It’s OK not to be OK

This is not the easiest post for me to write. It is hard to admit that we are not perfect. It is not easy to discuss our failures and it is so hard to admit that we have thrown in the towel.

Last weekend I left for my first vacation (or even stay away from my home!) since my diagnosis of Multiple Sclerosis (MS) last November. I was extremely anxious about it going in. I was worried about a whole multitude of things. But the biggest and nastiest fear, lurking under the floorboards of my heart, was that I wouldn’t be able to do it. That I would get sick and need to go home, or be too anxious and need to go home, or never even leave the house to begin with!

I went in with a plan. I made lists, did research, and checked and double checked everything. I set myself up for success.

Things went well the first couple of days. The best parts of it were being able to spend time with my family and just laugh, be ourselves, and forget about our everyday worries for a little while. I have an amazing family. They make me laugh like no one else can, comfort me in a way that only years of strong bonds can teach, and they understand me better than anyone on this planet.

Don’t get me wrong, I was anxious those first few days. But it was like the pot was boiling with only half empty water. I wasn’t worried about it boiling over. Things were controlled. Looking back, I was needing to take my Xanax much more often than I normally would, but that is ok! It is what it is there for.

But then on my third night of vacationing I fell apart.

I think I was starting to feel the physical toll of being out in the sun, swimming, cliff jumping etc. It scares me – not cliff jumping, MS – Even though I feel it almost every day, every time my right leg goes numb and tingly it scares me. I tried to remind myself that I have felt that feeling before, it just means I need to rest and I will bounce back in a day or two.

I think I was also having a really hard time being away from the comfort of my routine and familiarity of being at home. I was letting it get to me that my meds weren’t in the same place they always are when I need them, that the bed made my back hurt and crunched like diaper every-time my husband rolled over next to me, that I didn’t have my dog to snuggle and pet when I started to feel the anxiety simmering closer and closer to the surface of the pot.

I don’t know what caused me to boil over. I was fine one moment and in the throes of a full-blown panic attack the next. All I could keep thinking was that I NEEDED to get off this island and go home. My husband tried to calm me down. I took my meds. We went back to our lodgings and laid down and tried to ride out this attack. But I just couldn’t shake it.

We ended up leaving the trip early due to my anxiety. I felt like a failure. I felt like I was giving up on something that I had JUST been so proud of, my courage. I felt weak. It was not a good feeling. I think I cried the whole ferry back to the mainland.

I let myself feel sad for the rest of the night. I allowed myself to feel guilty for leaving the wonderful trip my mom and dad had planned for us. I allowed myself to feel anxious and terrible, but just for a little bit.

I knew I had made my choice, and although I might be a mess right now, that is OK.

It is OK not to be OK. It is ok to admit that you have given it your best shot and you need to go home and rest now. It is ok to say I can only push myself so far. It’s ok to admit that I might not be quite as strong yet as I though I was.

I did a lot of self reflecting on the drive back home. I think it is important for me not to feel ashamed for not being able to stay the whole trip (something I really wanted to do not just for the fun and sun, but to prove something to myself as well). I think it is important for me to recognize that I did my best and that I will continue to work on it. That does not mean I am not strong.

I will continue to work on techniques to manage my anxiety. I will continue to meditate and live in the present. I will continue to be grateful for the little things throughout my day.

And some day, when I am ready, I will try again!

-A

Traveling with MS and Anxiety, Part 1: Leaving the House

As I am sitting here writing this at 4am it is currently the FIRST morning of the FIRST vacation I have gone on since my diagnosis of Multiple Sclerosis.

The day before we left I was terrified. I had 2 major manic attacks that day, one of them lasting over 3 hours until I finally passed out for the night. I was quite literally shaking in fear. My husband sat with me patiently, listening to me rattle off every possible thing that could go wrong on the trip and how it would most certainly lead to my death. He held my hands to keep me from digging my nails into my skin so deep that I bled. He counted slowly with me to make sure I kept breathing. He is my superman.

I used to be great at traveling. I moved to Chicago, by myself, when I was only 18. I used to dream of traveling the world and seeing every inch of it! I used to fly back to Minnesota to visit my family and didn’t think twice about getting on an airplane.

I am not sure when that all changed. I think it was about 3-4 years ago, around the time my anxiety became very intense and I was diagnosed with Panic Attack Disorder and PTSD.

Now, even thinking about getting on a plane leaves me scrambling for the bathroom with nausea. Now, staying overnight in unfamiliar places can trigger a panic attack before I even get there. Now, I have to take oodles of medication just to relax enough to be able to go to the place that I am SUPPOSED TO BE RELAXING AT!

Multiple Sclerosis added a whole other level of anxiety to traveling. There are so many “what if’s” and unpredictability when it comes to MS. You can go to bed fine one night and wake up the next morning unable to feel your entire left side, or see, or speak. The thought of having a major attack when I am far away from home, my doctors, and the familiarity of my routine is extremely scary for me. What if something happens to my meds.

I’m going to have to give myself my shots ‘on the go’ for the first time. Woohoo, nothing like injecting yourself with disease modifying drugs and flaunting all of your injection sites in that hot new bikini you bought!

Two nights ago, I did not think I would make it on this trip. Hell, I didn’t even think I would make it out to the car. Even though the massive panic attack was telling me that:

“It’s not safe, it’s an Island for God’s sake!”

or

“You’ll get sick, you’ll be miserable, you won’t have the things you have at home to help you feel better”

or

“You are going to freak out. You won’t be able to sleep there at all. You’ll get so stressed out you’ll give yourself a relapse”

All of those things kept swirling through my head like a corndog in a nauseated kid’s stomach on a roller coaster.

I thought about canceling. But I didn’t.

I told myself that this disease and this anxiety has taken so much from me already. It can’t control my life. I WANT to see this beautiful island and waterfalls! I want to go on this trip!!! So, I mustered up all the courage that I could, packed my bags and we made it here!

I am so happy that I looked a scary thing in the eye and told it to fuck off. I am still having a little bit of anxiety, of course. But it is not stopping me from enjoying this time with my family.

This morning I am going to sit and watch the sunrise on a beautiful island, breathe in fresh air, connect with nature and most of all be grateful. Be grateful that I can still go on trips like this. Grateful that I can conquer some of my fears, one step at a time. Grateful that my family loves me and supports me the way they do. Grateful I found a husband who will always have my back and be my shoulder to cry on, bicep to snuggle, and hand to hold. Grateful for this new day. Grateful for this beautiful life.

Multiple Sclerosis Meltdown

I had a bit of a meltdown today.

I woke up in a body that did not feel strong.

My eyes open in the morning and my mind is 25 years young.

But my body does not feel like 25.

It feels weak. It feels fatigued. It feels unsteady.

Does everyone ache the way I do? Do they feel it at this age too?

I want to go out and explore the world.

I force myself to walk with my dog. Probably pushed too hard.

And after we both end up sleeping on the couch.

I don’t like feeling like my body is failing me.

I don’t like when the words “It’s not fair.” run across my mind for the millionth time.

It’s scary to know there is something wrong inside, something that no one can see.

Its unsettling to know that my own immune system is the thing hurting me.

I’m anxious for all the tomorrow’s and uncertainty they bring.

I am angry at my frantic mind for pulling me out of the present, out of calm.

Today I feel like 25 trapped in 93.

Today is what my husband and I call a “challenging day”.

It’s not bad, because it’s still my life and that is precious.

So we choose to look at this disease as a challenge.

Something that we can overcome.

I had a bit of a meltdown today.

But having good cry is not something that is wrong.

And although I may feel sick today I know

It’s what is on the inside that makes me MS Strong.

-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.

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 :

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…

-A