A Return & Refocus

I spent the last month prepping and figuring out how to manage our new life in self-quarantine. Learning to adjust with a new normal? Something I’m used to with a Chronic Illness. I got this.

So far, we stayed safe and healthy. We are minimizing travel away from home as much as possible. I’ve reduced our movements more and more, stretching out the time between grocery store trips. 

I am currently going on Day 8 since the last store trip. I am hoping to make it to at least April 20 before needing to go back out again. We’re even minimizing deliveries from major online retailers.

It hasn’t been easy, and because of needing to make adjustments, it took me a while to settle into a new routine that included blog writing. I am hoping that I will be able to blog more frequently now that I have 1: more time and 2: more time.

Keeping Busy in a Pandemic

Keeping busy and focused at this time helps. I’ve taken advantage of the time to work on a couple of my goals for 2020. Back in December, I wanted to figure out a better daily schedule for myself. I’ve talked about finding workable time-management strategies before, and now was the time to hone it.

I understand that this is a unique situation. The daily schedule I set up for myself may not be feasible once we start getting back to it, but maybe if I do it long enough, I will find a way to adjust when things return to normal.

What I did was this: create a color-coordinated block schedule for myself, detailing all the different tasks I wanted to each day of the week. Have I stuck with it 100%? No. But I do try to stick to it as much as possible and be gentle when I get taken away to do a different task. That is key, and this schedule is a guideline to help keep me focused, not something to stress me out.

I also settled on a weekly to-do list. Pulled from Day Designer (not a sponsored link), I make adjustments to the Weekly Planner design every Monday and use that sheet for the whole week. I put down to-do items for the appropriate day as I think about them and then work off of that list for the day.

I find that this keeps me super productive throughout the week. When I feel productive, I feel better, mentally, and emotionally. I still have my moments where I feel particularly stressed over everything. Still, I do feel like I am making the best of the current situation. 

Going with the Flow

If the global slowdown reinforced anything with me, it’s the need to go with the flow. I was unable to focus on my writing during the last month as I prepped my family, managed my health, and figured out what we needed during this time. I decided that I was okay with this because I had to be. My health and my family comes first, and if it meant temporarily sacrificing something, then I would do it

I could either fight what was going on, or I could keep moving forward.

Fighting would mean more stress and frustration. Plus, what is there to fight? My favorite restaurant cannot do dine-in, so why be mad at them? Holding onto that anger of the injustice of it does me no good and only increases my stress. 

When I accept that I am not able to go where I want to go, run with who I want to run with, and do things as I usually do, I feel a less intense emotional pull. 

Yes, this is a frustrating situation. Yes, having feelings of anger are entirely valid and reasonable. But holding onto those feelings without providing a productive outlet only serves to poison me, not help me. Accepting that I have no control over this situation grants me a modicum of control. 

Best Laid Plans…

As a general blog policy, I like to have a theme for the year and sub-themes for each month. It keeps me focused, but allows me to explore different facets of each topic. I had ideas for balance and harmony in 2020, but when the pandemic hit, all was cast aside. I couldn’t focus on themes, research, and writing while preparing.

Now that I’ve found my stride, I still can’t. Not because I don’t want to, but it doesn’t seem appropriate. How can I write about balance and harmony when the whole world, without hyperbole, is out of balance? It looks rather privileged and lacking self-awareness.

So I’ve had to take a step back, for the time being, scrap my original plans and refocus for the next few months.

A Temporary Refocus

For the next few months, I am going to go without a theme. Instead, I am going to be writing about what I am thinking, feeling, and doing at this time. Both as a parent and as a person with a Chronic Illness. I am going to maintain my general position: self-care, self-compassion, and focusing on health.

I am not going to hide from what is going on, but rather embrace it. Some posts will be directly related to the pandemic, and other posts will be pandemic adjacent. As I said above, it’s essential to go with the flow, which is what I will be doing for the time being.

I hope you all are staying safe and healthy at this time and that you do what’s best for you to maintain your mental and emotional health.

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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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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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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Book Review: Self-Compassion

Almost a year ago I recognized I needed to change the relationship I had with myself.

I had a lot of negative emotions with no healthy outlet other than taking it out on myself. I searched online and through my subscription to Audible, I found several books to listen to while I was taking care of Jai.

That’s when I stumbled upon Dr. Kristen Neff’s book Self-Compassion. It was the first book I listened to it because the description spoke to me: finding a way to cope with the debilitating self-criticism I experienced every day. I listened to the book on my way to-and-from therapy, finding that it helped deepen each session.

Since first listening, or “reading” the book, I have found a marked difference in my demeanor and how I respond to negative feelings for myself and even for others. I’ve talked an awful lot about this book throughout my blog, so it was time that I sat down and actually reviewed the book.


What follows is my review of a book I chose on my own. I did not receive any compensation for this review.


Book Information

Title: Self-Compassion, The Prove Power of Being Kind to Yourself
Author: Kristen Neff, Ph.D
Date Published: 2011
Publisher: William Marrow
Pages: 305
Genre: Self-Help
Goodreads Links
Amazon Link (non-affiliate)
Official Book Website


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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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