Chronic is Forever and Random Really is Enough!

It is hard having a chronic illness. It is difficult dealing with the daily pain, the numerous doctor appointments, the fatigue and endless doctor bills. The sheer number of symptoms that accompany your disease is mind-boggling at times. Having a chronic illness is emotionally and physically taxing. You know what the hardest part is? It’s admitting that you have a chronic illness!

Do you miss the old you? The energetic, athletic, healthy person you were. Do you miss your career, your friends, your family? Do you miss the joyful outings you use to attend and the close relationships you had? Me too.

You have to realize somethings will never go back to how they use to be, you have to grieve the loss of that life, of that person you use to be. As you grieve you may find you feel such a sense of guilt, even shame. You missed that office party, your kid’s baseball game, your mom’s birthday party because you did not have the energy to go. Exhaustion is the only friend you really hang out with anymore.

Are you anxious? Afraid of what will happen if you leave the house? Will you have a physical or mental break? Get lost, break down crying? These things have happened to me. Have they happened to you? I was always almost in full panic mode every time I THOUGHT about leaving the house, it still happens, some days.

A disease that is chronic means forever.

Admit it, accept it.

You are allowed to grieve for a while, take the time you need. But then, get back into this game we call life and realize it doesn’t have to be all bad.

There will be days that feel normal enough. Days you look normal enough. Days that are good enough! Admitting to yourself, what you have is the hardest part. Forgive yourself for getting this disease because it is not-your-fault! Once you do you will begin to learn the skills necessary to constantly improve and manage your symptoms. I promise!

Every single day is like getting on a Ferris wheel. You can never tell where the cart on the wheel will stop, it is random. How many times will you gloriously ride to the top? Random. Is the operator in a good mood or bad? Are there people waiting impatiently for their turn or is no one in line? Random, random! A day with a chronic illness is just simply random!

Here’s the deal, admit what you have and forgive yourself. Get on that Ferris wheel and strive for a good day. Prioritizing the things you want to do, let the rest be. If those things were important, they will be there when you have the strength to deal with them.

Learn to live the life you have!

cropped-img_3985.jpg~Kim

13 comments

  1. that is why we must blog
    share
    dare to care
    i m not what i was
    nor never was
    my body
    started falling apart at age thirty
    gout
    shitty heart
    shitty sinuses
    there are good days
    and there are bad days
    rock on!

    Liked by 1 person

  2. So very true about missing the ‘old you’ and needing time to grieve this, then accept where you are, appreciate the positives, and move forward with renewed gusto because there will be good, bad, really bad, and totally unpredictable days. Great post!
    Caz x

    Liked by 1 person

  3. As always Kim, such a timely and helpful post! I’ve been grieving the “old me” and all of the things I used to do and enjoy this time of the year. I’m nothing like the old me and it hurts. I feel like I’m disappointing people and frustrated with wanting to do and be more. Just more. Your posts help me move in the direction of acceptance and motivation to keep fighting to find the “new me”. My authentic self with a chronic illness. Thank you again for helping me in this journey. ~ T

    Liked by 1 person

    1. Aww… I really know that grief. I do. It hurts so very badly. Remember you can still do things but in a different way. You may not be able to ice skate with the kiddos or sled anymore but you can bring the hot chocolate and laugh! You may not be able to host a party but you can rest and be ‘present’ at the party… try to think of how you CAN participate and start some new traditions… just for you and your hubby. We have a special movie, certain snacks and things like playing a board game or slow dancing. An evening stroll is always nice. You hang in there and think how you can enjoy new ways to celebrate the holidays!

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  4. Kim, you always write what I am thinking. You have such a positive and honest way of saying things so people understand. You my dear are such an inspirational to all or us living chronic illness, we all know it is not and never will be a great thing but we all make is SO much farther than some others, which really makes me sad too, I want to be able to share good advice. But Kim, keep doing your great work! It is so helpful to everyone else!!!!!

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  5. This is so true.I get on the Ferris wheel of life everyday,since suffering the last ten years with chronic fatigue,fibromyalgia and facial neuralgia.The bad days out weigh the good as I have to cope with going to work still.Whats a pain free day there isn’t one.Guilt at having to cancel an event is upsetting.You cancel seeing your grandchildren breaks your heart.Yes I’ve greived the old me over the last ten years many a time.You think it gets better it never does.Chronic pain is shattering,you feel bad if you can’t go to work guilty,my family are my rock my life savers,very hard for my husband at times to go out and do things we always loved together.

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    1. Oh! Debbie! I am so sorry to hear how you are suffering! The first years, yes decade is extremely difficult with fibro. The constant pain and fatigue are life-altering.

      This disease happened TO YOU. You did nothing wrong! LEt go of the guilt. That adds to stress and that equals flairs and fibro fog. NO, no, nothing you did caused this disease.

      You will find other ways to move forward in this life with limitations. There are abilities within the limitations. You will find the way!

      You can always contact me, there is a support group online (very good one run by two friends of mine) called Fighting Fibromyalgia One Day at a Time. (on Facebook) I also have co-authored a book if that interests you? A journal called; The Shadow Boxers, Fighting Fibromyalgia. I sell it here on my blog and on Amazon.

      I’m worried about you, please reach out. You do not have to walk this road by yourself. ~Kim

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