Thursday, June 11, 2015

A New "Normal"...

OI sure has a way of ruining any aspect of a potential good day. This morning while making breakfast, I sneezed & cracked a rib under my right breast. It shattered any plans I had for the day, such as going out for a haircut. I've lived with OI my entire life & have learned to adjust to it's inconsistencies & sudden obstacles. But lately life seems to have taken a liking to beating down & keeping me there. This stage in my life is the first time I've thrown a pitty-party for this long. I feel so beat down, defeated...useless. I'm writing this because I want to share the aftermath of what life is like....alone. Alone is kinda where I want to be. I'm sad all the time. I want to wallow in this sadness alone because I don't think it's fair to transfer my emotions to others.

So as you can tell today isn't a good day afterall. Typically I embrace my situation simply because this is my normal, however now this my "new" normal. I'm learning to cope without her & it's not going well. To add to my heartache I learned that her Palliative home care nurse Matt Hirshfeld died just days after her services. The shock of this devastating news sent me into an emotional rollercoaster all over again. I couldn't believe the news, it literally felt like a dream. I had no idea that he was ill so that alone caught me by surprise. He was always perky, upbeat & jubilant. He loved his babies & that showed in the way he cared for them. He was more than just Haley Jean's caregiver, he was our friend. He is sorely missed.

When I think of all the fascinating people we've met during this journey, it saddens me that those friendships are no more. Often times I wan to call or text the team to say hello but I think about how that may not be the best idea. They are professionals & since she's no longer their patient it's best move on & hold on to the memories.

As the days persist I will continue to keep myself busy as best I can. However, the next few days will be difficult becasue I'll need to relax as much as possible. I've got to get my ribs healed & pain-free & complete bedrest with meds is my only hope. It'll be very hard, considering that whenever I"m idle I have the hardest time coping with her absence. It forces you to think & remember when most days I don't want to because the pain is just too intense. Yesterday I stayed in bed embarassingly until 3pm. The amount of energy it takes to get up & out of bed to get freshened up is immeasurable. This isn't me, I don't know who this person is anymore. I don't know what "her" purpose in life is or if "she" even has one for that matter. I'm no happy with my reflection in the mirror. AS I said, it's my new "normal".....

I'll use this down time to paint, although I've run out of canvas It'll give me a reason to go to the craft store.  In the meantime here's a photo of my most recent project I found on Pinterest. Please pray that I get stronger than the day before. I'll be in touch...;)

By the way...;)


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