Chronic illness is a hard thing to understand. There are many things to consider when you are chronically ill and in pain all the time, but until you’ve experienced it, let me explain some of the things you’ll never think of until you’ve been through it.
Never did I ever think…
- That I would lose my health completely
- That I would be worried about traveling when traveling has been my life for years. Now I can barely muster the energy to fly from Taiwan to Canada
- That I would need flight assistance for the past four years
- I wouldn’t be able to continue working at 42 years of age
- I would know two years ago that there is a wheelchair in my future
- That I would have to fight so hard to stay out of a wheelchair because I have been in and out of one since 2011
- That I would have to use a cane at age 34 and continue using it regularly
- That there would be days I would not be able to walk
- That there would be many days it feels like I am walking on shards of glass
- That I would be in pain constantly
- That I would be in so much pain that I couldn’t see the light at the end of the tunnel and wondered if I was meant to live the rest of my life in pain
- That there would be days I wouldn’t be able to get out of bed
- That I am at the hospital at least once every three weeks
- That I would no longer be able to wear heels or certain types of clothing such as shorts, short skirt or things with collars because my legs are wrecked or because it hurts to wear certain things
- That I would stop wearing a bra two years ago because the band fits right over my chest, which is where I have active costochondritis regularly
- That I would try over 30 different types of medicines from 2009 to 2017 in hopes of easing my discomfort and regaining some of my strength
- That I would have to give up sports completely. My last long distance run was in May 2012
- That jumping or sustaining any impact to my legs causes immediate pain and lands me in bed for days
- I would lose friends because they do not understand my illness
- I would lose people in my life because they do not understand I will not get better
- That I can’t catch a full breath because the inflammation in my ribs and chest is so bad
- That my husband would be caring for me because I am unable to do things like shopping for groceries or lifting anything heavier than my cat
- That I would be taking 20+ pills per day to control pain and inflammation because of a runaway immune system
- That I don’t know how to explain what is wrong with me anymore because there is so much wrong, I feel helpless and I don’t know where to start
- That people probably won’t believe me anyways
- That so many people would offer medical advice to me when they don’t even know what I have or how to say what I have
- That people would think I am exaggerating my pain and illness
- That I would stop writing for a while because the topics I was writing about, I could no longer enjoy. I lost my writing voice. I’ve had to change directions in what I want to write about since I can no longer write about the things I love doing
- That I missed my sister’s wedding this summer because I was too sick to fly home for it. Even if I had, I couldn’t have participated in the festivities. Her wedding is one of MANY weddings I’ve missed over the years
- That I was not well enough to fly home for my grandfather’s funeral
- That I wouldn’t be able to climb more than a set of stairs without passing out
- That I have not seen my friend’s baby since she gave birth on July 20th because I cannot climb the stairs to her house
- That I used to see my friends regularly, but I haven’t seen most of them together in over six months (May 2017)
- That I wouldn’t want friends to visit me because I don’t want them to see me like this
- That I would choose my outfits when I have to leave my house a few days before I go out and get ready the night before so all I have to do is put on my clothes and get through a visit
- That I wouldn’t have the energy to talk to them even if they insisted on coming over. I have many friends that visit, but there are days I can barely manage a conversation with my husband because my body is so wrapped up in dealing with pain
- That pain saps the energy out of you so much, even lifting a glass of water can be impossible on some days
- That even taking a shower requires me to sit down because I have to think about how long standing in a shower will affect the rest of my day
- That sometimes I do not have the strength to wash my hair because my back is so bad, I do not have the strength to keep my arms over my head
- That I would be housebound for weeks
- That I would venture out of my house once or twice a week for a few hours at the most because it’s all the activity I can handle
- That I would lose several entire summers because of overdoing things on one single day. I had my days planned out. I followed those plans to a tee. It didn’t work. What I learned is that I have to do less activity.
- That a mere touch or hug can cause me pain and physical harm
- That no one will ever understand what my days and nights are like unless they are chronically ill and in pain 24/7
- That I received my first diagnosis in February 2009 – two months after I married my husband, and my health has been on a continuous decline since then.
- That I knew there was something very wrong as a teenager, that my main symptoms really starting revealing themselves at age 24 and it took another decade to be diagnosed with Ankylosing Spondylitis
- That I have developed many secondary issues to Ankylosing Spondylitis, including Fibromyalgia, Chronic Fatigue/CFIDS/ME, Myofascial Pain Syndrome, and Complex Regional Pain Syndrome
- That doctors would look at me and give up on me. (No doctor wants to work with a patient that doesn’t end with a success story.)
- That my life would never be the same again
- THAT I WOULD BE DISABLED
- THAT I WOULD FEEL HEARTBROKEN AND GRIEVE FOR THE PERSON I ONCE WAS
- THAT I DONT MIND THE PERSON I HAVE BECOME THROUGHOUT ALL OF THIS BECAUSE IT HAS MADE ME STRONGER.
- THAT WE ARE STILL LOOKING FOR A CURE
This post was prompted this week because I finally realized I could not keep working or doing the things I love without paying dearly for them afterwards. My husband and I prepared for this in February 2017 when I got my CRPS diagnosis.
We decided that we would give things until August 1st to see if my health improved, and if it didn’t, I would start cutting things out of my life and move to full bed rest to get home to see my family next year.
I am taking a step back from a lot of things at the end of this year in hopes that this will give me the time to rest and regain some of what I have lost.
What I do know:
NEVER STOP MOVING FORWARD.
MAKE TIME FOR REST.
MAKE TIME FOR ME. SAY NO.
DO NOT DESPAIR. LIFE IS BEAUTIFUL IN MANY OTHER WAYS.
KEEP LOVE AND COMPASSION IN YOUR HEART ALWAYS.