Having an autoimmune disorder has definitely changed my life. In every possible way. Many of you understand what I mean. The onset of symptoms. The search for doctors, consultations, and testing. Multiple opinions. The diagnosing process. Treatment choices and trials. Annual follow ups. Pain management. However, for me, the most difficult part is the day to day living and the constantly symptoms. Just as you are able to get used to your pain level (yes, it's common to become used to feeling pain. It's unfortunate, but is part of life for someone with chronic pain)...something will change, we may never know what it is, but everything will flare up. No longer able to work, I have had to find other ways to spend my days. I was a single mom for thirteen years prior to marrying my husband in June of 2011, so I worked and supported the two of us, went to school, took care of my house, was involved in my son's athletic events, and his education. I was a very busy person and that is the way I liked things. I rarely sat down to watch television. I usually didn't even go to sleep until two or three in the morning, even through the week. Now, I sleep more, even though I rarely feel rested. When I get up in the morning, I love watching Criminal Minds while waiting for medications to either take effect or not, then my writing day begins. Writing saves me.
I've learned that finding your own pace, keeping it, and making adjustments when necessary are the keys to getting through the day without causing yourself too much extra stress. When your mind and body are stressed, the disease(s) takes over and becomes intense emotionally, physically, mentally...it doesn't seem to let up. For me, this lasts for days. For example, If we are having people over for dinner or one of the kids' birthday, I want my home to look nice and be clean, so I will spend a few days before getting things ready. If I push the vacuum, sweep the floor, dust, do laundry, etc...any of those things are murder on my neck, shoulders, head, arms, hands...many things will end up being left undone. So I have to plan in advance. I can only do one of those things a day, and it will take all day, and I won't be able to do any of them the day of the event, that's saved for showering, cooking, being social. I include showering because even that has become a chore, washing my hair is a frustrating time for me (but I will NOT cut it). After the event, I'm exhausted, and will spend the day after resting...maybe two days. This is kind of a break down of how I use my spoons to get through the holidays. That only makes sense if you have read the spoon theory, if you haven't, I have added the link, it's a must read for anyone with chronic pain.
Trying to be yourself, with a disease that has its own agenda is no easy task. I have been on the job for four years and have been doing a lot thinking lately...in the beginning, I was terrified! I got online, read everything about syringomyelia that I could find because my doctors didn't really know that much and I didn't like what I was finding. I decided that the best thing to do was accept what was happening and live the best and fullest life possible. Well, now I only believe that to be half right. I was allowing my illnesses to have control, to make decisions, and to ultimately plan my future. I was 34 years old at the age of diagnosis and had only been married for about three weeks; and now this 'thing' was stepping in, taking my job, my freedom to drive, many other abilities that I took for granted were robbed of me and I wasn't even aware what I was losing, all I knew was that I couldn't stop it. Now, I have had time to sort of mull things over, get used to my body changing at a heartbeats notice, I've had a chance to set my mind on a different kind of future for myself, and to learn about the kind of person I really am when life handed me lemons.
I have always had a passion for writing poetry and fictional stories, I've just always kept them to myself. Life has been so different since my diagnosis, and I have come to the conclusion the some of my goals needed to change along with my life. No longer able to work outside the home, I decided to use my time to do something that I love, so I sent back to writing a couple years ago and I love it! I never go anywhere without a notebook and pen. I had a poem published last year in the Cogs in Time 2 anthology and I will publish my first book this year, it's due to release in late June. I'm so thrilled!! I honestly feel more like myself when I'm writing, than when I'm doing anything else. The creative side of me is able to be free! My disease may have control over a lot of things, but I want to control the way I live and the way I allow my heart to breath. I am ready to take the reigns back, take a few chances, go out there and LIVE! When I have a bad day, or days, I will stop and care for my body, otherwise, I must trust in myself, in my doctors, my family, Bentley (my dog), God, science, support, friends, and medications to help me live as full a life as I can possible imagine.
If there is anything that you would like to see me discuss in my blog, questions, concerns, comments, etc...I'm happy to do my best to answer your questions. :)
I wish all of you a good day, a good night, gentle hugs, and dreams come true!
(((Gentle Hugs)))
Monica
You can also find me on:
Instagram, Monica Reents, my screen name is monicar. writer .
I take pictures of the everyday things my illness effects and post them so others might find some understanding.
You can find "My Journey with Syringomyelia" Facebook page here: https://www.facebook.com/pages/My-Journey-with-Syringomyelia/1488444181379226?ref=hl
I am also on Twitter: @monicareents625 https://twitter.com/MonicaReents625
I love you, beautiful girl ❤️
ReplyDelete