My husband kindly tries to get our daughter to let him be the one to help her and he even goes so far as to put on a sweatshirt.

Alas, it’s no use. She snuggles up to my side (I’m currently sleeping with a wedge pillow because pregnancy has given me a wicked case of heartburn. So she is practically sitting up completely in order to be by me).

“Do you need to go potty?” I ask her this, as we always do, and she gives the usual response.

“No.”

So I lead her back to bed, lay on the mat we put on her floor, and hope she will fall asleep soon. She plops onto the mat by me and scoots so close that her face is in my face.

I open my eyes to check if there’s progress towards sleep, and she beams at me.

This happens night after night after night. In the past month, I believe we’ve had 1 uninterrupted night of sleep.

When you have a chronic illness, you NEED sleep. When you’re pregnant, you NEED sleep. Conclusion? I NEED SLEEP.

But I have also chosen to be a mom, and that comes with sacrifices.

The question is, where does sacrifice end and self-neglect begin?

I propose that rather than determining exactly where we are on that spectrum, we should instead focus on what we can control:

Taking care of ourselves!

So my night sleep is interrupted. I can take a nap the next day. (no, it REALLY doesn’t make up for it. But I can’t control if my daughter wakes up or not, and I CAN control if I take a nap).

I had extra chores and errands, and am exhausted. I can sit on the couch and play “tired mom games” with my daughter.

Things like this, taking control of what we can actually control, brings us a greater feeling of confidence and independence.

If instead I refuse to take a nap and spend that time muttering about my bad night of sleep, or I resent my daughter for wanting to play with me and can’t enjoy a moment of it, that brings my overall wellness and quality of life down. I’ve included the serenity prayer below because it perfectly illustrates what I’m talking about.

CHOOSE to take better care of yourself in the small, seemingly insignificant moments.

I have two handouts and a free e-book that help simplify different ways to take care of yourself.

If you need help improving your sleep, click here.

If you want some simplification tips on meal prep, click here.

If you want a free ebook detailing how to reach a more peaceful life, click here.

The post Take Back Control of Your Life For More Joy first appeared on MS and Mo.

For me, vertigo has been an off and on experience. From moments of one split second where the world is spinning to other times when any movement made me throw up.

My first experience with vertigo was the worst time. It was in 2015 during my initial diagnosis. I had just gotten out of the shower when suddenly the world was spinning. I fell to the floor and yelled for my roommate to help me. There was a grocery bag nearby and I threw up into it and stayed on the floor.

For the next 16 hours I threw up each time I moved, but still managed to make it to the couch downstairs. While resting on the couch I kept my eyes closed most of the time while the world continued spinning.

Since that time I have only experienced moments where it feels like my eyes are rolling in their sockets or that I’m standing on a boat during a storm. It lasts no longer than 1 or 2 seconds.

Coping Tips

• Stillness: Holding still is a helpful thing when everything else seems to be roiling around you.
• Breathing through your nose: Vertigo often makes you nauseous, so breathing slowly through your nose keeps you from stimulating your gag reflex.
• Darkness: Reducing the amount of sensory stimulation you’re experiencing can help to reduce the impact vertigo has on you.
• Something cold: Holding something cold gives you something to focus on other than what you’re feeling. Without needing your eyes open!

Vertigo is nasty and difficult. Try some of my tips, check these ones out, or if you have some that work for you please comment and share them (:

The post Dealing With Vertigo While Managing Your Illness first appeared on MS and Mo.

I have seen people with MS post on forums about how hesitant they are to bring up their issues with their doctor because it’s an uncomfortable topic. Let’s be honest.

It’s embarrassing!

No one wants to admit they pooped their pants. Or that they had to rush to the bathroom to urinate 5 times during their 1 hour work meeting.

Especially to someone that you only see every 6 month or less.

So these types of disruptive symptoms go untreated and leave people feeling isolated.

The best thing you can do though, is talk about it.

Because I talked about my embarrassing symptoms, I got a scope done of my throat and stomach and they discovered I had acid from my intestines backing up into my stomach.

Because I talked about my embarrassing symptoms, I was sent to pelvic floor physical therapy and strengthened muscles I didn’t even know existed.

I don’t need to share all of my horror stories to get the point across that courage to share with your doctor about ALL of your symptoms can and will help you to get the treatment you need.

So buckle up buttercup. Be brave and ask for solutions.

The post Two Symptoms People Avoid Mentioning first appeared on MS and Mo.

Clinical Depression is on the rampage. In fact, of people with autoimmune diseases 50% have depression or anxiety! 50! Depression has also markedly increased among the general population in the wake of the COVID 19 pandemic getting up to 29% prevalence.

What is it?

The Webster’s Dictionary defines depression as:

“a serious medical condition in which a person feels very sad, hopeless, and unimportant and often is unable to live in a normal way.”

While that definition is okay, it doesn’t quite grasp the wide reach depression can have on all aspects of life and behavior.

To define depression I prefer to look at what symptoms people may experience when dealing with clinical depression.

Common Symptoms

• feeling sad, irritable, on edge, angry, or numb
• passivity and loss of interest in activities
• appetite/weight changes (this could be eating more than usual OR eating less than usual)
• sleep changes (increased or decreased levels of sleep as well as difficulty falling or staying asleep)
• decrease in energy levels, lethargy
• ongoing feelings of worthlessness and guilt
• difficulty making decisions
• thoughts of death or suicide or harmful behaviors (If you are currently struggling with suicidal thoughts or behaviors please call the suicide hotline at 988. You are not alone, I believe in you.)

If you experience depression you may feel all of these things, have a few, or face things I haven’t even included on the list.

Clinically speaking, you must have these things for at least 2 weeks before being diagnosed.

My Experience

Depression is something that I have dealt with for most of my life. In high school I found myself often feeling alone even amidst many friends and family.

I was diagnosed my first year of college after a particularly bad few months involving compulsive movie/TV watching, weight gain, and very low mood.

In Multiple Sclerosis, the autoimmune disease I have, there is a 40% prevalence of depression amongst patients. One reason for this is because it’s difficult to accept that you have a crippling disease. The bigger reason is that damage to your brain causes depressive symptoms. This is something shown by traumatic brain injuries.

Help

There ARE things that will help. In my experience it is a constant battle, but one that is worth fighting. Here are some things that have helped me.

• CBT (Cognitive Behavioral Therapy): Therapy of any kind is often helpful
• Medication
• Exercise
• A healthy diet
• EMDR (Eye Movement Desensitization and Reprocessing)
• Meditation
• Blue light therapy

There are many other things out there that can be beneficial, but there are also things that can be harmful. Any kind of numbing behavior be it drugs, alcohol, food, or media worsens depression in the long run.

If you are struggling and need a listening ear or help finding a good therapist I am here for you. Reach out to me at msandmo123@gmail.com and I will get back to you as soon as I can.

The post Depression Does Not Mean There is No Hope first appeared on MS and Mo.

My first memory of nausea goes back to my 4th grade year. We had an amazing field trip called “The Rendezvous.” We spent time in the classroom learning about mountain men and trading posts. The field trip involved dressing up like mountain men and bringing items to trade at the “trading posts.” 

I was so excited the day before. I invited a friend over and we made some things to trade and I made myself duct tape moccasins to wear. 

Soon after my friend left I started to feel nauseous. I was able to sleep, but woke up early to throw up. This was the sickest I could remember being. 

I was devastated. 

And even now, 20 years later, I am still disappointed that I missed the Rendezvous. 

I have had many other moments with nausea, but it became a new creature in 2015. Within the 6 months between being diagnosed with MS and prescribed Tysabri (the intravenous medication that I’m still taking), I experienced the nausea that comes from vertigo. It was constant, and closing my eyes brought me the closest to a feeling of relief. 

Since that experience I have had nausea off and on. Mostly due to unknown MS causes.

Causes

With that being said, there are a few common causes of nausea for me.

1. Food I eat
2. Vertigo
3. Lack of sleep: Including late nights or early mornings
4.  Unknown MS stuff: pretty generic, but true

Helps

Here are the things I’ve learned that help me manage when I am nauseous. 

1. Dry salty foods (white corn tortilla chips are my favorite)
2. Sipping beverages (water or sprite)
3. Breath work (sipping air, just like the beverages)
4. Stillness (being horizontal is helpful for me)
5. Distraction (I like movies, books, and phone solitaire)

Here are some additional do’s and don’ts for nausea.

Poem: Nausea, written by me.

Nasty

Abdominal

Uncomfortable

Sick

Extreme

Awful

The post Nausea. Start with a story, end with a poem first appeared on MS and Mo.

The things I share today are from the view of the person who is sick or needing a caregiver. There are a lot of other resources for the actual caregiver like this, this, this, and this. There are not as many resources for what the caregivee (probably not a real word) can do to help. 

The things I will specifically mention are accepting the help, expressing gratitude, and encouraging them (the caregiver) to do things for themselves.

Accept the Help

It’s difficult to not be able to do everything yourself. It’s frustrating, annoying, and inconvenient. The truth is that there is nothing you can do about needing help. 

Firstly, all human beings need help. Secondly, as a chronically sick individual we WILL need more help. When I try to fight against being assisted it not only creates a lot of tension, but also makes the helper feel like helping you is a bad thing to be doing. 

Expressing gratitude

Saying thank you is a small way to improve relationships and it has health benefits as well! Some of these health benefits are a decrease in depression/anxiety, increasing heart health, and improvement of sleep. (source) 

Ways to practice gratitude: Verbally say thank you and write notes. You can also write in a gratitude journal, but that’s more for you than your caregiver.

Encourage time away

It’s vital for caregivers to get time to do things for themselves. If they pour themselves into the duties of taking care of someone and never allow breaks they can end up with “caregiver fatigue.” (source)

Once someone has entered the caregiver burnout stage it is more difficult and takes more time to recover than if they did things to take care of themselves all along.

Recognize that this point is to ENCOURAGE them to take time away. You can’t force anyone to take care of themselves or to do things in general.

Conclusion

These are things you can recommend anyone (including yourself) do. As I’ve made an effort to express gratitude, accept help, and encourage my husband to do things for himself I’ve noticed he is happier. Him being happier makes me happy too!

The post Caring for Your Caregiver first appeared on MS and Mo.

What I DO know is that sleep is so important. 

Here are some of the benefits of sleep:

• reduced stress
• clear mind
• Improved mood
• Get sick less often
• Maintain a healthy weight

(source)

Here are some of the negative effects of not getting enough sleep:

• Chronic health problems such as diabetes, obesity, depression, and heart disease
• Memory issues
• High blood pressure
• Poor balance
• Irritability

(source)

Sleep issues are common with Multiple Sclerosis and though there are many causes I am going to focus on three that have impacted me: Insomnia, Sleep Apnea, and Restless Leg Syndrome.

Insomnia

Insomnia can be both a struggle to fall asleep and difficulty staying asleep. I have experienced both. Each time I have an MS relapse, or active damage occurring in my brain or spinal cord, I struggle with sleep. There have been times when I have lain in bed for 2 hours trying to fall asleep.

If you’ve read my medical trauma post you’ll already know that I have a thing about counting. When I’m in bed and not falling asleep I will count down backwards from 1,000. I usually don’t make it past 500 without falling asleep, but I HAVE made it all the way to 0. In the past I would do this counting, then get up if I made it to 0. I have since learned some better sleep hygiene and know that it isn’t beneficial to lay in bed for that long without sleeping. Nowadays, I am taking medication that makes me drowsy and I rarely struggle to fall asleep.

Sleep Apnea

Sleep Apnea is an illness in which you stop breathing multiple times throughout the night. There are a few different types of sleep apnea. Obstructive Sleep Apnea is the most common and involves collapse of your airway while sleeping. There is also Central Sleep Apnea which is when your brain either doesn’t tell your body to breathe, or the signal gets lost somewhere along the way.

I was diagnosed with both types of sleep apnea and was spending 40% of the night not breathing. Since having a baby almost 3 years ago I have had horrendous fatigue (see here for more detail about my experience with fatigue).

I was prescribed the use of a machine called an Adaptive Servo-Ventilator (ASV). This machine provides air pressure to assist my body in breathing. The difference between an ASV and a CPAP (Continuous Positive Airway Pressure) is that while a CPAP provides a constant level of air pressure, an ASV can vary in the amount of air pressure depending on when you stop breathing. A CPAP is primarily used to help keep the body’s airways open, while the ASV needs to increase pressure at times to stimulate the lungs to breathe when they are not receiving a signal from the brain.

Restless Leg Syndrome

Lastly, Restless Leg Syndrome (RLS). This is a disorder in which an agitating sensation is felt in the legs and only leg movement can relieve this sensation. Contrary to what the name indicates, you can actually experience RLS in other parts of your body as well. Most frequently I have experienced this in my arms when trying to fall asleep. I’ve tried progressive muscle relaxation, push-ups, and plenty of tears with my only successful method of dealing with this being to pray and take a shower to help me relax. 

If anyone has a good method to deal with any of these common sleep ailments PLEASE comment below and share your wisdom. 

Sleep Hygiene Tips

Here are a few things I have found that help me get better sleep.

• Put electronics away at least 30 minutes before bed
• Have a pen and paper by my bed to write things down that I need to remember for the next day
• Plan an actual bedtime and stick to it consistently
• Plan an actual wake time and stick to it consistently
• Get some sort of physical activity during the day

I challenge you to try something new to improve your sleep and comment below to let me know what you’re going to try.

Good night, sleep tight.

The post The Trouble with Sleeping first appeared on MS and Mo.

I like to describe the fatigue I feel in a couple ways.

• I’m carrying a heavy backpack on my shoulders and feel a magnified drag from gravity.
• I’m slogging through deep mud and each movement requires extra effort due to the large amount of resistance. Then of course there’s option 3.
• Feeling like you were run over by a truck. There aren’t very many people who can relate to that one. Honestly, I don’t know what that even feels like but I imagine it feels something like how I feel when I’m at maximum fatigue.

Fatigue is more than just a tired feeling.  It doesn’t always go away from simply resting or taking a nap. Sometimes it doesn’t go away EVER.

So when you’re fatigued, or even really tired, how can you continue to be the mom you want to be? How can you show up for the day and do things in a way that you can be proud of? But to go deeper, how can I be a sufficient enough mom that my kid will still be alive at the end of the day and grow up psychologically unmarred? Because let’s be honest, when you’re fatigued you don’t think much about being a “gold star” mom except to feel guilty about your failings.

When I am fatigued I frequently feel disappointed by my lack of “accomplishments” during the day. But these are the days where we especially need to look for the small wins. Cereal for breakfast feeds the kids and keeps them alive. Television entertains without momma needing to run around. 

But cereal has too much sugar and TV turns a child’s brain into mush! This is where we practice taking the center road. Some cereal won’t ruin your child. Some TV won’t immediately transform a kid’s brain. Balance is needed, of course, but allowing mom guilt to stop you from utilizing some valuable tools is something that’s gotta stop.

1- Meal prep

Meal schedules are amazing, time and cognitive energy saving things. Canva has cute meal scheduling templates that you can find at this link . Or you can use a whiteboard like this one. I haven’t used either of these, but I do have a different whiteboard that is similar and has worked well for me. 

I have a 2-year old, and having a meal plan has saved me from pulling my hair out at meal times. Having a plan doesn’t mean your toddler will eat what you’re offering though. In fact, the way things are at my house right now I frequently make multiple offerings just to have them rejected. This is so incredibly frustrating, but I will save this topic for another day.

Meal planning is great, but on fatigued days you might not have the energy it would take to make what you already have on the schedule. This is where self-kindness and flexibility come in! 

So throw out the meal schedule when you don’t have it in you! Instead pull out some low-energy meals that you have around just for days like this. Things like frozen pizza and bagged salad. A box of mac-and-cheese and chicken nuggets. Maybe you let yourself buy SLICED cheese because you know your kids will eat it, and you can anticipate being too overwhelmed or fatigued to cut it yourself.

2- Tired Mom games

Kids can have a hard time understanding why mom won’t play the way she usually does. In fact, you can almost count on them being frustrated and to feel pressure to do more than you can or should.

I have tried explaining patiently and repeatedly, just saying “Not right now,” and having my husband interject himself in my place. None of that has worked for me. 

What HAS worked is initiating a number of special games that allow momma to be still while the child burns a little energy. Here are some of my favorites:

• What’s on my bum? { Lay on your stomach and have your kid put something on your bum. You then have to guess what it is. https://cupofjo.com/2019/03/18/games-to-play-while-lying-down/ }
• Bring me something….(insert color of choice)
• Read-athon
• Ninja training (lay down and close your eyes while the kids have to try to walk quietly by you without you noticing)
• Show me how you … (jump, run, dance, etc) film it and show them the video.

3- Self-care

When you’re fatigued and everything is harder than it usually is, it’s imperative to take care of yourself. This could mean doing a hobby, taking a nap, exercising, etc. Something you enjoy that benefits you in the long run. 

For example, although it’s enjoyable, eating a half-gallon of ice cream doesn’t count as self-care because you will likely feel worse afterwards. 

Here’s a list of things I like to do for self-care:

• Take a bubble bath
• Sit in the swing outside
• Watch a video of someone singing well
• Read a book
• Go on a walk

It might take some experimenting to figure out what works for you. But I promise it’s worth it and you will reap the benefits from taking care of yourself.

The post How to mom when you’re dead tired first appeared on MS and Mo.

As my favorite Youtube yogi, Adrienne says, “Take a comfortable seat of your choice.”

Let’s begin.

I have been considering telling you a story that takes you through an elaborate and bizarre scenario to illustrate the odd sensations you might have with MS. It was a bit extreme on the spectrum of oddness. The next paragraph shows a sample of what I was originally considering.

You feel tired. You are wearing heavy ankle and wrist weights that are a little too tight. As you try to stand up from the couch it takes a few tries to keep a box of plates balanced on your head while also maintaining eye contact with a spot on the floor to help your eyes stop wandering out of focus.

Instead of that, I will take you through the five senses one at a time and elaborate upon the symptoms in said category. Before starting I must quickly say that with MS nothing is A+B=C. There are so many factors at play that it’s extremely difficult to whittle down one specific “cause” for any symptom.

1. Sight

Vision changes are a signature sign of MS. My experience has taught me that if my vision changes I either need to cool my body down, get more sleep, or am having a relapse. That being said, it could also be a result of overexertion or a sign of infection. Some of the visual changes I have experienced are double vision, optic neuritis (inflammation of the optic nerve resulting in pain behind the eyes), blurry vision, difficulty switching focus from something close to something far, visual vertigo (turning your eyes to look at something and feeling like the room is moving+dizziness), sensitivity to light, and black spots.

2. Sound

I occasionally experience ringing in my ears, but thankfully it goes away. There are random times it feels like one ear isn’t picking up sound waves while the other ear still is. In general, I don’t hear as well as I used to. I frequently need to ask people to repeat what they’re saying, and sometimes with my husband I have to just repeat what he says because my brain seems to be moving slower than sound travels.

3. Smell

There are times I cannot smell things, but more often I tend to have a super sniffer. Although, if my toddler’s diaper was poopy as many times as my nose told me it was, we would be in trouble. I smell “phantom smells” that aren’t there. If I smell something that I can’t immediately identify my brain informs me that it is something random, usually an unpleasant smell like dog poop.

4. Taste

MS rarely affects my taste, but when it does things take on a bitter undertone.

5. Touch

Numbness, tingling, phantom vibration, muscle twitching, headaches, aching joints/muscles, sharp pain, throbbing pain, tightness, etc. This is one of the senses that is always being affected these days. My toes maintain partial numbness. There was one time I microwaved a rice bag to put in the foot of my bed to warm it up. It was extremely hot, but when I got in bed it felt soothing on my toes. The next day I found an angry red burn and blister on my toes.

“Our bodies have five senses: touch, smell, taste, sight, hearing. But not to be overlooked are the senses of our souls: intuition, peace, foresight, trust, empathy.”

C. JoyBell C.

We all have physical senses, but like the aforementioned quote these are not the only senses we have.

My physical sensations are sometimes strange but that has not eliminated my ability to feel peace. I experience discomfort and that has led me to have greater empathy for others. We all have distress, pain, and weakness. Do you allow these sensations to shrink your world or expand it? Will you use your difficult experiences to relate to, and better understand others?

The post The Sensory Experience first appeared on MS and Mo.

I am not being pessimistic, unrealistic, or dramatic.

We change over time, and having Multiple Sclerosis has been forcing my abilities and life to change more quickly. This is my reality.

Something I have found that allows me to be more flexible with myself is the idea of brain damage. Technically speaking, I have nerve damage-NOT brain damage.

But when I think of the disease itself it helps me when I think of the damage it is causing as brain damage.

Suddenly, if I am extra tired one day it’s not because I’m lazy or undisciplined, but because I have literal damage inside my head.

If I trip for the billionth time over my own feet or hit my head on the chandelier again it isn’t because I’m clumsy. It’s because my brain can’t communicate effectively with the rest of my body due to the injury it has.

Sometimes we need to change the definitions in our lives to be able to utilize and recognize self-compassion.

“I am so impulsive,” changes to “the damage in my brain has affected some of my ability to use reason.”

“I spend too much time on the couch,” changes to “my body must be extra tired today trying to overcome the deficit caused by the injuries to my brain.”

I can push myself to be better while still having compassion and understanding of my limitations.

Check your definitions. Is there a way you can re-word something to treat yourself with a little more flexibility and kindness?

The post I Have Brain Damage first appeared on MS and Mo.