The Fall

Sometimes I forget that I am sick

My days fly by in flashes of orange and pink

I feel good, I forget that I have limits and I forget what is inside of me

I just feel normal.

And then I fall.

Walking down the stairs like I have done one thousand times before.

To a twenty-five-year-old the hand rail seems more like decoration than necessity.

Until my feet fall out from under me and my stomach drops

It seems to hit the ground long before my body does.

My phone goes flying across the room as my hands forget their previous task and grasp frantically at the underappreciated railing.

Water soaks into the carpet, and the dropped glass winks at me from the top of the stairs where we both fell, daring me to smile through the pain.

Sometimes, I forget that I am sick.

I don’t remember that my body cannot do some of the things it used to

My back hurts from the fall last week and my arms are speckled with bruises like an overripe pear.

I don’t forget to use the hand rails anymore.

When I look in the mirror, I see the same girl I’ve always known

I don’t see the lesions and I don’t see the pain.

Invisible Illness. That’s the name of my game.

The dark circles under my eyes

and constellation of bruises are all I have of physical proof.

I learn new things like to hold on tight when I am going down the stairs,

to rest when I am weak, and to cherish when I am not.

I remember to go slowly; my body can’t always keep up with what my brain has in mind.

I learn to laugh at the falls, and to not worry about the mistakes that I make.

Sometimes I forget that I am sick, but I never forget that I am strong.

-A

Brave

What do you think of when you think the word ‘Brave’?

Do you think of knights or warriors or heroes in capes?

Or do you think of everyday people of all sizes and all shapes?

 

Brave is waking up each morning, willing to face the challenges of the day.

It is looking your problems in the face, but never backing down.

It is letting a smile sneak through when all your heart can do is frown.

 

Brave is walking through a valley of fear and doubt and pain.

It is silencing all of the ‘what if’s” smacking around inside your brain.

And somehow calming the restless and anxious soul and letting a racing mind unwind.

 

Brave is showing up to the doctor’s appointment

Even though you are afraid of what they might find.

It is learning to leave the demons of your past behind.

 

Brave is taking a deep breath in… and letting it out again.

Brave is admitting when you need help, that you can’t do it on your own.

It is making it through the night when it’s dark and you’re all alone.

 

Brave is smiling through the tears that are streaming down your face.

And cracking jokes in hospital rooms to ease your loved one’s fear.

Brave is accepting words of help, even when it’s not what you want to hear.

 

Brave is pulling yourself back up to standing, after you’ve taken your hundredth fall.

It is not beating yourself up for the times you showed your pain.

Brave does not mean that you are not scared, that your heart does not race,

and your hands don’t shake, they do.

 

Brave is feeling all of the fear and stepping forward anyways.

Brave is one foot in front of the other, one step at a time.

Brave is being patient for the change you need, trusting that the stars will align.

 

Brave can look at you with fear in her eyes, a quiver in her voice.

Brave can break down and be a monstrous mess

But brave knows that eventually, life will coalesce.

 

Brave is the woman at the clinic, or the man who limps slowly down the street.

Brave is the family in the waiting room, or the patient in the bed.

Brave is the battles we have won in the past, and the ones that lay ahead.

 

Brave is falling into bed after a hellish kind of day.

And telling yourself that even though it was so hard, it’s going to be ok.

Braving is reminding yourself that tomorrow is a brand new day.

 

Brave doesn’t always shock and awe.

Brave can be quite simple and quite small.

And sometimes those little tiny steps are the bravest of them all.

-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

MS, Sushi and Heating Pads

I just want to thank everyone who reached out to me after my last blog post where I talked about the discomfort I have been feeling lately. Learning to trust my body again Hearing people who have experienced the same symptoms share their stories with me is so comforting.

Another thank you to those who reached out with words of comfort, or just letting me know they are sending good vibes and prayers my way. All of these things are like medicine for my soul!

MS can feel really lonely at times. I know that I am very newly diagnosed, but I already have felt the loneliness and loss that comes along with the diagnosis. I’ve felt it when I have been too sick or too fatigued to attend a social outing with friends, I have felt it when I have to leave a dinner or hanging out with friends and family earlier than everyone else because the room is spinning and I am afraid of getting sick in someone else’s home. I am afraid that some day the invitations will stop coming. Just because I don’t end up going out doesn’t mean that I don’t want to. I truly appreciate the invitation. It means you haven’t forgotten me, that you still want me around (even though I might not be my usually bubbly, outgoing self some days), it means you haven’t gotten bored with me always being sick. So thank you.

Today I went out for lunch with my sister and two good friends for her birthday. We had sushi and it was lovely. I have a lot of food allergies (wheat, soy, nuts, sesame, dairy) but praise the lord, I can still eat rice, seaweed and fish! Yes, my options are a bit limited and I have to make sure the restaurant can accommodate my sesame allergies before ordering, but I still get to enjoy a good salmon roll every now and then!

It was great to catch up with my sister and our friends. It was one of those moments where I forgot I had MS and was just enjoying myself. I also treated myself to a manicure today as my husband and I are getting photos taken together tomorrow! I can’t wait! I’ve never had professional photo shoot like this and it’s not supposed to be too hot tomorrow, so it should be a blast. Lastly, I stopped at the local Chuck & Dons and got my dog a new bone. He’s a 100lb german shepherd/husky mix and it’s been raining for a whole day so I figured I would do us both a favor and get him a rainy day treat 😉

I am still experiencing some issues with muscle pain and tightness (I think I’m receiving a nice little “hug” from MS) but I went to Target yesterday and got myself an electric heating pad for my back and that thing is a miracle worker! My issue now is that I am in a constant battle of giving my back some relief from the pain and getting too hot and making myself feel fatigued and loopy. So I am alternating between the two. I can’t complain, at least I found some temporary relief for my back pain! Now I just need an ice pack to cool myself down!

Now for the stuff that really matters: Sparrow Mom and her babies have taken the great leap of faith and flow from the nest. It’s so touching watching my little fluff babies grow up and fly off to live lives of their own! I have put a “for sale” sign in the African Daisy’s and am currently accepting applicants for a new tenant. Rent free, just no eating my succulents!

 

 

-A

 

 

 

 

 

Learning to trust my body again

I haven’t been feeling well this week. For the past few days I have had a huge spike in my fatigue. The kind where just taking a shower or putting a load of laundry in the machine leaves me feeling sick and ready for a three-hour nap. I can feel that I am weaker than normal and have been losing my balance and getting spells of dizziness and nausea.

I’ve also been experiencing a new feeling that I can only chalk up to Multiple Sclerosis. It feels like my diaphragm and muscles around my rib cage are squeezing my whole torso like a python. It doesn’t really affect my breathing as much as it is painful. All the muscles wrapping around ribs and back just hurt.

I’ve tried to ignore it and just deal with it, because what else can I do right? There’s no way to tell for sure why I am feeling this way besides the fact that I have Multiple Sclerosis. I’ve heard of the MS Hug and maybe I am experiencing some version of that?

Last night as I was scrolling through Pinterest and I came across a map of the spine and what each part of it controls. Suddenly, I started putting something together. A few weeks ago my MRI came back with a new lesion in C4. When looking at what the nerves in the C4 area of the spine control I found that sure enough, it’s the diaphragm and muscles around the lower rib cage!

I couldn’t believe it! It made so much sense! Before I even knew it my body was telling me something was wrong in a very specific area. I just hadn’t put two and two together. It made me feel good to see that I wasn’t just imagining this pain and discomfort.

It’s such a hard feeling to describe to people and so often I question myself as to whether or not pain/discomfort is MS related or just the normal aches and pains that people feel every day. Then I remember I am a 25 year old woman with an autoimmune disease and and that it SO important to be in tune with what my body is telling me. It’s just hard to know whether something I am feeling is related to MS or not. But I am learning to trust my body again. To listen to her when she is telling me something is wrong. Because looking back, my gut instinct is usually right when it comes to my body.

I am on week two of my Glatiramer acetate injections (which are known to have virtually no side effects besides injection site irritation) so I am skeptical to think that I am feeling this yucky just from that, but again, who knows! 

It’s not always fun. Sure I would love to go out and do something fun with my husband on this beautiful summer night, but instead I will be probably be on the couch with my heating pad, weighted blanket and a good TV show getting the rest my body is begging me for.

So today, even though I am not feeling great, I am choosing to be grateful for those feelings. It means my body is doing what it is supposed to do and telling me what it needs. All I have to do is listen.

-A