Is More Better?

I fall into the trap of thinking more, newer, shinier is better. When a new phone generation comes out, I am counting down the days when I can trade my working phone in. If I am purchasing a new product, I always check to see when the company plans to release an updated version to avoid buyer’s remorse. One thing I dislike is buying a new gadget and finding out I could have waited a week for a newer one. Buying multiple devices to do one thing in my kitchen happens. I sometimes feel more is better.

Having a child changed my perspective. When the house started to get cluttered with toys, I realized more is not better. Less really is more. 

It was at the height of the Kon-Mari craze that I realized clutter was getting in the way of my satisfaction. But it wasn’t just physical clutter; it was mental clutter as well. I spoke about this in my two-part post about toxic relationships.

Sometimes I jam up my physical and mental space with a lot of stuff to feel distracted and in control. Upon reflection, I realize I am more out of control with the more stuff I accumulate. 

The Drive For Things

It’s a much longer post to dissect the human drive for “things.” Rather than doing a deep dive into psychological research on a macro-level, I want to reflect on my own experience accumulating “stuff.”

I think I, like many other people, buy into the idea that more is better and better makes me happy. It’s necessary to make that statement in the present tense because it is something I am currently working on. For example, I am attending a wedding soon. I feel a cultural drive to go out and buy a brand new dress for the occasion. I have at least one acceptable dress, yet I still feel this strong urge to get a new one.

Why is that? I honestly can’t explain it, and in light of recent celebrity events, purchasing a new dress isn’t environmentally sustainable.

I can’t help but feel like I am committing a social faux pas if I don’t buy a new dress. The bride doesn’t care; the groom doesn’t care, and no one but myself cares over this relative trifle matter. Yet the drive for more is there.

This drive for things is standard, at least for a person living in America. Our country grounded itself in Manifest Destiny, the journey forward, and for more resources. I do not imagine a cultural push towards accumulation; it is there, telling me I am discontent with what I have. Western culture, at large, thrives on materialism. 

Each time I want a newer phone, a newer kitchen gadget, a newer dress, I am engaging in that cultural drive for more stuff. But what happens when I get what I want?

According to science, wanting is all well and good, but our reasons for wanting material goods is problematic. We want things because we think that a new item will make us happy. Often, it does not because it does not solve the core issue: what makes us discontent. My wanting a new dress is stemming from a desire to show off something new. But will that make me happy? Probably not. 

Instead, I will feel bad for wasting resources on an article of clothing that I will either wear once or rarely. 

Limited Resources

With a chronic illness, we are limited in our resources. For some, our financial resources are low due to care costs, and for most of us, our mental resources are little due to the disease. 

We do not have the space for clutter. Yet, somehow I can convince myself a second slow cooker will be helpful around the house. Granted, it was an Instant Pot, and it has been beneficial, but now my older slow cooker is taking up precious space. 

Having extra things causes me anxiety, and that’s normal. I feel anxious every time I walk into the house and see something out of place. I am not looking for pristine perfection in my house, but not feeling overwhelmed by items would be nice.

It is the same with my mental clutter. When I have too much going on in my mind, too many things “to-do,” worries about social mistakes, or just general messy thoughts, I get anxious.

I believe, for me, accumulating stuff and thoughts are ways to control the environment around me. I’ve talked about my need for control before and how illusive control is in life. If I keep buying stuff, maybe some of those items will make my life easier. Often, they end up collecting dust because I go back to my old way of doing things. I end up wasting time, money, and learn nothing about how I don’t need to fix something that isn’t broken.

If I am looking to be more efficient with something, chances are I don’t need a new item, but can be creative with what I already have. When I am more resourceful, I find pleasure in the challenge and a solution that works.

Likewise, I clutter my mind by distracting myself with reading, gaming, and wasting time online because I don’t want to be alone with some of my thoughts. Occasional distraction is good, but we’re talking about spending days trying to keep my mind so distracted to avoid dealing with an issue. 

Reflecting on Moderation

So far, the best solution I’ve found for myself is to begin stripping down my life. I realized this in December 2019, before the Christmas Holiday. A holiday that embraces material excess, I recognized the need to move things out of the house before bringing in new stuff. We never excessively celebrate Christmas, but bringing in two new items is still two new things that need space.

Ash and I started to assess what we needed and what we could live without. Unfortunately, the first section was our books. We have hundreds of books that we don’t read, but take up space. We stripped down most of our collection, and I bought a Kindle PaperWhite. Another item! However, I can access most of the books I purged and utilize the local library online. I traded hundreds of books, hundreds of pounds of items, and multiple shelf spaces for a small, lightweight gadget. 

So while I still engaged in materialism, I did so in a smarter way. Rather than buying a new book that I may not read, I can borrow it when I am ready to read it, and it remains in a digital space. Since taking this small step towards moderation, I feel more relaxed. I have more space to store other items, and I no longer feel the need to acquire more physical books. 

I am living in one extreme, with too much stuff, and I am taking small steps towards moving towards the middle. I feel more in control because of it. I think because I am decreasing my desire to chase after things and reflecting on an intelligent way to spend my money. 

Likewise, with my thoughts, I am forcing myself to confront them more often. I still distract myself, but I make an effort to tackle a “to-do” item or soothe a negative thought at least once a day. The more I do in a day, without feeling overwhelmed, the better I feel. 

I am becoming balanced because I am learning to embrace moderation and appreciate the value of “less is more.”

Attention to Chronic Illness Bloggers!

The MS Mommy Blog is looking to collaborate with other chronic illness bloggers for this year. If you have a chronic illness blog and would like an opportunity to tap into the MS Mommy Blog audience, please contact me here. I look forward to hearing from you.


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Embracing Big Changes in Life

At the end of October, I wrote about the prospect of losing Lytton to a mysterious illness. I had hoped to get more time with him as we thought we had a few options to manage his health. But towards the end of November, we had to do the compassionate thing and end his suffering. I learned a lot about embracing big changes in life during that time.

While I consider myself fortunate to have a few weeks to prepare for it, I am still in shock over the quickness he went from healthy to terminally ill. From the first sign of his illness to when we said goodbye was a month and a half. I prepared, but it’s hard to move that fast for such a substantial change.

Yet, significant life changes happen all the time. Our diagnosis. Buying a house. Losing a loved one. Finding someone new to love. The changes discussed in this post are the ones completely out of our control.

Change happens. Sometimes we can prepare ourselves for it, but often we cannot. What we can do is take the time to embrace the change. Regardless of whether you consider the change positive or negative, it’s going to happen regardless of your wishes. Rather than fight it, we find a way to work through it.

How Can Change Help You?

Change can help us, even if it’s unwelcome. I don’t know when I will reach the point where I can sincerely say losing Lytton helped me. Each day, I go through all the stages of grief as I try to move through my new normal.

Yet, I admit that losing him tested the effectiveness of the wellness journey I’ve made over the past few years. I did not need the confirmation that it works. But, the fact that I still haven’t experienced an exacerbation is proof that I am managing healthily. 

Lytton’s death reminded me of the impermanence of life. I pushed death to the back of my mind as something that happens to other people but hasn’t touched me. With that attitude, I did not appreciate everyone around me in the way I do now. I recognize that anyone can leave me permanently, with no explanation. 

Finally, it reminded me that change happens, and I can get through it. The last time I experienced a “negative” life shift was after my diagnosis, almost seven years ago. I regrouped and was eventually able to move forward. 

Change, whether it’s good or bad, can help you discover essential things:

  1. The importance of taking time for yourself. If you experience a life change, negative or positive, take some time to sit with it. 
  2. Self-care, again. The further I get into life, the more confirmation I get surrounding the importance of self-care. Self-care can be in celebration or to help calm oneself after the change.
  3. How resilient we are and why finding ways to adapt is essential. While we must accept an uncontrollable change, we don’t have to roll over. We can find ways to adapt and adjust to change. 
  4. Appreciate life before, during, and after the change. We can recognize what we had before, find ways to enjoy life as it is, and understand what life might be in the future.
  5. Finding the positive in the negative. It might take some time, but there’s always a silver lining even in the negative changes. You might find comfort knowing what’s going on with you, be at peace because a person no longer suffers, or allowed to try a new career opportunity.

Embracing Big Life Changes

The key, I’ve found, is to lean into the uncontrollable changes for better or for worse. There are some changes we can fight for, opportunities we can pursue even if the door keeps shutting. But often, significant changes are out of our hands. We cannot prevent the new direction our life goes in, so we can accept the outcome and find ways to adapt.

The first step is acceptance and embracing the big changes. Finding ways to adapt follow closely behind.

For me, while I would love to run out and find a Bombay kitten similar to Lytton, I am learning to reconnect with our other two cats as a form of acceptance. Lytton was such a significant presence in our household that often, the other two cats functioned like roommates we cared and fed. I am spending more time with them, whether they appreciate it or not, and loving on them.

After my diagnosis, I fought the information, choosing to be ignorant of my MS because it was too painful to acknowledge. Behaving this way did not improve my quality of life. But once I took steps to accept and adapt my reality, I found greater satisfaction with everything.

If there are negative feelings associated with significant life changes, it’s hard to accept and adapt, especially in what we feel is a timely manner. Remember to honor your timetable, but be open to acceptance as your goal once you’ve finished mourning (death or health change). 

Big changes are going to happen in life. We have two options when encountering change: embrace it or reject it. When we embrace the change, it allows us to heal and move forward. When we reject it, it can prolong our dissatisfaction and cause stress.

In the end, the decision is ours how we deal with change.


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Assessing your Chronic Illness

Chronic illness takes many different paths. For some people, their illness takes over their lives, rendering them immobilized from disability. For others, it registers as a minor inconvenience where they can lead relatively “normal” lives. And there’s a chunk of people who fall somewhere in the middle. As we near the end of the year, it’s an excellent opportunity to assess our chronic illness objectively. As we look towards the new year, it allows us to enter 2020 with a fresh perspective about ourselves and our disease(s).

Often, we think we know where we fall in our chronic illness scale. Sometimes, our emotional mindset distorts the actual reality. I make this point as someone who fell into a trap believing I was worse than I was. It took several self-reflection sessions to realize I was not looking at my MS realistically.

Because I was unrealistic about my MS, I was not approaching my management effectively. I thought I couldn’t exercise, I couldn’t hold down work, and struggled for a time over becoming a mother. My distorted view of my abilities limited me for several years from achieving my personal goals.

Now, this isn’t the case for everyone. You may find that you do have a realistic grasp of your disease, and that’s an ideal place to be. You know what you need to do to manage it. However, if you haven’t taken the time to assess your illness and abilities, you may have some positive news after your reflection. You may find that you are more capable than you expected.

Assessing Your Wellness

There are times where we are painfully aware of our abilities and limitations. If diagnosed with an extreme form of your chronic illness, like Primary-Progressive or Secondary-Progressive MS, then there is a physical limit to your abilities. There is a clear delineation between what can and cannot be done.

But the majority of the people diagnosed with MS are initially diagnosed with RRMS, around 85%, which is a “milder” form of the disease. There is a range between those who barely feel their MS to those who undiagnosed PPMS or SPMS. And because of this range, it’s hard to be sure of our capabilities. While it might be tempting to do, we should never compare ourselves to others as the manifestation of the disease changes from person-to-person.

Easy to say but hard to do when it’s in our nature to measure ourselves by others. When you have celebrities out there publicly displaying the most extreme aspects of their MS, without providing any context (if they have RRMS, PPMS, or SPMS), it’s hard not to wonder: will that be me someday? Will I need an extreme form of drug therapy? Will I have to shave my head? Will I lose my voice? Will I need an expensive mobility scooter?

How bad will my chronic illness get, and should I be more cautious in how I live to avoid progressing the disease along?

Chances are, you won’t follow the same path as these celebrities, at least not right away. But ask yourself this: is the mental image of my disease, in its current state, matching reality? Am I making decisions on my condition based on what I see others doing, and not what I am capable of doing? Have I removed myself from the equation altogether and not effectively treating my disease?

To restate: do we fall into the trap of pre-maturely disabling ourselves because we have a distorted view of our illness?

I did. For years after getting my diagnosis, I assumed I would be permanently disabled by the time I hit forty. I started to act like I was on the path of disability, discouraging myself from actively treating my disease beyond medication. I had the attitude of “why bother?” for a lot of things in my life. If I had eight more quality years, why commit to something that would take ten years? 

It wasn’t until I committed to becoming a mother did I start to assess my abilities honestly. It took months after Jai’s birth for me to realize my perspective about my illness did not match reality. While I still deal with fatigue, I was not fast-tracked to immobility by forty as I thought. When I realized this was the case, I saw the limitations I kept experiencing surrounding my MS wasn’t from the disease but from me.

It was rather liberating when I came to this realization.

Going into the New Year with a Chronic Illness

Taking the time to assess your chronic illness provides you with the tools to decide how you want to approach the new year. If you’ve wanted to make some goals for yourself, but felt discouraged over whether you can do it or not, take time to assess and test yourself. 

For example, you may accurately assess that you cannot walk very far due to mobility issues. But you’ve always had a goal to walk a mile a day and were reasonably concerned about achieving said goal. Be adaptive, set the goal, and safely work yourself up to walking a mile a day. There will be days where you can achieve your mini-goals and days where you should honor your limitations. It may take you all year to work up to that mile, but what will you learn about yourself in that time?

Two things you will hopefully learn in the year: one, that you aren’t as limited by your illness as you thought. Two, you are more resilient than you might previously give yourself credit. Goals, if they are worth it to you, take time. Try not to feel discouraged if you find it takes longer than expected to reach your goal.

If you assessed your abilities and found yourself more capable than previously thought, like me, then take time to set goals and find your true limitations (in a healthy manner). Honor what your medical professional says, follow their guidelines, and work to break free of any mental blocks you’ve placed on yourself.

You may find that you are better managing your illness because you are allowing yourself to be more aware of what you can and cannot do. The benefits of goal-setting and working towards those goals are numerous and worth doing. 

The key is to take a chance and figure out where you stand in your illness and deciding if you are honest with yourself. Once you’ve done so, you never know what you can achieve in the new year.


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Managing Grief with Chronic Illness

“I know that the ones who love us will miss us.”

Keanu Reeves, on what happens after death

Over the past two weeks, I’ve faced an emotion I haven’t dealt with in years. I’ve written about grief before, in the context of coping with a chronic illness diagnosis, but I haven’t reflected on physically losing someone. Relationships come and go, and we mourn losing our connection to a friend, but when death enters the picture, there is a finality to the whole situation we cannot come back. Living with a chronic illness means a strong emotional episode can trigger an exacerbation. That can set us back days, weeks, or even months.

So how do we manage an emotion like grief? 

It’s difficult, because there’s no right way for each person. There are healthy ways to manage grief and unhealthy ways. With a chronic illness, we must find the healthiest way to manage our grief to protect our wellbeing. What shape that takes depend on ourselves.

My Grief

For now, no one is dead in my life. But I have the opportunity to prepare for the death of a loved one. Death can surprise us, or we can have the grace of a timeline. My cat, Lytton, is undergoing some major health concerns. I’ve had Lytton for over ten years, and he’s a significant presence in my life. While he is eleven, I always assumed I would have more time with him.

With each emergency visit and specialist conversation, we are left with the feeling that the end is coming sooner than expected.

Knowing that one of my sources of emotional comfort and napping buddy may soon pass has thrown me headlong into the grieving cycle. I’ve had to reassess priorities and recognize the impact grief will have on my MS if I am not careful.

What follows are some thoughts I’ve had surrounding death and loss. 

Another Thing Chronic Illness Takes…

Chronic illness takes away our ability to grieve in the manner we wish. We can grieve however we want, without regard to our disease, absolutely. But if we have people who depend on us, or we don’t want to deal with a problematic exacerbation, we must keep one eye open to our health.

We must contain and manage our grief.

I am not suggesting “suck it up” or “get over it,” attitudes. No, grieve as long as needed in the necessary form. But be aware of what you are doing and how it might impact your health. Grief is stressful, and if we allow that stress to overwhelm us, we can make ourselves sick.

In the most profound moments of grief, we often do not care about our health. Nothing matters except the loss. Despite how it feels, the intensest moments of pain will pass, and our lives will return to the new normal without the individual. Should we stop taking care of ourselves during our period of grieving, and that helps intensify an exacerbation, the effects of the flare-up may be lifelong. 

To reframe what I mean through an example (this is for illustrative purposes, it hasn’t happened): I allow myself to get so worked up over Lytton’s death that I get an exacerbation. This leads me to lose function of my leg due to numbness, and I must be hospitalized for intervenous steroids. While I have Relapse-Remitting MS, it doesn’t guarantee my leg functionality goes back to 100%. Instead, I leave the hospital with a permanent 80% functionality of that leg. I can no longer achieve the specific goals I had for myself, and I must adapt my life to a new normal. 

I may grieve for Lytton’s death over several years, but I potentially have at least thirty more years to go beyond that. For the few months of intense emotional grief, by not taking preventative measures to balance my health and despair, I’ve impacted the rest of my life. Additionally, Jai loses his mother while I am in the hospital, and I’ve permanently reduced my ability to interact with him. 

I will probably feel guilty for not taking care of myself, needing to be hospitalized, and the impact of the exacerbation on my overall health. All three stemming from a situation where I could have prevented the flare-up through self-care.

Note: with autoimmune/chronic illness, we cannot prevent our flare-ups. They will happen when they happen. We can, however, take steps to minimize them from occurring. It’s remembering to take these steps while grieving to help prevent or lessen the impact of an exacerbation.

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Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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