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

 

 

 

 

MS Strong

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.