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

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

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