power-of-prayer-in-chronic-illness

The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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Featured photo credit: Canva

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How to Love Myself

I would love to wave a magic wand over everyone and say, “Poof! You now love yourself and embrace all that you are.” But I know that’s not how it works. It’s not something that happens instantaneously or over even a short period. My personal journey to self-love began two years ago when I learned that my brain lesions were gone and I had a new lease on my health. I had the opportunity to make important life changes, and part of that was figuring out how to love myself.

This blog is my chronicle towards self-love and self-acceptance, even if I haven’t overtly admitted to it.

It isn’t an easy journey, and I am still in the beginning stages of self-acceptance. It’s been easier to focus on my exercising, food, and self-compassion than admitting to what I love about myself. I will spend the rest of my life contending with myself over whether or not I am worthy of my own love.

I think it’s like any other relationship we have: loving someone takes work. We have to constantly reaffirm that love, engage with it, and nurture it. Our love is no different.

Love, Don’t Just Like

We can all find things we like about ourselves, but can we find something we love? If you did the exercise from Monday, listing of five things you love about yourself, how many of them are really just “likes?” Be honest.

Sometimes it’s easier to approach ourselves from a slight distance like implies less depth of feeling over love, and that is a fine place to start. But we do want to work towards turning some of those “likes” into “loves.”

Any new relationship is based on “likes” that develop into something more, so this is very similar to that. Look over some of the qualities you like about yourself, are any of them worthy of your attention? You may appreciate how you handle your exacerbations, but you may not celebrate that perseverance to the degree it deserves.

Take a moment and see if a particular quality is worthy of an internal appreciation upgrade. Embrace those qualities and start to look at them with love. Embrace what makes you unique and amazing. You are worthy of your love.

The Science of Loving Yourself

Science backs up the importance of loving yourself. When we focus on our negative qualities, it impacts our relationships, health, and ability to overcome adversity. When we engage in self-appreciation, we give ourselves a chance to cope with stress and any mood/anxiety disorders we might have.

While this won’t cure our depression, it may help you lessen symptoms or get you to a space where you can ask for help.

I found that when I take a stand to care more about myself, that I am able to back away from negative relationships. My drive to be healthy is greater, and I find that I self-assess my abilities as a mother to be higher.

When we engage in self-appreciation, we are more open to making healthy medical decisions. This isn’t necessarily about eating right or exercising, we are more open to fighting for what we need to manage our chronic illness.

Speaking of chronic illness…

Chronic Illness and Loving Yourself

When you have a chronic illness, you’re stuck with it. Until they find a cure for our particular illness, we are biding our time managing the best we can with what we have.

Chronic illness is an obstacle in our wellness journeys. I’ve said this before on the blog: it’s so hard to want to get well when our bodies betray us. It’s hard to love ourselves if we view our bodies flawed beyond repair. Asking someone with a chronic illness to take the steps towards self-love seems unreasonable, but it’s not.

I will be honest, if someone who didn’t have a chronic illness tried to tell me that, I would probably give them the biggest eye roll possible. Even today. Why? Because it’s usually said to make themselves feel better, not me.

Because we cannot change whether or not we have a chronic illness, there is a level of self-acceptance that must happen. When we fight against the illness, via ignoring it or caving completely to it, we signal to ourselves that we are not worth caring for and we signal to the illness that it wins. Patients with negative attitudes, tend to fare worse than patients who are positive with their healthcare approach.

It’s easy to get lost in our illnesses. It’s part of the grieving process, which is perfectly healthy on its own. But it’s a process, which means there needs to be forward movement in our journey, not stalling for an unhealthy length of time. We sometimes forget that we aren’t alone in this world, even though it often feels like it.

We have to fight to love ourselves and keep on fighting despite our health setbacks, lest the illness wins. Chronic illness takes so much away from us, leaves us feeling helpless and worthless, but why let it? Why allow it to take more from us? We have to give it permission to leave us feeling unloved, and we can revoke that permission at any time.

How to Love Myself

So how do we begin loving ourselves? Very slowly, as mentioned in Monday’s post. We’ve been slowly building up to this point throughout the year:

Find ways to start incorporating self-appreciation in your daily life. Get a workable morning routine that allows you to feel good about yourself. Include affirmations if that works. Find some way to exercise to boost the feel-good hormones.

Tell yourself that you are worth fighting for.


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Featured photo credit: Michelle Melton


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Coping with Negative Thoughts

Last month on the blog, I opened up about my negative internal narrative and its impact on my life since childhood. If you are managing a chronic illness, chances are you’ve been plagued with moments of self-doubt and negative thinking. Understand this: having negative thoughts is normal, so there is no shame to be associated with them. But they can be overwhelming and therefore necessary to find a way to cope with them.

Like Gary John Bishop says in Unf*ck Yourself, negative thinking doesn’t necessarily prevent you from taking action. Plenty of successful people are also self-destructive. But those of us negative thoughts impact, it can obstruct any personal progress to the point where we give up.

I slumped into periods of deep depression exacerbated by my negative thoughts. I am not always in control of these thoughts, but I had moments where I could see where I could alter my thinking and actively chose not to do it.

The dark thoughts fueled my resistance to change because I repeated the following excuse: I can’t work on making changes right now because I don’t feel good. When I feel better, I’ll make the necessary internal changes. Needless to say, it doesn’t work that way. If I wanted to feel better, I had to choose to feel better. The choice could include wellness changes or go to a therapist.

Please note: what follows is my experience and what worked for me. I am sharing my experience in case it provides help or comfort for you. Please do not expect the same results. You may find this does not work, it kinda works, or surpasses my results. Everyone is unique and in a different starting place.

Additional note: if you are dealing with depression, not everyone can halt negative thoughts. This post is not for those moments. If you are experiencing dark thoughts out of your control, please seek help. You are loved and wanted.

Soothing the Negativity

I found that when I personify my negative thoughts, I can cope with them. Often these thoughts sound and behave like a needy toddler, so I imagine that’s what they are. Toddlers are persistent, repetitive, demanding, loud, and sometimes won’t take “no” for an answer.

As are these thoughts.

When literally dealing with an out-of-control toddler, I find the most success when I speak in a calm and soothing voice. Reacting sharply, or in an emotionally charged tone, can exacerbate an already tense situation. When I take a moment to stop, figure out what is bothering Jai, and speak to him calmly, the episode ends a lot faster.

My “toddler” thoughts respond similarly. When I react to negative thoughts about myself, what I am doing, or memories in a harsh way; these thoughts fester and continue on for hours or days at a time.

But when I respond to these thoughts by taking a moment to figure out what is bothering me, speaking to myself calmly and lovingly, my own episode ends faster. It may still pop up throughout the day, but I continue to talk in kind words.

It’s funny. I am incapable of speaking kindly to myself when I don’t personify my thoughts as a toddler. I get in this mode of, “I am an adult, so why can’t my thoughts behave like an adult?” I look at the thoughts as though a toddler is living in my head, and suddenly, I am sensitive to my needs.

Having negative thoughts isn’t shameful. It’s healthy, so please do not feel like you have to drive them out of your head as soon as they pop in. Take a moment to validate them. Validation does not mean you agree with these thoughts, you are merely acknowledging their existence and what they are trying to say, no matter how badly they are saying it

You are giving your thoughts what they need: a moment to be heard.

Coping with Negative Thoughts

Try to figure out the “age” of your negative thoughts. While I am treating my thoughts like a toddler, the age of my thoughts is probably closer to twelve or thirteen. That’s when I can point to personal stunting of my emotional growth.

Pre-teens/teenagers often behave like toddlers, so it isn’t unreasonable to use a similar approach. I think it has everything to do with me raising a toddler, so I am already in a particular mindset.

Your thoughts may behave like a toddler, an older child, a teenager, or a young adult, depending on your age. Try to self-assess the behavior and tone of your thoughts to get an idea of the age, and then figure out how you would speak to someone within that age range.

Speaking to your negative voice like it’s a young child may not be as effective as talking to it like it’s an older teenager. It will take some time to get it right, but you’ll figure out what works best for you.

When you speak, try to do and keep the following in mind:

  • Validate the feelings. Validate the thoughts you are thinking about. Reflect them back: “I hear that you are upset about what you said earlier today.”
  • Speak as you wish an adult spoke to you at that particular age. You may not have a positive example in your life, so this will take some work. But imagine how you wished adults treated you at that stage. Rather than screaming and spanking you; you might have wanted, they sat down and talked you through the source of your outburst.
  • Provide an outlet for the feelings in a healthy way. Sometimes we still have to physical our thoughts to get them out of our head. Consider taking up an exercise or hobby that will allow you to channel that extra emotional energy bothering you.
  • Look for a way to manage similar thoughts in the future. Consider ways to address the thoughts you might have in the future, so you are prepared. You won’t be able to account for all possibilities, but you might know what might trigger a thought in the future.
  • Commit to loving this hurt inner voice, despite what it says. This is one of the more difficult steps. Committing to love this voice that works so hard to hurt you. It is asking for your love, but going about it in a very ineffective way. Listen to it as a desire to be loved, and you may find it helps soothe it more and more in the future

As stated above, taking these steps may not be as useful for you, but it might give you an idea of how to break your negative thought cycle and help cope with those negative internal thoughts.


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listening-to-my-self-doubt

Listening to our Self-Doubt

How often have you listened to your self-doubt? Listened to the point that it affects a decision you want to make?

You may not even know you are allowing your self-doubt to affect your decisions. It’s okay. We’ve often done things without realizing the where’s and why’s. But next time you want to make an important decision, and you feel yourself freezing, ask yourself: is this coming from a place of self-doubt?

Listen to the voice that pipes up. What is the tone of the internal conversation? Do you hear encouragement or discouragement? Is the rationale reasonable, or is it unfairly assessing your capabilities?

What Does it Mean?

Self-doubt is the belief we are incapable of doing something. We might compare ourself to others, be obsessively goal-oriented, or feel like an impostor. The end result is feeling like we aren’t able to do something, so why bother trying?

There may be an appearance of logic to our reasoning, i.e., why should we attempt something new that might be dangerous if we’ve never done it before? But that itself is dangerous thinking. It keeps us within our comfort zones and does not allow for growth of any kind.

We have to look at why our self-doubt wants to keep us within an unhealthy dynamic and what it’s trying to tell us.

Often, self-doubt follows moments of deep self-reflection because we are now acutely aware of our limitations. I find that I get frustrated by my anxiety after some self-reflection, which heightens my anxiety and can cause me to freeze. Self-doubt is the voice I hear that encourages me to engage in the unhealthy behavior of staying frozen.

What helps me is figuring out the root of my self-doubt.

Origin of Doubt

Like many of our internal beliefs and behaviors, doubt comes from childhood. It may come from grownups in our lives teaching us to doubt ourselves, or it may come from our experiences. Think back when you did something dangerous on the playground. You may have really hurt yourself to the point of never wanting to take the same risk again. Now you have an aversion towards tasks and opportunities that remind you of the incident.

The self-doubt does not come from a bad place as much as it comes from a place of personal protection. You may want to protect your ego, body, or relationships because you are worried about the pain.

We may no longer be running from other apex predators, but humans still (for the most part) try to avoid painful experiences emotionally and physically. We find ways to protect ourselves from feeling that pain. We may blame others for our own failings, project our deepest thoughts onto others, and we engage in our self-doubt to not even attempt to make changes or do something new.

But it’s about pushing through that pain, embracing it, getting back on that horse and not worrying about the consequences.

But let’s take a moment and talk about those…

The Consequences

When we give into our self-doubt and say “it’s not worth making a lifestyle change;” or “I don’t do diets because they never work;” or “why try finding a way to adapt to my chronic illness, I am never going to be cured;” we accept the severe consequences. Sorry to be melodramatic about it, but the consequences are what keeps us in an unhealthy mindset, body, and approach to our chronic illness.

When we give into our self-doubt, we say it’s okay to be unhealthy.

There are moments, to be sure, when we engage in self-doubt and those are okay provided we find a way to move beyond them. I am talking about refusing to make any changes when you recognize the problem.

A moment of self-doubt that I am still working through is written communication. I love writing my blog posts, but when it comes time to write and email or text message, I freeze. It comes from a place of fear, mostly of the other party expressing frustration or anger at my delay in responding.

So I don’t send the communication. I don’t even write it most times. Which gets me more anxious over how much time has passed…it becomes a vicious cycle.

This unhealthy way of thinking and behaving causes me to lose out on meaningful connections and opportunities because I am so caught up in my self-doubt. It took me years to get healthy because I doubted I could.

You may find yourself in a similar space where your self-doubt stops you. There may be something you really want to do, but because of your chronic illness you don’t want to try because you don’t think you can.

I am here to tell you that you can. You can always try and do something. It may not look exactly the way you want because you don’t have the means to match your mind’s eye, but you can always make an attempt.

At this moment, the only person stopping you from figuring out how you can do it is yourself.


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MS-numbness

Dealing with MS Numbness

After my Optic Neuritis, the second obvious symptom of my MS was numbness. At first, I thought I was dealing with cold weather where my ear chilled and wouldn’t warm up. But when I got into a warm location for an extended period of time and my ear was still numb AND the numbness extended down my arm – something was wrong.

Of all the exacerbations it’s the most annoying but at this point the easiest to deal with for me. Mainly because I rarely encounter it, but also because I know exactly what needs to be done.

What is Numbness?

Numbness is rather self-explanatory: it’s when something feels numb or tingles. This numbness is common for those dealing with MS and is one of the earliest warning signs of Multiple Sclerosis.

Because of the nature of the numbness, it can impact daily life: without the proper environmental feedback, the numbness can make it difficult to walk, pick items up, and in some extreme cases, hard to swallow. That’s why it is important to take these numbness episodes seriously and see your doctor immediately for treatment.

Types of Numbness I’ve Experienced

I’ve already mentioned my ear, but I never really detailed the different types of numbness I’ve experienced throughout my illness. My ear was just my earlobe and the side of my face, but it eventually extended down the entire length of my right arm. Because I was abroad, this was problematic because I had no means to diagnose and treat it until I returned home. While I was in a country with excellent healthcare and experienced with MS, I was afraid I would waste everyone’s time when I was just dealing with some weird psychosomatic stress-induced episode.

Funny enough, that’s exactly what I was dealing with but more serious.

When I returned home I lost most use of my arm. I went to my General Practitioner who sent me to physical therapy. My PT suspected it was Thoracic Outlet Syndrome and so she worked on getting my nerves and muscles to stop spasming. Through her exercises both in the clinic and at home, I was able to loosen up my muscles to alleviate some of the numbness, but it basically went away once the exacerbation stopped.

Part of the problem with this particular numbness episode is that my arm locked up at the weirdest times. I had limited range of motion and I sometimes if I was reaching backward my arm got stuck. I physically could not get my arm to move back into position on its own. I needed someone to help me get it back in front of me if my left arm couldn’t reach. Driving a stick shift was difficult (it was the only car we had at the time), so I had to be driven everywhere for a month or so.

Not long after my arm started recovering did I experience my first symptoms of L’Hermittes Sign. It was at this moment I returned to my GP and shared with them my self-diagnosis of MS. The self-diagnosis was brushed aside, I think in part because of a lack of training, but I accepted it because I didn’t want to be right. Three months later after a hospital stint with massive amounts of steroids, I received my MS diagnosis. Most feelings of numbness and symptoms resolved at that point due to the steroids.

Another numbness episode occurred about 8 months later when I woke up unable to feel my right leg. Walking was particularly difficult because I did not know when I put my weight on my leg. I ended up with an interesting limp because I was so worried about my leg giving out. I borrowed a cane that Ash got as a present so I could walk faster.

Yes, there’s a photo:

I am positive I was making a face because some kids were looking at me weird. Credit: Michelle Melton

I definitely wasn’t as glamourous as Selma Blair at the Vanity Fair party, but it was the first time my mostly invisible illness was visible.

Because I got my diagnosis, I knew what caused the numbness this time. I was put on a high-dose steroid regimen for about a week and I regained use of my legs with no lasting damage. That was also the last time I experienced numbness as an extreme exacerbation. I still experience the L’Hemittes Sign from time-to-time when I am particularly stressed, but I have yet to experience limb loss to numbness again.

The Permanent Impact

While I have RRMS, which means that after each exacerbation I will most likely return to a state prior to the exacerbation physically speaking, there are still chances for me to have permanent damage from the exacerbation. I have mental fog and mild memory loss after one exacerbation, and after losing feeling in my right arm while I was abroad, my right-hand pointer and thumb are permanently numb.

This isn’t enough to impact my daily life so I cannot use these two fingers, but it is a present feeling that I notice from time-to-time. More than anything it’s annoying, but I know that I am very fortunate that this is the extent of my lasting symptoms. It makes my MS that much more real because I know that something isn’t right with me and that this is my normal.

Emotional Impact of MS Numbness

I can only speak for myself, but I know that the numbness is the scariest symptom of MS. Memory loss is awful, Optic Neuritis is annoying, fatigue is frustrating. But because of the actual physical impact of numbness: losing function of a limb which may mean you lose the ability to do a task, particularly favorite task is frightening. As mentioned above, the numbness can also mean difficulty doing basic functions for living like breathing and swallowing depending on what part of your body goes numb.

When I was walking around with the cane, finally able to show the world I wasn’t making it all up, I was a mixture of emotions. On one hand, I was able to show that there was something wrong with me. On the other hand, I was embarrassed and mortified by how visible I felt.

I was 29-years-old and using a cane. I had people giving me “the stare.” I hated how it felt and worked really hard to avoid needing the cane out in public during this exacerbation. Fortunately, once the steroids started working, my need for a cane went away and I gladly ditched it.

But the emotional lesson remained: I have MS and needing a walking device was a very real possibility in my future. At the time I wasn’t doing enough to take care of myself, I wasn’t even on disease-modifying drugs. Losing the function of my leg made me realize that I needed to do better if I wanted to increase my quality of life. After I finished up my steroids, I went back to my neurologist and began taking Copaxone to manage my MS.

I realized that I needed to begin the process of coping with my illness becoming more visible and learn to not be embarrassed by it, but use it as an opportunity to educate others. It would take another three years before I would start my blog, but at that moment I still hadn’t really dealt with the knowledge that I had MS.

The numbness, while more manageable for those of us with RRMS, is the true devastation of MS. It takes complete control over our bodies and makes us never forget that we are dealing with MS. Many other symptoms are easy to brush aside or ignore, but it is impossible to ignore the numbness. When your limbs are held hostage or basic functions are impaired, there’s no denying that you have MS.

For that, numbness is the symptom that scares me the most when I experience it as an exacerbation. It’s the one I think about when I am working really hard to manage my stress to help manage my exacerbations. It’s the one that I think about when I go back on MS medication. I hate the numbness and I hope to rarely experience it again in my lifetime.

Which symptom scares you the most with your MS? Do you dislike numbness as much as me? Leave your thoughts and experiences below.


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