I've cashed in all my spoons...

Happy Thursday! I hope that everyone is having a good week and is looking forward to the weekend. It has been a really busy week for me. My son turned 18 on the 21st...which has been one of the hardest things for me to deal with, I cried from both pride (of the person he is growing into) and sadness (of the baby that I miss). It was a day of celebration and hugs :) 

All of this celebrating has left my body needing rest. I turned in a lot of spoons to get through the last few days. I believe that I may have had to borrow spoons...I run out so quickly. (This 'spoons' metaphor will only make sense to you if you have read the Spoon Theory. I posted the link to this amazing story, written by Christine Miserandino, in my last blog post). My body doesn't handle being busy or doing anything strenuous. I become very tired, very quickly...and at the same time, my stubbornness will push me beyond my 'normal' limits. I know, on those days, that I will need a few days of R&R  to heal. My nerves will feel as if they have been badly bruised and stretched out. My joints will be extremely stiff and sore. My head, neck, and upper back will become so sensitive to touch, that lying down is a challenge that I refuse to take on right away. I don't walk downstairs because I know that my left side is further weakened from all of the extra chores and will not be strong enough to carry me back up the stairs. These are the things that I have become accustomed to over the last four years. I know that I still have much to learn and can learn a better way to care for myself. But for now, I'm doing my best...even if that means, lying around in pain and paying for the past few days of activity.

No matter what form(s) of treatment you choose for your chronic pain...prescription medication, surgery, physical therapy, natural therapies, nothing, exercises, essential oils, foods, etc...you need to make sure that it is right for you and makes you feel good mentally as well. I take prescription medications, that includes narcotics for pain. I don't have a plan to change that, but I do have a plan to maybe lessen the number of pills and add other things to (hopefully) improve my health, my lifestyle, and the way I feel. I have been playing with different foods, natural vitamins, stretches, and am researching essential oils. I have met others online that find relief with some of these options, so I figure that the only thing that will hurt, is not trying.

Having syringomyelia, Chiari Malformation, fibromyalgia, hypothyroidism, asthma, arthritis, kyphosis, and Cervical Degenerative Osteoarthritis, has taught me that terrible things can happen to you when you're not looking and when you've set you're life on cruise and just go from day to day, believing that nothing can happen to you, or will happen to you. I have learned that you have to live your life the way you want. Take control of it. Live the dreams you want to see come true. Make others happy by helping them. Dance, sing, laugh, smile, experience this life to YOUR fullest, rest when YOU need to, but don't sit back in idle mode and let the disease have you...your life is a gift!

Thank you for reading my blog. It really means a lot to me!

Happy days to all, I wish you many spoons, happiness, laughter, and dreams come true :)

Monica 

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Holding on to 'Yourself'

Hello!  How is everyone feeling?! I hope that each of you is doing as good as possible and that today is one of the good/better days. I'm struggling with this cold winter weather, as I'm sure most of you are. If you have chronic pain, you may not enjoy the winter months, as the cold wrecks havoc on your body. If this is the case for you, I'm very sorry, I know how hard that can be.

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.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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