Laundry

I remember back in the first weeks (late May) that my laundry changed.  I was washing sheets and pillowcases and blankets but hardly any clothes for Big Guy.  It was strange --a whole category of clothing just stopped appearing.  Work shirts and jeans and socks were missing.  The first week or two I washed a couple pairs of pajama bottoms and shirts. Today was a normal laundry day.  BG is up and around and things seem more normal.  The laundry tells me things have shifted a lot.
Another first.  Today is the first time BG has taken son2 anywhere since early May.  They went to get an oil change and a sub.  One of the things that fell away with BG's MS was son2's first MLB game.  They were going to have a big day.  Take the train in to the city and go to a big game.  They had planned it and were looking forward to it. Of course going to the game was impossible. Not only that I wondered if BG would ever go to a game again.  Or even play catch with son2.  But this week he played catch twice.  It has been nine weeks since this whole thing began.

Work and Play

We have come a long way since the middle of May.  We reached a few milestones this week.  Big Guy worked for the first time on Wednesday and Friday with Son1 as a helper. Yesterday, all four of us went together to swim and have a cookout.  Big Guy drove.  I can tell that today will need to be a resting day after such an active week. I am making progress in shifting my view of Big Guy as a sick person (sick in bed!) to a person who can go do normal stuff some or most of the time.  This has been a big challenge.  I can still see that IV pole in our bedroom and imagine him peeing in a bottle.  But BG is so much more than his MS.  I need to work on how to shift appropriately from someone in a nursing type role to someone in a spouse role.  I usually have a foot in each role.  I am aware of watching, monitoring, analyzing.Thinking about the medication. Watching for injection site reactions.  And of course we get calls from the special pharmacy and the Rebif people so there is no way to "forget" what is going on in Big Guy's brain.

Rebif: BG has two more 22mcg injections before moving up to the maintenance 44 mcg dose. So far the injections have not been too bad.  BG refuses to let me do any, so I guess I'll be on duty for that if/when BG is  too sick to do his own.  I know one thing.  I'd much prefer to do straight injections but BG can't stand the sight of a needle.  He is also resistant to using parts other than his stomach for injections.  I'm sure he'll need to rotate more over time.  A caution to those of you using the Rebif Rebiject II. Remember the step where you remove the cap from the syringe or you may end up with a dose of  medicine on your floor.  Yes it happened here.  Even though you may not think you need it, use the flip chart of instructions every time for a while.  If you are nervous, tired or rattled, you may make an error like this that you would never normally make.  BG is a perfectionist and has no problem with gadgets and tools.  Yet he screwed up. I was trying to relax and deal with my own general anxiety at the time (hot pack, eyes closed, Meditation Oasis guided relaxation on iPod) when I heard a lot of swearing!

Progress

This morning Big Guy got up before 10 (amazing on its own), showered alone, got dressed, got his tea and drove to meet a friend for a bagel.  This is major progress.  BG is frustrated, though. I think he is now close enough to near normal functioning to be able to taste it.  But he can't quite get there yet and honestly, may never get to where he was before this  7+ week episode.  Sleep has been one of the biggest problems.  Ambien will get him to sleep, but then he can't stay asleep.  Ambien CR last night seemed to do a better job!  We never know whether to call the neurologist or the pcp for help.  So sometimes we call both. 

This morning I asked BG don't you hate it when you start writing something important with a pen and the pen stops working? He said he hates it when he tries to write with a pen and his hand does not work.

During this episode BG has probably eaten 15 watermelons.  Watermelon seems to revive him and he even gets it in the middle of the night.  Our compost pile abounds with watermelon rinds.  I wonder if I will ever cut a watermelon again without remembering this time.

Solu-Medrol

Big Guy had five days of IV steroids at home ending 2 weeks ago tomorrow.  Each day he got 1 gram in a 250 ml bag, dripping for an hour.

Out For a Drive

Today Big Guy and I actually went out for a drive.  BG drove and possibly drove better than he used to since he was being more careful.  I expected to be terrified.  Instead I found that the simple pleasure of going for a drive with my husband on a sunny summer day was mostly just that. A simple pleasure.  But it was still strange to shift my role from caregiver to person in passenger seat.  In fact my role shifting during these past six + weeks has been a massive challenge for me.  In any moment in my family  I might be wife, friend, nurse, mother, cook, administrative assistant, sounding board, advocate, driver, shopper, pee bottle holder, crisis manager, medicine giver, shampoo dispenser, and more to three people. And a dog. I was being driven down country roads today by the very man who could not lift his head a few weeks back. We are moving in the right direction.  We even have moments when  for a second or two I almost forget the MS. 

Driving the Car

Thank goodness my mother was here when Big Guy decided he wanted to try driving for the first time in 5.5 weeks.  He drove in the yard first and then went out for a spin around the block. And he came back in one piece and so did the car. He also showered and shaved! The only help he needed was for me to squirt the shampoo into his hand and dry off his back.  We are making some slow progress over these last few days.

Tonight is a Rebif night.  Last night I found a red spot with a black center which looked like a tick on BG's belly.  He swore it was not his injection site from Monday but after I wiped it gently with a cotton ball with alcohol and the black thing came off, I believe he is mistaken.  I am freaked out about ticks with all the reading I have done about neuro Lyme.

Improving Slowly?

OK.  Last night was BG's first Rebif shot without a nurse present and he did a great job. He is using the Rebif II Autoinjector.  It did not hurt a bit.  He used a spot on his belly, noted it in the Rebif Journal, and went to sleep.  No obvious reactions at the site. 

Yesterday BG came out at dusk and walked unassisted around the yard with faithful dog!  That was huge.  The day before he showered, sat at the table and told a story sounding like his "old self," and then actually went out and got on his beloved lawn tractor (scaring the s**t out of me) and mowed for 20 minutes. (These days if he is anywhere but in bed or the bathroom I am shocked.) He was exhausted after that.  But it was wonderful.  Is it the effects of five days of 1000mg IVSolu-Medrol last week? Is it the Rebif? Is it just the natural course of this hellish episode? I don't know.  But I see a positive trend. 

One thing is certain.  This is slow and this is unpredictable from hour to hour and day to day. Maybe this is one of the lessons of this stupid disease.  One must be patient each moment and deal with what comes.  Each moment may present a disappointment or a gift or just more of the same.  We must cherish the gifts and breathe through the rest. To me it feels like an emotional  marathon.  I just can't maintain hyper stress for this long.  My body can't do it.  Our family can't do it.  We need to learn a new way to be which as strange as it sounds, requires us to relax emotionally around the MS. To find some peace with it, in spite of it. 

The Rebif nurse came

BG is finally on a disease modifying medication for his MS! The Rebif nurse was great.  She helped us both practice giving injections with the autoinjector and I practiced with the syringe in case I ever needed to do it that way. So far BG has not had any of the flu-like feelings that can follow a dose.  He will be injecting 3X a week with a dose that builds gradually (titrated dose) so his body can become used to the medications.  More on Rebif later.  The night before last I finally reached the end of my rope with a night of panic and horrible feelings coursing through my body. I had felt the panic coming for a few days but I always think I'll be OK because I usually am.  So I went to MY doctor crying and shaking and afraid. I guess my biggest fear is waking up with a middle of the night emergency and no other functioning adult in the house.  I was afraid to sleep, couldn't get to sleep and was waking super early (constant vigilance!). Have also lost 10 lbs. I hate going to the doctor.  But she was great with me. Last night Big Guy was walking and talking a little better ( is the Solu-Medrol finally working?) but I m afraid to get too excited.

Caregiver Fatigue

We are five weeks in now and I am starting to feel crazy desperate and have very little hope day to day of any improvement.  Lying awake worrying about what will become of us.  Neurologist gave us reasons for hope but our appointment with him seems so very far away now as we slog through our real MS affected lives.  I wonder how much our brainy doc knows of the trenches.

BG does not act, look or seem better to me. He is still detached from the goings on in the house.  He got up at 3AM and staggered into the kitchen for watermelon and the words drunken sailor popped into my mind. (I was awake with son2 who had a belly ache, and never did get back to sleep.) In fact, over the past few days his walking seems to me to be worse.  In spite of all that, BG did say...he does not want to jinx it... he might feel a little better today.  I am not sure what that means but I know this: MS is a crazy disease.  An exhausting disease.  Big Guy has slept and slept and slept. And I am fatigued beyond description by the worry, the tests, the phone calls, the googling, IV stuff, the fear, the constant vigilance, the utter disruption of our life rhythms.  By caring for and worrying about the kids.  By trying to hold things together, to get food, to keep the laundry going and all of that. And the loss of my partner as a functioning person who could help with a sick child. 

How We Walk with MS

This whole horrible episode began five weeks ago tomorrow.  It began as what we thought was a reaction to Flonase.  A short, bad headache.  Diminished sensation on the right side of the face.  Altered sense of smell and taste.  But the biggest change came four weeks ago yesterday morning at 3AM.  BG could not walk and was puking his guts out.  It was horrible.  Later we called it vertigo.  We talked about balance problems.  But that first day he could not walk at all.  He was shaking and dizzy.  I held a bottle for him when he needed to pee. 

When BG finally walked he did it holding on to my shoulders, pitching to the right. He still does that some days. I have become a walker for my 200+ lb husband. Today was another unsteady day.  Almost as unsteady as that first week.  So we walked together. We had to go get blood drawn.  Then we visited the neighbors. We walked across their lawn and sat on their porch! BG had a shower before we went out and shaved so he looks less like Grizzly Adams and smells better, too. 

Sometimes I miss BG so much as he is in a weird world of sleep and feeling crappy. He is in bed most of every day.  I'm sleeping alone so I can sleep at all.  When BG puts his hands on my shoulders to walk I feel his warm touch and feel connected again. It is horrible, but also, in a strange way, nice. So that is how we walk during this MS episode that seems like it will NEVER end. Like we are playing choochoo or attempting the Bunny Hop.

I earned my IV badge today

Today the Big Guy has been in bed for four weeks. He has Multiple Sclerosis.  I can't believe I am writing this.  My husband has MS. Today it has been four weeks and 5 days since his symptoms began.  And today  I earned my IV badge.  (I am envisioning myself as some sort of 40 something girl scout with imaginary badges.) We just finished day five of Solu-Medrol at home. We did the last dose and then I pulled the IV out (it's a little plastic thing!), slapped that gauze pad down, taped it up and marveled at the amount of arm hair stuck on the IV tape I had removed.  I watched a video on YouTube first.  So, of course I felt completely confident!

The nurse came and got us started on Wednesday with an IV and a few quick instructions about alcohol wipes and drip rates and saline flushes and Heparin chasers.  The she left us, steroids drip-drip-dripping down the tube and hope in our hearts. No problem. Each day I had to get psyched up to do the IV thing.  My hands shook.  I had jelly legs.  Not because I am a squeamish person but because it feels so bloody wrong for me to be in this role.  Who am I to be adjusting a drip rate? Why is anyone trusting me with flushing a line? What if something terrible happens? (Oh wait something terrible did happen, demyelination happened.)What if I do something wrong? Now this five day experience is over.  Who knows how many IVs lie in Big Guy's future.  In our future.  BG's diagnosis was less than a week ago.  Rebif is on the way, in an Omaha Steaks type container I guess. Please Solu-Medrol, do good work and help my BG get out of bed.