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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When MS Fatigue Strikes

I never realized it, but I was dealing with MS fatigue for a long time prior to my diagnosis. I always thought the fatigue had to do with my depression, which may have been MS related, but I had no reason to look into the fatigue. Once I resolved or managed my depression, the fatigue would go away. I wasn’t sure how I would manage my depression, but it was in the back of my mind “to do.”

The last time I felt energetic, truly energetic and what I imagine it feels like for everyone else, was when I was a teenager.

Every day can be a struggle for me to get things done. It’s something I’ve talked about a lot on the blog, especially the feelings of frustration I get from not being able to get everything done. I have learned to adapt around the fatigue, but the unpredictability surrounding it and what affects it is still a learning curve.

I think I will constantly be working through the frustration the fatigue causes.

What is MS Fatigue?

MS fatigue, or lassitude, is something that happens every day for the majority of people with MS. This fatigue can vary day-to-day and person to person. At this point in time, researchers do not know what causes fatigue, just that it is something that happens more with people with MS (up to 80%).

My completely uneducated, unqualified guess is that it probably has something to do with how the lesions affect our body or the fact that our immune system is constantly in overdrive and attacking itself. Like how we feel when dealing with a cold, the fatigue is our body’s response to the attack.

Fatigue can so negatively impact a person with MS that it may be used as a reason for why a person leaves the workforce early. I know that it made going to a physical job more difficult, one day I had to lie down on my office floor for a nap because I was so exhausted from teaching. I was able to work, but by the end of the day, I was completely worn out because I couldn’t get any naps or periods of rest during the day.

For me, I have my most amount of energy in the morning (with or without a good night’s sleep) and slowly lose energy as the day progresses. By mid-afternoon, I am desperate for a nap and will have a minor surge in energy afterward for an hour or two, but there is no guarantee of that second wind.

Fatigue as a Background Feeling

I have found that the fatigue surrounds me so much that it has become a background feeling for me. There is a level of itchy-comfort that surrounds me every day. I know this is an oxy-moron, but what it means is that I have that weird cozy feeling all day that you get when you are just tired enough. It’s that warm feeling you get where you are just drowsy.

But it’s itchy and uncomfortable because it’s really hard to snap out of it, which is frustrating. My body wants to stay in bed and sleep all day, but my mind is “we have to move and get work done!”

I have learned to push the fatigue to the background for most of the day, working through it, but I know that it makes me cranky at times. That’s where self-compassion comes in, but also where goal-setting helps as well. I think my running training has helped a lot. Besides giving me some extra energy that comes naturally from exercise, it sets a blueprint for goal acheivement throughout the day.

Running creates this blueprint: I need to run to the next telephone pole and then I can walk for a few seconds. When I am so worn out from running a long race, I sometimes have to create these small goals to keep pushing myself towards my personal race goals. In my daily life, it is very similar: I say “I need to complete this task and then I can rest for a few minutes.” When I feel my fatigue winning, I remember that if I can push through it with running so can I push through it in my daily tasks.

Bad Fatigue Days

Bad fatigue days are some of the worst days and moments for me.

I may have a bunch of things on my “to do” list and I will not get more than one thing done on that list. And that feeling of unproductivity can be extremely frustrating and discouraging for someone who likes to get a lot done in the day.

If I do too much the day/night before, I can be wiped out the next day making getting out of bed near impossible. When this happens, I find that I am cranky for much of the day. Unfortunately, because of the nature of the fatigue, no amount of sleep helps revive me. I could sleep over 8 hours the night before, get 4 to 6 hours of naptime and still be able to go to bed early for another full night’s sleep with no relief from the fatigue.

On these days, I feel that my depression hits harder because I am so tired and frustrated with my body.

I get frustrated when dealing with exacerbations, but I find that I am less frustrated with an exacerbation than I am with the fatigue. An exacerbation can be managed with medication, my fatigue rarely can. I’ve tried several different medications meant to give me a boost in energy, but I find they don’t make a dent or make me more drowsy.

Fatigue’s Impact on Emotions

While I might take medication, drink copious amounts of caffeine, run a mile or two in the morning, drink a bunch of water, or just rest in order to raise my energy levels, I find that I get no real relief from my MS fatigue.

The lack of relief or lasting energy boosts is so frustrating and wearing that I think fatigue has the most negative impact on my emotions regarding my MS.

I really wish that I can get more things done during the day. I wish I could have all the energy in the world to do a bunch of things with Jai. I wish I could take a couple extra hours every day to work on my blog and do my daily tasks.

All of these desires lead to my feeling of helplessness and personal frustration towards myself and my MS. Any negative feelings I have towards myself stem from my complete lack of control over being able to get things done in the amount of time I want. I might plan to spend the whole weekend getting caught up on a project and then find both days are spent in bed because I can’t summon enough energy.

With these negative feelings, I have learned to embrace self-compassion as a way to manage them. I recognize that until they come up with a perfect drug to deal with MS fatigue, this is something completely out of my control. I cannot change something out of my control, so stressing over it will achieve nothing, therefore I have to be softer with myself.

On Friday I will be discussing more indepth how I deal with my MS Fatigue in my newsletter post. If you want to read more about my personal solutions to this common MS problem, please sign up for the newsletter here.


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Featured photo credit: Michelle Melton


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Treating Chronic Illness with Self-Compassion

This post will be discussing some pretty heavy topics that may be bothersome to some readers. Discussion of self-hatred and self-harm are within this post. Please read responsibly and remember that you are not alone in your journey.


Over the past couple of weeks, I’ve discussed using self-compassion as a means of dealing with a chronic illness, but I haven’t gone into much detail over how and why that will be helpful. A lot of things happen when dealing with a chronic illness or a disease that severely impacts your life. You go through various stages of grief, wishing your life would be normal, and you hopefully get to a point where you accept that “normal” isn’t going to look like everyone else’s.

What happens is a lot of feelings of personal frustration towards the illness and yourself. When this happens, it’s important to treat yourself with a loving acceptance so you can begin to heal emotionally.

Body & Mind Betrayal

The biggest stumbling block is the betrayal of mind and body (dependant on the illness). Our mind doesn’t understand why our body no longer responds in the way it once did. If we were able to go an entire day without needing a break, our mind struggles to accept needing a nap mid-morning otherwise we’d collapse. Often questions such as these come up:

  • Why is my body like this?
  • What could I have done differently?
  • How/did I cause this?
  • Why did it have to be me?
  • Will I ever be healthy or whole again?
  • Why can’t I be like everyone else?

The answer to these questions, if there even is an answer, varies from person-to-person. Some illnesses just need an appropriate medication regimen to return a person to normal, and for others, we will have to adapt to the new normal. When we are able to compare our life now to what our life once was, feeling frustrated, angry, and betrayed by our body is normal.

Normalizing Self-Hatred

I already dealt with self-hatred before I was diagnosed with MS. When I received my diagnosis there was a time where I thought that I deserved it. I was a bad person and bad things like this happen to people like me.

Because I reached to self-hatred as a coping mechanism, I normalized my self-hatred even further.

If you never dealt with self-hatred prior to your diagnosis, you may not have an issue with it now, but there’s a possibility you start feeling hatred for you body post-diagnosis.

That self-hatred may be beyond your control. Some illnesses can change brain chemistry to make you feel and think things that aren’t normal for you. The very act of getting the illness could bring about feelings you’ve never experienced before in your life. I am not saying that everyone will hate themselves, but if you’ve noticed it happening more in your life, it may be because your chronic illness.

It’s important to recognize this happening and finding a way to healthfully manage it.

Working with your body even when it won’t work with you

With some chronic illnesses making meaningful physical and emotional changes can be difficult. Especially if you want to jump from zero to sixty within the next year or so. I am the kind of person who wants to jump fully into a new endeavor without considering logistics or consequences.

Exercise, both mental and physical, is extremely important in managing chronic illness symptoms. It can reduce stress, minimize symptoms, and help your overall perspective – moving you away from feelings of self-loathing. This won’t be a cure-all, but it is a great way to complement the care you are giving yourself as you manage your illness.

Because you know your body better than anyone, even a healthcare provider at times, you know what you are capable of and able to push yourself to do.

That said, sit down with a professional in whichever arena you want to start working on to help guide you through the process:

  • Emotional changes: ask your neurologist or healthcare specialist for a therapist/psychiatrist/psychologist recommendation. Chances are they know someone who specializes in your illness so you won’t be playing catch-up with the nuances. If they don’t have one, insurance portals can have a list of recommended professionals.
    • Go in with a plan of what you want to work on. This might be feelings of doubt, depression, self-hatred, frustration, or learning to cope with your new normal. A plan does not need to be strictly followed, but it will give you some direction to get started.
    • Don’t just settle on the first therapist/psychiatrist/psychologist you try out. If you don’t feel comfortable with them or that they aren’t listening to your needs/concerns – move on. You want someone who works with you, not against you. Especially with the mental and emotional work.
  • Physical changes: speak with your healthcare professional for some ideas on an exercise program or prescription for physical therapy. If they aren’t able to provide a cheap/free program recommendation for your situation, get their honest opinion of what you are capable of doing, especially on your own. Use that information in your research.
    • Look at the main awareness website for your chronic illness. Many of them have articles written on exercise recommendations for people in your situation. It’s a great starting point.
    • Look at a local pool for swim classes to get you started. If you have mobility or inflammation issues, the water can help alleviate stress on your body while helping to keep you stable.

Additionally, stick with whatever medication regimen recommended by your healthcare professional. If it’s not working for you or you are having really bad side-effects, bring this information to your doctor. Self-care begins by following peer-reviewed and tested medical practices. It won’t be one-size-fits-all, so you’ll have to make adjustments, but make those adjustments under the guidance of a professional.

The goal in taking these steps is regaining a sense of control over your mind and body. This will help you when you need to engage with self-compassion when you need it.

Treating Chronic Illness with Self-Compassion

Self-compassion is about giving yourself permission to feel bad and have bad days. It’s about being gentle with yourself when getting out of bed is the last thing you can think about. It’s also about pushing yourself a little harder because you know you are capable of completing a task.

Self-compassion is giving ourselves the advice we’d give friends in similar situations. With a chronic illness we’re stuck in our own perspective and sometimes unable to see that we need the love we’d give our friends (and our friends might be giving us).

Creating a mantra, an exercise we practiced in a recent newsletter, to help respond to any doubts or feelings you frequently have will help get you started on your path of self-compassion.

A good starting point is to answer those questions we asked ourselves earlier:

  • Why is my body like this? This is my body with my illness and while I may not have an answer to the “why,” it still takes care of me by functioning.
  • What could I have done differently? Unfortunately, chances are there was nothing I could have done differently. These things happen and it wasn’t my fault.
  • How/did I cause this? (If my illness is based on behavior or exposure from my past, I played a role, but that is in the past.) Chances are, nothing I did caused this, therefore blaming myself is unproductive. My present is now and I will move forward by loving what I am in this moment.
  • Why did it have to be me? Nothing out of our control happens to us to single us out. It happened and the only thing I can do is move forward and take control over my life in whatever way is possible.
  • Will I ever be healthy or whole again? I may never return to what I once was, but I can be healthy and whole in a new capacity. Having a chronic illness does not have to impact my outlook or ability to make changes.
  • Why can’t I be like everyone else? Sameness is overrated. This illness might bring out a part of me I never explored otherwise and I should take advantage and love that about myself.

Self-compassion will not cure your illness, but it can make it easier if you treat yourself kindly as you work through it. I have found that with self-compassion I am able to make more rational decisions about my health and stay motivated when I create a personal goal for myself.

It is important to see ourselves as worthy of our own love, illness and all, because we have so much we can contribute to all around us.

If you’re a subscriber to my newsletter, you’ve already seen some of the content and suggestions I’ve been making for readers. If you aren’t, it’s never too late to sign up and join the challenge.


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Featured photo credit:  Kinga Cichewicz on Unsplash


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Self-Compassion and Starting a Personal Growth Journey

A journey begins with a single step, so the first step is making small, manageable life changes. But all journeys have obstacles, especially at the beginning. This is why self-compassion and a personal growth journey work so well together. Self-compassion will help you manage those obstacles and keep you moving forward.

If you made New Year’s Resolutions it’s around this time you might start to feel the pinch and frustration of those resolutions. I wanted to provide some tips and encouragement to help keep you moving along.

At the Start of Your Journey

It’s important to view yourself at the start of every personal growth journey as inexperienced. This may be your second time wanting to get a better job, or dealing with toxic coworkers in a healthy way or even starting that hobby you’ve been too afraid to try. Regardless of what your goal is, it is important to remember that you are brand new to it, regardless of previous experience.

Remember, like your illness, these sorts of journeys vary from person-to-person. If it was easy for you to make these sorts of changes you would just do it without thinking. So while the same goal for someone else can happen for them without thinking, that goal may feel insurmountable to you; likewise, the same person may feel your mundane, no-big-deal task is too much to handle.

By viewing it as though it’s your first time down this road you won’t bring previous baggage with you. Previously, you applied to get that better job before but found that the market stymied your efforts. Instead of letting that discouragement inform your decision whether or not to apply to the job, leave that experience at the door and view yourself as taking this journey for the first time.

If you’ve ever done something competitive: sports or academics, try to remember how it was for you at the very beginning. Hard, right? I remember when I started running many years back how I could barely sustain a run for more than a minute. It was frustrating. But it took practice to build up and improve.

Every journey is always felt harder at the beginning.

Once you get past the hurdles and look back you may find yourself wondering why you thought it was hard. When I look back at where I was years ago, even as recently as last year when I restarted running, I am surprised at how far I’ve come along. Running a minute is no big deal for me now.

Doubt as an Obstacle

I think doubt tends to be our biggest obstacle at the start of the journey. Have you ever hiked a mountain, gotten to the base of the mountain had one of the two experiences: looking up and seeing how high the mountain is and how far you have to go; or not even seeing the mountain because you are far enough away from it that you can’t see your end goal?

Personal growth journeys function in the same way. Either you see how steep and how far away your goal is, or you are so far away that you can’t even begin to see the end of your journey.

It’s at these points that doubt can settle in and everything feels extremely overwhelming. Can I even make these changes? Will I even accomplish my goals? What happens if I fail? Why do I even think I can do this?

Doubt can stop any forward momentum. But what if you use self-compassion and turn that doubt into a motivator instead?

Doubt as a Motivator

I found that using doubt as a motivator helped me so much. When I started this journey to wellness over a year and a half ago, I thought to myself that this was going to be like every other writing-based endeavor I do. I will write my thoughts for a few months, get everything out and then go back to my life.

I found around November 2017 that my interest and motivation lagging in my blog. I only made three posts in total, which was a drastic drop from my normal three posts per week schedule. I started doubting my abilities after only blogging for a month and a half and resigned myself to another personal failure.

Mid-November 2017, I interacted with a person I’ve had a conflict with in the past. After this interaction, I had a lot of complicated feelings that left me frustrated, but in the more positive moments, I actually listened to what was said and more importantly what wasn’t said.

I saw that this person had a lot of self-doubts which drove our complicated interactions. These self-doubts were also preventing them from following their own dreams, dreams that overlapped my own. Unfortunately, their self-doubt and self-sabotage prevented them from pursuing their dreams beyond a certain point.

I saw this as a motivation to move forward.

I recognized the same obstacles in front of myself and was allowing them to block me too. December 2017 rolled around and I felt renewed because I didn’t let the doubt discourage me anymore. I wanted to use it to motivate me to continue forward and succeed.

I doubted I could maintain the blog and so I used that doubt to challenge myself to continue.

Doubt, when put into proper perspective, can be a great motivator.

Self-Compassion and Personal Growth

By using self-compassion, you’ll find success in your personal growth journey.

When those moments of doubt or any negative thoughts and emotions creep into your life: why am I struggling? Why is it so hard this time? I failed last time, I am going to fail this time… remember that this is a fresh journey for yourself.

Some things to help you with self-compassion:

  • Remembering the freshness of the journey, refocusing your thoughts that this is your first time through this journey and therefore wiping previous experiences away so they don’t color your memory, is an act of self-compassion.
  • Actively say to yourself that you are new to this, therefore must take it easy on yourself. If you accept that you are new to this personal growth journey, you will treat yourself as though you aren’t expected to be perfect.
  • Don’t expect to be perfect on this journey. When you are looking to only succeed and don’t embrace the possibility of failure, i.e. don’t get the first job you apply to, you will focus solely on that failure. Rather, look at the mini-failures as learning opportunities so you can know what to change for next time.
  • Turn perceived obstacles into motivators. I focused on doubt with this post, but there may be another personal obstacle that gets in your way: fear, self-sabotage, or comparison to others. Instead of focusing these on negative points that can help stop your efforts, focus on them as ways to push you forward. Afraid of failure? Push through that to prove to yourself that you won’t fail. Afraid of success? Break it down to small tasks so each small success will prepare you for a larger one.
  • Be gentle and acknowledge that you deserve to achieve this goal. If you want to be a less angry person, or able to ignore toxic people around you in the workplace, remind yourself that you deserve to achieve your goal. Anger can prevent you from growing and receiving new opportunities; toxic people can prevent you from feeling like you are able to go out for better opportunities. There is no reason why you cannot allow yourself to have positive things happen in your life, especially if its a goal you’ve created for yourself.

With a chronic illness, as I’ve said before, these sorts of journeys have a little extra challenge. On Wednesday, I will be discussing how to manage self-compassion while coping with a chronic illness.

Have a personal growth goal for your life? Why not start now with your goals, it doesn’t have to be January 1st. Join my newsletter for weekly posts about how to slowly achieve your long-term personal goals.


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Featured photo credit: Mantas Hesthaven on Unsplash


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…Before Loving Anyone Else

On Monday, I discussed the importance of self-soothing as a means of disease management. Chronic illness and self-care go hand-in-hand, but sometimes we are asked to care for others when needing to care for ourselves.

As a mother, I have to put my needs aside for Jai, but sometimes that’s impossible to do. If I don’t take care of my own needs, I won’t be able to take care of Jai’s. Which is why granting ourselves permission to be selfish is a good thing.

Self-Care Goes Beyond Self

As counter-intuitive as it may seem, caring for ourselves first is the best way to care for others. If I am emotionally incapable of taking care of Jai’s needs because I am so worn out from dealing with other issues, I won’t be able to provide the care that he needs. Rather, if I acknowledge that I need to take a few moments for myself, even if Jai is running around and super active, then I should do so.

If you want to be an effective partner, parent, or friend – take care of yourself first before taking care of others. It’s hard to accept or even want to do because being “selfish” gets a bad reputation. When we say “I must put myself first,” we are being selfish, but selfishness can be a good thing. Especially when we are dealing with others.

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