Life Beyond Chronic Illness

 Navigating Life With Chronic Illness

It is hard to believe it has been so long since I have made a post. This chronic illness has taken a toll on me. Good news is my blood work has been okay for over a year and I completely off of the Prednisone. I take an immune suppressant Azathioprine and I had hoped when my body had this under control I would return to my previous self. Unfortunately this is not the case with Chronic Illness and I still struggle every day with symptoms.

I am unable to work so I feel like I have lost a part of myself. I have 2 careers that I have done for over 25 years and now I struggle with not being able to do those and many other things I enjoy as well. Who is this new me? Am I retired or do I still cling onto the hope that I will be able to return to work one day?

I have spent my time doing art and writing which has been great therapy for me. I have added to this site an Art page and a Writing page if you would like to see some of my work.

I went back and reviewed my previous posts and I seem to be writing about the same things today. So over a year later here are my thoughts a to share and things I have learned.

Give yourself grace.  You are navigating a new path that is such a difficult and heavy place and it is not easy to carry. Experiencing the trauma of illness can bring on waves of depression and anxiety and it’s okay to feel the weight of that. It is also okay to grieve the person you once were.  As time passes you will discover new ways to cope and remember being kind to yourself is vital.

The ongoing journey- experiences that are now a part of my life

Regular testing and Doctor visits are now a part of life- Bloodwork, MRIs, Ultrasounds, bone density tests etc.

Pain is something I deal with every day.  Medications can help but there are many pain medications we cannot take; my doctor approves Tylenol.   Epsom salt baths, stretching,

and distractions are my go-to. (see the piece I wrote titled 'The Unwelcomed Guest' on the writing page)

Fatigue comes and stays as long as it wants and is unpredictable.

Maybe there is a way to accept and embrace it when it comes.

• Look at it as me time.  Get comfortable, close your eyes and concentrate on your    breathing, if you mind wanders just bring it back to your breathe.

• Move through it.   Find something to do.  Water the plants, take a walk, do stretches, do some art, write a letter, call a friend.

• Take a nap.   You deserve it.

• Watch an easy show

• Listen to music

• Zone out

Brain Fog is a real thing, confusion, forgetfulness, difficulty concentrating and reduced mental clarity. This is not a good time to drive, multitask, make important decisions or engaging  in activities that require a high mental effort.

Insomnia comes and goes as it pleases with no rhyme or reason. Plan on taking naps as needed and realize this a part of your new life. I don't make appointments before 11:00am

Medication side effects where do I even begin. I can not be sure the many symptoms I have are related to medication, or just symptoms of my AIH

Navigating complex healthcare systems can be challenging. You may spend a lot of time on the phone, reading content, managing billing or making appointments. It is a learning curve and does take a lot of effort.

Managing multiple medications and Doctors.   With an array of doctors from liver specialist to pain management you need to someone to help keep track of medications and help you make informed decisions.  I rely on my primary care physician to be my base for all my medical information and oversee it all.  I have my husband and sister to discuss and help with important decisions about my health.

Accepting your new normal  

 In so many aspects I am a completely different person and not by choice. I hear people call this your new normal but, this is my new reality. Sometimes ideas and plans won’t work and it is just the way it is. You have to learn to accept that this is your new way of life and discover new ways to appreciate and enjoy your situation.

Things that I find helpful:

• Make a list of positive things in your life to review as needed.

• Practicing Gratitude daily

  I like to reflect when I wake up in the morning before I get out of bed.

• Counseling or Therapy

•        A therapist can teach you coping skills and help you navigate life’s changes

• Medications

  Besides the medications for our illness, you may want something to help you manage stress, anxiety and pain.

• Physical Therapy-

  To work on a specific part of the body that is causing you issues. Hips, neck etc.

• Exercise

  Gentle yoga, walking, bike ride, rowing machine or stretching exercises,

  whatever you are able and comfortable to do just get the body moving.

• Make a Plan

  Remember that some days you will not be capable of doing things, but you will always have days that you can. On the days that you can create a strategic plan to guide you during the days you cannot. I will make a separate post with the plan I am creating as an example