"What doesn't kill you makes you wish you were dead." - Bring Me The
Last year it was a hot summer with crazy high temperatures. Also at home moods rose when, again, I was sitting in the dark downstairs.
It's no good for anyone, to be living in the dark day and night. Unfortunately I don't have the choice to be enjoying the beautiful sun, because the bright light and the warmth arn't tolerable for me. When I'm home alone or the person with me doesn't mind the closed curtains, I don't have to wear a sunglass around the house. Still it can be depressing when you've had a long day at work and come home into the dark, while outside everyone is enjoying the happy shining sun out there. Noboy wants that.
Thus last year my brother and I got into an agrument when he came home in the dark once again. Some nasty things were said back and forth, with him storming off to his bedroom upstairs. Because some harsh things where said, our mum went up to talk to him. Downstairs I could hear how kept speaking heatedly.
When my mum came downstairs, I could see she was upset, so I asked her what my brother had said. She answered, "I wish she were dead".
Never mind how hurtful those words were, I couldn't help but think, "me too". I too think that death would be a better solution to all this uncertainty. This endless uncertainty and despair. There is no absolution.
Probably the most cruel thing about this creeping illness isn't the pain that it brings with it or the fact that it tears me down with intense exhaustion, which makes me give up so many things I love and have to miss out on. It is that it's spreading like an ink stain to everyone I love and hold dear, destroying their lives as well.
For years my brothers had to say they didn't know what was going on with their sister, to which many responded with a laugh. Doctors should know why someone's ill, right? Wouldn't their sister be faking it all? Good one, they'd love that. Spending their days at home doing nothing.
Meanwhile my brothers came home and had to see how I couldn't even normally walk down the stairs or had to ask them for the billionth time to help me open something simple like a milk bottle. All this, because no one could tell them what the freak was going on.
So yes. Yes, death doesn't seem like a bad option to end and erase all this. All this pain and hurt within all of us. Even though I now do have a diagnosis, it does sound like a plausible absolution for this massive, devastating whirlwind in all of our lives.
"I'm not okay, and it's not alright.
Who will fix me now? Dive in when I'm down? Save me from myself? Don't let me drown.
Who will make me fight? Drag me out alive? Save me from myself? Don't let me drown." - Bring Me The Horizon
My brothers and I have been through so much. They're my best vriends (whenever we feel like it). We share so many things. Films, series and music… Back in the days we even shared our clothes every now and then.
The hurt and despair someone must feel for their loved one to rather wish them dead, even though it was in the heat of the moment, I can't imagine that. I do know he said it out of love, though.
Later we spoke it out. For the first time we cried together about all that's going on. During that conversation I said to him I share the same thoughts and that was such a relieve for the both of us.
I'm not writing this because I've lost all hope. Hope is the only thing that's keeping me going. Every day is a gift and hopefully a day closer to a treatment or a cure that'll heal all of us with M.E.. When all hope is lost, then it'd be really forlorn.
Because of that I'm sure. That this illness is curable. As long as I have faith, I will have enough courage to power through the days, and even years to come
Light and warmth are impossible for me to enjoy this Spring, but that doesn't stop me from enjoying the lovely smells that springtime brings with. My hayfever won't stop me, and I'm loving all the colourful crocusus and snowflakes. Nevertheless from inside the car, but who cares?
The last few weeks I have been having trouble falling asleep and I'll fall asleep around sunrise. Around that time birds are all busy tweeting their morning songs, waiting for the first sunshine of the day. Is there a more beautiful sound than that?
Autor's Note: this blog has been written at the beginning of February. After consulation I have dediced to post this blog on the 12th of May, worldwide ME Awareness Day.
Donate to research for curement and medicne on
https://www.omf.ngo/#donatenow. Many thanks to the bottom of ours hearts from affected patients and
"'Cause you know that I can't do this on my own." - Bring Me The Horizon