Building a self-management toolbox to reduce the risk of symptoms, unpredictable flares, and disease progression should be a vital part of a treatment plan for everyone living with Multiple Sclerosis.
In a perfect world, patients would be given written guidelines that included what to expect due to MS, and what to do about it. Patients and care teams would work together to complete individualized outlines of treatment plans that contained, among other things, ongoing mental health counseling and coping strategies.
The sad truth-
The reality is that many people diagnosed with Multiple Sclerosis are told their diagnosis and handed brochures to read to decide on what medication to take. Complementary and alternative treatment options are generally not discussed unless you specifically ask about them. As a result, this leaves people uninformed about all possible treatment interventions.
Uncertain and unprepared for life with a chronic illness-
If you’re anything like me, you might not even remember discussing how symptoms could impact your future. I heard the words, no cure, and after that, any information I received did not compute. Because of this, for years I didn’t know what to expect and mostly lived in fear of what might happen to me.
The bottom line is that most people are sent back into the world after diagnosis, uncertain and unprepared to manage their new life without a complete plan or the tools needed to navigate living with a chronic illness.
What is a self-management toolbox?
A self-management toolbox is a collection of strategies, coping skills, and support options to help people successfully adapt mentally and physically to the challenges that may arise from living with a chronic illness.
First things first-
Firstly, before building a self-management toolbox, have a clear understanding of your diagnosis. Secondly, do your own research. For example, learn the difference between a flare, a relapse, and a pseudo-relapse. Finally, familiarize yourself with potential symptoms and symptom triggers so that you can address these issues immediately. You can read more about these topics, here.
Advocate for yourself-
Your care team works for you. It’s not your job to worry about upsetting the doctor. Be 100% comfortable with the decisions being made and remember that treatment plans are flexible. If you don’t like something, change it and never be afraid to get a second opinion.
The benefits of building your own self-management toolbox-
Being involved in the decision-making process of choosing your treatment can promote empowerment, making it more likely you will stick to the plan. Being a part of the conversation to determine which lifestyle improvements may benefit managing symptoms, will help you to be an active participant in your health care.
How to build a self-management toolbox to live better with MS:
1. Create a disease management plan-
The goal of creating a disease management plan is to specifically identify your individual needs and then structure a care team and support network that can be utilized when needed.
Key components of a disease management plan:
Educate yourself! The more you know about MS, the easier it will be for you to deal with challenges. Patient education should include self-management strategies to help manage expectations and reduce the risk of relapse.
Do your own research to make sure you are making informed decisions based on current, relevant, and accurate information.
We all know that every person’s situation is unique, and every treatment plan will be different. Talk to your medical professional to decide which treatment would be the most effective for your individual circumstances to give you the best-projected outcome.
Explore the following topics with your care team to guide you in choosing your treatment plan:
- Treatment options
- Application of medication (pill vs. injection vs. infusion)
- Alternative and complementary treatment options
- Medication options
- Side-effects of medications
- Potential symptoms
- Possible outcomes
- Beneficial lifestyle modifications
Questions to consider:
- Are lifestyle modifications and/or medications affordable?
- Which subsidies, grants, or financial assistance programs are available?
- Are there any infusion facilities nearby?
- Can I adhere to this treatment and work and/or complete daily tasks?
- Can I self-manage behavioral changes, or do I need help?
It’s important to keep track of symptoms and disease progression through doctor visits, MRI, and symptoms diaries so that we may track what kind of impact interventions are having on disease activity. In doing so, we can use the information to periodically re-evaluate the treatment plan and adjust accordingly.
Having family and friends to help get you through tough times is vital for everyone, but it’s especially important when living with a chronic illness.
People with MS live with variable mental and physical changes, the burden of which can make a person feel helpless and hopeless. For this reason, it’s very important to keep the lines of communication open with loved ones and maintain strong relationships.
Don’t forget about mental health support!
Receiving a life-changing diagnosis is both shocking and terrifying, therefore, do yourself a favor and seek out guidance from a professional so that you can develop stress management strategies to cope with everyday life.
Support can also mean financial or practical help and there are many resources and services available to help people living with MS. Support needs will change over time and having a support network can help you navigate the unexpected.
2. Build a self-management toolbox
The purpose of building a self-management toolbox is to reduce the impact of symptoms on quality of life and it should include strategies for the following elements:
- Stress management
- Mental health support
- Exercise and movement
- Nutrition and immune support
- Sleep routine
- Pain management
- Rehabilitative therapies
More areas to explore:
- Financial planning
- Long-term care
- Short and Long-term goals
- Balancing home and work life
- Family planning
You know the expression, ‘Man plans, and God laughs?” Similarly, the same could be said about Multiple Sclerosis. Even the best-laid plans don’t always turn out the way we hope.
That said, having a self-management toolbox of strategies and life skills in place to fall back on, enables us to troubleshoot potential challenges and have the best possible chance of a good outcome.
What’s in your toolbox? Let us know in the comments.
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