Hi friends!
We have so many women in our community who are in later stage four of lipedema and mobility has become so difficult. In fact, one study shows that 63% of women with lipedema have some form of mobility issue. I have an impossible soft spot for our stage IV ladies who are oftentimes told by doctors that they cannot be accommodated with surgery for one reason for another. While I’m advocating for the development of surgical facilities that have higher weight equipment and specially trained doctors and anesthesiologists who will help our later stage ladies, there is still the reality that we do have sisters in our community who are at home, full time. I very strongly believe that we all have and can find purpose, joy and happiness in life, in all situations. So today, I’m writing this post with love for my ladies who are bedbound.
Living with mobility issues that keep you bedbound can feel like a limitation, but it doesn’t have to define your quality of life. With a shift in perspective and a touch of creativity, you can create a world of opportunities and experiences right from your bed. Here are some ways to make the most of your journey and blossom within your unique circumstances:
1. Cultivate Your Comfort:
Your bed is your haven, so prioritize its comfort. Invest in adjustable pillows, soft bedding, and supportive cushions. Explore temperature-regulating options or fans to maintain a comfortable climate. Surround yourself with beautiful items that inspire joy, like pictures, flowers, or a cozy throw blanket. Remember, a comfortable environment fosters a positive mindset. I love the idea of making sure you’re also in a space that includes lots of natural sunlight. If you have those blinds shut all the time, find a way to let the sunshine in, because it’s so important for our mental and physical health.
2. Embrace Connection:
Staying connected is vital for emotional well-being. Video calls and online communities offer vibrant social spaces. Explore online book clubs, support groups, or virtual events based on your interests. Don’t underestimate the power of old-fashioned letters or phone calls with loved ones. Foster meaningful connections that nourish your soul. I believe participating in activities like the Lipedema Patient Roundtable, webinars, edX classes are so helpful to make connection to other ladies in our community who may have similar experiences.
3. Unleash Your Creativity:
Turn your bed into a creative hub! Write, paint, knit, or take online courses to explore your artistic side. Learn a new language, listen to audiobooks, or delve into podcasts to stimulate your mind. Remember, creativity has no limitations and can be your passport to new worlds. One of these days I’m going to take that online drawing class and learn how to draw like an adult. There are so many crafty things you can enjoy from the comfort of home and SO many free tutorials online, what will you try?
4. Build Your Strength from Bed:
Being bedbound doesn’t have to mean missing out on the joy of movement. You can use light weights and resistance bands to work out! Soup cans, water bottles, or even heavy socks can also become your mini gym equipment. They might not seem fancy, but you can use them to build strength in your arms, shoulders, and even your wrists. Each repetition is a small victory, making you stronger and reminding you that your body is amazing, even when you’re not feeling on top of your game. So, grab your makeshift weights, turn your bed into a mini gym, and become your own fitness champion, one lift at a time! Another thing you can do is yoga designed for being done in the bed. Or even do arm circles, leg lifts, ankle rotations, toe taps, stretching, and shoulder raises. The more you move, the better your overall health. So enjoy some intentional movement wherever you are, every day.
5. Prioritize Self-Care:
Taking care of yourself is crucial. Practice relaxation techniques like meditation or deep breathing. Indulge in a warm bath, listen to calming music, or enjoy aromatherapy. Treat yourself to a good book, a favorite movie, or a healthy snack. Do your makeup, fix your hair, and definitely do that Manual Lymphatic Drainage! Remember, self-care is not selfish, it’s essential for your well-being.
6. Engage Your Senses:
Sensory experiences can enrich your life. Plant fragrant flowers near your bed, light aromatic candles, or invest in a diffuser with calming scents. Play soothing music, listen to nature sounds, or enjoy delicious textures through mindful eating. Remember, sensory experiences can transport you to different worlds and evoke positive emotions.
7. Work from Home:
If your brain wants to work and stay super busy, the remote work revolution is your friend! Gone are the days of commuting struggles and inaccessible offices, and having to travel each week to visit the office or clients. Now, with flexible hours and digital tools, your bed can become your headquarters. From data analysis, online therapy opportunities, and writing to coding and customer service, a world of remote work awaits. So dust off your skills, tap into your internet connection, and conquer the workday, one comfortable click at a time! Check out any of the job sites like LinkedIn jobs, Indeed, etc. and use “remote” as the location. You’ll be blown away by how many companies are hiring remote workers. If you want to get back in the game, GO FOR IT!
Remember, Your Worth is Intangible:
Your mobility may be limited, but your spirit is boundless. Your value lies not in what you can do physically, but in your inner strength, creativity, your mental abilities, and capacity for love and connection. Remember, you are worthy and deserving of a fulfilling life, no matter your circumstances.
Living with mobility limitations can be challenging, but it doesn’t have to define you. By nurturing your comfort, creativity, connections, and self-care, you can create a vibrant and fulfilling life, blooming where you’re planted. Remember, you are more than your limitations, you are a force of resilience and strength waiting to be unleashed.
I am pushing for, and waiting for the day when we find a cure for lipedema and a way to reverse it, for all of us. But for my ladies who are in that stage IV or higher, know my heart is with you.
No matter what, be kind to yourselves.
Susan
Study source:
Romeijn JRM, de Rooij MJM, Janssen L, Martens H. Exploration of Patient Characteristics and Quality of Life in Patients with Lipoedema Using a Survey. Dermatol Ther (Heidelb). 2018 Jun;8(2):303-311. doi: 10.1007/s13555-018-0241-6. Epub 2018 May 10. PMID: 29748843; PMCID: PMC6002318.
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