My Key To Living Well With Chronic Illness

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How do you continue to live life to the full when your health limits everything you do?

How do you cope with waiting for a reprieve in symptoms when the reality is, no reprieve is coming?

I’m not going to say there are easy answers to these questions because there definitely are not. It’s hard. It can be overwhelming to wake up day after day only to discover that your leg is still broken, your fatigue is just as bad, if not worse than it was when you fell asleep the night before. A pile of medication is sitting on your bedside table staring at you alongside a glass of water. An immediate reminder all is not well.

Patience and Purpose.

I have found two things really help me live a fulfilled life despite uncertainty, pain and disappointment.

I have discovered a whole new level of patience over the past 7 years which has become the key to me living well with chronic illness.

Patience with my body.  Patience with my medical team. Patience with people who struggle to understand what it’s like living with a chronic disease.

Patience is not something that comes easy to me. I was always referred to as “instant Sam” by family and close friends. I like things to happen quickly. If I have a goal I have always put 100% of my energy into achieving that goal, as fast and as well as I possibly could.

So how did I become so patient? I learned quickly, once my health deteriorated, that if I wanted to be involved in an activity I loved, slow and steady was the only way of doing it. If I rushed I would literally, physically fall in a heap. A lack of patience in the early days quickly taught me that wasn’t a smart way to live a new life.

I also learned that patience brings a wonderful sense of peace. As expectations are re-aligned, pressure is reduced. Giving yourself permission to live at the pace your body allows is amazingly freeing.

However only you can give yourself that permission. It’s nice to have others support but ultimately unless you allow yourself to adjust your life it just won’t happen. I also believe that if you don’t adjust your life, others in your life won’t get the true picture of how much your health is affecting you. As a result of wearing an unrealistic  “wellness mask” you are at risk of falling into a vicious circle of not feeling supported.

I think it’s really important to work out your limits and let others in your support circle know exactly what those limits are. They then have a clear picture of what they need to do to support you live the best life possible with your chronic disease.

Remember though to be patient while they adjust to the changes you are making. It’s all a process and it all takes time to achieve. Keep in mind your change in health is a change for everyone around you.

Discovering My Purpose

Once you have realigned expectations and discovered you can be patient with your new body, purpose is then so important.

We all need purpose in our life, no matter how large or small.  For some that might be achieving goals like reading an entire book series you’ve always wanted to read or, if you are mobile and can get out of the house for a while, joining a craft group or a choir or volunteering at a local charity.

Due to my disease and disabilities I am pretty much housebound so I have needed to find purpose at home. Starting my blog two years ago was the beginning.

I didn’t just start it without thinking it through. I first completed  an online blogging course through the Australian Writers Centre. It was my initial step to what was going to open a whole new world to me. A world I really had no idea existed and I had no idea how far it would develop.

I was nervous about opening myself up to others. I write about deeply personal things but I felt I needed to tell my story and I hoped it would eventually reach others who were experiencing a similar journey.

I wasn’t interested in how many blog followers I had. I would have been happy to reach one person. I really wanted to just write because I love writing. I had previously (in my 20’s) studied freelance journalism and non fiction writing, so it was a long time love which I suddenly had time to explore.

I also had a deep desire to serve others. I knew I couldn’t volunteer outside of the home but I had been involved with a charitable organisation who had a very small web based support group for women with inflammatory arthritis. I decided to offer my time to help expand the group and transferred it onto Facebook for them. That group has been going for 3 years now with over 1000 members and is an enormous support to those who belong to it.

I sadly had to step down as admin after 12 months as my health deteriorated and I had a period of multiple surgeries and difficult recoveries. I didn’t completely lose my purpose though during that time. I readjusted my expectations again. I kept blogging about my health journey and I remained volunteering with the not for profit organisation, as an administrator for one of their smaller online support groups. It’s a group with 250 members supporting parents who have children with Juvenile Idiopathic Arthritis. It’s heart wrenching but so rewarding to facilitate a place for these parents to connect through their grief and victories.

At the start of 2017, it was clear my disability was not going to improve, in fact it was worsening. I found I had more time on my hands and I felt I needed more purpose. My blog was expanding slowly and I began writing some articles for The Mighty. I was satisfying my writing desire but I wasn’t fully satisfying my desire to serve. I could have returned to my previous online volunteer admin role but there were others able to serve there.

I felt it would be good to try and connect with people who had rare and complex diseases. I had no idea what to do with such a crazy thought, but I had a moment of thinking there is no harm trying to start a closed Facebook group.

So I created Medical Musings With Friends and the rest as they say is history.

Thanks to living with patience and purpose, I am living an incredibly full life from my lounge room, my bedroom and my back deck. I connect with people from all over the world and provide a service where others can feel supported, where they can share their stories, their blogs, their articles. A place where they can make new friends and a place where they are not judged for what they can’t do, but celebrated for what they can do, despite their diseases.

A Few Tips to Help You on Your Journey

If you are starting out on your chronic illness journey or perhaps have been struggling to adapt with the changes it has brought to your life, take a breath and be still for a while.

  • Be patient with yourself.
  • Take time to review how you are trying to live and how you need to be living.
  • Slowly start to make the necessary changes that allow you to live a life where you are patient with your new circumstances.
  • Share your thoughts and the changes you need to make with someone you love and trust.
  • As you remove things from your life that you can no longer do, replace them with things you can do.
  • Find your new purpose, explore it, dream about it and patiently put it in place.

Life with chronic illness and disabilities is not over, even if it may feel like it is at the moment. With time it is possible to begin living again and with patience and purpose being your new friends, a different and  fulfilling life can slowly emerge.

Take care

Sam xx 💞

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

17 thoughts on “My Key To Living Well With Chronic Illness

  1. ‘Patience is a virtue’, as they say. I find I can be incredibly patient with a lot of people and with various things in life, yet there are other things, like with my body sometimes, that it seems to vanish pretty quickly. It can get incredibly frustrating. But remembering to pace, to slow things down, are important, to know that things will be okay with the adjustments you’re having to make to make your life manageable. I’m a big believer in trying to eek out the goodness, lessons learned and strength gained from the challenging or negative times. I also firmly believe that focusing on what we can do, rather than what we can’t, is crucial to living our best lives. It helps empower us to live with more patience and purpose.

    It’s the purpose that can still elude me a lot of the time. I’ve struggled since losing my job, but over the years with ill health up until the last 3 years I’ve never questioned work; I knew I was prepared to work my butt off and take low pay and whatever it took to keep going. Now, these past couple of years, with things going down hill, I don’t see what the heck I can do. Things have gone so far off course, and losing that ability is devastating. I don’t need to tell you or anyone in the chronic illness community that, we all feel it. We know the feeling. I put a lot of my eggs in the basket of work/career, so that when that goes, I felt, and often still feel, that there’s very little left. A lot is tied up in the fact that work is necessary because income in necessary to survive. But beyond that, well, it’s about redefining life and what that means and what you can give back to the world, and that’s far more than jobs/careers. I still get hung up on it.

    Sorry for the ramble! Oh dear, I was just trying to say how much I could relate and that I thought your post was so poignant and it’s got me thinking far too much! Anyway, you’ve done amazingly well with your blog, with setting up the support group, with being an administrator still for another group; your compassion, your honesty, your desire to be there for others and shine a light to offer a little inspiration and hope really shine through in everything you do.
    Caz xxxx

    Liked by 2 people

    1. Oh Caz, thank you so much for sharing your thoughts and the struggles in your own journey. It’s definitely not easy is it. I think you are absolutely awesome. I love your blog, FB page and your advocacy for others is just beautiful. So much meaning and purpose in all of that and you give so much of yourself which is such a gift in the chronic illness community. Don’t doubt for one minute that you don’t have purpose. Lots of love xx

      Liked by 1 person

  2. I really enjoyed this article, starting my blog really helped me to find people in the same situation and finding patience and looking outwards is a big help when illness takes over. Finding ways to keep busy and to improve your life is a big help as well but yes patience is the big game changer

    Liked by 1 person

  3. Sam, this is a great article. I struggled with patience after a turn of events in my life. It’s not easy to readjust. The points and advice you give here are so good for helping us through! Thank you so much for sharing!

    Liked by 1 person

  4. Sam, you are always so encouraging. I always enjoy reading your posts. I guess I have always thought of patience as something I needed for other people and never thought to extend to myself. I like being patient better than living within the limits of my health, so much kinder. I love the Facebook group too, it is very helpful. You’re an inspiration. Many Thanks 8)

    Liked by 1 person

  5. Oh, Sam, you have nailed it again! Patience is not my virtue nor my forte….with myself particularly. I still struggle daily with the things that I can no longer do and being patient with my body for “failing” me. I feel impatient with the family for not picking up on the things that I think need doing and having different priorities to me.
    I suppose that this takes me into my purpose….my new purpose. My identity as a nurse has been taken away, and even that as wife and mother has changed drastically. I still miss my career, the patients, teaching students and working in a team with colleagues every day. Finding that new purpose can be so tricky when you feel unwell, have brain fog and pain, can’t it? For me I became a school governor which filled a gap when I first stopped work and then became a member of an alumni committee. As physically I became more compromised I started blogging initially as a way to keep friends and family informed and to help others as I had been helped prior to my surgery. I soon found this wonderful community, became an admin on CIB and joined various groups. It is good to feel useful again, but the patience remains thin when I can’t do exactly what I want to when I want to.
    But that is part of life really isn’t it, chronic illness or not?! Most of the time I don’t feel that life is over; actually accepting my conditions and that I’m not going to be cured has been liberating and allowed me to move on – if I seem half as positive as you, Sam, then I am happy!! Claire x

    Liked by 1 person

    1. You are incredibly positive Claire and an absolute inspiration to me. You give so much to others in the blogging community and I have no doubt you are a breath of fresh air to anyone who meets you and works with you. Thank you so much for your wonderful encouragement. It means so much xx

      Liked by 1 person

    1. Thanks Janis, Yes I created Swell Gals on FB for AQ in 2015. We started with 50 members, quickly grew to 1000 by the time I handed the reigns over. I was the administrator for the first year with another lady helping me. I added Michelle a few months later and the rest is history, as they say.

      It will always hold a special place in my heart. ❤❤

      Liked by 1 person

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