So, I finally decided to start a blog.
I will be using this to basically write out life experiences, how I’m feeling and let’s be honest, probably a lot of random crap!
A lot will be on my MS journey, as well as mental health related things.
I will also say/warn that I do jump between using ‘I’ and ‘you’ a lot. It sometimes is intentional, depending on what I’m writing about, and sometimes it’s just accidental!
Let’s start with a bit of background, shall we?
I’ve struggled with mental illnesses (Depression & Anxiety) ever since I was in about year 8 or 9 – so about 2005/6. A lot of people will blame it on my ’emo’ phase. And that it was because of the music I listened to, or the way that I dressed.
That was always annoying to hear. And I can completely understand why people saw it that way. Dark clothes, dark music = dark mood, right? Nooooo! Yes, it is easy to have your mood affected by the music you listen to constantly. But my depression and that ‘black cloud’ that came along with it, started before I was listening to depressing music. And even though some of the songs I listened to had lyrics I could relate to with how I was feeling, it actually helped me.
When I felt depressed, I felt alone, even if I had friends and family around me that made me happy. I felt disconnected to people. I felt like I was different or wrong about how I felt, when so many people around me didn’t feel or think the things I did. Now, I’m not saying people who don’t have depression don’t get sad. Everyone gets sad and everyone has different levels of sad and different ways of coping. It was just that my sadness over took my brain. Even though I could be laughing and enjoying myself, the back of my mind was always saying some negative things towards myself. It was that little voice that says ‘you’re useless’ ‘everyone would be better off without you’ ‘they’ll never understand you’. And when you find a song that explains exactly how you’re feeling, or exactly what you’re going through, you connect to it.
You blast it as loud as you can, because it helps you express how you feel at that point in time. It’s a release.
As crazy as that is, that’s exactly how it was for me.
And having loving friends and family helped as well.
It took me years to manage the black cloud.
And just as I had, my MS diagnosis happened…
So here we are, 2014, only 22 years old, being told you have an incurable disease.
Luckily a comment a doctor had made the year before about some numbness I had saying it could be MS, had helped me in the lead up to the confirmed diagnosis. I had time to come to terms with it and time to research about it.
One of my first comments after diagnosis about the whole thing was ‘Hey, it could be worse!’ And having a laugh – because that’s how I cope with things. If I can’t laugh at myself, who can?
I think that everyone else, especially mum, struggled more with the ‘I have MS’ news than I did. And I was the one who would have to live it!
At that stage all I had was random numbness that used to change location and shooting nerve pain. Not great, but I could deal with that.
I started medication to help delay the progression of the disease. Medication to help with any nerve pain.
But over the (coming up to) three years now, things did get worse. And although I would say ‘it could be worse’, I wasn’t talking about my MS could be worse, that’s exactly what happened though!
I had the pain medication changed multiple times because of the amount of pain I was getting.
I was getting new symptoms popping up.
It was scary.
And just like that, the black cloud had reappeared. Along with a friend. Anxiety.
I’ve had comments from bosses who don’t understand the disease because I look perfectly fine on the outside.
I’ve had very unprofessional comments made by a boss, several times.
It’s the stigma of an invisible disease which takes a toll on you.
People see you as lazy, or making it up to get out of doing something.
And then you get the person who has been one of your supports since then, starts to crack, and you begin to feel like a failure in their eyes.
The thing with MS is that it weakens your immune system, and so does the medication. That means that I will pick up almost any bug or viral thing that is going around. What that also means is, that it takes me a lot longer than a healthy person to recover from it. A normal 24 hour bug can take me days, or even weeks to shake it.
Because of that, I’ve had a lot of time off work. Which puts a lot of strain on my job, financial situations and of course my relationship at home. This also affects my anxiety and depression.
To get rid of the toxic people that I am finding in jobs, Dad and I are starting a couple IT related businesses, so that we can work for ourselves, and work from home. (So, if you’re in need of a website for yourself, hit me up! 😉 )
I used to never try to think about the ‘what if’s’ with MS. Especially when I was first diagnosed. It wasn’t until things started to get worse that I did.
What if when I stop medication so that we can try for kids, that my MS gets a lot worse?
What if when I have kids I can’t play with them because of the pain, or because I’m in a wheelchair?
What if my MS get’s so bad that I become more of a burden to my family, especially Graham?
What if my MS get’s so bad that I can’t do the simple things in life that we never think about? Like, washing myself, getting myself to the bathroom, or even typing on a computer or playing games?!
The thing is, there’s always going to be a chance of this with MS, but I shouldn’t think about it, as it sends me in a spiral downfall.
I have had panic attacks, quite regularly, just because of this awful disease. But, I never say anything to people..
I’ve never been good at verbally describing how I feel. Which is why, quite often, I will write things out. I feel like I can be completely honest in a written sense. Even if everyone in the world was to read it, I don’t care. I just suck at finding the words to say things out loud.
So I know, that if family and close friends read this, they may have never known how I felt on certain things, just because I didn’t say anything.
Don’t get me wrong, it’s not like I don’t tell people how i feel. It’s just that they’re more likely to get the full story over a text, than in a proper conversation!
It’s not that I don’t trust the person, or that I don’t feel comfortable with them, it’s just how my brain operates. I don’t feel comfortable with myself to say exactly how I’m feeling or cause conflict. I’m scared of some people’s reactions to things I say, like being told that how I feel is stupid.
You’re an idiot for telling someone that how they feel is stupid. People feel the way they do, for whatever reason it may be. It is THEIR feelings. Not yours. -.-‘
Anywho… Although that was long winded, I feel like I’ve written what I’ve needed to write… For now.
I don’t know how often I’ll write, but follow me on twitter to keep up to date with any new blogs that come out! 🙂