I tend to find time to share my thoughts when I’m feeling good, and positive and strong.  I’m feeling none of those things today, but in an effort to share my MS journey, I thought it would be fair to share a day like today.

Last night was my third injection and while in certain ways it’s getting … well, easier? … the dosage is also getting larger, and therefore, unlucky for me, the side effects are getting stronger.

Today I’m tired, and discouraged … and oddly, overwhelmingly sad.  Anyone who has struggled with depression will understand the feeling of … well, almost helplessness in controlling your own emotions.  Every part of my body hurts ~ like the pain of a good workout, but not good … like the flu has invaded every muscle, every joint … every sensitive nerve ending in my skin.  I’m hot, I’m cold, my jaw aches, my head aches, my eyes burn.

It has taken incredible effort to do normal, everyday things.  Getting up, making smoothies, taking Lucy out … showering, dressing.  All of it feels earth-shatteringly difficult and tiring.

That’s the thing ~ the exhaustion is all-consuming.  Even with proper sleep, and diet and exercise … I am constantly in a state of nearly debilitating fatigue.  It’s enough to make a person depressed even without all the other fun elements of MS.

So that’s today for you.

Today was an interesting day.  The man and I did some spring cleaning (it was necessary ~ piles seemed to be accumulating in all sorts of places in our house, filled with things we felt vaguely indifferent about … not very motivating during the gloom of January and February) but we also ran a bunch of errands. For a misty, bleh Saturday, I felt incredibly energetic.  Possibly due to the insane amount of vitamins I am now taking on a daily basis.  I told the man that I am going to write a comic book about a heroine whose super power comes from vitamins & green smoothies.

“Like Popeye and spinach?” He said.  I nodded, feeling slightly deflated that my idea wasn’t as genius as I originally thought.  But I still like it. 🙂

It was a good day ~ a normal day ~ and I revisited some of my posts from January and smiled to myself because even now, I’m feeling much more positive and upbeat.  And trust me, I am more than nervous for my nurse visit, and self-injection tutorial.  Shivers.  Down my spine. Ooooh boy.

As a reward for getting so much accomplished today, the man and I are treating ourselves to a movie tonight ~ “Silver Linings Playbook”.  I used to make an effort to see all the Best Picture Oscar nominees pre-ceremony, but have fallen woefully short the past few years (and since the rules changed and the number went up!).  This year, the man has generously indulged my addiction, and this is the fourth nominated film we are seeing.  We clearly won’t make it to nine, but last year, I don’t think I saw a single nominee in any of the big categories, so I’m very excited.

Usually we have some people over for the ceremony, but we’re going low-key this year.  But I’ve still got a meal planned, fixings for chocolate covered strawberries and fake bubbles (we gave up drinking for Lent).  I’m in a blogging kind of mood, so I will share all the details tomorrow, after church.  For now, we’re scooting out the door to catch our movie.  Hope you have a great Saturday night, too!

This morning, the last thing I wanted to do was get out of bed.  The weather was gross (although the snow was momentarily very pretty, and Miss Lucy loved it, as usual), the weekend was too short, and my work week seemed to loom ominously before me.

But, as usual, up I got.  I finished my course of steroids on Friday, so I’ve been flying solo for three days, and luckily, my flare symptoms seem to be under control.  I spent a little bit of time over the weekend beginning the research my doctor assigned on the various drug treatments for MS, as well as exploring some other dietary options, and reaching out to a few people I have been connected with who also have MS.

It’s pretty easy to read about lifestyle changes, and adopting new diets ~ it’s a whole different kettle of fish (can I just pause for a moment, and say that this expression always makes me think of “Anne of Green Gables” ~ a book I believe all young women should read ~ I think of it with such love and affection, and periodically revisit the ear-marked pages of my old paperback copy … such a beautiful and enchanting story) to actually do it.  I have been struggling with this.  A lot.

Many things I’ve read have shown that diet is an important part of living with MS.  We’ve started being much more consistent about our Green Smoothies (every morning!) and we have eliminated gluten (slightly more challenging but we’re working on it).  I was referred to another diet completely associated with coping with MS called the Swank Diet, which restricts fats and animal protein.  Some people believe a raw vegan diet keeps flares at bay.

Figuring out how to give up meat (red or any other kind), dairy and basically, carbohydrates has been such a learning experience.  When I first considered it, I behaved a little like a petulant school girl.  But as time has gone by, with the support of the man (and my pescatarian puppy, Lucy) I’ve stopped being childish, and embraced the idea.  I repeat, the idea.  The practice is much more challenging.

So, John suggested I try finding recipes I find appealing without classifying it as either ‘vegetarian’ or ‘gluten-free.’  And I am excited to say that I have three recipes I am fairly bursting with excitement to make.  Watch this space.  Hopefully they are all good!

I think what I’m learning ~and I cannot emphasize this enough … the hard way (if I didn’t feel motivated to protect and preserve my health I might not be so determined) ~ is that for me, making these changes has to be one baby step at a time.  I know that what I’m doing is for the best in regards to my health and future.  And I also know my baby steps need to be in fairly rapid succession.  There isn’t time to waste.  But this is hard.  And it’s way harder every day than it is in theory, at the beginning.  It’s about making the changes, and establishing the routines. And sticking to it.  And not making exceptions.  And it’s really hard.  So, welcome to week #2.

This evening, the man, Lucy and I are curled up on our couch, watching the third episode of “Downton Abbey.”  I am enjoying some delicious spoonfuls of Nutella, following a quick meal of quinoa, roasted cauliflower, pesto and meatballs.  Don’t judge ~ I believe that Nutella can cure most ills.  And the quinoa dish ~ one of our new favs.

In my experience, day #2 is always a slightly more bitter pill to swallow than day #1.  Here’s why (my opinion only, of course!) ~ sometimes you feel very brave and strong and unbeatable that first day.  And then you go to sleep, inspired and full of well-meaning and ideas, and the next day dawns, and the truth settles into your bones … the real reality.  And it doesn’t feel exciting or stimulating, or inspiring ~ it feels overwhelming … a little like an insurmountable obstacle.

Today, I felt it was important to share my news with my extended family.  It didn’t feel responsible to give that burden to my parents, so I did my best to construct an email that let everyone know what was going on.  It’s funny, because I had all sorts of ideas of things I wanted to blog about today (green smoothies, the power of nutrition, etc, etc) but really, it came down to the response from my family.  It was overwhelmingly positive, which was reassuring.  But it was also the sort of ‘stiff upper lip’ stuff so intimately familiar  and comforting that I associate with my British family.

Life hasn’t been especially easy since July 2012 ~ my first MS symptoms reared their ugly and very unwelcome head, but my mother was also given quite a serious diagnosis (which is not my business to share online) so for my immediate and extended family, I am sure it has been something to get their heads around.  Everyone has trials and tribulations, highs and wallowing lows ~ but we have definitely shouldered our burden for the past six months.

It’s hard to know what to say when someone presents to you their bad news. My family did an admirable job of being a beautiful combination of loving, sympathetic, supportive, upbeat and realistic.  I have to give them credit, because it is not easy to be on the receiving end of the email I sent.  I have to give a special shout-out to my brother’s lady love, whose response (restricted by twitter’s 160 character limit … and man, she’s a pro) was my favorite.  Yes, I am admitting bias.

Tomorrow will dawn day #3 .. and the further in we get, the more the novelty wears off, and the reality sets in.  I hope that as time marches on, I don’t lose my focus and my drive, my idea of staying positive.  It’s a new challenge, and there is no guidebook.  It’s just the man, Lucy and I, figuring it out one day at a time.

About eleven days ago, I began the following post (below in italics ~ we’ll get there).  I wasn’t sure I was ready to face the real truth of what was going on, but throughout my life, I’ve found writing to be an excellent outlet.  I wrote that day ~ but faltered, and haven’t been able sit down and write again.  Until today.

Now, as I sit on my couch, drinking gluten-free beer and watching “Grumpy Old Men,” (is there a better combination to combat life-altering news? I think not!) I am contemplating the idea that this moment, this information ~ it offers me a path.  Now, the path would not have been obvious had a doctor not told me matter-of-factly at about 1.45pm that I have a non-curable chronic disease ~ but pish posh, right?  Can’t turn back time ( although I do love Cher’s song contemplating the options if one could).

If you can’t tell, I’m a little punch drunk, and a little bit loopy.  Deservedly so, I say, having spent the better part of 2013’s early days in and out of doctors offices and diagnostic testing.  At least now its been said ~ it’s done.  And I can take that information and run with it.

Folks, I have multiple sclerosis.  Fact.  January 21st, 2013 is the first day of the rest of my life.  I do like the number 21, so I’m okay with it, I guess.  Always looking on the bright side ;)!

I had this moment today ~ when I called to schedule my follow-up appointment following my most recent round of MRIs ~ that I thought maybe the same news would come that came in July ~ no signs whatsoever of any lesions.  In retrospect, that was probably fairly wishful thinking (the symptoms have been much more intense for the past three plus weeks).  But if we can’t be wishful and hopeful, what’s the point?

So, eleven days ago … I wrote this.

“So, here’s the thing.  Yesterday, when my home nurse was visiting, she pretty much distilled what’s going on in  my life down to one sentence.  She said, ‘After the sadness, and the anger, and the feeling-sorry-for-yourself feelings pass, remember that it’s a life-changing diagnosis, not life ending.”

And even in the microcosm of yesterday, when my mind raced up and down the mountains of possibilities and fears and all manner of other things, that one sentence was worth remembering.  And remembering often, and with conviction.

When multiple sclerosis was first mentioned as a possibility, back in July (remember that month? yeah, it sucked), I wasn’t really ready to admit the truth of it.  I was completely convinced that my case of optic neuritis was one hundred percent not a pre-cursor for MS.  Naive, perhaps.  But I think anyone who receives what feels like, and on many levels is a pretty dire health diagnosis has to work through the denial and the fear and all the other feelings that come bubbling to the surface of your conscience.”

So I got stuck after that, because there was no end, no neat ribbon to wrap things up with ~ no pithy or witty thoughtful query.

It was true, and raw, and real and … well, scary.

I googled MS and read some really not uplifting stories of other people who thought what I did ~ my eyesight was a detached retina, nothing was wrong with me, I was healthy … etc, etc. etc.  And over the past eleven days, as I geared up for the inevitable diagnosis, I began contemplating how I was going to choose to deal with my new life path.

So far ~ and I’m not far into this at all ~ but, so far, I’ve felt a little bit alone, and as though while everyone has a friend, or knows someone (and thinks I should talk to that person/call/consult, etc) ~ the people who are writing about their experiences are less than upbeat.  (** Sidenote, I am not the most tech savvy or google-happy person out there, so I guarantee I have not read it all, or even close … Sidenote x2 ~ Montel Williams information was by far my favorite and most encouraging to find).

And I get it ~ when I started to lose feeling in my feet (amongst other, not-ready-to-share issues), and then slowly realized that getting it back would not occur with a magical pill ~ it was highly discouraging.  And the truth is ~ from the little I have learned ~ MS is pretty unique to each person.  Everyone’s symptoms and cases are individual and manifest per person.  So no one’s story is going to answer my questions, or completely assuage my fears.

I said to my mum on the phone today ~ for a person like myself who has always existed in a black and white world, it’s wildly ironic that I got a disease that exists only in the gray area.  I want rules to follow ~ I want a sequence of steps that will cure things … but MS doesn’t work like that.

Having an answer ~ even a very dreaded answer ~ eases some of my anxiety but it opens up the door to the unknown.  How will my life change ~ what are my next steps?  My neurologist gave the man and I a stack of information on various drugs that we have been tasked with researching and exploring before our next appointment.  I’ve already decided the one I like (packaging is everything ~ and whoever did the packaging for my new meds definitely knew the way to this girl’s heart … haha!  I am certainly not going to choose life time medication via packaging … but it does give one an edge!).

What I’ve been contemplating is that documenting this  journey ~ beginning today ~ may be a way for me to work through all the unknowns, but also potentially allow me to reach someone else who is struggling and scared and unsure.   Who knows.  Maybe even reaching myself will be enough ~ goodness knows, I’m struggling and scared and unsure.

Here are the facts ~ I have brain and spinal lesions (aka, my immune system is mistakenly attacking my nervous system at various spots).  I have been on high potency IV steroids to calm the ‘flares’ since last Friday (nothing teaches you what you are capable of like injecting yourself with meds, saline and blood thinners) and I will most likely be on self-injected medication for the rest of my life.  Pretty heavy stuff for a thirty-three year old woman who has a list of dreams she hasn’t fulfilled yet.

Here’s how I feel.  I refuse to choose to be ho-hum doll drum about it.  It sucks ~ if anyone has the audacity to contradict me on that, please.  Lemme know your ‘genius’ logic.  It sucks, and that’s that.  But it doesn’t have to suck every second of every day, and I refuse to believe that there aren’t strong, proactive choices I can make to lead as normal a life as possible.  I have been given the gift of knowledge regarding nutrition and the benefits of dietary choices and fitness choices that have been shown to help others suffering from MS.  That, in and of itself, is incredibly encouraging.

Welcome to my new blog, and my new journey.  I’ll see ya tomorrow.