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

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

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.

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

Pain, Pain, go away…

The past week or so has been rough for me. I have been experiencing the MS hug, extreme fatigue (I’ve only felt it this severely once before), weakness, stomach problems, muscle spasms and shaking, and pain in my limbs, back, and chest.

I’ve been in contact with my doctors, so they know what is going on. My neurologist said I could be having a worsening of symptoms because the injections are working and as my nerves get a chance to heal they are misfiring more rapidly, and that it will pass in time. Other possibilities are an underlying infection causing a flare up, or an actual flare up. So I am really rooting for the first option!

When I get this sick I have noticed that my anxiety seems to use the time to take center stage in my thoughts. I start worrying that I will never feel better this time, that people think I am just lazy and don’t understand what I am going through, I worry that I am dying. I know that none of those things are true. That they are just the negative ideas and words of my anxiety. But it’s hard to just stop those thoughts when anxiety can be SO LOUD.

I know that I am stronger than this disease. I have bounced back from this before, and I will do it again. I just wish there was a little more certainty around Multiple Sclerosis. The unknown is a very scary thing. But I am arming myself for battle with my armor of blankets, my shield of heating pads, my noble steed Sir Mac N Cheese. But the most important thing I have to help me fight this battle is the love, positive energy, and caring actions and thoughts of my husband, family, friends, and all of you!

Let’s keep fighting this thing!

-A

When you realize a weed is actually a flower…

As I write today I have blisters and scratches all over my hands. I spent the morning outside weeding the front garden. As new homeowners, my husband and I are constantly surprised by things we never realized came along with owning a house. Things like having to call your first extermination service because there is a wasp infestation in your deck railings. Or the first time the upstairs toilet overflows. Or realizing that if you open the upstairs bedroom and bathroom windows at the same time your upstairs doors will all slam shut and scare the poops out of you! All of those lovely, first time homeowner memories will be cherished forever, I’m sure.

We bought our house in the fall last year, so we didn’t really get to see what the trees, flowers, plants around the house looked like in full bloom. Much to my surprise this spring, once our yard finally emerged from its icy blanket of snow I realized that we have quite the little garden started in our front yard! Unfortunately for said garden it took me about a month to realize that the plants growing were in fact intentional, not weeds. Now that I have realized my error (sorry flowers!) I decided it was time to get to work on weeding my garden and cleaning up the front of our house.

Again, knowing nothing about gardening I learned a very important lesson that I shall pass on to my children and my children’s children.

“When one weeds their garden, one must wear gloves, lest their hands will harden”. – A less wise me

Yep, once these blisters heal I intend on having some nice calloused hands to show off my gardening status!

Beginner…the status is beginner.

No matter, I am still proud of the work that I did today. It was hard, physical work, but in a way it was deeply cathartic. Yesterday we buried my husbands grandfather. It was a day full of family, sorrow, memories and love. It was truly a beautiful reminder of what is important in life. Faith, family and love.

As I was weeding the garden, early this morning, I couldn’t help but think. I thought about the past, namely the day before. I prayed for my husbands grandmother and the rest of the family as they process their grief and loss,  and that they will feel a healing in their souls.

I also thought about the present. As I continued to weed the garden the my body began to ache, it was getting warmer and I could feel my fatigue starting to take its toll. But each time I looked at my progress I felt such a sense of accomplishment that I forgot how tired I was. I forgot how easy it would be to just go inside and do this another day.

In those moments I felt weak I was finding comfort and strength in helping another living thing. By clearing out the dead branches and leaves around the roots of the plants to help them better grow. I felt comforted by watering the flowers as the hot sun threatened them and by sweeping off the path walking up to our front door, creating a welcoming pathway.

By the way, while I was doing this I found and AMAZING pink rock. It’s a bit bigger than my fist and beautiful. I put it on our front step. Talk about good energies!

 

Even though the work was tiring and physically demanding, it energized me to be taking care of nature and allowing myself to only worry about one task at a time.

I think that we can think of our own minds as a garden. We need to nourish it, feed it, and care for it to help it grow. And it won’t always be butterflies and rainbows. It tough work. But good work.

Whether it be through reading, writing, gardening, doing an activity you enjoy or learning about a new subject that interests you, I think it is important to keep growing our minds, no matter how stressful or how busy our lives get. We need to remember to take the time to stop and ask ourselves how we are doing. Check in with your body and mind and give it the care it needs! And always remember that you are not alone. There are always people who care about you and appreciate you and think of you. Even if you don’t know it.

I am wishing everyone peaceful minds today and an evening full of love and comfort.

-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

MRI aka: Menacing, roaring, instrument!

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

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

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

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

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

A full bottle of water

Harry Potter Hogwarts Mystery all cued up on my ipad

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

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

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

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

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

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

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

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

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

 

 

The fatigue is real…

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

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

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

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

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

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