Published on Unwritten May 7, 2024

Disability Doesn’t Vanish, So Neither Should Our Services  (readunwritten.com)

I live with multiple disabilities, including Cerebral Palsy. As a result, I went through my school years with the support of physical and occupational therapy. However, as my senior year ended, I faced the harsh reality that these vital services would soon disappear. And that shouldn’t be the case for anyone with a disability.

For those of us with disabilities, aging brings lots of changes. Yet, there’s a startling lack of research and understanding about the intersection of disability and aging and its profound impact on our lives. Recently, I stumbled upon a poignant Instagram post by Mary Fashik, a passionate advocate, echoing this sentiment.

Imagine if our support systems could and would easily transition with us as we graduated from the school system. 

Our quality of life would improve as our bodies receive the ongoing care they need. I reflect on how invaluable this is for all people living with disabilities. It would also have been so beneficial for me and my life right now. 

A few years back, I went to a concert in NYC with a best friend, relishing the excitement of the moment. Little did I know that the aftermath would confine me to the couch for nearly two months, grappling with excruciating tightness and spasticity. This was uncharted territory for me, a stark reminder of the challenges that come with aging with a disability.

Spasticity, a common symptom of Cerebral Palsy, stems from damage to the brain’s control over muscle tone and movement. While children with CP may not initially exhibit spasticity symptoms, they often intensify with age. My own experience serves as a testament to this reality. 

The non-existence of ongoing physical therapy exacerbates these challenges. 

I often wonder how different my life would be if I had access to the support I needed as I transitioned into adulthood. Society must acknowledge that children with disabilities grow into adults who continue to require support, perhaps even more so than before.

It is so essential that there is a collective shift in perspective. It’s time for the medical community, caregivers, and society at large to recognize that the needs of individuals with disabilities don’t vanish with childhood. We matter, and it’s high time our voices are heard. We would listen and hear what you need if the roles were reversed. It is time for society to do the same, no matter how uncomfortable it may be. 

All we want to do is live our best lives like everyone else, able-bodied or not.

Hi everyone My name is Larissa I am a person with a disability I have CP an am an amputee but I don’t let any of that define me and what I am able to do an accomplish due to my disability I’m a writer activist of many things and All and all Just a lover of life. To learn more about Larissa, please follow here blog at this link: larissa-martin

The best piece of advice I was every given was to do something fun everyday.

It can be really hard to follow that advice when you’re dealing with chronic pain. Appointments can take over your life leaving you very little down time. Awful flareups of symptoms can last days, weeks, months, making it very hard to cope. Or you just feel down much or all of the time.

But that’s also why its so important to be very, very intentional about finding something fun or enjoyable to do every day. And it can be anything that brings you joy- colouring, listening to a podcast, watching the next episode of the series you’re binge watching, baking, spending time with your pets, going for a walk.

For me, I have different types of activities I do depending on how I’m feeling that day. Some days, listening to podcasts is the extent of my energy level. Finding ones that are funny and uplifting helps me as I need a good laugh on a rough day. It also helps to immerse myself in a good story so I can temporarily forget what I’m struggling with. Or doodling in my sketchbook is something low-energy that I can do from the comfort of my bed or couch.

And, of course, my cats, Thomas and Cleo, are always ready for a good cuddle session. They jump into my lap as soon as I sit down on the couch, demanding to be petted. Spending time with them brings me a ton of joy and is very relaxing. And I find their presence comforting.

Other days, I can do more active things. I love gardening and just being outside fills my soul. Watching to see what new flowers are in bloom today really brightens my day. As does picking flowers from my garden to enjoy inside.

And I’ve also found that volunteering also brings me a lot of joy. Spending time helping others helps me too. It helps me be part of something bigger than myself and to connect with others in a meaningful way. It gets me out of my head and lets me focus on others. I appreciate that there are lots of ways to volunteer, including online options that I can do at my own pace when I’m feeling up to it.

As much as life with chronic pain is a struggle, there is still joy and goodness in life. You just have to be very intentional about finding it.  

Hi, I’m Emily Summerhayes, I’m thrilled to be a guest here! When I’m not crafting, sewing, or drawing, you are most likely to find me in the garden ripping out weeds. Or playing with my miniature goats Cinnamon and Sesame or cuddling my cats Thomas and Cleo and dog Diesel. I have CRPS, FND, and POTS, but still love to create, swim, volunteer with 4-H, and be outside.

Chronically ill individuals should learn to recognize some of the early warning signs of stress or symptom exacerbation so that they don’t suffer unduly.

Some of the early indicators of stress are increased pain, fatigue, irritability, and increased muscle tension. Some may even have stomach pain or a feeling of hunger even after they’ve eaten.

To mitigate these triggers, we must manage our stress levels and pace ourselves.

Monitoring stress indicators can be crucial for managing chronic illness effectively.

Here are ten ways individuals can monitor their stress indicators:

Keep a Symptom Journal:

Maintain a daily journal to record symptoms experienced along with stress levels. Note any triggers or patterns that emerge.

Use Wearable Devices:

Wearable fitness trackers or smartwatches can monitor physiological parameters like heart rate variability (HRV), which can indicate stress levels.

Practice Mindfulness and Meditation:

Engage in mindfulness or meditation practices to develop awareness of stress signals in the body. Regular practice can help recognize stress indicators more effectively.

Utilize Stress Tracking Apps:

Several mobile apps are available to track stress levels, mood changes, and related symptoms. These apps often use self-reporting and sometimes integrate with wearable devices for more comprehensive monitoring.

Measure Breathing Patterns:

Deep, slow breathing is associated with relaxation, while shallow, rapid breathing may indicate stress. Monitoring breathing patterns throughout the day can provide insights into stress levels.

Assess Sleep Quality:

Poor sleep quality often accompanies increased stress. Monitoring sleep patterns and quality using sleep tracking devices or apps can help identify correlations between stress and sleep disturbances.

Track Physical Symptoms:

Chronic illness can manifest physical symptoms that worsen under stress. Keeping track of changes in pain levels, fatigue, gastrointestinal symptoms, or other physical manifestations can indicate heightened stress.

Monitor Activity Levels:

Physical activity can both alleviate and be affected by stress. Monitoring activity levels, such as steps taken per day or time spent exercising, can provide insights into how stress impacts daily routines.

Use Biofeedback Devices:

Biofeedback devices measure physiological responses to stress, such as skin conductance, muscle tension, or temperature. These devices can provide real-time feedback on stress levels and help individuals learn to manage stress responses.

Seek Professional Guidance:

Consulting healthcare providers, therapists, or counselors experienced in managing chronic illness and stress can provide personalized strategies for monitoring and coping with stress indicators effectively.

By employing these monitoring techniques, individuals with chronic illness can gain better insight into their stress levels and take proactive steps to manage their health more effectively.

It’s important for the chronically ill to connect with others facing similar challenges through online forums, social media groups, or virtual support networks to share experiences, tips, and encouragement.

Since the pandemic, we’ve developed a lot of unique ways to get together online via zoom or Facebook messenger. That way, we can stay in touch with others and still stay in the comforts of our home.

This is good news for the chronically ill who especially struggle with pain and fatigue. Any outing can take so much time, energy, and can increase our pain levels as well. Therefore, forming or joining online communities can be a godsend for us.

There are a lot of online support groups, from those with the arthritis society, fibromyalgia support network and much more. There is also a migraine support network which has workshops and support groups for every type of need.

Here are some ways to join and maintain social connections online.

Join Condition-Specific Online Communities:

Seek out forums or social media groups that cater specifically to individuals with the same chronic illness. These communities provide a safe space to share experiences, ask questions, and offer support.

Participate in Virtual Support Groups:

Many organizations host virtual support groups via video conferencing platforms like Zoom or through dedicated forums. These groups offer a chance to connect with others facing similar challenges and share coping strategies.

Engage in Social Media Platforms:

Utilize platforms like Twitter, Instagram, or Facebook to connect with others who have similar health conditions. Follow relevant hashtags and join conversations to build relationships and exchange support.

Attend Webinars and Online Events:

Look for webinars, workshops, and online events related to chronic illness management. These platforms not only provide valuable information but also offer opportunities to interact with experts and fellow participants.

Start a Blog or Vlog:

Share your journey with chronic illness through blogging or vlogging. By documenting your experiences, you can connect with others facing similar challenges and foster a sense of community.

Utilize Telehealth Services:

Take advantage of telehealth services for virtual appointments with healthcare professionals. These interactions can provide not only medical support but also opportunities for social connection and emotional support.

Join Online Fitness or Wellness Classes:

Participate in online fitness or wellness classes tailored to individuals with chronic illnesses. These classes not only promote physical health but also provide a sense of community and camaraderie.

Play Online Games with Friends:

Engage in multiplayer online games with friends or acquaintances. Gaming platforms offer opportunities for social interaction and can serve as a fun and engaging way to connect with others.

Volunteer for Online Support Organizations:

Consider volunteering for online support organizations dedicated to chronic illness advocacy and support. Contributing your time and expertise can help you connect with others while making a positive impact within the community.

Organize Virtual Meetups or Hangouts:

Take the initiative to organize virtual meetups or hangouts with friends, family, or fellow members of online communities. Whether it’s a casual chat or a structured activity, these gatherings can strengthen social connections and provide much-needed support.

By taking these steps, you’ll be setting up and maintaining online support groups. This will help you to commiserate with people who are struggling like you are on a daily basis. This can help us to feel less alone and much more connected, even when we’re in pain and tired. It’s such a blessing!

“To Nap or Not to Nap, that is the question.

Whether ‘tis nobler to give into the urge and nap.

Or better to resist and hold out.

Trying desperately to stay awake and function despite the fatigue.”

~Misquote of Shakespeare’s Hamlet

I really struggle with fatigue. It doesn’t seem to matter how long or how well I sleep, I’m still exhausted. Its really frustrating trying to function when I’m so tired all the time. I hate trying to do cognitively demanding tasks like simple math problems as my brain just blanks. I know what I’m doing should be easier than this, but my brain’s just so tired it doesn’t want to cooperate.

I’ve heard a lot of debate over whether its okay to nap or not. I get that napping undermines the sleep pressure your body builds up over the day so you theoretically can be very tired by bedtime and go to sleep. And that napping regularly is poor sleep hygiene and a habit that is very hard to break once you start.

But then there are days when I’m so tired I just can’t function. I try to tough it out, but my body just can’t do it. I also tend to get really, really irritable, to the point where everything annoys me and I just can’t cope. Or the pains so high that I can’t handle it.

In these cases, I’ve learned to be gracious to myself. Yes, napping every day is not ideal and not something that I want to be doing. But then there are days when I need a nap to get back on top of my pain and symptoms. Going back to bed in the morning, or taking a nap in the afternoon allows me to do what I need to do. As long as it is (ideally) not an everyday thing, I’ve learned to accept that this is what I need sometimes. Or if I have a nap before a big event, then that allows me to go and have fun without being so exhausted that I can’t participate as I want to.

I try to keep these naps shortish. I was told at one pain clinic that taking 45-minute naps doesn’t disrupt your sleep schedule and circadian rhythm, which is nice, but some days I need more sleep than that. I’ve also found that crashing on the couch for a half hour or an hour with a good podcast is a good way to let my body rest and recharge without actually napping.

But hey, I totally get it if you nap regularly, no judgement. That’s just not what I’ve found works best for me.

Hi, I’m Emily Summerhayes, I’m thrilled to be a guest here! When I’m not crafting, sewing, or drawing, you are most likely to find me in the garden ripping out weeds. Or playing with my miniature goats Cinnamon and Sesame or cuddling my cats Thomas and Cleo and dog Diesel. I have CRPS, FND, and POTS, but still love to create, swim, volunteer with 4-H, and be outside.

Dedicate regular periods of time solely for self-care activities that nurture your physical, emotional, and spiritual well-being, such as journalling, mindfulness, or enjoying hobbies.

When we become chronically ill, a lack of awareness becomes part of our reality. It almost becomes a blessing for a while. The more unaware we seem, the more we can push through a hard day when we didn’t sleep well or we had a lot of pain.

However, the more often we lack awareness, the more often we struggle to make some Me Time. This is because our days seem to disappear, making it hard for us to focus and get much done.

However, we just seem to be running. We may even be tempted that we’re getting a lot done because we’re constantly running. But the truth of it is that we are making ourselves more in pain and more frustrated.

This could cause a lack of sleep and even more fatigue the next day. This can become a vicious cycle, going nowhere positive. After a while, we’ll be causing even more struggles for ourselves.

Setting aside “me time” is crucial for self-care and maintaining overall well-being.

Here are ten tips to help you carve out that time:

Schedule it in:

Treat “me time” as a non-negotiable appointment with yourself. Block out time in your calendar just as you would for any other commitment. This helps prioritize self-care and ensures you don’t overlook it amidst your busy schedule.

Set boundaries:

Communicate your need for “me time” to those around you and establish clear boundaries. Whether it’s family, friends, or coworkers, let them know when you’ll be unavailable so you can fully focus on yourself without interruptions or distractions.

Find activities that rejuvenate you:

Identify activities that recharge your batteries and bring you joy. This could be anything from reading a book, taking a long bath, practicing meditation or yoga, going for a nature walk, or indulging in a hobby you love. Choose activities that resonate with you personally and leave you feeling refreshed and energized.

Disconnect:

In today’s hyper-connected world, it’s essential to unplug and disconnect from technology during “me time.” Turn off your phone, step away from social media, and give yourself a break from constant notifications and digital distractions. This allows you to be fully present in the moment and cultivate a sense of inner calm.

Be consistent:

Make “me time” a regular part of your routine. Consistency is key to reaping the benefits of self-care and maintaining a healthy work-life balance. Whether it’s a daily ritual or a weekly indulgence, prioritize this time for yourself and stick to it, even when life gets busy. Your well-being deserves it!

Create a relaxing environment:

Designate a space in your home that’s conducive to relaxation and reflection. Whether it’s a cozy corner with comfortable cushions and soft lighting or a peaceful outdoor retreat, curate a calming environment that helps you unwind and de-stress.

Practice mindfulness:

Incorporate mindfulness techniques into your “me time” routine to cultivate present-moment awareness and promote inner peace. This could involve deep breathing exercises, progressive muscle relaxation, or guided meditation sessions. By being fully present and attentive to your thoughts and feelings, you can foster a deeper connection with yourself and reduce stress levels.

Nurture your passions:

Use “me time” as an opportunity to pursue your passions and interests wholeheartedly. Whether it’s painting, cooking, playing a musical instrument, or learning a new skill, immersing yourself in activities that ignite your creativity and bring you fulfillment can be incredibly rewarding and rejuvenating.

Practice self-reflection:

Take time during your “me time” to reflect on your thoughts, emotions, and experiences. Journaling can be a powerful tool for self-reflection, allowing you to gain insight into your innermost thoughts and feelings, set goals, and track your personal growth journey. Engaging in introspective practices helps foster self-awareness and emotional resilience.

Be kind to yourself:

Treat yourself with compassion and kindness during “me time.” Practice self-care rituals that nourish your mind, body, and spirit, whether it’s pampering yourself with a spa day at home, enjoying a healthy and delicious meal, or simply giving yourself permission to rest and recharge without judgment. Remember that self-care is not selfish—it’s essential for your overall well-being and happiness.

By taking these steps, you can learn to practice self-care by setting some ME time and scheduling it into your schedule. Unless you schedule it, you probably won’t make ME time a priority, at least not at the beginning.

One of the hardest things for chronically ill individuals to do is to say no and mean it. We are usually twisted and turned in so many directions. And most times we just keep on going in a mind fashion.

One of the reasons why this may be the case is because our friends are not chronically ill. So, we may feel that they won’t understand us if we tell them we can’t come to an outing after certain hours because this is our time to rest and relax.

Regardless of whether your friends understand you or not, you must honor who you are and what you are going through. If you don’t feel well, you don’t have to keep on going past your limits. Instead, it is in your best interest to rest and relax and just be and tell your friends that you can’t come to their outing.

Why is it so hard to say no to our friends? Because most of us don’t want to hurt our friends. And that is an honorable reason for most of our lives before we became chronically ill. But does this attitude serve your now?

I know in my case, when I was first diagnosed with Fibromyalgia, I was putting my needs on a back burner. I honored the needs of my friends. So, if they wanted to get together and go to a party that I hated anyways, I went so that I didn’t make a nuisance of myself.

But then one day, I felt I had to pause. I wondered if it was better to be inauthentic to my own needs and deny my needs in order to fit in with my friends? At first I just thought going along was honorable. But I later realized that it was detrimental to my health and well-being. So, I started to say no.

It felt awkward and stressful at first. But I came to learn that I was the most important person in this equation and I had to look out for myself. As a chronically ill individual, I knew my life would be different. And this was one prime example of it.

So, I started to stand up for myself and look my friends right in the eye, with love, and say, sorry, but I won’t be able to join you tonight or today.

Having a chronic illness requires that you are honest with what you can and cannot do with yourself and then with others. That is an important component of self-love.

Yet self-love can be so difficult to bring about. It can be hard for us to feel well enough to give ourselves the love we need. However if we don’t, who will?

Today, take a look at how you are feeling. If you’re having a hard day, please be kind to yourself by learning to say no.

Try it!

Irene Roth

It can be hard for us to ask for help. After all, we may have been resilient all of our lives. But then we became chronically ill and our life changed in what seemed like a heartbeat.

It’s understandable that we don’t want things to change. However, when we become chronically ill, things must change. Without delegating and asking for help, we will become increasingly frustrated, stressed, tired, and possibly unable to sleep because of our pain.

Therefore, it is essential for us to take stock of all the things we have to do and perhaps decide what we can do, given the time and energy constraints that we feel, and the things that we can’t do.

Once we decide what we can and can’t do, it is important for you to look for people who would be willing to help you. The good news is that most people would be happy to help us. But are we open and humble enough to ask for help? 

If not, we should become mindful of the fact that it’s in our best interest to ask for help. We should be self-compassionate with ourselves and find ways to show such mercy towards ourselves by asking for help.

Start with your family members and friends. Many of these people see how in pain you are on a daily basis. They may have even said Let me help you with this. And you probably said oh no, I’m fine.

Believe me I know this sequence of thinking very well. I actually live it. And I can stubbornly want to keep going when I clearly shouldn’t be.

What I had to do is realize that I can’t do it all. Once I realized how little energy I have and that the most loving thing to do is to ask for help, I started asking for help. It’s not that I liked it. I still don’t. But I have now come to realize that this is the most loving thing I can do for myself.

Try it!

Irene Roth

One may wonder why celebrate small wins when you’re living with chronic illness. I know I did for quite some time. The reason why we have to celebrate good moments as if they are great wins, is because a lot of chronically ill individuals don’t have a lot of good moments unless they actually make those moments.

What do I mean by this?  Well, when we live with pain and fatigue a lot of our days, we don’t really feel like celebrating. It seems that everything is always the same—on one plain. But as we celebrate these small moments, we suddenly realize that this isn’t the case. We have a lot of moments that good or even very good.

This is why celebrating small moments or good days is so important. Now most of us can’t get away with celebrating with a pizza and wine party or a wine and cheese get-to-getter with ten other people. However, we can go out for a quiet health lunch with a friend or spouse, or a nice walk in the country.

So, how can we celebrate these small moments? I think it’s important for us to have a list of places and things that we enjoy doing and that will put a smile on your face. Then when you want to celebrate a good day, choose one thing on your list and do it.

Here is my joyous list that I turn to when I want to celebrate.

• I go for a walk around the river, either alone or with my spouse.

• I go out for a nice lunch at my favorite spot.

• I take a short road trip – I love driving in the country and everywhere. Getting out of my ordinary place is invigorating and inspiring.

• I go for a massage. My massage therapist is great and she really helps me feel better about life.

• I buy myself a few new seasonal items for my closet. I find buying new clothes can really lift my spirits.

• I go for a coffee to my favorite café. I usually head out there alone to just sit in at a table alone and just let my thoughts drift.

• I watch my favorite TV series. I just love distraction from my pain and fatigue. But what’s more it usually puts a smile on my face.

So, as you can see, my list isn’t complicated. I can do these things without breaking the bank and I know in my case it puts a smile on my face.

Now it’s your turn. How can you celebrate these small moments of bliss and happiness?

Irene Roth