Chronic Illness: Never Did I Ever Think…

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 ageFebruary 2017 when I received my CRPS diagnosis.
  • 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 badCarrie Kelleberger Walk AS One
  • 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.

A regular day for me looks like this. My cat knows it. Now you do, too.Bijoux Knows How I Feel All The Time

13 thoughts on “Chronic Illness: Never Did I Ever Think…

  1. Joshua Samuel Brown

    My dear, dear friend,

    I am lying in bed bitching about my gout, thinking about you and your illness and the sheer hell you must be going through, and the only thing I can think of to say is that your own determination to not let this beat you down makes me all the more determined to use my own minor chronic ailment as a muse to continue writing stuff that entertains you. Seriously. I would jam a sharpened knitting needle into my big toe if I thought it would relieve your own malaise for a few minutes.

    OW! FUCK! I didn’t…FINE! FINE!

    (See, I didn’t actually have to jam the knitting needle in…because GOD did it to me…)

    Glad I got to hug you yesterday.

    Bojack Horseman! Lady Dynamite!

    I got nothing else…

    Always, JSB

    Reply
    • Carrie Kellenberger Post author

      Please tell me you did not stab yourself with a sharpened knitting needle! How can you tell tales of travel madness with one less toe?

      You always have something else. That is the magic of spinning words and karma, right? You excel at that, JSB.

      You and Twi know how to hug. Always accepted!

      Reply
  2. Christina Lowe

    You are amazing, brave, beautiful, and so full of courage. I am so deeply honored to know you. I often reflect on the things I lose, with each new diagnosis, and it’s hard, it hurts, because it’s things we love. It’s the things that people take for granted, it’s our hobbies, or passions as well as our basic human requirements, like washing our hair. We are the unique though, because through it all, we can still find the good. We grieve like everyone does, but we don’t stay there, we know that we have to keep going. Finding the positives in our negative situations, changing our perspective to maintain our happiness. Knowing we can’t control but so much of our outward/ internal situation but we can change our mind’s and how we deal with it. You are my hero. I am so grateful to have you in my life. ❤XOXO
    Christina

    Reply
  3. Elias Ek

    Hi Carrie,

    Like you say, I’ll never understand unless I have your sickness, but I am learning something new through your posts. Hopefully that will help me avoid being an ass to someone by doing some of the things you describe above. Thanks for that!

    Elias

    Reply
  4. Kim Stocking

    Hey Carrie. After I read your post last week about your Dad, I’ve been thinking a lot about you. Then I read this and I knew I had to reach out to you. Im very sorry to hear about your illness and how hard you are battling. I also fight everyday with similar challenges that have impacted me greatly. I teach part-time and have learned to maximize what I can accomplish on the good days. You are in my thoughts dear Carrie.

    Reply
    • Carrie Kellenberger Post author

      I am so sorry to hear that, Kim. How are you coping? Pacing and management are hard lessons to learn. I don’t think I’ve quite figured out how to maximize what I need to do on good days because I always overdo it and end up back in bed. I have tried many times to revert to ‘interval training’- that valuable lesson we all learned in high school, but my body won’t work with it. It doesn’t seem to matter if I build on my activity levels or not, it’s always the same result. I have an end point and I need to be vigilant about stopping once I’ve hit it. Thinking of you and hoping you are doing well, Kim! xo

      Reply
  5. Sherry

    This is sooo me! Everyday, everynight. I am a singlemom and donot know where to start because I cannot stop working. It hurts to breathe each morning I wake up. It hurts everywhere all day and worse when I sit down to rest. I donot want to be “pilled up” so I stopped seeing my RA Dr many years ago..( that and I didnt have insurance ans couldnt afford it).

    Reply
    • Carrie Kellenberger Post author

      Hi Sherry, I am so sorry to hear that. I’m the same. I use a pain journal to track my pain to show my doctors when I see them every three weeks so they have an idea of what’s going on from day to day. The app I use is called Manage My Pain Pro. I totally understand about stopping work. I have been holding on now for years, but it is affecting my health so badly now, I know in my heart that the best thing to do right now is stop for a while and hope I can get some of my strength back. I have been running on ‘empty’ for a while.

      Reply

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