A Poem for the Insomniacs

The pink and gold are streaming through the window.

The sun is sinking, melting slowly across the sky

Telling us the day is almost over, almost time to say ‘goodnight’.

 

I’ve been looking forward to my bed, so comfy and so warm,

Looking forward to the moment when I’ll pull the covers to my chin

And my journey off to dreamland surely will begin.

 

My head rests, it’s so comfy with my pillows and my dog snoring on the floor

The lights are out, and we have the temperature just right

I just know I’m going to get some damn good sleep tonight!

 

The seconds turn to minutes and then an hour has gone by

My eyes are drooping heavy, but my mind seems wide awake

I am tossing I am turning…I am thinking that last coffee was a mistake.

 

Insomnia, my old friend! How I love thee so!

I’ve tried everything to combat these tired and sleepless nights

I’ve taken my warm shower, meditated and turned out all the lights.

 

I have listened to a bedtime tale, and counted wooly sheep

I have stretched my legs and gotten up and gone on back to bed

I have even taken meds, but my brain chose “wide awake” instead.

 

It’s not that I’m not exhausted, because I truly am.

My limbs are tied to bowling balls and my eyelids feel like lead

But no matter what I do I’m restless, tossing and turning in this bed.

 

The moon stares through the window, telling me to close my eyes

The silence seems to roar, I should not be awake right now

The clock is mocking me, daring me to fall asleep somehow

 

We are a brotherhood of dream chasers, hunters of the ZZZ’s

We are united in our midnight thoughts and the sleepless fight,

Bonded by the early mornings bled from the late nights

 

We are nap takers, and coffee drinkers, we are the sleepless warriors

We have dark circles under our eyes and you may catch us in a yawn or two

We are the night owls, the sleepless zombies. Look around, we are all around you!

 

-A

 

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.

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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

 

 

 

Link between childhood trauma and autoimmune diseases?

I have been thinking a lot lately about the link between childhood trauma and stress related disorders (post traumatic stress disorder, obsessive compulsive disorder, etc) and Multiple Sclerosis.

According to numerous studies throughout the years there is significant evidence that persons who experienced childhood trauma or prolonged stress and anxiety as a child were at a remarkably higher risk for autoimmune disease. These studies are ongoing and are still working out exactly how and why this happens in the body.

Those of you who have read my story you will know that I was abused as a teen by an older man who I met through community theater. Luckily, my family fought tooth and nail for years to keep me from completely slipping away into the clutches of this monster, and eventually it paid off. I was able to make the decision to end my “relationship” with him and remove him from my life.

But those years left scars on me emotionally. I was always an anxious child and started treatment for my anxiety and depression at a young age (around 15 or 16). But after the mistreatment and trauma caused by this man my anxiety only got worse.

A few years ago I stared experiencing flashbacks, nightmares, severe levels of anxiety, panic attacks and other unpleasant symptoms. I started seeing a psychiatrist and going to regular therapy. Through this I was diagnosed with PTSD. It was only about three years later that I was diagnosed with Multiple Sclerosis.

It is somewhat amazing to think about what a powerful impact stress and trauma can have on the body, even years later. Not just emotionally, but manifesting itself into physical illnesses, and in some cases, autoimmune diseases.

When I first discovered this information I was MAD. I was mad at the man who abused me for all of those years. He took so many things from me. My childhood, my innocence, my trust, my confidence and independence and so much more. But now, to learn that years later my health is now leaving me too and it could be linked to the trauma he caused me…

But the longer I have sat with this information the more my anger has slowly ebbed away. By no means do I forgive what that man did to me. It is unforgivable and to quote my girl Kesha;

Some things only god can forgive.” – Praying, Kesha

However, I do not harbor as much anger and resentment towards him as I once did. The struggles and the pain that I endured because of him shaped me into the woman who I am today. I learned to be strong and to shape my own opinions, I learned to be true to myself because I am enough, I learned the importance and the constant love of my family, I learned that I will never let anyone control me or push me around ever again.

They were hard lessons and took me years to finally start addressing, but now that I have I have found a peace that can only be described as liberating.

I do not want to live with hate in my life. I do not want to live in the past. I do not want to live resenting someone for their crimes against me. I have a good life. Even with PTSD, Anxiety, and Multiple Sclerosis I would say I have it pretty damn good.

I have a husband who not only loves, cares, and understands me…he is my best friend too. I have a family that is my rock, always there to support me and to lean on. I have a wonderful dog who keeps me on my toes and makes me laugh every day. I have a beautiful home with my own little garden and plants and I get to share it with Sparrow Mom and her family too!

(Brief update on Sparrow Mom. I know ya’ll care A LOT. Since she moved out, her three babes have made the great leap of life and taken wing. I could not be more proud of them. Bravo little birds, bravo. The nest is currently unoccupied, despite my daily real-estate efforts. Not to mention the multiple phone calls and coffee dates I had with a robin that seemed very interested…ANYWAYS I have a new friend in my backyard oasis and his name is Mr. Toad. More on him later.)

So I take this newfound information regarding my past (and how it could still be affecting my body in the present) and I am choosing to look at it not as painful reminder of things that once were, but as a positive sign for the future.

This research means that we are making progress in understanding these very mysterious diseases. And understanding is the first step towards finding a cure or a way to prevent them!

It is also a reminder of how impactful stress can be. We know that stress can trigger a relapse with Multiple Sclerosis. So now, more than ever, it is so very important for me to practice mindfulness, tackle my problems one day at a time, and take time to breathe and just relax!

No matter where you are in your life I encourage you to take a moment today to think of a few things you are grateful for, take a couple of minutes to just let yourself relax and enjoy those things, and take a few calming deep breaths. It’s a good day to let go of a little stress!

-A

 

Dreams – Psychological or Physiological?

I have always had extremely vivid dreams.

I can still remember dreams that I had as a child. Especially ones that I had more than once. Recurring dreams are common. Many people experience them for short periods in their life, or throughout their entire lives!

I seem to remember that I often had a dream as a child about being stuck in a car, in a driveway, with my family with a PANTHER circling the car! Each time, we had to figure out a way to distract the panther so we could all safely exit the car  and get into the house.

Recurring dreams often mean there are some stressors in one’s life that are not being addressed. So it makes sense that my recurring dream as a child probably happened when I was dealing with some sort of stress.

When we dream our brain is actually rapidly processing and storing away the experiences and emotions of the day. So when you are worried or stressed about something during your day, sometimes those thoughts can manifest themselves into a stressful dream or a nightmare.

I think it is important to recognize that dreams are not a psychological experience, rather a physiological one. Meaning, we shouldn’t try to look too hard into the meaning or the “message” of our dreams. Rather, we should recognize that when we are having nightmares or stressful dreams there is most likely an underlying stressor in our waking lives that needs to be addressed.

It’s easy for me to get caught up in the magical world of dreams, seeing as mine are often extremely vivid and detailed. I almost always remember my dreams. I didn’t realize everyone didn’t, not until after I started telling my dreams to my husband in the morning only to be met with a face that could only be described as :

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I know when in your sleep cycle and the speed that you wake up can effect how much you remember you dreams, so maybe that is why I always remember my dreams? I have no idea. I just know that they are wild!

Sometimes my dreams are wonderful and fantastical and full of adventure and happiness. I like those dreams. Sometimes they are mundane and repetitive, like working on an assembly line. But sometimes, they are bad.

I have a lot of nightmares.

Nightmares are a common side effect of PTSD. They don’t always have anything to do with my trauma. Sometimes they do, but not always.

Since my diagnosis of Multiple Sclerosis my nightmares have gotten even worse and more frequent. I know it is because of the added stress of the diagnosis and being sick.

My most common theme in my dreams is that I am being chased. The “chaser” and the situation varies dream to dream, but the general feeling is always the same. I am running for my life and whoever or whatever is chasing me is always one step behind me.

I wake up from those dreams exhausted, out of breath, soaked with sweat and anxious. Dreams of being chased usually subconsciously mean that you are avoiding a person/ issue.

It’s not too hard for me to identify the “issue” in my life that has been my biggest source of anxiety, fear, and avoidance in my recent life. My diagnosis of Multiple Sclerosis. I know that I have come very far already with accepting and processing my diagnosis. But I also know that I have many more lessons and much more to learn in my life.

So, I try not to let these dreams effect me in my waking life too much. Sometimes I will have what I like to call a “hangover dream”. Meaning, the feelings and emotions from that dream will “hangover” into my day.

Have you ever had a dream that someone died and woken up feeling sad and completely devastate for that person, even though you know damn well they are alive and well?

I can see how it would be easy for people to believe that dreams are omens and signs from above. When I have one of these hangover dreams that lingers with me throughout the day I try to challenge myself to practice extra mindfulness and presence to try to guide my mind back into reality.

Things like going for a walk, doing some gardening, writing or cleaning tend to help me let go of a particularly powerful dream.

Do you remember your dreams? Do you have “hangover dreams”? Have you done your own research into the meaning of dreams? I’d love to hear more about this fascinating and mysterious subject!

Hoping you have nothing but positivity in your sleep tonight!

-A

I Am From

I am from

Bedtime stories, lilac bushes, the smell of cakes baking. From living room plays and my little brother’s laugh.

I am from

The smell of horses on my clothes and the thrill of spying on my older sister. From anxiety pills, singing in the bathroom mirror and dreams of being a Broadway star.

I am from

Reading books until my eyes would hurt and growing up too fast. From late night phone calls, crying myself to sleep, and from losing myself to a monster hidden inside a man’s body.

I am from

Daydreams and parents that fought for me and never gave up. From the rush of freedom when you tell someone toxic ‘goodbye’. From therapy, from growing pains, from surviving.

I am from

The windy streets of Chicago, staying up late drinking wine on the deck and flipping off taxis that almost run me over.

I am from

Butterflies on the first day of college, from counting my last quarters to pay for the train. From Dunkin’ Donuts coffee and a cigarette before work.

I am from

The smell of an empty stage on the first day of rehearsal, dogs barking and dive bars. From the feel of leash in my hand and garage cover bands.

I am from

Packing up my belongings in the back of a truck and admitting when I need help. From the biting cold of Minnesota winters and the scorching sun of the summer.

I am from

Sweeping up hair in a high-end salon. From the night that I met him and fell in love. From finding each other and learning to trust again after all of life’s pain.

I am from

The new puppy crying in the middle of the night, the smell of bacon on Saturday morning and picking up dog poop. From floppy ears, wet kisses and going for walks.

I am from

Two apartments, one townhouse, then our home. From a diamond ring inside a Christmas ornament. From a night in November and an exchanging of vows.

I am from

A phone call that changed my life, fatigue, pain, and MRI’s. From Panic attacks, steroid infusion therapy, IV’s and the kind words of nurses.

I am from

PTSD, headaches and lesions in my spine. From being diagnosed with Multiple Sclerosis. From getting back up when life knocks me down and learning each day.

I am from

Lesions in my brain, syringes, the clean smell of a hospital that makes your nose wrinkle. From injecting myself with disease modifying drugs and the painful hold of the MS hug.

I am from

The compassion of others, from faith in myself. From laughing so hard that we both end up crying, from flashbacks, kisses goodnight and wishes for sweet dreams every night.

I am from

Positive thinking, energy, vivid dreams and poems. From strength in the face of my greatest fears. From soft blankets, dog snuggles, and songs stuck in my head.

From determination,  finding a cure, walking for awareness and the power of love.

From becoming a woman I can be proud of.

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

Stronger than you think.

This weekend I tackled something that I have been dreading ever since I got sick last fall. I went to a big social event and I stayed the whole time! On top of that, I had so much fun!

My husband and I attended our friends’ wedding this weekend. Leading up to the day I was pretty nervous. This would be my first big “social outing” pretty much since my diagnosis of Multiple Sclerosis last fall.

Even before my diagnosis I would always get a little bit nervous before going to parties or events where there would be big crowds and lots of noise. Shortly after I found out I had MS my husband and I tried to go to a Timberwolves basketball game and we ended up leaving before the game even started due to me having a massive panic attack. I just couldn’t handle the noise of the crowd, the feeling of having so many people close to me, and the claustrophobia brought on by being enclosed in a building with so many people and limited exits.

Since then my social anxiety has grown more and more. What if I don’t feel well at the event, what if I need to leave but can’t find a socially acceptable way to do so? What if I push myself too hard and have another relapse? What if I have a panic attack in front of everyone? My mind just races to the worst possible scenarios, if I don’t actively work to calm myself down.

My energy levels still have not bounced back completely, so I was also uncertain as to how my body would react to an “all day” event.

But after all of that worry, I had a wonderful time with our friends and honestly didn’t feel too much fatigue/weakness the day of the wedding. I made sure that I stayed hydrated and limited my alcohol, and I kept cool by staying in the air conditioning as much as possible. I think I had so much else going on, and was focused on all of the love and joy around me that I forgot that I was even worried about “what my body could handle”.

I forgot that I had MS. That was really great feeling.

Laughing with friends, chatting with people I hadn’t seen in a while and dancing with my husband just filled my heart with so much positivity and happiness.

Now don’t get me wrong, my big weekend didn’t come without some price to pay. I am pretty sure I slept the entire day on Sunday, only waking up to eat and go to the bathroom. This morning I was pretty exhausted still. But I listened to my body and took a nice little morning nap (is that even a thing?). Slowly but surely, I can feel my energy coming back to me.

Even though MS does limit me physically at times, I am learning how to balance this disability and my life. I am learning that sometimes it is worth it to use a little more energy for a special occasion, I just need to plan on having a couple of “rest days” afterwards to allow myself to recover.

Multiple Sclerosis makes life more difficult, that is for sure. But it also has pushed me to realize that I am stronger than I ever knew I was. I can face the things that scare me and come out the other side smiling.

I am working on continuing to express myself and my emotions/experiences through creative outlets. Today I tried singing for the first time in a long time. It felt so good! I will say that I was surprised how tired just singing a few songs made me, but it was worth it!

I thought that a cover of “Titanium” expressed perfectly how I am feeling about my MS right now. It’s tough, I am fighting every day, but I am strong.

 

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