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.

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Where to Start with Self-Compassion

There is a lack of control when it comes to a chronic illness. For many of us, that lack of control gets frustrating and lead us to take our frustrations out on ourselves and those closest to us. True, society doesn’t blame us for feeling frustrated, but I hate feeling like I am mad at everyone, the world, and myself. I had to figure out where to start with self-compassion to help feel better about myself.

I am not going to be discussing anything groundbreaking, but I do want to spend this post detailing ways you can start the process to love yourself in spite of your chronic illness. The person most in need of love is yourself and I want to give you permission to do so.

Chronic Frustration & Struggles

Chronic illnesses lead to feelings of frustration with self beyond the normal struggles people face daily. Some typical struggles may be:

  • Figuring out what is wrong
  • Knowing what’s wrong and not knowing/wanting to deal with it
    • I know that this is an attack, but I really don’t want to go to through the doctor hassle to deal with it. Maybe it will calm down after a few days…
  • Feeling singled out with symptoms
    • Karen has the same illness as me and she seems to be doing better than me. That’s so unfair.
  • Frustration over limitations brought on by the illness
    • I took it easy yesterday so I could do a bunch of stuff today, but I still feel like I was hit by a semi-truck

This is just the tip of the iceberg for frustrations and struggles, but they are very real and impact how we live our lives. Our thoughts hold so much sway over how we act and interact with the world. When we listen to the frustrations and give into perceived limitations, it can impact how we manage our illness and possibly the degree the illness affects us.

We may direct our anger towards ourselves because we feel like we have no one else to blame. We may not want to take it out on loved ones because it’s not their fault. We also may not have anyone to talk to, despite having a possible support group, because chronic illness feels so isolating.

Feeling out of Control

All of this is to say, there’s a complete lack of control over what is going on when dealing with a chronic illness. You may have your illness so well-managed with medication, complementary therapies, and wellness-based living that you feel in complete control of your situation. But all it takes is one slip up, like a bit of unknown gluten slipping in your diet, or just life throwing an unplanned curveball for an attack to arise and make you feel completely out of control.

That’s the problem with chronic illnesses: there isn’t always a concrete reason for the attacks or symptoms. What minimally affects one person may be completely overwhelming for yourself. When I first received my diagnosis I couldn’t help but feel like the universe had it out for me and was so frustrated by the lack of control over my symptoms and disease.

What many of us want in our chronic illnesses is to control the uncontrollable.

An unproductive way to feel in control is to focus negativity inward. Some of us feel a lot of self-loathing and act on that in unhealthy ways, while others may just want to be down on themselves because it’s a “go-to” coping mechanism.

Where to Start with Self-Compassion

Some ways to begin incorporating more self-compassion in your life:

  • Recognizing the moments when you are unnecessarily harsh on yourself. I know that these moments can happen at the most random times for myself, but are highest just before or in the middle of an MS exacerbation.
  • Once those moments are identified, just start saying to yourself “it’s okay, I’m okay, I’m only human and that’s okay.” Come up with a silly, but the memorable mantra that works for you. Positive forms of humor may help shake you out of your feelings of frustration.
  • Talk to yourself like you are soothing a small child. This isn’t a condescending practice, for many of us, there is an inner child needing special love and attention. If you never received guidance on how to speak with a hurt child, think about what you would want a grown-up to say to you when you were younger.
  • Seriously consider looking into therapy for yourself. Sometimes the hurts run too deep that you need an objective third party to sit down and speak with you and provide positive guidance in your journey. Using therapy isn’t defeat, it’s using tools available to you. Ask if they promote self-compassion.

Beginning to see your Self-Worth

The first, and hardest, step you will need to take is acknowledging the following: I am worth loving myself. I am worth caring for myself. I am worth forgiving myself if I feel like I need to.

When you mentally accept that you are worthy of love, particularly your love, you begin a journey down a healing path. You will start to see things differently: relationships, perspective, life-management; all will shift into a more positive and healthy space.

You will get push back and that will be hard.

That’s why saying “I’m worthy” is the first step in the self-compassion journey. When it’s time to care for yourself because someone or something hurt you, you already know that you are worthy of that self-care. You can own your decisions as being what’s best for you, and curtail internal concerns that you are responsible for others.

I have found caring about what others think and how they respond to me puts me in an unhealthy mental space. Saying that I am worthy of positive interactions helped me phase out negative individuals with minimal guilt. The guilt is still there because that’s still ingrained, but I no longer back-track and allow the negativity back into my life.

Do you see your self-worth? What works for you to see it?  Leave your thoughts and suggestions below.


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self-compassion-and-chronic-illness

Self-Compassion and Chronic Illness

I’ve spoken about self-compassion on the MS Mommy Blog before and what a positive impact it’s had for me as a personal coping tool. When I first read Dr. Kristen Neff’s book, Self- Compassion, I fell in love with the concept as a life philosophy. I recognized that self-compassion and chronic illness go hand-in-hand, and should be recommended by our healthcare professionals as part of our disease management regimen. It’s easy for us to get self-critical when trying to manage our illness that we don’t remember that part of our care should be loving ourselves no matter how “broken” we might feel.

What is Self-Compassion?

Self-compassion is exactly what it sounds like: taking compassion (i.e. understanding and empathy) and turning it inward. Practicing compassion for ourselves is the first step of successfully being compassionate towards others. If we can love and care for ourselves, we are able to extend that love to others in our life.

Self-compassion is about forgiving ourselves even when we don’t need to: sometimes we take on responsibilities when it’s not warranted. I know I’ve mentally beat myself up over perceived missteps and learned to “forgive” myself so I could move forward mentally and emotionally.

As humans, we suffer. It might as well be the third absolute truth of life: death, taxes, and suffering.

So when we engage in compassion, we are recognizing the suffering and do what we can to help mitigate it for others. Sometimes helping others who are suffering dampens our own suffering, but the caretaker tends to be the one in most need of care.

Treat Ourselves as We’d Treat Others

There’s the golden rule we’re taught as children: treat others as you would want them to treat us. I think we forget that if we don’t’ treat ourselves well, how can we expect others to treat us well?

I know that if I don’t think very highly of myself, I  prone to let others take advantage and bully me. I feel like I deserve it, even if it makes me angry and I lash out in response. Once I began to say to myself: “no, I don’t deserve this treatment,” I found that the negative relationships went away.

And I felt better about myself for it.

Meaningful life changes come when we acknowledge our own importance in the world, something that is hard to do if we’re conditioned to feel unimportant. When we treat ourselves well,  we’ll be able to treat others well.

Tell yourself that you are worthy of your love and see how that alters your perspective.

Self-Compassion and Chronic Illness

So what does self-compassion have to do with chronic illness?

As I’ve previously mentioned in the blog, it’s easy to beat ourselves up and feel massive amounts of disappointment over something we cannot control: our health. Refocusing our anger and frustration to loving and caring for ourselves when we cannot control the situation is a better use of our emotional energy.

If your chronic illness is like mine, undue emotional stress, especially when controllable, leads to attacks. Rather than engaging in the behaviors that put me at risk for an attack, I reject the desire to blame myself and choose to love myself is a means of managing my disease.

An Invaluable Tool for Life

If you don’t have a chronic illness impacting your day-to-day life, engaging in self-compassion is a wonderful way to healthfully handle all that life throws at you. I have found that it’s a tool I wish I used more prior to my diagnosis. My overall satisfaction level with my life is up, which is something I could not say seven years ago.

Looking forward this month, the blog will discuss more in-depth the importance of self-compassion, ways to remember to use it, and reviewing the book Dr. Kristen Neff’s book that started me on this journey.

If you haven’t already, please sign up for the weekly newsletter so you don’t miss Friday’s posts and free materials to help you along your wellness journey this year.


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Identifying Chronic Illness Roadblocks

Each chronic illness is unique in its own way. If you have MS you know what to expect, but from MS case-to-MS case, what someone experiences is vastly different from someone else. This makes identifying chronic illness roadblocks particularly difficult if you are trying to figure out how to handle them.

I tend to be asymptomatic in a lot of health-related areas in my life. When I get optic neuritis, I get the vision blurring, but I don’t have any of the pain associated with it. Other people may get the vision and pain, while still others may just get the pain but no vision disruptions.

That’s why it’s important to focus on what happens to you in your situations, not what books or healthcare professionals say you should be experiencing.* Only you know yourself best, even if you haven’t taken the time to actively reflect on your illness.

Below are some questions you want to ask yourself and some tips on where to go depending on your responses. Use this post as an exercise in starting a plan for how to identify and manage your chronic illness roadblocks.

Identifying Life Goals

If you’re a newsletter subscriber, you’ve been working on creating some goals for this year. We’ve established 5 major goals to complete for 2019: 1 long-term goal and 4 short-term ones. If you are here to make some changes while coping with a chronic illness, ask yourself the following questions:

  • What is a specific goal I have in mind for myself?
  • How will this impact my life? How will it impact it for the better?
  • Is this a major life goal? (i.e. something that will alter my life path significantly)
  • Is this a minor life goal? (i.e. a small change I’ve wanted to make)
  • Is this goal related to my chronic illness and in what way?
  • How might this goal impact my illness postively or negatively?

Identifying Chronic Illness Roadblocks

Each chronic illness has its own set of complications that stick with us on a daily basis. It may be pain, numbness, fatigue, or some other invisible element that only serves to frustrate us. Take a moment to list out your daily symptoms when you are not experiencing an attack. Use the following ideas as prompts. You may need to take a few days being mindful of your schedule in order to accurately respond to the prompts:

  • My average energy level each day between 1 and 10 (“1” being no energy to “10” being on 5 cups of coffee) is:
  • My average pain level each day between 1 and 10 (“1” being no pain to “10” being necessary medical intervention) is:
  • What are my motor abilities on a good day? What are they on a mediocre day? What are they on a bad day (but not during an attack)?
  • How often do I have non-attack “low” days? (these may be days where one or more symptoms seem to be overwhelming)
  • How often do I have “high” days? (these will be days when your “spoon” or “matchbox” might be full)
  • Do my days have a cycle to them? Do I have more energy in the morning or in the afternoon?

Additionally, examine previous attacks brought on by your illness. Answer the following questions as honestly as possible. Contact your healthcare professional if you don’t remember or need clarification to get an accurate answer:

  • What attacks have I experienced in the past?
  • What happens in these attacks most of the time?
  • How long do they typically last?
  • How do I manage them alone? How do I manage them with my healthcare provider?
  • Do I know the source of these attacks? (i.e. if I am under a lot of personal stress am I more likely to experience an attack)
  • If I have a particularly bad attack, how disruptive to my life is it?

Make an active decision to chronicle your next attack. Write down the answers to the following points:

  • What happened just before it started
  • What was the first sign of the attack
  • How long did it go on for and what were the specific symptoms
  • What did you need to do to resolve it
  • What did you feel like after the attack (drained, relieved, etc.)
  • Is there a clear event that triggered it or a collection of factors

Making an effort to chronicle your future attacks will help you begin to recognize when you may be getting close to an attack and help you prevent it from starting or start the process of treating it.

I find that my L’Hermittes sign tends to appear when I am stressed out and goes away when I manage my personal stress levels. It’s a canary in the coal mine for me: if I don’t manage my L’Hermittes Sign and allow it to get more pronounced, then I may find myself in the middle of an even worse attack such as Optic Neuritis or lose limb functionality.

Plan to meet those goals

Once you’ve identified your goals and the chronic illness roadblocks (for “normal” days and attack days), it’s time to set up a plan on how to approach your goals. Look at the lists and examine any overlap or similarities in responses to the lists.

For example, in your personal goals, you may want to do more housework but found that on a normal, non-attack day you typically do not have enough energy by the afternoon.Therefore, you may want to schedule any housework you want to do in the mornings rather than putting it off until the afternoon.

Go through each goal and see how it might be impacted by your daily chronic illness symptoms. Then incorporate your attacks with your plans this year:

  • Do not be afraid of the schedule and to-do list. I realized in the months leading up to 2019 that I really needed to rely more on my planner and to-do lists in order to get everything done. My MS causes memory issues, so if something isn’t written down, it’s unlikely I will remember it.
  • Set up multiple goals that are situation specific. If you find that your attack leaves you bedridden for an indefinite period of time, set up a secondary goal that can be done while in bed. You may want to learn a hobby that allows you to work with your hands, or you might want to do more freelance work on your computer – have that goal take precedence when you are in the middle of an attack.
  • If you get tired at the beginning of the day no matter how well you space out your tasks, then front-load all your plans. Try to keep the amount to a reasonable number that you can achieve every day. Don’t plan for ten things if you can only reasonably complete four. This will prevent discouragement and give you a nice boost when you feel productive.
  • If you find that fatigue gets you and you absolutely must rest in order to continue forward, then plan in a daily nap at a specific time so you can help manage the rest of your day. If you are still working, try to schedule a break during this time to give yourself a few quiet moments.
  • If your attacks are ones that bring you to the hospital for a few days, pack a “go” bag ahead of time. Make sure to fill it with comfort and necessities, but also fill it with some of your smaller goals: easy to transport craft, a book you’ve wanted to read, some other project that you know you’ll be able to work on while recuperating. You won’t be scrambling looking for these items and it brings some control back into the situation.

These are just a few ideas to get you started on managing your roadblocks. The key is, if you plan to meet your goals, despite having the additional roadblocks, you’ll have more success.

Work with the illness, not against it

There is a temptation to either ignore or not factor in an illness when setting up goals. The issue with that is, while not acknowledging the illness might be for personal protection reasons, it’s setting yourself up for failure.

If I choose to ignore that fatigue is a problem for me, particularly after 1pm, then it is unlikely I am organizing my time wisely. If I want to successfully achieve my goals knowing that I need a nap around 1pm, then I will schedule only the important tasks before noon (to allow for some wiggle room). Any task completed after 1pm will be gravy and any task not completed after 1pm will be pushed off until tomorrow.

  • By identifying what is the source of your attacks, you can plan how to prevent or work towards preventing those attacks. It won’t be perfect or 100%, but it might help minimize the attack impact
  • Do not ignore the importance of the attacks. Many attacks can come out of the blue depending on your illness, but some are your body’s way of telling you something important. For me, it is telling me that I am pushing myself too hard and putting myself under unnecessary stress so I need to take a step back.
  • Do not look at an attack as a setback, but as an opportunity to reset and regroup. It might take you out of commission for several weeks or send you in the hospital, but this isn’t something that has to be negative, but turned into a positive: I need to rest and take care of myself, so let me do so in these moments.

Remember, being caring and loving to yourself should be behind all of your personal goals. If you want to make self-improvement goals, you are doing them from a place of wanting to love yourself.

Motivation, Motivation, Motivation

Figure out what motivates you. You might find that checking things off your to-do list motivates you to move forward. You’ve answered the questions why you want to make changes, find ways to actualize these changes in your mind.

If you want to keep sharp by doing some brain exercises, think about how nice it will be to be able to remember something without needing to write it down after doing exercises for a few months. If you want to find a new job because the current one is providing stress that exacerbates your attacks, then when you walk out of your interview should be a point of motivation.

Regardless of what it is that you want to do, maintain your motivation by seeing yourself where you want to be and the doing everything to get there. I found that beating my attacks back sooner than I did in the past as a form of motivation, which may work just as well for you too.

Keep moving forward

Attacks are going to happen. You will experience roadblocks. But how you manage the roadblocks will make all the difference. Always keep a plan in mind when identifying chronic illness roadblocks and making personal changes.

What keeps you moving forward? Share your thoughts in the comments below.


*I am not saying ignore or dismiss your healthcare professionals advice. I am. Please read my disclosure policy for more information.


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Overcoming Roadblocks with a Chronic Illness

If you are taking this journey to wellness with a chronic illness, an understandable first concern will be: what about the normal roadblocks I encounter with my illness? What if I have a flare-up and cannot do anything for weeks time so it sets me back?

These are valid concerns and I am here to tell you that it will be okay when that happens.

Despite my best efforts, I still get mild MS flare-ups throughout the year. Because of my blog, I’m more aware that during the transitional times of the year, spring into summer, summer into fall, I am more likely to have some form of a flare-up.

These flare-ups can set me back a day, a few days, a week, and in one extreme case, a few months (though that’s been a while). 

I have learned to accept that these flare-ups are normal and move forward in my journey in spite of them.

New Journey; New Frustrations

Whenever starting a new journey there’s always moments of self-doubt. Will I succeed? What will the success look like? What would failure look like? How do I avoid failure?

There are always a ton of questions. When dealing with personal goals that require us to do extra work, such as adding in an extra walk for the day, looking over a boring task that you’ve been avoiding, or working through a particularly emotional part of your life; it’s easy to get stuck and want to avoid dealing with it altogether.

That’s part of the problem, something gets frustrating so we put it off and then we get discouraged and the cycle continues. Adding in a chronic illness where things happen out of our control adds an additional layer of frustration.

Chronic Attacks!

In the Multiple Sclerosis communities, we have many different names for when the illness/disease takes over: flare-up, exacerbation, and my personal favorite, the relapse. If you have another autoimmune disease, chronic illness, or personal wellness roadblock, you might have a different name for it.

To avoid confusion, let’s just call it an “attack.”

Attacks happen. You know they are going to happen and that might be discouraging, but it’s part of your normal like it or not. We might as well take a moment and embrace it. Our normal is not the same as anyone else’s normal. Let’s be honest: no one’s “normal” is like anyone else’s with or without a chronic illness.

The best thing we can do in these situations is to recognize that attacks will happen and prepare ourselves for dealing with them effectively. If you know what triggers an attack and how to manage it, then make a game plan.

Make the Changes Anyway

Since we know roadblocks with a chronic illness are going to happen anyways, there’s never going to be a good time to make the wellness changes you’ve been wanting to make. That’s why now is the time to make those changes regardless.

I would love to have a day where I don’t deal with any fatigue so I can do my yoga or respond to a bunch of emails that end up taking several hours. But I won’t get that day and if I do, I cannot plan for it. Chronic illness never allows me to fully plan when and if things get done.

If I want to do yoga or be productive, I have to make those changes regardless. Roadblocks with a chronic illness are normal, so it makes sense to accept them and work with the roadblocks when it comes time to start a wellness journey.

It sounds like I am saying “just do it,” and on the surface level, I am. But what is different is how you approach the “just do it” attitude. I am reducing a very complicated situation down to changing perspective because that’s the first step in a very difficult and very personal journey.

It’s all a Matter of Perspective

If you’ve been in the middle of your illnesses long enough, it’s easy to forget what it’s like to have a “normal” life. Concerns for attacks can rule your days, so you forget how different concerns would interfere with those who don’t cope with a chronic illness.

A car breaking down can take someone out of commission for weeks at a time, like an episode for us. Twisting an ankle might keep a person from exercising for a week until they recover, just like an attack.

Sure, we have the added concern the same things that happen for “normal” people happening to us PLUS dealing with an attack, but the point is –  everyone has things that can bring up a roadblock and stymie all progress made when trying to live a wellness-based life.

Maintaining the perspective that there is always a concern for an attack, but focusing on it ending (even though you don’t know when) and finding small ways to work around it will keep you going. Obviously, some attacks will prevent you from moving forward because if you are bedridden and there may be little you can do to adjust. However, if you are bedridden but able to lift a weight, even if it’s a book for a couple of repetitions, the very act of doing something may be enough to help keep you going.

Adjust your perspective to see that you are not alone because everyone has roadblocks, and that your roadblocks just look a little different than others.

Roadblocks with a Chronic Illness

As you begin your wellness journey, expect the roadblocks or attacks to happen, and embrace them. I am not recommending leaning into them to make excuses, but say to yourself: well, this is going to happen and I can’t necessarily change it, so I might as well work around these roadblocks to bring about a positive change in my life.

I cannot guarantee it because I am not a healthcare professional, but there’s a chance recognizing these attacks as normal and adjusting your perspective to be prepared for them might help lessen the attacks when you get them. It may never prevent them and what damage/time taken away from your life, but when you are ready for something you know how to effectively deal with it.

I have found that I’ve shortened the length of my attacks when I am prepared and don’t allow the attacks to discourage me or my progress. I tend to have an attitude of “well this is an annoyance, but I clearly need to slow down because I am overworking my body in some way.”

This suggestion and method of approach are not “one-size-fits-all” but if you’ve never tried to prepare yourself for these attacks in mind, it would be worth trying to account for them over the next couple of weeks.

For Wednesday, look for a post on how to begin the process of planning for and accounting for roadblocks.


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