is no specific diagnostic test available at this stage. Throughout the world it is now accepted as a serious physical illness which can have a serve impact on the life of the suffer. Diagnosis is made preferably by a doctor who specialises in ME. They will generally rule out many other serious illness via multiple tests before diagnosing you with ME & a diagnosis won't be made until symptoms have persisted for at least 6 months.

At this stage there is no specific curative treatment for this illness. The current aim in the way of treatment is lifestyle changes. These lifestyle changes might include stress management, learning to 'pace' yourself, maintain a balance of rest & gentle exercise, eating sensibly & attending to sleep issues. Because the symptoms vary, treatments will also vary meaning that what works for myself personally may not work for someone else.

My Story, My Journal & My Experience
Living with ME is far from easy. It's one of the several illnesses where you look completely okay on the outside but on the inside you are hurting & you are struggling. One of the biggest difficulties I've come across is people telling me what I should & should not be doing with my life. That I should be at school, I should be working, applying for jobs or should be getting my drivers license. I'm the one that lives inside my own body & I'm the one that has to deal with the symptoms & side effects that come long with pushing myself to hard. I deal with those side effects & I'd prefer to have to deal with as minimal pain as possible. Some days I don't have the energy to make my bed in the morning, or wash my hair, somedays I struggle to even find the energy to get out of bed. I went from being a physically healthy teenage girl to a teenage girl who now, on some days can't manage to get out of bed. Mentally I want to but physically my body won't allow me. Being told that I have an illness with no cure was such a bitter sweet moment. It was great to finally know what the heck was going on with my body & to know that it wasn't all in my head but at the same time, now what? I had to learn to pace myself & as someone who is a perfectionist & is always pushing myself to be better & get everything done then & there, this wasn't easy, it took awhile to get use to & I still haves ups & downs every now & then. I think the biggest misconception with ME/CFS is that people hear or see the word 'fatigue' & think, "Oh, she's just tired all the time" or "She's being really lazy, we all get tired throughout the day". The difference between being tired & being fatigue is that if you're tired you can have a nap & actually wake up feeling somewhat energised,. You generally wake up & feel like that the nap you just had actually had some kind of benefit. Being fatigue means that you can wake up from a nap & feel nothing. No new boost of energy, no new nothing really. I can sleep for 12 hours straight & still wake up feeling tired. I wake up & the first thing I do is yawn. I honestly can't remember the last time I felt some kind of energy. I feel like I'm constantly running on 20% battery. Another misconception is that ME/CFS is that they only it's just about being tired all the time but like I mentioned earlier, there are so many symptoms that going along with it all other than 'just being tired all the time'. I may look okay on the outside but I promise you, that's not always how it is. If I say that I can't make an event it's not because I don't want to be there, it's because I physically can't be there. I'm trying my best & all I ask is that you try & understand that. I didn't ask for any of this to happen. It's been hard & still is to adapt to this new lifestyle. I've had somethings that I absolutely loved & enjoyed doing taken away from me & that in itself is hard. Even a walk around the block puts me out for three days. I struggle to spend all day out shopping like I use to, my body just doesn't cope anymore. Somedays I'll be lucky to be awake for 3 hours before I feel like I need to go & have a sleep. This isn't a cry for attention or me wanting anyone to feel sorry for me because at the end of the day this is my new life & my grateful to still be alive & breathing. Each & everyday is different & I take it one day at a time, each day as it comes. I ask that you all bare with me as I try to work this all out, adapt to my new lifestyle & work out what will be best for me. I ask that you all do some of your own research on what it's really like to live with Chronic Fatigue Syndrome before you jump to conclusions & start judging the way I'm living my life. I ask that you all be grateful for your health because you never know the day that it might be taken away from you, just like mine was.

There are going to be people out there who read this & think that I'm doing this for attention or what not but I'm not asking you to throw me a pity party, in fact that's that last thing I want! I'd rather you share positivity with those around you or someone you know who is having shitty time. I wrote this post because I want to create awareness to such a shitty yet serious chronic illness & I'm hoping you'll find a way to do the same.

To wrap everything up I just want to remind you all that people are going to suffer differently. Be patient & be kind, it's a huge thing for us to get our heads around too. And to all my fellow suffers out there, hang in there. I know this illness is bloody shitty but let's not let in win!

I'm going to leave some links below that I found useful. They'll vary from websites, other blogposts, YouTube videos & channels, other people who also have ME/CFS, there will be a mixture & you can choose the ones you'd like to look into more.

@megsays: What It's Like To Live With A Chronic Illness: http://bit.ly/1Wbm9dv
@megsays: What Having ME Is Really Like: http://bit.ly/25aCcKq
@megsays: YouTube: http://bit.ly/22l8DEl
The Associated New Zealand ME Society: http://bit.ly/1sxbr4A
Second Opinion/Chronic Fatigue Syndrome: http://bit.ly/1sxbNbg

B x 

1 comment:

  1. Love this post so much. My sister Camille has suffered with CFS for over 10 years. She was diagnosed at 14 which basically meant she really didn't have those teenage years that everyone else has had, she was too sick to enjoy them most of the time.
    It irritates me to no end that people don't seem to want to understand what a serious illness it is, and instead like to think the sufferers are just playing on it.
    Hope you are managing it ok at the moment! Oxoxo