A move. (written about a month ago, published today)

(written about a month ago, published today)

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So, here we are.  In my in-laws home.  We have moved.

Yes.  After the diagnosis we decided that with all the extra driving up and down to the city, we needed to move closer.

We bought land close to my IL's a few months ago and we are now planning to build a house.

It looks like we may have sold our house as well (post-script: we did - it's gone).

But we needed somewhere to move to before our house was sold.  And because we have two dogs and a cat, that is difficult.

My MIL offered some time ago for us to move into their house for the duration of the build, but I was hesitant.  They need their space and we need our space.  But my MIL is persistent, and she really wants to go travelling in their caravan, but they are tied to the house because of their youngest daughter.

Craig's sister was involved in a car accident many, many years ago.  She suffered a closed head injury and has been physically and mentally disabled since then.  She lives with and is totally dependent on her parents.  So my in-laws ability to travel is very much limited by her presence.

When we started having trouble finding a place to rent, we re-thought our plans to rent a house, and instead took my MIL's offer to stay with them seriously.

So here we are.  At my in-laws place.  They're planning on leaving on the first of their travels in 3.5 weeks.  I think my MIL is excited.  My FIL could take it or leave it, but he's needed to drive the car to tow the caravan, so he has to go along.

But of course, there are limitations.    Of course.

Highly Active MS

So I've had two half infusions.  That makes one "treatment". 

I don't really like to call it a treatment because it's not.  A treatment implies some sort of healing or treating, whereas this is just a punt.  Hoping that it will be successful and maybe slow or halt the lesions.

The lesions aren't slowing yet.  I've had three MRI's so far.  First one showed up lesions and led very much to the MS diagnosis.  Second one, three months later, showed new lesions.  Neurologist concluded I had "active MS".  Third one, three months after that, showed more new lesions.  Neurologist changed his diagnosis to "highly active MS".  And the Ocrevus hasn't done much yet that we can see.

Craig and I had our birthdays.  The big 5 0.  I didn't really know what to make of it.  It's kinda hard turning 50, having just been diagnosed with a disease like MS (with no knowing the cause, and not having a cure), with three dead children, and life just sucks really.  I mean:  what am I supposed to do?  Smile and play happy?  Coz that's what most people expect.

No-one asks me how I am.  No-one.  It seems everyone else is suffering more from my diagnosis than I am.  Because (apparently) it's very difficult for my mother and my MIL that I have MS.  Really.  It's apparently terrible for them that their daughter and DIL has MS.  Can you believe it????  I certainly can't.  Bloody drama queens.  And no-one seems to care how I feel.  No-one except Craig.  I think I'd kill myself if I didn't have Craig. 

I hate not having my own space.  I hate being tied to this house.  I hate that I can't just go away.  I'm hating pretty much everything at the moment.

What if the lesions keep coming the way they currently are?  What happens then?  One day I'll wake up and can't speak, or can't move my arm(s) or can't walk?  Or one day I'll be blind?  Or worse?  What happens?  Oh, yeah, but I'm supposed to be optimistic and hopeful.

Right.

This is it

This is it.

That's what I've been thinking the last few days.  That this is it.  This is my life.  This is it.

It turns out I've been waiting this last decade or so, since losing our children, for things to get better.  For life to get better.  Turns out that isn't going to happen.  Turns out that this is it.

I'm really pissed.  I'm really angry.  I wish it was all different.  But it's not.  This is it.

I guess it really is a good thing you can't see what's going to happen in your life.

This is my life.  This is it.

And it's shit.

Empathy, or lack thereof

For quite some time, I've noticed that most people cannot empathise.

Empathy is defined in the Merriam-Webster online dictionary as:  "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this."

Those who have lost children, like we have, will know that it is rare to meet someone who can truly empathise with you and your loss.  In fact, the only people I've met who can do so, are other loss parents.

It's been nearly 12 years since our first loss (Freyja) and still it shocks me how little people can or will show any empathy or make any effort to.

Having recently been diagnosed with MS has reminded me of this lack.

As with loss, when I mention I have MS, people are quick to immediately jump in and tell me about their friend and/or relative and/or neighbour and/or someone else who had MS and lived a "perfectly normal" life.  They feel that this is showing empathy.  They feel that this shows they know and understand.  Whereas of course it shows anything but.

My mother (typically) immediately reminded me that her biological mother had MS for most of her adult life (as if I needed reminding), so therefore she knew everything about MS.  This is despite the fact that my mother lived with her foster parents from age 5.  Also despite the fact that her biological mother died in the early 1970's.  But still, despite these issues, my mother knows everything about MS.  She knows all about the treatments available too (despite these not being available back then).  In addition, she had a friend, who very recently died, who had MS for many years and "lived a perfectly normal life".

In fact, my mother had nothing remotely sympathetic to say to me when I was diagnosed.  All I got from her was "well, you were expecting it".  That's it.  Not even a hug.  Not a sliver of empathy.  Nothing. Nada. Niks.

Even my MIL, who has shown more empathy than my mother has about my diagnosis, has been quick to point out that she has a friend (of course) who has lived a "perfectly normal life with MS" and has only recently started to have some minor issues.

There is such an incredible lack of understanding about this disease.  And yet it seems everyone is an expert.  The facts are that everyone diagnosed with MS is different.  Everyone's challenges with MS are different.  Some people do live fairly normal and lengthy lives, but others don't.  Others live with many challenges, and some live challenging and much shorter lives.

When I first mentioned to my sister that the MS diagnosis was a real possibility for me, she said "yes, Mum told me that you think you have MS".  I politely told her that actually a neurologist and radiologist thought I had MS.  I politely told her that they thought I had MS because of (i) symptoms which I had described to him, and (ii) evidence of demyelination shown on a MRI of my brain.  She seemed quite taken aback, and then told me that "Mum hadn't mentioned that".  It didn't surprise me that my mother hadn't mentioned that.  My mother knows everything about everything, including MS (because, after all, her biological mother had MS).  What did surprise me is that my sister took my mother's word as gospel without thinking to maybe check with me.  And, again, there was no empathy.  None.

I learned quite some time ago that people are all different.  The person we are at any one time is constantly changing and evolving.  As we experience different places, different persons, different cultures, different events, we become different people.

I guess the gift of empathy is one where we can look at all those differences and yet still be able to imagine and possibly understand what life must be like for someone else.  Someone who has totally different experiences to you.

The ability to imagine and understand without having experienced.

And that, I'm continuing to find, is quite rare.

You don't get over losing a daughter or a son.

There is no cure for MS.

Try to imagine that.

Pain

Since just before my MS diagnosis, I've been suffering from back pain.  Really, really bad back pain.  In fact, I don't recall ever feeling such pain before.  And it just won't go away.

The neurologist says it's MS.  He says most likely there's a lesion pressing or forming on my spine.  Even though my most recent MRI shows no lesions at all in my spine.

Lesions are what MS is all about.  Lesions forming on the brain or on the spine.

Of course there's no cure for MS, and so all treatment is aimed at stopping or slowing down the formation of new lesions.  My first MRI showed that I have a bunch of lesions in my brain and my second MRI (three months later) showed three new lesions.  That's bad, bad, bad.

But the pain is real.  And it's shit.  I hate it.  Yesterday I had a bad night.  Not much sleep.  Lots of pain.  I finally gave up and got out of bed to cry on Craig's shoulder.

It's shit.  I hate it.  MS sucks.  My life sucks.

And I found a study which indicates that parents who have suffered the sudden and unexpected loss of their children, are twice as likely to develop MS in the decade following their loss.  Guess what?  That's me.  Shit hey.

So because I'm (i) female, and (ii) spent my early childhood years growing up in northern Europe, and (iii) smoked as an adult, and (iv) had sudden and unexpected child losses, my chances of getting MS increased.  Who knew?

Life sucks.

Thank goodness my one great love never leaves me.  💖💖Craig 💖💖

Moments.

It's been a long time since I posted anything here.  But I'm finding the need to write again.

A week ago I was diagnosed with Multiple Sclerosis. 

I'm pretty devastated.  Every day I wake up and it's new in my mind.

Every day I think: why me?  I guess I should be used to thinking that.

What is it that causes shit to happen randomly to people?  Why is it that some people have more shit happen than others?  Why is it that some people walk their journey through life in some untouchable bubble, whilst others have nothing but bad luck?  I'd like to know.

My MS is pretty active.  I had my first MRI on 21 February and then my second on 21 May - three months apart.  The first MRI showed a whole bunch of lesions.  The second showed three new ones, and the old ones were still there.

We met with the neurologist who gave us the bad news.  The next day we met with a nurse consultant from the neurology team at the hospital who spoke to us about treatment options.  They are recommending an aggressive treatment.  We agreed.  I start next month.

So now I have to cross my fingers that the treatment works.  That the treatment will keep the lesions at bay, or, at least, slow them down. 

And, even though I've done this before, how the f*ck and I supposed to go through this again?  Where life changes in an instant?  That moment before the neurologist said "you have MS" and the moment after?  Like that moment before the sonographer said "there is no heartbeat" and the moment after?  That moment when you're peacefully sleeping and the next when you wake to find your child is dead?

These moments, they change our lives.

Not just my life, but also my husband's.

And yet other people, they just walk through life, in their bubble, with their living, healthy children, and complain about petty stuff.

These moments.