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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Advertisements

self-compassion

My Self-Compassion Journey

This post contains potentially disturbing material surrounding the topics of self-harm, self-hatred, and other self-destructive topics that might be troublesome to readers. If you or someone you know engages in this behavior, please know that you are not alone and there is help out there. Here’s a wonderful resource to get started.


I sometimes come across as a know-it-all. Ash has experienced it first-hand and it’s only a matter of time before Jai tells me that I don’t know what I am talking about. Dunning Kruger is real with me. It’s one of the reasons why I loved teaching and I love blogging. 

But when it comes to this month’s topic of taking care of yourself as you undergo a personal growth journey, know that it is actually coming from a place of experience.

I have experienced a lot of pain in my life, many of it directed towards myself as a coping mechanism for emotions that got to be too much. It wasn’t until I embraced self-acceptance and self-compassion that I was finally able to push through my journey and fully embrace who I wanted to become.

For today, I wanted to touch base on my own experience engaging in self-compassion and provide some light as to why I am constantly pushing it as a way of thinking, especially with a chronic illness.

The Trouble with Emotions

Emotions are so sticky and frustrating at times.

Growing up I never received the necessary training on how to effectively and healthfully manage my emotions. In New England, any sort of expression of emotion was frowned down upon so I learned to suppress my emotions as much as possible. Because I did not have a good outlet to manage my emotions, I turned them inward and started taking all the frustration out on myself.

Self-Harm as a Coping Mechanism

Rather than finding a healthy way to manage my emotions, I found that hurting myself was the only way to let all the negative emotions out. It was partially as a form of relief, but also a form of personal punishment.

I felt like I deserved the pain I caused because of something minor I did. I had a tendency to burn myself with matches and candle wax. I would spend hours picking at my face for perceived imperfections, not even stopping after I drew blood. I graduated at the end of high school to cutting my upper arms and hips, with some scars still there today.

I’ve seen other examples of self-harm online and mine were never extreme. While I still have scars, I felt like I was an imposter, a wannabe looking for attention when I hurt myself. Yet I hid my scars and scabs so no one knew what was happening. It was my secret and I did not want to have to answer questions.

I was doing this because I did not love myself and I needed to find a way to help me overcome this unhealthy behavior.

Therapy but then What?

When one self-harms, the first piece of advice everyone tells them is to go to therapy. Therapy is wonderful if you have a good guide in your therapist, but finding a “good” therapist is a lot of work. Especially when you are emotionally drained and the mere thought of looking for a therapist is overwhelming.

I am not deriding therapy, in fact, I absolutely encourage it as a means to effectively and healthfully work through any difficult and frustrating emotions you are feeling.

Here’s the “but”: therapy is a partnership.

You enter a relationship with your therapist and if it’s not a beneficial, productive, and has an unhealthy dynamic, then it is important to look for a new therapist. Therapy should be supportive and productive and the dynamic between you and the therapist must be a healthy one.

It took me several therapists and therapy styles before I settled on one that works for me. While I won’t say what style it is, I can say that without my therapist telling me directly, the focus in each session is self-compassion. We work together on finding ways to love myself, imperfections and all.

I think my experience with various therapists and styles helped me be receptive to the idea that my imperfections are part of what make me, me. Perfection, though we may desire it, is rather boring. The asymmetry in my life, my flaws, mistakes, bad behaviors: that’s what makes me an interesting person.

A therapy style that focuses on self-compassion may not be for you. You may want to do that outside of therapy, or not at all, and that is okay. It’s really about finding what works for you and getting yourself into space where you are able to love yourself.

You’re Never Prepared

Whether you are in therapy or not, when you are starting a personal journey to wellness, a lot of junk comes up and that can distract you from continuing with your personal goals. I say junk because it really can be clutter that serves to distract you from making positive changes.

I am not demeaning whatever that “junk” may be because it might be something you need to deal with, but the important thing is to take a moment (or month or year) to really work through the stuff weighing you down and finding a way to let it go or work with it.

This isn’t saying “just move on” or “just get over it.” Absolutely not. Some things you can’t get over. Some things are so ingrained within us and define us or are a part of us that there is no way to “get over it.” Rather, it’s about recognizing what you can change and what you have to work with and learning to love yourself through self-compassion to help manage it.

Dealing with crippling depression? The last thing you want or are able to do is to say “I am worthwhile and I deserve to love myself.” But if you are able to take a single moment in the darkness to say it, it may bring a small comfort to help you get up for a few minutes to work on something before retreating. It’s about taking those small steps, no matter how small they may be, that can get you moving in a healing direction.

You are never prepared for what comes up when working through things, or trying to make self-improvement changes. I have found that I can be going along thinking everything is okay and then something pops up that distracts me and demands my attention. That’s why I’ve had to reframe how I look at my whole journey.

Self-compassion helps with that re-framing.

How I Deal with Emotions Now

Since working with self-compassion on a more conscience level I have found that my desire and action for self-harm has lessened greatly. I still instinctively hit my head or leg if I have a particularly distressing thought, but it is no longer on a daily basis, multiple times a day.

Now, I have a split second between that thought and my arm raising to stop myself. I can use a mantra I’ve created for myself to stop the behavior before I do anything. I self-soothe myself into a more calm state by putting my words and situation in proper perspective. There are still times where I will react to my thoughts too fast, but once I realize what is happening, I can stop it from continuing.

I am also finding my negative thoughts/actions in previously emotionally charged situations lowered. Before I might dwell on something for hours on end, get territorial over something extremely petty, or imagine hypothetical scenarios with confrontational outcomes; but now I just let it go quickly. I still may have a minute our two where I think about it, but it no longer consumes me in the way it once did.

In short, I feel healthier and less stressed than even a year ago. The other day I came to a wonderful realization about how well I am managing my MS (more on that in an upcoming post) and this is without medication. I can’t even begin to imagine where I will be when I start up my MS medication again.

I may be unstoppable.

Self-Compassion is a Journey, not a Destination

Once you’ve come around to the way of thinking and embracing self-compassion know that that’s not the end of it. Self-compassion is something that I’ve had to practice with myself every day and mindfully practice. There are days where I don’t think about it or it is unnecessary, but there are other days where an old memory will pop up or I do something that I regret and want to take out on myself.

It’s in those moments that I have to remind myself that I am worthy of my love and I need to be kinder to myself.

There isn’t going to be a moment where I can say “I can stop being self-compassionate now, I’m healed!”

Life is, well, a life-long journey. In 20, 30, or possibly 50 years I will still need to engage in self-compassion. It will hopefully come more quickly to me, almost reflexive because of all the work I am doing now, and I may not even recognize that I am doing it.

Regardless, now that I’ve discovered this healthy method for dealing with my emotions and feelings, I have no plans of turning back.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Michelle Melton


treating-chronic-illness-with-self-compassion

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit:  Kinga Cichewicz on Unsplash


chronic-illness-and-self-care

…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.

Read More


self-soothing-as-chronic-illness-treatment

Learning to Love Yourself…

Credit: WP.com at Gfycat.

I am a fan of RuPaul’s Drag Race. In my low emotional moments, Ash reminded me of what RuPaul says to her queens at the close of every episode: “if you can’t love yourself, how in the hell you gonna love anybody else?” I laughed at the reminder, but he was right. Loving myself is a form of self-soothing and a great way to manage my chronic illness.

If I don’t learn to love myself and treat myself right, how am I expected to care for anyone else? An easy form of showing love for ourselves is to engage in the act of self-soothing.

Not Just for Babies

Look up self-soothing on your search engine of choice, and you’ll find tips to teach babies and toddlers to self-soothe. I am in the middle of this milestone as I work with Jai to find appropriate self-soothing techniques. Because of this, it’s fresh in my mind of how important self-soothing emotionally and physically.

At its very core, self-soothing is finding ways to calm ourselves down. Parents are encouraged at the beginning to provide healthy tools for children to care for themselves. Sometimes these techniques carry into adulthood. But some people use less healthy means to soothe, chemicals and unhealthy behaviors can distract from negative feelings.

As we grow older and life experiences get in the way, there is a tendency to forget or dismiss the important stuff we learned as children. If you were never properly trained to healthfully self-soothe, this concept is completely foreign. Rather than looking at self-soothing as something for babies, look at it as a healthy way to manage your emotions with love and compassion.

Self-Soothing for Adults

I still sleep with my childhood teddy bear because it feels weird to not use him as a pillow or cradle him in my arms. It’s something that brings me comfort and helps me fall asleep faster. And as a mother of a toddler, more sleep = more energy in the morning.

I mention this because it’s a form of self-soothing I’ve carried over since childhood.

You may not still have your childhood stuffed animal, or partners might make us feel uncomfortable if we start reaching for childhood comforts, so consider more grown-up techniques to soothe yourself:

  • If you have an oral fixation, consider drinking an herbal tea. Use honey as a sweetener (if you aren’t vegan) as this will help relax you.
  • Grant yourself a few minutes to veg out on your phone, tv, computer, etc. Instead of feeling guilty about it (“I should be doing this…”), set yourself a timer and give yourself permission to escape for a few minutes.
  • Pick up a new hobby that is both fun and stress-free. If you’ve never had the opportunity, consider doing a group painting night or paint ceramics. Make something that you can appreciate and reminds you of the fun you had while creating it.
  • Give yourself a hug. This could be a bath (if your illness allows it), getting a mini-massage, or taking yourself out to coffee.

Self-Soothing as Chronic Illness Treatment

So how can self-soothing help as a chronic illness treatment?

If you recognize warning signs of an attack or feeling overwhelmed, take this time to soothe yourself. While the above section works if you have a chronic illness, there are a few more ideas that are specific to chronic illness:

Because, well, You’re Worth It

The key concept is that you are worth taking the time to care for yourself.

Chronic illness can beat us down and make us feel bad about ourselves.  Sometimes these feelings are a secondary response to the illness or in the case of MS, the illness directly impacting brain function.

Self-soothing is a way to regain control over the uncontrollable situation and saying that I am worth my love. If you struggle with loving yourself, consider taking the baby steps of self-soothing as a means to get to a place where you are able to more actively take care of yourself.

Loving Yourself

Self-soothing boils down to loving yourself and telling yourself on a daily basis that you are worthy of that love. It’s also acknowledging that there will be low points and so you need to take the time to mitigate that.

How do you take care of yourself? What makes you feel better when you are feeling low emotionally? Leave your thoughts and comments below.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Michelle Melton