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

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

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

Birthday Weekend: Day 1

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

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

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

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

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

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

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

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

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

 

-A

First Injection Day: √

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

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

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

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

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

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

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

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

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

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

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

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

-A

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

Photo by Miriam Espacio on Pexels.com

One of these packages looks more fun than the other…

I love the mail.

I love receiving letters in the mail, I love sending them. I love getting packages in the mail and opening them up, sending care packages to people! Yes, you have to sift through some junk to get to the good stuff sometimes, but isn’t that the same in everything in life!

As an adult I started getting more of “the junk” in the mail. Bills, advertisements, ads for stores I’ve never even shopped at. But I also started getting some fun stuff too! I get wedding invitations, baby announcements, Christmas cards! That’s kind of how my life has been lately. I’ve started getting a little more of the crappy stuff (MS diagnosis, intense anxiety etc) but I’ve also started getting a whole lot more of the wonderful stuff (a husband, a supportive family, a house and a goon of a dog).

For my birthday this year my husband got me a subscription for Ipsy. I am really excited to try out some new beauty supplies each month! Since my diagnosis I have been struggling with the way I view myself. I lost a lot of weight (not intentionally), began having the worst acne of my life (seriously, this shit makes my teenage years look like beauty marks!) and for a while, when I was feeling really sick, I just kind of gave up.

I have always enjoyed makeup and beauty products, getting my nails done and all that jazz, but this winter I was so preoccupied with the shock of my diagnosis that I fell into a no bra, all day pj wearing, throw my hair into a nest of a bun at the top of my head situation…like Sparrow Mom was considering my hair prime real-estate at one point…

Now don’t get me wrong, there is NOTHING wrong with no bra, all day pj’s and having a tangle of hair fit for housing birds and other small creatures on the top of your head! I love those days. That still is me most days.

In fact, the only reason I am not wearing my pajamas right now is because I had to drag my butt away from my Harry Potter marathon and run some errands today.

I am totally supportive of rocking whatever look makes you feel good! The issue was, I was starting to not feel good about myself. I read a post someone wrote about depression and getting yourself out of a tough patch and one of the tips was “Have you showered today? If the answer is no, go shower. Right now.” It really made me realize that I was feeling crappy about myself on the inside (still coming to terms with the fact that a part of my body was attacking another part) and was letting anxiety and negativity control my life so much that I had stopped doing some of the basic things that made me feel good.

Again, I come back to the power of our thoughts and intentions. One small thing I could do to make myself feel better was to take care of myself, starting on the outside. Spring was just around the corner and I started making sure I established my self-care routine again. I used essential oils to make my showers even more relaxing and enjoyable. I made sure I put on an outfit I liked every day  even though I was no longer working at this point and most days wasn’t seeing anyone but my husband and Sir Mac N Cheese, it just made me feel a little more like myself again.

Now I am really getting into taking care of myself not just on the outside but on the inside too!

I’ve started a skin care routine (any other MS Warriors struggle with acne?…I’m thinking my stress levels and two rounds of steroid infusion therapy in 3 months kind of had something to do with it? I’d love to hear your tips and tricks!)

I’ve started taking pride in myself, both inside and out, and I’ve started an “internal makeover”, one could say. I am actively making sure that I keep that icky negative energy out (as best I can) and soak up as much positivity as I possibly can. So anyways, I’m pumped about this beauty package today.

But I got more than one package today. I got my first shipment of Glatiramer Acetate injections as well as my auto injector and training kit. Yeah…that package was slightly less fun to receive than my other one.

I spent the beginning of this afternoon reading and watching the training materials the drug company sent and organizing my “medicine cabinet” (which is starting to look like a small pharmacy) and trying to get myself prepared for Monday, when I start the injections. I will say, that after watching the training videos and seeing how the auto injector works I am feeling slightly less nervous about injecting myself…SLIGHTLY. I’m still thinking it will take some time (and probably an emotional breakdown or two) before I get used to it. But, that’s just it. I will get used to it. Someday. It helps to have a trained nurse coming to our home to teach my husband and I for the first day.

I will write my thoughts on my first experience with injections sometime next week, I am sure 🙂