A Perfect Storm

The past two weeks have been rough. Very rough. It’s taken me a while to even work up the courage to write this post.

Two weeks ago I started feeling really crummy. I came down with some sort of stomach bug. It sucked, but it was just a stomach bug, I knew it would end. A few days passed…and then a few more. Before I knew it I had been down and out for a solid week. I woke up that next morning to something that I had never experienced before. My whole body was shaking. It wasn’t just shivering, it was violent, uncontrollable shakes wracking through my entire body. I would later find out that this phenominon is called Rigors.

At first my husband and I thought I was just cold. We cranked up the heat, layered clothes onto me, and piled on the blankets. But the shaking just continued. In fact, it got worse. The next day I emailed my doctor asking for advice. I’ve had chills before when I have had the flu, but never like that. My doctor suggested that I be seen that day.

I went in, got some meds. They did some tests and assured me that I had an infection and with some antibiotics I would be fine. Fast forward two days and I could barely walk anymore. My body was exhausted, I was exhausted, and to be honest, I was scared. Really scared.

I ended up spending the day in ER getting fluids and more tests than I could count. Again, they ruled out everything (this time also ruling out an infection, and advising me to stop taking the antibiotics). My heart rate was high, and I was running fever so the ER doc gave me the option of going home and trying to rest, or being admitted overnight for observation. I chose to go home, and try to get some sleep. I felt like that was what my body was needing the most. Looking back, I wish I had stayed.

Two days later I was back in the ER for more fluids and tests. This time I was put on a drug combination of Reglan and Benadryl. The Reglan to help with nausea, the Benadryl to help counteract the side effects of the Reglan. I was so tired of being sick at this point, that I didn’t even question what these side effects could be.

“Reglan can make you a little restless.” The doctor had said.

Well, it did. But it was manageable for the first day. I felt uncomfortably wired, but the Benadryl took the edge off. But that night I barely slept. I had the worst Insomnia of my life. The next morning it only got worse.

I started feeling incredibly anxious. I didn’t feel like myself at all. I could feel every racing beat of my heart pounding against my ribcage and rattling my entire chest. I couldn’t focus on anything, I couldn’t stop moving. I felt like I was dying.

It turns out I was having a severe adverse reaction to the Reglan. My heart rate continued to run high and my body was going completely haywire. It was worse than anything I have ever felt, including from Steroid Infusion Therapy, which anyone who has had done can tell you is not a ride in the park.

I was scared before, now I was terrified.

I ended up being admitted to the hospital due to the extreme adverse reaction to Reglan. Luckily I was able to go home the next day. It’s been four days since I last took the Reglan (and I only took it for one day) and I am still having waves of extreme anxiety and racing heart, although less frequently and intense each day.

It turns out this is not an unheard of reaction to the drug. Although uncommon, it can cause this type of response in some people. My chart now has Reglan listed under my drug allergies.

These past two weeks are a blur of pain, fear, stress, anxiety and tears. I’m having a hard time moving past these painful memories. I know that it is in the past, and that I will never take that drug again so I will never have that reaction to it again, but I am still scared.

It is hard to admit that I am shaken, that I wasn’t able to just bounce right back like I usually do. It’s not easy to talk about things that caused such pain. And it is definitely not easy to look this kind of anxiety in the face and tell it to fuck off.

But admitting I am scared is nothing to be ashamed of as long I don’t give up. As long as I keep my head up and keep moving forward. As hard as the past two weeks have been, I did make it through.

I proved to myself that my body and my mind are strong. No, they are not perfect. But they can take a few punches and stand up again. I might not stand up gracefully, or quickly but I will  stand.

So with shaking hands, but a determined heart I look forward to a new week full of smiles, healing, positivity and growth.

-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.

 

Moments of Silence

Moments of silence, moments of peace

I live for them as they recharge

My internal battery that always seems to be running on empty

Another thing I can chalk up to my disease.

 

Life can seem so hectic, even when you’re standing still

The moments become memories right before your eyes

It doesn’t matter if you’re moving too

Even if you cannot move the world certainly will.

 

My hands smell like a hospital or a clinic room at best

Sterile and clean in a way that bites my nose

And there are bruises on my arms

And the rest of me is waiting for the results of all those tests.

 

“Please make a fist, now I’ll just find a real good vein”

I’m a pro at this, I think, I’ve done it a thousand times

But I still look away from the needle, and don’t look right at the blood

It seems the only thing I’m really used to is the pain.

 

The blood is gone, the tests are done, and the pee is in a cup

Now I wait here wondering if I’ll get a phone call like before

One that changes life forever, or shocks me through and through

One that makes my blood run cold or tells me time is up.

 

But as I sit here on the deck, my dog sleeping on my feet

The sun shines down on both of us warming up our souls

I smile and enjoy this moment, and appreciate my life

Because these bruises are my armor against any fate I meet.

 

All the pain in life has lessons, if you look just close enough

All your suffering will make you brave and strong

So, do not let your heart grow heavy, and never think that you are weak

For the times that were so hard on you have made you really tough.

 

A day in my body, one that is tired and autoimmune, will teach you many things

It will teach you to stand strong, when the foulest winds will blow

It will teach that you have courage that you never knew before

It will teach you to see the joy and the beauty that life will bring

And most of all it will teach that you can fight

and you can get through anything.

-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