Thursday, March 2, 2017

My day to day life

Ugh! I hate how I have neglected my blog so much! I have a review I need to get done for a company but the saga of difficulties continue for my life.
I'm dealing with one of my "I can't sleep but I have some energy" moments so I decided to write a post!
Recently things have happened in my life that has shown me how unaware people are about my life as a spoonie (someone with a chronic illness) just some ignorant comments on Facebook, which there is nothing wrong with ignorance I am happy to expand your mind and hope you can expand mine! Rare diseases day was within this last week, the typical awkwardness of a Catholic during lent and March being endometriosis awareness month (one of the illnesses I battle).
Of course just like most of yall things change at times, different cycles come through and yeah...
Waking up- so currently I wake up anywhere from 12pm- 3pm I take Chimmey out, I use the ladies room, if my parents are home and awake go say hi, go into the kitchen and try to find something to eat but lately I've been so nausea that I usually just grab a drink and hobble back to bed. I scroll through my Facebook, turn on my tv or netflix and just chill, I take pain meds if I need to but because I'm in bed I try not to take anything since they can make my GI symptoms worse. Not moving does a lot for pain relief even though my normal pain level is a 7-8.
I usually fall asleep and I'll wake up at 5 or 9, wide range I know, I'll get in "awake mode" and go in our living or stay in my bed and go back to Facebook and watching something until my dad gets home 10:30 or later and we eat and hang out and hopefully, I don't pass out.
When I just can't stand sitting up anymore usually 2pm lately, I go to bed, fumble around Facebook more, more tv/netflix, bug my dad by texting him, and pray I don't pass out if I have to get up throughout the night.

On "errand days" which are typically Sundays and Tuesdays because it's my dad's day off we usually have at least one doctor appointment and whatever errands I can put up with. When we come home from those days I take a good 3-4 hour nap!
On days I have to make business hours stuff I hope and pray I wake up and feel alert at a decent time but most the time it's like 4 and when they return my call the next day I don't even hear my phone because I'm out cold.

Awesome life huh? This is my reality with multiple dehabilitating chronic illnesses. I'm not doing this for pity but to share awareness about my life and the life of many others who are afraid to do so because of the way people react.

But I am also doing this for me, my mental health has taken a major toll and I could use some people to hang out with. And by hang out just going to your place is perfecting fine with me but if we do go somewhere guess what, I get premier aka handicap parking so yeah, one upside to hanging out with me. So contact me let's get reacquainted with each other and do something some day!
And please, reach out to a fellow spoonie in your life, genuinely check on them and offer some SPECIFIC help! Like doing their laundry, getting them some snacks/food, picking up groceries, picking the kids up. When you say "let me knowif you need anything" we don't know what's reasonable for you. We don't want to ask for too much.


Anyways thanks for listening to me ramble! Wishing you all love and spoons!
Aly