What can we do to help ourselves?
Strategies for Thriving with Superficial Siderosis
Ataxia, a hallmark symptom of SS, can make even the simplest tasks like walking daunting. However, we can regain independence and stability with the proper assistive devices and strategies. Investing in sturdy walking canes, shoes with excellent grip, and specialised equipment like spikes for harsh weather conditions can make a difference. Additionally, incorporating targeted lower-body exercises into your routine can help strengthen the muscles and improve your overall balance.
Conquering the Challenges of Memory
Keeping track of medications, appointments, and daily tasks can be daunting for individuals with SS, especially when dealing with memory challenges. Leveraging the power of technology can be a lifesaver. From setting medication reminders on your smartphone to utilising note-taking apps to capture important information, these digital tools can help you stay organised and on top of your health management. Additionally, a medical alert bracelet or necklace can provide crucial information to first responders in an emergency.
Staying Socially Connected
Maintaining social connections can be a challenge for individuals with SS, but it is crucial for our overall well-being. Embrace technology to stay in touch with loved ones, whether it's through video calls, instant messaging or social media. Additionally, consider joining online support groups or forums where you can connect with others who understand the unique experiences of living with SS. These virtual communities can provide a sense of belonging, shared experiences and invaluable emotional support.
Advocating for Yourself
Navigating the healthcare system can be daunting, but being your best advocate is crucial. Educate yourself about your condition, research treatment options, and actively communicate with your healthcare team. Don't hesitate to ask questions, voice your concerns, and seek second opinions. Building a solid relationship with your medical providers and being active in your care can empower you to make informed decisions and ensure you receive the support you deserve.
Embracing Emotional Well-being
Living with a chronic condition like Superficial Siderosis can take a toll on our mental and emotional health. It's essential to prioritise self-care and find healthy coping mechanisms to manage the stress, anxiety and depression that may arise. Engage in activities that bring you joy, whether a creative hobby, mindfulness practice, or simply spending time in nature. Consider seeking support from a mental health professional or joining a support group to help you navigate the emotional aspects of your journey.
Mindfulness & Relaxation
Incorporate mindfulness techniques, such as meditation or deep breathing exercises, to help manage stress and promote overall well-being.
Creative Outlets
Explore creative hobbies, like art, music, or writing, to express your emotions and find a sense of purpose and fulfilment.
Connecting with Nature
Spend time outdoors, whether strolling, gardening, or hiking, to reconnect with the natural world and find peace and calm.
Navigating the Financial Landscape
Dealing with the financial implications of Superficial Siderosis can be a significant source of stress. Familiarise yourself with available insurance coverage, disability benefits and community resources that can help alleviate the financial burden. Don't hesitate to seek guidance from financial advisors or patient advocates who can provide expertise and support in navigating the complex healthcare system. By proactively addressing the economic aspects of your condition, you can focus on your well-being and managing your symptoms more effectively.
Celebrating Small Victories
Living with Superficial Siderosis can be challenging and sometimes discouraging, but it's essential to acknowledge and celebrate the small victories along the way. Take time to recognise and appreciate your progress, whether mastering a new mobility technique, remembering to take your medications on time, or simply enjoying a moment of joy and laughter. These small wins can provide the motivation and resilience to keep pushing forward, even on the most challenging days.
Pioneering a Brighter Future
While living with Superficial Siderosis presents unique challenges, the resilience and determination of the SS community are truly inspiring. By sharing our stories, advocating for research and awareness, and supporting one another, we can pave the way for a brighter future for everyone affected by this condition. Let's continue pushing the boundaries of what's possible, celebrating our victories, and inspiring others to join us in this transformative journey.
The 5 Facebook TSB Groups
Superficial Siderosis-The Silent Bleed
https://www.facebook.com/groups/silentbleed/?ref=share_group_link
WAKE UP to the Silent Bleed
https://www.facebook.com/silentbleed/?notif_id=1706026146188669¬if_t=page_user_activity&ref=notif
Friends of TSB
https://www.facebook.com/groups/1666743746900036/?ref=share_group_link
Silent Bleed Volunteers
https://www.facebook.com/groups/328820217683358/?ref=share_group_link
The Silent Bleed management page
https://www.facebook.com/groups/silentbleed/?ref=share_group_link