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The Top 5 things I’ve learnt in a year of chronic illness

27 May 14
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I have so many posts I need to write and share with you over the next few weeks including book reviews, guidance for setting and achieving goals with a chronic illness, and requests for help and feedback on a couple of big projects I’m working on. I look forward to sharing all of these with you and with setting some little challenges to help us all move towards being the best we can be starting with today’s post: Lessons learnt in a year of chronic illness.

The last year has been very stressful and busy for me but through all of this I feel I’ve learnt a few things about myself and how I can accept and live with my chronic illnesses.


Photo (c) E. S. January, 2014

Photo (c) E. S. January, 2014

The Top 5 Things I’ve learnt from my chronic illnesses

  1. Everyone’s experiences are different. Each and every person who suffers from a chronic illness (even the same illness) has different symptoms and reacts differently to different treatments. For example my main symptoms are extreme brain fog, constant pain and constant exhaustion. A friend of mine who also has ME/CFS doesn’t have the constant pain, instead her worst symptom is sensory sensitivity (I struggle with this but not as much). For some people antidepressants such as Amitriptyline (Endep) help with pain and sleep issues, over the last 2 months I’ve found it doesn’t help me. I have found though that a TENS machine helps with some of my pain and that meditation and being mindful is the best thing I can do to help me be able to focus better and actually achieve the things I want to do within my limits.

    2014-05-15 07.36.00

    Found on Facebook

  2. I’m stronger than I thought. Many people around me, including my husband, doctors and close friends, have commented on how well I have been coping with this illness. I’ve had a few people actually tell me it’s OK to share my negative thoughts, as if I was just hiding them away. Somehow I have managed to stay mainly positive about my situation. Yes I’ve had a few bad days spent crying and feeling sorry for myself, but overall I’ve seen the benefits of having more time to do the things I need to do to feel better, to relax and to reassess my life.

    Celebrating the success of the Foggy Frog Kickstarter Campaign

    Celebrating the success of the Foggy Frog Kickstarter Campaign

  3. Family and community are the most important thing. Having a strong relationship with my husband and both our families, as well as our close friends, has meant that I’ve had ongoing support since I first became ill. I think this has been a major factor in my ability to stay positive. However, sometimes I’ve found that although they try to understand (and I do love you all for it) they don’t always really get what I’m going through and why I’m making certain decisions. This is where my new found group of friends, here and on Facebook and Twitter, has really helped. I’ve made connections with others who are going through the same things as me, I’ve been able to help them and they’ve been able to help me.

    My husband and I with our closest friends on our wedding day. Photo (c) Doug Quine Photography, November 2011

    My husband and I with our closest friends on our wedding day.
    Photo (c) Doug Quine Photography, November 2011

  4. It’s important to have something you’re passionate about. The first 6 months of being ill were the most difficult for me. During this time I had quite a few negative pity days and I struggled to find ways in which I could feel useful and purposeful in my life. Then I began blogging, I made new friends and I started working on the Foggy Frog Campaign. I realised that even if I did not have the enery to work fulltime, be out in the world talking to people or researching and developing key sustainability strategies and projects I could still be useful. I just had to find a way to work within my limits on a project that I felt passionate about and that I could engage others in as well. I’m still passionate about the environment and sustainability but at the moment my strongest passion is raising awareness and advocating for the chronically ill using Foggy Frog and the Pain Gang as a tool.

    Foggy Frog (c) Megan S, January 2014

    Foggy Frog (c) Megan S, January 2014

  5. Being ill opens up new and exciting opportunities. Before falling ill I was working fulltime in a job I enjoyed. It wasn’t completely my dream job (half was, the other half was necessary work in the position but not what I really enjoyed) but I was fully engaged, enthusiastic and passionate about the work I was doing. Then I got sick. I still wanted to do the work, but I didn’t have the energy or strength to keep it up. Slowly, as my health has improved and stabilised slightly, I have found new passions in chronic illness awareness and advocacy, mindfulness, meditation and sewing. I have also reignited a passion for yoga and a desire to run my own business. I have previously tried working for my self doing consultancy work with people I had worked with in the past. I really enjoyed the flexibility and variety this work gave me but I had not been making enough money for us to live off. Once again, the desire to work for myself has come to the surface. There are pros and cons to this and I will assess those in a future post but it is something to seriously consider at this point in time.

    Found on Facebook

    Found on Facebook

Overall, having a chronic illness has made me realise the importance of a great support network, a positive and flexible view on life, and keeping yourself passionate and engaged in what you do.

Chronic illness takes away so much and can make it difficult to be dependable and spontaneous but there is also so much you can learn and do when you accept that a chronic illness is for life and you have to learn to live with it. Consider your options and make the right decisions for you right now. When living with a chronic illness I believe it’s important to live in the moment, don’t compare what you’re able to do now to what you used to be able to do and don’t spend all your time worrying and stressing about the future.

Found on Facebook

Found on Facebook

How do you want to feel now?

What can you do to feel that way?

These are the questions I’ve started asking myself daily. Try it, think of one thing you can do today to make you feel happy, loved, accomplished or whatever feeling it is you need to feel right now.

If you focus on what you can do and take action every day (no matter how small that action is) you will keep moving forward.

My challenge for you today is to ask yourself the questions above and let us know what one thing you’re going to do today to get closer to how you want to feel.

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  1. Deborah May 27, 2014 at 3:46 pm

    That’s a great list of 5! Definitely looking at the positive aspects. While the downside of chronic illness cannot be denied, it is great to see how you have found your way to notice things like your own strength as well as the power of community. Nice post!

    • Megan S May 27, 2014 at 3:50 pm

      Thanks Deborah, I’ve been mulling this over for a while. Is there anything else you would have adde

      • Deborah May 28, 2014 at 10:36 am

        I realize you covered that 1. Everyone’s experiences are different and 4. It’s important to have something you’re passionate about.

        Even for people whose passions lie in other areas, maybe the idea of writing should be included. Journaling and blogging–the act of sharing the journey and discoveries is an important part of learning how to adjust to the changes. And it helps others. When everyone is sharing, we are all better off. Since everyone’s experiences are different, the sharing through writing gives us all ideas to try that we may not have thought of. And it builds that support group. For people whose passion lies with crafts or gardening, finding a little time to jot down a few notes (and perhaps share them in a blog–either their own or someone else’s (through comments)–can help everyone.

        • Megan S May 28, 2014 at 11:44 am

          Great idea! I was planning to do a top 10 list but thanks to brain fog I went blank and couldn’t remember the other things I was going to say.

          Writing as a tool of gaining understanding of yourself and your experiences is definitely something I’d advocate for! I’ve learnt a lot through starting this blog and it’s leading to a lot of opportunities. Sharing is definitely important!

          PS. Sorry if this makes no sense, or is a little disjointed, the fog is high today!

  2. Mandy May 27, 2014 at 6:01 pm

    What a fantastic article. It has made me realise that yes i hve what i hve but im not the only one and that if i reach out i will find support in places i never thought of.

    • Megan S May 27, 2014 at 7:47 pm

      I’m glad it helped!

  3. eclecticoddsnsods May 27, 2014 at 6:30 pm

    Great list and meditation is being mentioned so often as being helpful I need to do it more x

    • Megan S May 27, 2014 at 7:46 pm

      Thanks 🙂 Anything you’d add?

      • eclecticoddsnsods May 27, 2014 at 8:48 pm

        ive tried yoga nidra as i cant sit down and this allows me to lie down, theres no music its fabulous, i have a very busy head and was amazed that it allows me to just shut off xx

        • Megan S May 27, 2014 at 8:53 pm

          Yoga nidra is great! Although sometimes I find my head just won’t shut off. 🙂

          • eclecticoddsnsods May 27, 2014 at 9:13 pm

            it seems to work for me even if i struggle for a while however not all meditation cds have done this for me, i guess you connect with the voice and method? 😉

          • Megan S May 27, 2014 at 9:16 pm

            Agreed. The voice seems to make a big difference for me.

          • eclecticoddsnsods May 28, 2014 at 6:46 pm

            exactly, i am not so good with american drawley voices,, soft subtle ones work better and male is my preference x

  4. Roberta Smart May 27, 2014 at 7:42 pm

    Reblogged this on Hidden Pathways and commented:

  5. doriandean May 27, 2014 at 10:12 pm

    What a beautiful blog that you have. I stumbled on your blog from a reblog from Roberta Smart. Glad that I did. Good luck on your journey and I wish you only the best in finding your path to being able to fulfill your goals and dreams. 🙂

    • Megan S May 28, 2014 at 7:51 am

      Thank you so much for the kind words and well wishes. I’m glad you came over and checked my blog out.

  6. Dr. Kent May 28, 2014 at 5:49 am

    great and inspirational post

    • Megan S May 28, 2014 at 7:52 am

      Thank you Dr Kent. Would you add anything to this?

  7. seasonedsistah2 May 29, 2014 at 5:47 am

    Thank you for sharing these five things. I am constantly on the lookout for suggestions to add to my “chronic pain self-management tool kit.”

    • Megan S May 29, 2014 at 2:34 pm

      You’re welcome 🙂

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  10. Deb May 31, 2014 at 9:28 am

    Thank you so much — diagnosed about 3 years ago with Crohns – over 50 years old. I was told I was “too old” for this diagnosis — non-the less — it is with me. Never sick a day in my life before I have had a whole host of changes to my life. Had to make a job change to have a less “stressful” job and it has paid off. Still though — my husband reminds me that the week before my infusion is not good — I try to hide it but he knows. I just hate living my life based on my illness. I suffer from pain, brain fog and desperate fatigue as well. But at least I haven’t been in the hospital for almost a year — 11 days one time. I hate PIC lines and steroids !!!

    • Megan S May 31, 2014 at 9:39 am

      You’re welcome Deb. I’m sorry to hear about your diagnosis but it seems that you are slowly finding what works for you. It’s great that you’ve managed to avoid the hospital for almost a year.

  11. margie June 1, 2014 at 5:10 am

    thanks for sharing Megan!

    • Megan S June 1, 2014 at 9:22 am

      You’re welcome Margie 😉

  12. Faye June 4, 2014 at 3:46 am

    Great post! I love the idea of illness actually being a blessing in disguise by bringing about new opportunities! I have found the same 🙂
    Faye |

    • Megan S June 4, 2014 at 10:49 am

      Thanks Faye, it’s definitely a good thing when people are able to recognise the blessings around them no matter what their situation is.

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