Define Normal

Dec 30, 2014

I’ve now been home 5 days and I’m +20 days transplant.

I feel good, if not great.

Yes, I’m anticipating a *crash* but as with everything so far I’m just taking it day by day by day and listening to my body and we’re communicating pretty well right now.

If I need to rest, I rest.
I’m pretty good at that.

If I need to eat, I eat.
I’m very good at that.

If I need to stretch, I stretch.
If I need to walk a flight of stairs, I walk a flight of stairs.

If I wake before the sun rises and before anyone else is up and decide to walk to the end of the street in my pjs and a scarf. I’ll walk 1/2 a block.

OK I probably shouldn’t have done that.

But it was sooooooo nice, and fresh and peaceful after the rain.
I did take my phone with me ~ I’m not entirely daft.

I’m staying with my parents for at least the next 10 days.

For them and me the R&R post HSCT is a whole new world.

It’s different for everyone.

None of us knew how I’d be. Still don’t.

None of us knew how I’d be after the long long long long flight home.

Would I be bed ridden?

Would I be nauseous from any medication?

Would I sleep for 23 hours a day.

Would it be jet lag?

Would it be part of the treatment?

It was and is to some extent still is unknown.

We’re not treading on eggshells but we’re doing fine.

Cautious, but fine.

BTW if you’re wondering why so cautious as part of the HSCT treatment process we pretty much annihilated my immune system. If it was say a 10 of of 10, we took it down to perhaps a 2 out of 10.

If you’re ill, or have a sniffle. Please stay away. I’m not being rude, I just don’t want to end up in the emergency department.

It’s entirely likely thorough no direct fault, I’ll end up at the Wesley at some point, but I’m working to be home and healthy and as able bodied for as long as possible while I recover.

As for that recovery, technically I’ll be off work for another few (up to 4 or so months) but to rebuild my system and see the full effects that HSCT has had on me and my body will take up to TWO YEARS.

A few changes have already been noticed, less leg spasms, walking more confidently and stairs in single steps, not 2 steps per stair. Get what I mean. Anyhow… This is good stuff and my feet feel less spongey.

Brilliant.

These symptoms may come and go or exersabate over the coming days and weeks.

We just have to wait and see. Again.

FARK. PATIENCE.

Anyhoo…. Back to M&D’s,

I think I’m currently doing fine, but I don’t want to count my chickens before they bolt.

There are freaking Dettol wipes all over the house and pots of hand sanitiser and moisturiser. They have done an awesome job making their home my home.

Mum and Dad’s dog is around, but he’s keeping to himself and not jumping on me or invading my space.

Rules, rules, rules and fair enough I say.

Even though there’s a whole range of ‘normal’ food I can eat.

It’s just not typical summer meals of salads and cold cuts and definitely NO sushi, but you know regular stir fries, soups, roasts, bbq (steak and chops well done) etc with some grilled vegetables Mum and Dad have been expanding their repertoire and we’ve had delicious pasta bakes with pumpkin (yum), risotto etc…..

There’s just a few restrictions I have to work around. Nothing major.

We’ve also taken my medical appointments on together Mum, Dad and I.

We had my 1st specialist appointment yesterday with my Haematologist. Good appointment, blood work taken and all together a positive result and another appointment made to keep things on track.

Working the scarf on my outing to the specialist.
Steroids also do wonders for the skin… or did Dr. F do something else.
Time will tell. LOL.

Bye the way, who ever said just because you’re ‘sick’ means you have to look ‘sick’.

I was also prescribed a new round of drugs to keep me safe.

One of these drugs that I will also keep me out of the sun. An unfortunate side effect but hey, I’m not going to stuff all this up now. Pale is the new black.

Aside from now being almost completely bald, it’s also been noticed that I’m a little on the smaller side. I fit back into the FunSizeJaney realm. I’m eating but I like being little again.

If and when I gain a few kilos so it be. Currently, what my baby stem cells want, they get.

What has not helped but is ever so appreciated is that my friend who brought me an assortment of divine scarves, also brought me FOUR tubs of Ben & Jerrys Chocolate Chip Cookie Dough Ice Cream. FOUR.

There may or may now be 3.5 tubs. #justsaying

With only a little fuzz left on my head  and a shrunken pale body I feel like that baby from Ally McBeal, remember that?

Hooked on a Feeling (Video)

My brows are still in tact (awesome) and lashes thinned a bit, and I’m working the scarf as best I can.
I kind of find it comfortable even when at home on my own.

One additional unexpected blessing is that I no longer need to deal with the Brisbane Summer Humid Frizz!! WOOT!! Peeps, what are you complaining about. LOL. Don’t worry, I remember and I will be reminded toot sweet!

I have my hair and body moments and would love my hair back, but it will grow. It will take months, but it will grow.  And yes, everyone says it looks great short but strangely I remember my Gran saying “Your hair is your crowning glory”. She was a kind duck but with her blue rinse perm – hair style icon, who knows.

Most importantly hair I can deal with, body issues I can deal with. Active MS? I don’t have to deal with you again. Hurrah.

I’ve had a a couple of  visitors, all of which have pretty much been through the HAZMAT process so that’s been fab.

Otherwise days are spent online, doing jigsaw puzzles (in the GOOD room) and trying to keep busy if not napping. Strangely I’m on the laptop now, but I’m even making a conscious decision to do other things.

A gazillion messages also come in far and wide from friends, just to say “hi”. All of which are appreciated. I’m sorry if I don’t respond fast enough. Not sure what I’m doing… Oh yeah, napping or something, or creating some kind of normal.

I attempted an email to my office, but pft… They reckon (and rightly so) I need to rest more. Sigh.

Yes, I know…. They’re right. Thanks Adele.

One visitor from interstate was refused though… Cold. ‘Nuf said. Sad but deal breaker.
Suse, I’ll see you soon. Or Skype or something. Sorry, but not sorry.

I was in an enforced snowy bubble for long enough, I’m just creating a new normal.
So far it’s working.

Hopefully, I’ll be home to MY home on the 10th.

My wonderful house sitters are still there with the Schnauzer, but a few things still need to be done – carpets cleaned, A/C serviced etc. but we have time for that.

I also need to check and see when I’m right to drive. I’m not talking Bathurst, but enough to get myself around.

Ok Jane, Stop.

So, while it’s wonderful being looked after and I’m more than comfortable and loved and fed and watered – though these days I have to get my own breakfast (gasp). I’m happy and great and will see the New Year in with MS no longer active in this body of mine.

Happy.

FSJ xoxo

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