The Spoon Theory

Most likely if you, or a loved one is living with an autoimmune disease you have heard of the “Spoon Theory”. When I was first diagnosed I came across this theory when I was working to educate myself about Multiple Sclerosis. People living with an autoimmune disease experience high levels of fatigue. Unlike normal tiredness, this fatigue is all-consuming and cannot be warded off with a simple cup of coffee or a quick nap. It is bone aching, lead eyelids, energy sucking exhaustion. When fatigue hits we really don’t have any other option than to rest. It’s not a suggestion from our bodies, it’s a demand.

The spoon theory was created by Christine Miserandino in an essay she wrote in 2003. She used spoons as a physical representation of the amount of energy we have available to us to complete activities in our daily lives.

Imagine that you only had 12 spoons, that’s what people with MS get. 12 spoons to get you through your whole day. Waking up costs you one spoon, showering is two, getting dressed is two, eating is one. That’s half of your spoons gone before you have even walked out the door in the morning!

That is why people living with chronic or autoimmune diseases need to plan their activities carefully. Prioritize things that need to get done for early in the day in case we run out of spoons by 1pm. That is why it makes working full-time hard for many people. That is why sometimes we have to put rest first.

Spoons can be replenished by getting a full night’s sleep. The caveat here is that many people living with autoimmune diseases suffer from sleep issues such as insomnia or pain that keeps them from getting a good night’s sleep. This can cause us to go even further in the hole with our spoons! We can borrow spoons from future days if needed but those spoons will eventually need to be replaced by taking rest days. That is why it is important, I am learning, to make sure I plan a couple of days of “nothing” after any big events or holiday weekends.

So when I say I am low on spoons, now you know I’m not just begging you for free silverware!…but maybe a nap…

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-A

Am I out of the woods yet?

Summer is officially in full swing and I feel like I am on the up and up! I am finally starting to feel better after what felt like a month-long bout of the flu! In actuality, it is likely that I was experiencing some initial side effects from my Glatiramer Acetate injections.

I am now a little over a month into the injections and I am feeling truly blessed that some of my pain and fatigue has eased up! It’s perfect timing because my husband and I are about to get started on a busy summer of weddings, our own wedding planning, and summer road trips!

I am still having a little anxiety about how unpredictable MS is. I worry that I will have a sudden flare up on a day with an important event or during a trip! The “what if’s” that come along with this disease are exhausting.

What I need to do is stop worrying about the future and just enjoy my now! In the words of another one of my favorite wizards;

“My philosophy is that worrying means you suffer twice.” – Newt Scamander, Fantastic Beasts And Where To Find Them

As summer has started to heat up and I get ready for more and more outdoor activities and plans I have really been interested in getting a cooling vest. Heat is one of the most difficult triggers for my MS. Just twenty minutes outside on a 75-80+ degree day and my fatigue spikes exponentially. I get nauseous, dizzy, and weak. It really doesn’t take much exposure to the heat to leave me feeling like a rag doll with the stomach flu.

Usually my symptoms subside very quickly after cooling myself back down to a normal body temperature. So far I do that by seeking out air conditioning, drinking lots of water and using a cool neck wrap (one of those things that you put in the freezer).

The issue I am running into is that sometimes I want to go to a party or concert or wedding and not being rocking an ever so fashionable ice pack around my neck…I mean I’m all for accessorizing…but maybe not with that.

I have read a few blogs and lots of reviews about cooling vests made specifically for people with MS that can go under your clothes. I want one!!! I am looking into insurance coverage for one of the Thermacool under the clothing vests.

It makes me so excited and happy to know that there are tools out there than can make my daily life a little easier!

Overall, I am feeling like the winds have shifted and things are flowing through my life with a bit more positivity and ease! I want to keep that going!

Even though the past month has been difficult, I made it through. It is a sense of accomplishment to know that I have gotten back up after MS has knocked me down AGAIN! I may not be back to 100% or even 75% but I am getting there!

I know this won’t be my last battle with MS, but the small victories feel good! And feeling my body begin to bounce back feels even better!

Keep the positive thoughts going in your lives and positivity will manifest itself from within you!

-A

Moments of Silence

Moments of silence, moments of peace

I live for them as they recharge

My internal battery that always seems to be running on empty

Another thing I can chalk up to my disease.

 

Life can seem so hectic, even when you’re standing still

The moments become memories right before your eyes

It doesn’t matter if you’re moving too

Even if you cannot move the world certainly will.

 

My hands smell like a hospital or a clinic room at best

Sterile and clean in a way that bites my nose

And there are bruises on my arms

And the rest of me is waiting for the results of all those tests.

 

“Please make a fist, now I’ll just find a real good vein”

I’m a pro at this, I think, I’ve done it a thousand times

But I still look away from the needle, and don’t look right at the blood

It seems the only thing I’m really used to is the pain.

 

The blood is gone, the tests are done, and the pee is in a cup

Now I wait here wondering if I’ll get a phone call like before

One that changes life forever, or shocks me through and through

One that makes my blood run cold or tells me time is up.

 

But as I sit here on the deck, my dog sleeping on my feet

The sun shines down on both of us warming up our souls

I smile and enjoy this moment, and appreciate my life

Because these bruises are my armor against any fate I meet.

 

All the pain in life has lessons, if you look just close enough

All your suffering will make you brave and strong

So, do not let your heart grow heavy, and never think that you are weak

For the times that were so hard on you have made you really tough.

 

A day in my body, one that is tired and autoimmune, will teach you many things

It will teach you to stand strong, when the foulest winds will blow

It will teach that you have courage that you never knew before

It will teach you to see the joy and the beauty that life will bring

And most of all it will teach that you can fight

and you can get through anything.

-A

Exhausted is an Understatement

I am emotionally and physically exhausted. This past month has been hard. Between starting injections, fighting off a relapse (or whatever this is), trying to manage pain, working through anxiety issues, death in the family and the political unrest and instability that our sentient Cheeto of a president is encouraging… let’s just say it has been a rough month or so.

I wasn’t going to write a post today because I was feeling so down. I had a bad injection this morning that caused some swelling and much more discomfort than usual.

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Swelling from injection 😦

Mom, don’t worry, I sent a pic to my doctor and he said it was most likely just not injected deep enough! But if it happens again we may need to rethink Glartiramer Acetate…I feel like when I have a bad injection day it just kind of starts my day off shitty.

I’m not a betting gal, but I would put money down that anyone who has to stab themselves and inject a foreign substance into their body for their immune system to attack would probably describe the experience using a similar vernacular.

I’ve been extremely fatigued this past week or so. I didn’t think my fatigue could increase more from where it was at, but my body never ceases to prove me wrong. I feel down about myself because I have been so weak, and so tired. I have a pretty strong sense of self, but I can’t help but feel bad about myself when all I can do is sleep 15 hours a day and still need at least one nap to keep me going for the few hours I am awake.

It’s frustrating to watch my life pass by and to be too tired, or sick, or anxious to be able to actively participate in it.

I didn’t want to write this post because I try to be positive and I knew I didn’t have much positivity in me today. But then I talked to my therapist and she reminded me that this is my truth. People need to know that not every day is full of positivity and success and joy. Some days are hard. Some days you cry. Some days you hurt. And that is ok. That is human.

I know I am a strong woman. I wouldn’t be able to fight this fight if I wasn’t, but that doesn’t mean that I am not allowed to have my weak moments. No matter how strong we are, we all have days that knock us to our knees. What matters most is that we get back up again. It’s ok if we stay down on our knees for a little while, it’s ok to be sad and frustrated sometimes. I know that things will get better.

I hope that wherever you are on your journey today that you are able to find strength and remember that even at the end of the longest and darkest of nights the sun will always rise in the morning.

-A

Dear MS…

Dear Multiple Sclerosis,

We’ve been seeing each other for quite a few months now, but I know it is just the beginning of our relationship. When we first met I didn’t know much about you. I had heard your name before but never really given you much thought. But then you showed up one morning and changed my life forever.

You brought with you some of your not so pleasant friends. You know the ones I am talking about…numbness, tingling, lesions, burning, dizziness, and fatigue to name a few. You introduced me to steroid infusions, injections and MRI’s. I can’t say I’m a huge fan of those guys either.

You scared me more than I have ever been frightened before. You make me feel weak. You make me feel sick. You make me feel isolated and anxious. You took away my trust in my body.

You’ve been a tough pill to swallow. I’ve hated you, been bruised for you, and miss out on fun things for you, when you demanded it.

But I have not given in to you. I won’t ever stop fighting you. You may be a part of me now, but you are not what makes me me. 

Despite your efforts, I have stood back up each time you’ve knocked me down. I have learned that I am stronger than I ever knew I was. You have taught me take my body seriously. To listen when it’s signaling to me that something is off. To focus on the positive more than the negative.

I have learned that even on my sickest days, I have people around me who will support and care for me. That I am never alone. I have learned that the power of love will shine bright enough to light up even the darkest of nights and frighten away even the most ghoulish of nightmares. I have learned to be courageous, even when I don’t want to be.

I have learned to take things a little slower and enjoy each minute. To stop and appreciate the everyday things and the beauty all around me. I have learned to love more fiercely, to be more quick to forgiveness and slow to anger. I have gained a compassion for life and the miracle that it is!

So in the end…I cannot hate you. For what use would that be? I’ve chosen to grow, rather than sit still. I’ve chosen to be inspired, rather than be afraid. I have chosen to fight. My life is still my life.

Sincerely,

Mrs. MS Strong

 

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.

How do you beat the heat?

Many people with Multiple Sclerosis suffer from heat sensitivity. Heat can actually cause symptoms of MS to temporarily worsen, recreating old flare ups! Doctors believe this is because the increase in body temperature causes the damaged nerves to fire even less effectively. Similarly, when someone with MS get’s a fever from an infection they can sometimes have a “pseudo relapse”, where old symptoms will flare up but then go away once your fever clears up. It only takes a couple of degrees increase to cause a whole world of issues in an MS’rs body.

For me just an hour or so in the heat can leave me feeling severely fatigued, nauseous, and I lose feeling and have numbness/tingling in the right side of my body. But I LOVE being outside in the sun so much! It’s great for my mental health, as well as the fact that I could use the vitamin D (I am also severely vitamin D deficient). I’ve developed a few tips and tricks to keep myself stay cool in the heat. So I don’t have to totally give up my time with my plants and dog outside!

  1. Stay hydrated. I always try to drink a lot of water, but when I know I am spending time in the heat I make sure to drink extra! I also pretty much never leave home without my water bottle anymore 🙂
  2. Take breaks. I try not to stay out in the direct sun for very long at all. Even if I am in the shade, and the temp is really hot, I make sure that I take frequent breaks in the air conditioning to make sure I don’t get too overheated.
  3. Sunscreen! I have a newly found passion for skin care. The two golden rules I have found are MOISTURIZE and PUT ON SUNSCREEN! Your skin will thank you!
  4. Stick to the shade. I try to adhere to this as much as possible. For example, yesterday when my husband and I went out to lunch we asked for a table on the patio but not in direct sunlight. We had to wait a little longer for a table, but the restaurant was happy to accommodate!
  5. My neck cooling “towel”. I got a cool little cooling device at this year’s Walk MS: Twin Cities. It’s basically a tiny scarf that you stick in the freezer and it get’s (and stays) nice and cold! I love to slap that baby on when I am gardening or reading outside!

 

Do you have any tips or tricks for staying cool in the summer heat?!? I would love to hear them!

Stay cool my friends 😉

-A

Birthday Weekend: Day 1

First things first, today marks the completion of my first week of Glatiramer Acetate injections. It was also a rough injection day. Maybe I wasn’t paying as much attention to what I was doing because ‘hey, this is my third time doing this in five days. I’m an old pro at this right?’ No, I am not.

I injected into my upper thigh today, as was planned in my “injection rotation planner”, but I must have had the depth setting too high because I ended up injecting into my muscle. Glatiramer Acetate is meant to be injected into the fatty layer before the muscle, and let me tell you, there is a reason why! It hurt like a mother trucker.

It didn’t help that I could not, for the life of me, find my heating pad this morning. My brain fog has me getting seriously forgetful over the past month or so. The other week I put ice cream in the fridge and didn’t know until I looked for it the next day only to discover that my ridiculously overpriced $4.99 gluten free, dairy free, soy free, nut free “ice cream” was now a lumpy sludge in the fridge. Shame. But this thing is LOST. My husband and I spent a good half hour scouring every corner (and yes, I looked in the fridge) for the hot pack and is nowhere to be found. And I literally used it two days ago!  I’m sure I’ll find it in some random place eventually

…unless it was stolen…I am looking at you Sparrow Mom.

Luckily, my husband was there to carry me to the couch and help me apply pressure and ice on my leg until the pain subsided enough for me to be able to crack a smile at some silly joke he was saying to try to distract me. And it worked, with his comfort, terrible jokes, and instant and caring reactions we got through my first injection stumble. I’m a lucky wife.

In other news, turn 25 on Sunday! I am so excited for this weekend. I have always loved birthdays. I love looking back at the past year and seeing how I have grown, how my life has changed, and the lessons I have learned. I love looking forward and the excitement and wonder of what another year will hold. Birthdays just make me happy. They celebrate life and all that comes with it!

My life has changed A LOT in this past year, and I can already tell that this weekend will not just be a regular birthday. This year I feel like I am feeling everything a little bit more. More love, more joy, more nostalgia, more gratitude for what I have; an amazing family and friends, my husband and even the medicine that I have access to that is giving me a chance at my new “normal”. My heart is dancing with all of the good vibes I am feeling today.

To start out my birthday weekend I would like to share some things I am thankful for in this past year.

  • I am thankful that my husband and I found a perfect neighborhood and home to establish our roots in.
  • I am thankful that even in the darkest times, just after my initial diagnosis, I learned an extremely powerful lesson. That no matter how much darkness is thrown at you the light of love will always shine through brighter.
  • I am thankful that the man of my dreams finally asked me to marry him 😉
  • I am thankful that I have been able to focus so much of my recent time and energy on getting healthier both physically and mentally.
  • I am thankful for the immense amount of support and love my family and friends, and even strangers, have shown me since my diagnosis of Multiple Sclerosis. Every single person who has reached out, prayed, walked in this years Walk MS: Twin Cities with “Dumbledore’s Army”, donated, sent good vibes or shared my story and MS awareness with others. I am thankful for you!

 

-A

First Injection Day: √

Today was the big day, injection training! For those of you who have read my blog before you know that I was recently diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). Since my diagnosis I have had a lot to wrap my mind around. As someone who suffers from some pretty intense anxiety to begin with, it has been…challenging to put it kindly. But one thing that I have been working up the courage for was beginning a disease modifying drug.

Disease modifying drugs work to slow down the progression of MS. There are various drugs (I think 15? currently on the market in the US) that can be used to slow the progression of this disease. These drugs range in effectiveness, risks, and the methods in which they are administered/how they work in the body.

There is no cure for Multiple Sclerosis. There is no way to undo the damage, if permanent nerve damage has already occurred. One of the biggest misunderstandings I had (and I think many people would have) about the treatment I am starting is that it does not make you feel better. It doesn’t really alleviate any symptoms, rather it gives your immune system something different to attack rather than your own myelin (protective covering of the nerves. Think of someone with MS as having a cellphone charger with the wires exposed). The hope of this treatment is that it will slow the progression of my disease and delay my next relapse or attack of symptoms, maybe by months…maybe by years!

The treatment I chose to start with is Glatiramer Acetate (the generic form of Copaxone). Glatiramer Acetate has minimal side effects, mostly confined to the injection site and does not cause long-term damage/risks to the reproductive organs. This was really important to me. I have already lost so much to this disease, I didn’t want to risk losing my future family too. So I wanted to try this less aggressive, albeit sometimes less effective, treatment option first. This drug is injected into the fatty layer under the skin either daily or three times a week, depending on dosage.

I’ve been trying to wrap my mind around giving myself shots for a while now (pretty much since I started researching treatment options last fall) and have been rather nervous about it. All it would take was the image of myself pushing a needle into my own tummy and my vision would go dark, hands and feet go numb and the room starts to spin (funny, those are all MS symptoms too! Yay anxiety, double the fun for me!) I tried to comfort myself by reminding myself that I would be thoroughly trained on how to safely inject, I would have my husband to help me if I really was that squeamish at the end of the day, and that when it comes down to it I could just inject in other body parts that made me feel less freaked out.

But all the self soothing in the world couldn’t keep that bossy voice of anxiety from running her mouth in the back of my mind.

But this morning came, and so did the nurse to show me how to tackle my newest MS challenge.

I just have to give a shout out to my nurse, who did an absolutely amazing job teaching me everything I needed to know and making sure I felt comfortable and ready to give my self my first ever injection.  And that is just what I did, and in my tummy no less! I decided that if I am going to face this fear I am going to face it head on!

It wasn’t too bad! The injection itself just felt like any shot does. There was some pretty strong stinging and burning for a few minutes after, while the injection spread, but it passed within a few minutes. As I write this, the only indication that I had such a life changing morning is a slight ache in my abdomen and a tiny dot where the needle went in. That’s it.

It’s funny. There are many moments when our lives change forever, and they pass without us even realizing them. Moments when we fall in love, take a stand or face a challenge. Sometimes they’re big, sometimes they are small. As small as pushing a button and a tiny needle injecting you with not just a medicine, but hope.

Hope that this disease won’t progress. Hope that I’ll have many years of health ahead of me. Hope that I’ll grow nice and old and have a family of my own to watch grow up too. Hope that one day I can look back at this time of my life and be proud of the bravery I showed, even when I felt like hiding. Hope that one day we won’t be on here talking about a treatment, we will be talking about the cure.

Until then, I will continue to learn each day, to cherish the peaceful moments and to fill my heart and the hearts of those around me with as much love and positivity as I can muster.

-A

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” – Albus Dumbledore

silhouette photo of trees during night time
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