TO SLEEP, OR NOT TO SLEEP? That is the freaking question!

Well, I have woken up to another day that I accidentally slept away the majority of. I always feel a mixture of guilt and embarrassment when this happens.

I usually wake up around 5:30am or 6:00am every morning with my dog. We get up, go outside, eat breakfast, and watch a TV show or two. I give myself my Glatiramer Acetate injection and take my meds. It’s a nice relaxing morning routine we are having. The issue is, without fail, by 10am I am so fatigued and exhausted that I can barely keep my eyes open. So I end up taking a nap around that time most days. I try to keep it in the 1-2 hour range so that I don’t sleep too much and disrupt my sleep pattern.

Anyone with insomnia knows how delicate those patterns can be; nap just a little too long, drink one caffeinated drink too many and  BAM! HELLO 3am and wide awake!

I have almost completely cut coffee out of my diet. Originally it was in hopes of combatting my insomnia. But lately I have been thinking about maybe starting to drink one or two cups in the morning just to try to combat that peak in fatigue each day. Does anyone have any tips for fatigue? What have you found to be helpful? I’d love to hear any advice/input!

I didn’t sleep well last night. I had insomnia and laid in bed for about 4 hours before I  worked myself into an anxiety attack, took a Xanax and finally passed out. Lovely, isn’t it. But naturally I still woke up at 7am. By the time 9am rolled around I was falling asleep on the couch…until 3pm…

These sleep problems are tough to figure out. I know that my body does need quite a bit of extra rest due to my Multiple Sclerosis. I also know that severe fatigue is one of my most significant issues relating to MS. It’s hard because part of me says “Don’t let the fatigue control you! Don’t sleep away your life!” and the other part is saying “For the love of god woman, take the freaking nap so we can at least function for the last half of our day!” Usually team nap wins.

One of my worries I’ve developed since I got sick has been that people will think I am lazy. It is so hard to explain this kind of fatigue to those who have never suffered from it. It’s so different from feeling tired or sleepy.

It’s ten-ton bones, muscles made out of silly putty, weights hooked to my eyelids, sick to my stomach, mind consuming, room spinning, body shaking exhaustion.

So on these days when my body takes over I try not to let myself feel too guilty about it. Obviously my body needed the rest, or it would not have slept for that long! I try not to worry that I did something wrong. Even on the days when I am doing nothing I am actually doing something huge. I am fighting a disease. I am surviving a chronic illness.

So yes, I may need to rest more than the average human from time to time. Yes, I am an adult who has regular (and scheduled) naps and yes, even though I am only 25 sometimes I have to miss out on fun stuff because my body physically just can’t do it that day. But that is ok!

I am also a warrior! I am also fighting my own immune system every single day! I am strong, even on my weak days!

-A

New Grill, New Attitude

Big developments in our household this weekend as my husband and I welcomed a brand new baby grill to the family! She is roughly 75 lbs (give or take a few), 61″ long and has a beautiful stainless steel completion.

The proud father of a baby grill (the husband) & Sir Mac N Cheese (the dog)

After a grueling day in the sun my husband finally got the new grill all set up today! We have been looking forward to being able to grill out since we bought our house last fall! So of course we couldn’t wait a moment longer and decided to grill up some sausage and shrimp to have with some red beans and rice tonight!

One of our favorite gluten-free, dairy free “quick” recipes is cooking up a protein of our choice (usually shrimp and some sort of smoked sausage or chicken) and mixing it with some seasoned rice and beans. Delicious, filling and low effort! Those are three things that I often require by the time dinner rolls around.

With MS my energy levels definitely suffer. I need a lot more sleep than the average person. I also have sudden and sometimes severe issues if I push myself too hard and stay up too late/don’t get enough sleep. I have learned not to be ashamed of the fact that I am an adult woman who needs a nap every day. It’s just part of my “new normal”. I need to listen to my body and when it is tired, or hot, or dehydrated or hungry I need to make it a priority to give my body what it is asking for. Which is easier said than done.

Think about all of the times you skipped breakfast because you were running late to work, or stayed up until 2am binge watching Netflix when you know you need to be at an appointment at 9am the next day? How about when you look back at your day and realize that you have barely drank 3 glasses of water let alone the 8+ our bodies need to function fully!

It’s so easy to ignore what our bodies are telling us and put them second to our busy lives, jobs and desires! But we have to remember to thank our bodies and treat them nicely! We only have the one, so be kind to it! Eat those veggies, drink the glass of water and take that nap!

I am noticing that my anxiety levels have gone down quite a bit over the past month or so. It could be a new medication that I started (CBD) that is thought to help with PTSD and the anxiety that comes along with it. It could also be that summer is in full swing so I am getting out of the house more and soaking up a lot of vitamin D! It could be that I am making some progress in my efforts to practice mindfulness and meditation. Personally, I think it is all of them combined!

As much as this diagnosis of Multiple Sclerosis rocked mine and my husbands world, it does feel like the ground is starting to stop shaking. We are learning our new normal and discovering each day the little changes and things that we can do to make our hurdles a little smaller and our daily lives a little more joyful!

We spent the weekend getting some things done around the house (such as giving birth…I mean assembling our new grill), running errands, and enjoying some much-needed relaxation time together.

I learned how to the mow the lawn. I am mildly afraid of the lawn mower and the power that it wields, but I am wildly proud of the finely manicured lawn I produced all on my own!

(minor assistance from husband was required)

So as I sit here as my husband grills up some shrimp, my dog patrols the boarders of our lawn and I gaze out admiring my finely mowed grass I am again touched with gratitude. Gratitude for this lovely little life I call my own! I hope you all have something that tonight you can be grateful for as well!

-A

 

 

 

MS Strong

I’ll remember that phone call most likely all my life.

The one that stabbed into my heart and stuck there like a knife.

I woke up with no feeling in those fingers and my toes,

With no idea what havoc those small symptoms could expose.

 

You see them in the movies, or hear about them in a song,

Those moments when your ‘normal’ ends and the seconds just drag on.

No one can prepare you for that moment, for that day

When you find out that you’re sick, and it will never go away.

 

I first react in fear and panic, in shock and disbelief

Numbly listening to the doctor, my hands shake, why can’t I breathe?

It’s “indicative of MS”, “ok”, “do you know what that means?”

“No, not really.” My voice shakes, my heart is racing, please help me.

 

Multiple Sclerosis is what the doctor then explained.

All I heard was that it was in my spine and also in my brain.

Something in my body wasn’t right, was really wrong.

It’s funny but looking back, it had been that way so long

 

I held myself together, saying “everything’s alright”,

Until I broke down in the shower later on that night.

My husband sat beside me, as we cried there on the floor,

Knowing that from here on out it’d be so different from before.

 

We were right, and things have changed a lot in half a year.

MS has put some things on hold, like having a career.

It’s hard to work when you cannot stay awake

And the slightest change in weather makes your whole body start to ache.

 

But It hasn’t all been bad, these lessons that I’ve learned.

I’m proud of all my bruises and battle scars I’ve earned.

I’ve grown, and I am learning to live in the moment every day,

To connect to life around me, and let my heart show me the way.

 

I married my best friend on a cold night in late November

A night of love and family that we always will remember.

Those around us showed support and an avalanche of love.

Love is something this disease can never get rid of.

 

I faced some of my hardest nights, have felt so vulnerable, so scared,

But I learned that when you learn to ask, someone always will be there.

Some days I feel my weakest, and some days I feel so strong.

Some days the world feels right and some days everything goes wrong.

 

I will continue on this journey, I will continue on his fight.

I will use the gifts I’m given to spread awareness and shine light.

We’ll find a cure and I’ll keep singing my fight song.

Do you feel as good as I do now?

Because this is MS Strong.

The brain is quite amazing…

So my brain feels a bit all over the place today so please pardon if this post seems a little scattered.

This morning I had my appointment with my Neurologist. My husband and I knew that we were going in at this point to discuss treatment options, as my recent MRI had given definitive proof of Relapsing Remitting Multiple Sclerosis. No more CIS for this gal! So we did our research.

Anyone who know’s my husband knows that when he starts a project or gets his mind set on something there isn’t a thing in this world that could stop him. So, he went into research overdrive and scoured, I am fairly certain, every nook and cranny of the National Multiple Sclerosis Society’s database for every FDA approved treatment option out there. Then cross referenced it with whether or not they interacted with my current medications, whether they were ruled out because I was exposed to JC Virus (some MS medications can cause brain disease if you have been previously exposed to this virus), and researched the side affects, effectiveness, and risks of each one. He’s amazing. I hope that every person with a chronic illness is as lucky as I am to have the amazing support and love that I do.

We knew we were going into this with a few major concerns. I wanted a drug that was low risk for birth defects as my husband and I start our married lives together we know that someday (a serious someday people) we want to have kids. So, I didn’t want anything that could cause permanent damage to that whole scenario. I also felt pretty strongly that I wanted the benefits to heavily outweigh the risks. I know that these “safer” treatment options are sometimes less effective, but I don’t want anything that is going to make me more sick that I already am. I don’t know if that’s even a realistic thing, or if it makes sense. But Copaxone seemed like the closest fit for me.

I am nervous to start the treatment, but luckily this drug doesn’t have too many side effects. I just have to get used to injecting myself. But that will come with time. I’m not super afraid of the pain, I can handle that (I have a full side tattoo, so I would hope so at least). So that is where my MS journey is at right now.

I’ve been thinking a lot about mindfulness lately and living in the present moment, really connecting to it. I did a great guided meditation last night before bed and something that the instructor spoke about that really stuck with me was how small a part we are in such a HUGE universe of being. It reminded that all of us are connected. We are connected to the people and energy in our homes, neighborhood, city, state or province, country, continent, the world, the universe, the cosmos. The magnitude of it is almost incomprehensible to the human mind. All of these things are existing and working in perfect harmony to keep us alive and our ecosystem thriving.

When I saw my images from my MRI today I couldn’t help but think of that meditation. Even inside our bodies is this crazy complex system that all works in harmony to keep us alive. And even though the neurologist was showing me the parts of my body that were sick, I could also see all the parts that were strong and working and beautiful. Seriously, if you’ve ever seen an image of the inside of your own body from pelvis to the top of the head you would think it was beautiful too! It just reminded me that although I may be sick, my body and mind are still strong in many other ways. Even though part of my body get’s confused and attacks itself, a bigger part of it works in a cohesive way together… in harmony, every moment of the day to keep me alive. It made me feel grateful towards my body for the first time in a while.

She’s amazing 😉

P.S. Special shout out, again, to the sparrow mom who is now glaring at me from inside my basket of African Daisy’s. Like..I’m sorry you chose to build your nest in my happy place. We gonna hafta share, girl.

-A

When the ball finally drops does it shatter?

If you have read my Who am I? post you know that last November I was diagnosed with Clinically Isolated Syndrome(CIS). The National MS Society states: “CIS refers to a first attack of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system.”

Since that moment my life has changed so much. My husband and I had to make some  decisions to make sure that we were financially and bodily secure in the future, as we had no idea where this disease would take us. We got married with an intimate ceremony in our own home so that I could be covered by his health insurance. We would have gotten married anyways but this really sped things up. (Funny story, when we got married my husband had already ordered the ring a month before and was ACTUALLY planning on proposing that week. Little did he know he’d get the whole ball and chain!) We didn’t know what the future held. We just knew we would stand hand in hand and face it together…no matter what.

It could have been a six months before my next attack, it could have been years, it could have been never. That’s the thing about CIS. It gave me this shred of hope to hold on to that I wasn’t even sure was real or not. My rational brain tried to tell myself that no, most likely it was not real and that it WAS likely that this would not be my first attack. The optimistic, childlike, dreamer in me was still clinging though, clinging to a faint thread of that hope.

Yesterday, I got the results of my second MRI in six months. It wasn’t great. The disease has progressed and I have new lesions in my brain and spinal cord. The MRI showed that one of my previous legions had shrunk (most likely from the two rounds of steroid infusion therapy I had that first couple months) but the rest had stayed unchanged. My neurologist called me to talk about the results so that on Monday at our appointment we can dive right into the treatment options and make some decisions about symptom relief and disease modifying treatment.

I have been clinically diagnosed with Relapsing Remitting Multiple Sclerosis.

At first I took it really well. It’s funny, it was almost a relief that after six months of wondering and hoping and waiting, I finally didn’t have to wait anymore. I knew. That little thread of hope could go away now. And that is ok. I have spent many years feeling sick and not knowing how to describe it to people,  wondering if I was crazy, wondering if what I was feeling was normal, but not knowing how to describe what I felt to people. Now I can put a name to it. A name that I am not ashamed of, but would be lying if I didn’t say I was a little afraid of.

Multiple Sclerosis.

It hasn’t been even twenty-four hours yet but I feel like I have gone through 8,764 emotions. It’s not like hearing this from my doctor was a big shock. I already knew I had CIS from back in November, and honestly expected that the diagnosis would change during the next few years based on the conversations I had with my MS Specialist.

Maybe I wasn’t ready to hear it so soon? Or maybe no matter how prepared you are there is no way to avoid the fear and the sadness that comes with a diagnosis like this. I am afraid of the side affects of the disease modifying treatments that my doctor talked to me about. I am sad for the things I know I am going to miss out on because I am going to be too sick, or too fatigued to attend and will need to put my body first. I am afraid that I won’t be able to be the mother I want to be someday.

And I am mourning. I love the life I have. I am mourning the fact that I am not even twenty-five years old and I definitely  have a disease that I will have for the rest of my life. I didn’t even get 25 years of “normal”.

I know there are plenty of people who will tell me to be grateful it’s not something worse, that I’m not dying, that there are people who are worse off than me. But I feel that I have the right to mourn, to be sad, and to feel bad and scared. At least for a little bit.

But I will get back up. I won’t stay down on the ground where this news yesterday has knocked me on my ass.

I know I am strong. I have fought through scary and tough things before and I have come out the other side a strong woman, with a husband and family I love, a house and dog I wouldn’t trade for the world. My life is by no means “bad”. I love the life I have. Maybe that is why I am sad? Because it’s so unpredictable now, and I’ve never done well with unpredictable.

Not my happiest post yet…but it’s what’s on my mind.

“I don’t need a life that’s normal. That’s way too far away. But something next to normal would be ok. Yeah, something next to normal. That’s the thing I’d like to try. Close enough to normal to get by. You’ll get by. We’ll get by” – Next To Normal, The Broadway Musical

The waiting game.

Multiple Sclerosis has already taught me a few things. Things like:

It’s OK to be tired and need to take a rest. No shame in napping!

It’s OK not to be able to do the things I used to do (like have the full-time job that I loved, even though I might have complained about it while I was working, I never realized how much I would miss my company, work and coworkers until I had to leave)

When I need to go to the bathroom I need to go NOW (come on, I have to be able to laugh about this one, right?)

But a big thing I am learning from MS is to be patient and to live in the present rather than worrying about the future. This is something I am still learning, and expect I will continue to learn through the rest of my life. Mindfulness and being present in the now is something I have worked on in the past with meditation but it has never been more relevant or necessary in my life. With this disease there is no way to predict the future. There are no two patients with MS that have the exact same symptoms. It all depends on where the lesions develop in the brain and spinal cord, what stage of the disease you are at, how your body reacts the treatments and medications. There are SO many things we don’t know about this disease (let alone why/how people even get it).

So I am learning…(let’s be honest, mostly struggling) with just letting go of the “what if’s”. You can’t spend your whole life worrying about the “what if’s” especially if you have a disease as unpredictable as MS. This is a really hard thing for me because anxiety LOVES “what if’s”! What if I progress fast? What if I lose my sight? What if I can’t be the mom I want to be in the future? What if? What if? What if? What if? Sometimes I just need to take a step back – look my anxiety straight in her bossy little face and say “Shut.Up!”.

This is my life and I am learning that I get to control it my anxiety DOES NOT.

So, as I sit here on the deck in the probably too cold to be outside but I am doing it anyways because… Minnesota, weather and write this blog I am actively telling my anxiety to be quiet and to just enjoy this moment. I had an MRI yesterday and will have to wait until Monday morning to meet with my Neurologist and get the results and that is all my brain wants to think of. But what is the point in worrying about something that is going to be the same no matter how much thought I put into it this weekend? Me worrying all weekend is not going to magically make the lesions disappear or my symptoms go away! So as my therapist always says “Why suffer twice?” anxiety makes you suffer before you’re actually in the situation you are worrying about.

So I am making a choice today. I will not worry all weekend about the results of my MRI. What will come will come and I will be strong either way!

So for now, I am going to sit outside and listen to the birds, get some much-needed rest after yesterday’s uber stressful day and be grateful for the now.

-A

P.S. Even though I am not a huge fan of Cesar Millan’s dog training techniques I do love this quote from him:

“Dogs live in the moment. They don’t regret the past or worry about the future. If we can learn to appreciate and focus on what’s happening in the here and now, we’ll experience a richness of living that other members of the animal kingdom enjoy.” – Cesar Millan

 

 

MRI aka: Menacing, roaring, instrument!

So, today was my second MRI in the last six months. I will be honest I was really anxious about this one. Since my diagnosis in November I have started experiencing some new symptoms as well as a few persistent old ones sticking around. My MS Specialist and I decided it would be worth getting some updated scans done so we can make some decisions about starting a medication.

Apparently, back in November I just got a brain and upper spinal MRI (honestly the twenty four hours before/after the diagnosis are a bit of a blur from the emotion of it all) but this time my neurologist wanted to add the full spine as well as the full brain. The nurses warned me that it would be a lot longer than my first MRI and last a little over two hours. I am pretty claustrophobic and really struggle with panic attacks so I went in prepared.

I wore my most comfy sports bra with no metal in it (thank you Victorias Secret!), yoga pants, and a tank top. I meditated as soon as I woke up in the morning (at 5am because my nerves were already in full swing and anxiety LOVES company) and my MRI wasn’t until noon. It helped a bit and I ended up being able to fall back asleep for a little bit. I ended up having horrible nightmares. That is something I want to go into in another post. I have always had extremely vivid dreams and recently have been suffering from some pretty intense nightmares 😦

So after I woke up I did a little light cleaning and got my “happy place” set up for me to come back to after the MRI. This includes:

My lavender scented, weighted blanket (seriously, this thing is like a magic blanket)

A full bottle of water

Harry Potter Hogwarts Mystery all cued up on my ipad

My Himalayan Salt Rock Lamp for a warm healing glow in the room

My favorite pillow, recliner, and some more blankets. I’m kind of a blanket freak…

I was set for the post MRI de-stress so I did another 35 minute meditation to center myself and check in with all the areas of my body I was feeling stress. I use an app called Insight Timer that has thousands of guided meditations for all sorts of situations so I was able to find something that helps to calm yourself while still staying alert and not falling asleep! I really think that helped me for my pre-MRI jitters.

Funny side note: On the drive to the hospital my husband and I passed a middle school and saw bunch of kids doing the “1 mile run” around a field. Remember those things?!? I was HORRIBLE at them…like seriously dreaded them. I turned to my husband and said “That looks so terrible. Honestly I would rather be doing what I am about to do that run a mile right now” You fellow fatigue-ers (that’s not a word, now it is) know what I am talking about!

The MRI started out really well! I took my sedatives prescribed by my doctor, had on a Taylor Swift Pandora station and did a bit of meditation as soon as I got in the machine to calm my nerves and stomach. I felt really relaxed and one of my MS power songs “Fight Song” by Rachel Platten came on so I was really feeling like a badass woman at that point.

But about an hour and fifteen minutes I think the sedatives started to wear off and anxiety started to rear her ugly head again. My head was killing me and I started having a panic attack about the time they gave me the contrast. I knew I was about 3/4 of the way done and REALLY just wanted to get it over with. So I laid there and I cried and tried my hardest not to move. I just didn’t want to hit my panic button and have to start the scan over. I tried to just focus on my breathing and kept reminding myself that this would be over soon…and it was.

When the nurse pulled me out and saw I was crying he was shocked and said that for someone who really didn’t want to be inside that machine I did really well and didn’t move at all. So at least that is something to be proud of. I powered through and even though I was scared I proved to myself that I CAN do it. It might take some tears and a weak moment or two but I WILL get through this.

I wish anyone who is dealing with medical procedures today peace, good vibes and relaxation.

We are all in this together and we have a support system in each other.

 

 

Let’s talk about ANXIETY

Anxiety is something I have struggled with long before my diagnosis of MS. I was lucky to have a mom who noticed the symptoms and could see I was suffering even when I was as young as fourteen. My anxiety began to manifest when I as in middle school in the form of hypochondria. I was ALWAYS afraid of getting sick. I’m talking no sharing food/drinks, constantly washing hands, sanitizing my toys, and barricading myself in my room when one of siblings got sick. Growing up, my bedroom was the guest bedroom (I was the lucky kid who got the queen sized bed in her room, but that also came with cost of giving up my room when extended family from out of town came to visit). I can remember just crying with fear every time I knew someone else would be sleeping in my room because HOW in god’s green earth was I going to GET RID OF ALL THOSE GERMS!?!

I saw a doctor and we talked about what I was experiencing and I was put on an anxiety medication and things got a lot better for a while! Unfortunately when I was in high school I experienced abuse from an older boy and almost lost myself to his dark influence and hurtful behavior. Luckily, (again!) I have some pretty rad parents who devoted their lives to making sure I got away from him and found a place where I was happy and safe (as happy as kid can be when going through that kind of abuse at the ripe young age of fifteen) and have since been getting the mental health treatment I needed.

About a year ago my anxiety got much, much worse than it ever had been. I had recently moved back to Minnesota from Chicago and was not adjusting well. My (then) boyfriend (now) husband and I decided it was time for me to start seeking regular mental health treatment again. I was diagnosed with PTSD from sexual and emotional trauma, Generalized Anxiety Disorder, and Panic Attack disorder. I have been working with a wonderful psychiatrist who has helped me find meds that work for me and is helping me find techniques to deal with my frequent panic attacks.

Then November came…and along with it my diagnosis of Multiple Sclerosis. My anxiety has gone through the roof. It’s almost like the diagnosis snapped me back to being a child again. I have started feeling that familiar and horrible overwhelming feeling of being afraid of everything that could make me sick. Ironic isn’t it? The hypochondriac child gets sick as an adult with something you can’t get better from?

How does your anxiety manifest itself? Since my diagnosis I have been experiencing a whirlwind of emotions but anxiety and fear are definitely in the forefront. At first I was having severe panic attacks on almost a daily basis (I am now down to one or two a week- THANK YOU MEDITATION and Xanax for during the worst of the attacks). I’ve noticed that my anxiety manifests in nausea, vomiting, scratching, Insomnia, rapid obsessive thoughts, racing heart, flushing, shortness of breath, sudden feelings of intense doom aaaaand cue panic attack…

What do you guys do to help with your anxiety? Besides seeking help from a medical  professional ( we need to take our mental health just as seriously as our physical health and that means there is NO SHAME in going to a mental health provider. You wouldn’t be ashamed to go to the doctor if you got pneumonia? Right!?!)

I am currently seeing my psychiatrist for medication management and a phycologist specializing in helping those diagnosed with chronic or terminal illness. Both of these people have helped me TREMENDOUSLY in understanding and accepting my anxiety and how to get control of it rather than letting it control me. I still have a lot of work to go though.

My go to home remedies for when I am having a challenging day are:

• Walks with my dog (seriously I swear he can tell when I am having a rough day)
• Meditation and Mindfullness exercises
• Drinking calming Herbal Tea
• Use of calming essential oils like Lavender
• Taking a nap (sometimes when I am over fatigued my anxiety takes that as a chance to rear her ugly head)
• Cleaning and organizing my house (I have no idea why it helps but it does)
• Listening to music. It can be calming music or just my favorite uplifting playlist.
• Writing this blog! It’s actually one of the big reason I started this blog. I have always loved a creative resource!

So people…give it to me! I want to hear what you find empowering, comforting and helpful when anxiety gets the best of you!

-A

 

The fatigue is real…

Ever since my diagnosis of Multiple Sclerosis this past fall one thing that I have learned is that with MS you don’t just “get tired”. You get fatigued. I’m not talking normal every day fatigue either. I’m talking ” I just moved my entire life’s belongings from one apartment to another…alone” type fatigue. (…yes….I did do that when I lived in Chicago…twice).

This fatigue can hit at any time. For me I pretty much always feel it. I’ve been feeling it for a long time now. It was one of the major red flags that something was off in my body. When you start sleeping 18 hours a day and still wanting a nap during the other six it’s time to get checked out. Some days I feel it less than others. Some days I feel like I could hike a mountain or dance for hours, and other days I feel like I am fighting with my entire body just to get out of bed.

It’s definitely one of the hardest parts of this disease for me. It’s unpredictable (just like everything with MS) and it makes it hard for me to commit to things in advance. I hate the familiar ache in my heart when I text or call a family member or friend to tell them I need to cancel plans…again. It hurts my heart when I can’t attend things I have been looking forward to for weeks. And it freaking sucks to miss out on all of the fun things I could have done if I hadn’t been so fatigued from this disease.

I am lucky to have a supportive husband and a tight knit group of family and friends that are very understanding and supportive of me and my fight with MS. But, I know it hurts them too when they get that last minute text asking to reschedule.

I am learning to come to terms with my “new normal”. I am learning that it is OK to put myself and my health first. I am learning that there is nothing to be ashamed of when I need to nap or rest my body. I am learning that when I push myself too hard one day, I will pay for it in the next few. I am learning that the people who love me understand and do not judge, I am learning to to LISTEN to my body when she tells me that we need a break. I am learning.

P.S. pictured is my dog and nap partner Sir Mac N Cheese