My healing comes in steady waves.
So inconspicuous it could go unnoticed if one wasn’t aware.
Like the second hand on an old clock
I tick slowly on, in minute and determined movements.
The forward movement is so small it could go unnoticed by the naked eye.
Until you glance away, and back again, and see how far I have already come.
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
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
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.
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
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
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.
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!
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
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
I’ll remember that phone call most likely all my life.
The one that stabbed into my heart and stuck there like a knife.
I woke up with no feeling in those fingers and my toes,
With no idea what havoc those small symptoms could expose.
You see them in the movies, or hear about them in a song,
Those moments when your ‘normal’ ends and the seconds just drag on.
No one can prepare you for that moment, for that day
When you find out that you’re sick, and it will never go away.
I first react in fear and panic, in shock and disbelief
Numbly listening to the doctor, my hands shake, why can’t I breathe?
It’s “indicative of MS”, “ok”, “do you know what that means?”
“No, not really.” My voice shakes, my heart is racing, please help me.
Multiple Sclerosis is what the doctor then explained.
All I heard was that it was in my spine and also in my brain.
Something in my body wasn’t right, was really wrong.
It’s funny but looking back, it had been that way so long
I held myself together, saying “everything’s alright”,
Until I broke down in the shower later on that night.
My husband sat beside me, as we cried there on the floor,
Knowing that from here on out it’d be so different from before.
We were right, and things have changed a lot in half a year.
MS has put some things on hold, like having a career.
It’s hard to work when you cannot stay awake
And the slightest change in weather makes your whole body start to ache.
But It hasn’t all been bad, these lessons that I’ve learned.
I’m proud of all my bruises and battle scars I’ve earned.
I’ve grown, and I am learning to live in the moment every day,
To connect to life around me, and let my heart show me the way.
I married my best friend on a cold night in late November
A night of love and family that we always will remember.
Those around us showed support and an avalanche of love.
Love is something this disease can never get rid of.
I faced some of my hardest nights, have felt so vulnerable, so scared,
But I learned that when you learn to ask, someone always will be there.
Some days I feel my weakest, and some days I feel so strong.
Some days the world feels right and some days everything goes wrong.
I will continue on this journey, I will continue on his fight.
I will use the gifts I’m given to spread awareness and shine light.
We’ll find a cure and I’ll keep singing my fight song.
Do you feel as good as I do now?
Because this is MS Strong.
Alix in Wonderland 