At the start of a new week or month, I have a, “Celebrations Milestones and Memories” segment on my Facebook Forum, Medical Musings with Friends.
The idea is to take a quiet moment, to think about what lies ahead. We muse about how we are feeling, what we are concerned about, what we are excited about.
Appointments, celebrations and milestones are also shared by members, so together we can support and encourage each other.
Sharing those thoughts in a safe place, like an online chronic illness group, is really cathartic. Writing down your thoughts and speaking about them, can help provide clarity and peace, in the midst of pain and disease.
Uncertainty often encompasses life at every turn when living with chronic disease. Having friends to turn to, online or otherwise, who are walking in your shoes, can provide tangible comfort.
The Chronic Disease Curveball
Sometimes though, when our pain or disease throws us a curveball, it can feel incredibly overwhelming. We can feel anxious and afraid. We often feel isolated as we struggle with worrying symptoms, even though we may be surrounded and supported by friends and loved ones.
All of those feelings are so normal. Partly we feel them because we are experiencing more change. Changes in disease symptoms often results in changing how we need to manage our daily life. Change then causes the grief process to start again.
My pain has escalated to a new level over recent months. I know it’s going to happen as my disease progresses. It’s my reality and I can curl up in a ball and give up, or I can take some control over my circumstances.
Like so many of us living with chronic disease, there are often little or no solutions when disease progresses. All I can do is make further life changes to accommodate the worsening disability.
I’m a born Leader, planner and organiser, so when changes occur I start automatically thinking about what I can do to accommodate those changes. I was born feet first and my family always joked that I arrived ready for action. That’s not such a bad thing given my life’s circumstances.
The Plan and Review Process
If you’re finding that your disease is worsening and there are little treatment options available, or perhaps you’ve gone into sudden remission, I’d really encourage you to take time to create a Chronic Disease Management plan. A plan where you’re the author and it’s completely tailored for your needs.
If nothing else it will give you a sense of taking some control, in a situation that can feel like a ship in a storm without a captain.
It’s your life, you can be the Captain.
Your Chronic Disease Management Plan can include whatever you want but as a starting point I’ll share some key areas to help get you stared:
□ Activities – What you can do, what do you need help with and what can’t you do?
□ Environment – Is there anything in your home that is impacting your pain/disease and requires changing? (ie: position of items in cupboards or more major household changes)
□ Rest Periods – How often do you need them and when? What impedes you having them and what can you do to fix that?
□ Medical Reviews – Are you happy with your current medical team? Do you need to make any changes? Are you happy with how often you see them? Do you need to increase or reduce your number of appointments?
□ Leisure -What are the things that help you relax? How can you make sure you do more of these things?
□ Family / Friends – Setting boundaries. How often can you cope with visitors etc? Do you need to remove toxic relationships?
□ Goals – Are there things you really want to achieve (eg: getting out for coffee or maybe a travel goal) How will you do that? What support will you need?
You get the idea. Hopefully these suggestions will ignite other key areas as you start thinking about your own life.
Taking Time to Review
I’m taking time this week to re-evaluate my activities. I’m reviewing what I do now, what can I do differently and asking myself what I shouldn’t be doing at all?
The last question will be the hardest as I love what I’m doing now, however I know I must find more time to rest my body and my mind.
I’ll let you know how I get on with that process. Might take me a little while to work through it.
Introducing A New Focus
I’ve decided including activities in my life which don’t focus on chronic illness are important to my well-being. I’ve recently joined a couple of online forums focused on interior decor and French Chateau renovations. So enjoying these.
I’ve also started Vlogging and connecting differently with my forum members via FB live feeds.
Doing something new is invigorating, and although it sounds as if I’m taking more on, I’m finding focusing my energy in a different way, is exciting and helps with my pain management.
I’ll leave you with my latest Vlog which focuses on another passion of mine…..flower arranging. I hope you enjoy
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
If you would like to read a little more about my journey, here’s the link to My Story