Drowning in a bath of Roses


A year since I’ve last written …. again.
At least in my diary I write every few months.

Once again .. my world has flipped upside down. I’ll catch you up on all the happenings at a later time but for now, I just need to write.

I’m tired. Tired of fighting, talking, reasoning, trying, hoping, dreaming, smiling, crying, being the better person. The list definitely goes on. I’ll just let it settle in that I am tired.

I have fought for my health for almost a year now and I know that for some people that’s not very long where as others it’s too long. At this point no one is wrong or right … everything just is. Sometimes I can walk, sometimes not so much. A lot of the times it’s hard for me to have a conversation because I’m jumbling and mispronouncing half the words. I get frustrated because I just want to have normalcy in some part of my life, even if it’s just talking. At this point, nothing is my “normal” there is no such thing anymore. Everyday, hour, minute, or moment it can change. Some days I’m better at rolling with the changes then others. Some days I can’t handle it at all and cry most of the day. The physical issues make you rethink your whole life. No biking, no swimming, no love making, no tying up shoes, no running and racing to the car, no swimming, or swinging on a swing or hanging from monkey bars. All the things that get taken for granted are taken away and you’re left with a body you don’t recognize anymore.

Don’t get me wrong, life’s not all that bad. I have met an amazing woman who wants to take me as her wife. Our cupboards are full, we own our home and our car, plenty of clothes. We have two kitties who are spoiled rotten, our home is filled with love I never even knew existed. Some days though, the mourning for my “abled body” gets so overwhelming I just can’t hold back the tears. I am grateful for all that I have, there is no doubt. I know how good we have it, how bountiful our gifts and graces are.

Some days … it’s not just the mourning, it’s so much more then that. It’s the pain, the struggle, the looks, the judgement, the lack of understanding, the longing, the shortness of breathe just being yourself. Sometimes the world is just too heavy to focus on anything else but your pain and sadness. Whatever this illness is, it’s unrelenting and it doesn’t care that you’re 29, that you moved across the country to be active, explore and go on adventures. That you love hiking, biking and swimming. It doesn’t care if you have a job or not, have money to pay for this time off work, or that you just wanna wear your converses but it really takes the breath out of you to tie those laces. It doesn’t care that it’s a gorgeous fucking day but you’re in too much pain again to enjoy the fresh air or walk around this beautiful city and all the gorgeous nature you have in your backyard.

It just doesn’t care …..
So hold your loved ones tighter, enjoy the sun a little bit longer and appreciate every ounce of energy you still have left. Then rest, love your body and rest. It’s just … so … tired.

** written listening to “The Staves”

Love Always,




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