It's 1 month today since my transplant!

Sunday 16th November 2014

Day 0+31

I thought it would be easy writing a weekly update but I think it was actually easier writing every 1-2 days when I was in Moscow as it was much clearer in my head what had happened.  Writing about a whole week is a bit harder, although if I wrote about each day now that I'm back home it would probably bore everyone to tears as there is not that much happening day to day at the moment!

So today is a very exciting day I think, well for me - it's exactly 1 month since I had my transplant!!  How fast has the time gone....  I mean really, I can't believe that this time a month ago I was anxiously (and I mean anxiously) waiting for 1pm to come, I remember it being a very long morning and I remember being quite scared, of the unknown I guess.  I knew it wasn't dangerous, but I just didn't know how it was going to feel during the transplant, now I know and it didn't feel good - for me anyway, others have breezed through it - but I'd do it all again as this is exactly where I want to be now!  Moving on with life with and kicking MS to the curb!!  Happy "One Month" Birthday Matt!!

Sleep is a huge thing for me at the moment.  I need it but "I just can't get no satisfaction" - it's just not happening when it should and I just can't get into any sort of good rhythm, so annoying!  Blame it on the steroids!!  Or maybe the other million things happening in my body at the moment!  Or maybe, and I got this idea from my lovely friend Irene, my stems might be dancing in the night to find their right place and do their job!!  Then that's okay I'm happy for the disturbed sleep!

Monday 5am (I wrote some notes) – I’m not sure if I’m waking up at this time because I genuinely can’t sleep or because I know Seb will be already out there in the lounge room, he's an early bird! and I like to be with the kids before they go to school...

FitBit

I think my MS fatigue has lifted somewhat.  I’m still tired, don’t get me wrong but I think that’s tired from steroids/chemo/transplant/Moscow/30 days in hospital, bad sleeping pattern tired.  I’m not sure I’m feeling the complete body emotional meltdown fatigue that I would usually feel with MS.  I’m also not sleeping as much overnight as I would pre treatment.  And I really know, because Paul bought me a FitBit.  He has wanted to buy me one for some time and it’s a pity we didn’t have one before I went to Moscow because then we’d be really able to compare sleep patterns from before treatment.

The FitBit shows how much you slept a night but it also shows the periods of awake and restless times and graphs them.  I’ve been a restless sleeper for some time now mainly due to the way my body would feel during the night with my MS, even though I was extremely tired I would struggle to sleep as my legs would ache and I would never be able to get comfortable.  Which makes me just think – I’m not having long nights sleep at the moment and I wouldn’t say I’m completely comfortable, it’s hard to roll from side to side as my legs are weak, weak from treatment and still MS issues but, yes there is a but, or ‘light bulb’ moment as Seb would say!  I don’t think they seem to ache as much anymore at night..  That is a big ‘light bulb’ moment actually.  You know I genuinely have these while I’m writing (sorry babbling).. 


Couldn't do this without my family, especially Mum

The above was written on Monday and the sleeping hasn't really gotten much better other than I have managed to sleep a little longer overnight the last 2 nights but I'm still restless - and it has gotten bad enough that Paul's moved out onto a blow up mattress in the study.  He slept better there for 1 night, not so much the 2nd night and then he traded beds with Sebastien, I'm not sure who's idea it was but I think Seb liked the novelty of sleeping on the blow up and Paul got a better mattress and air conditioner with Seb's bed!  Seb announces this morning though he is going back to his bed as he's sleeping in too late on the blowup and needs to be up early on school days or he'll never be ready on time!!  Think we need to go buy a spare mattress!!  The other irony is though when I'm ready to fall asleep it's like okay I'm tired now and then I'm asleep instantly..  Seb and I were watching Godzilla Friday night, loud, in the bedroom and when Paul and Belle came in they couldn't believe I was sound asleep while Seb was still watching!  Note - Really enjoyed watching Godzilla (the latest one), love movies that I can enjoy watching with the kids.  Also watched Divergent with Belle yesterday, that was really good as well!

Thanks Jane for letting me use your mantra!

Bit annoyed that I won't be able to go to the cinema over the next couple of months as there are some good movies coming out!  Paul says maybe in another month it would be okay, mask up, but I'm now a germ freak and couldn't imagine sitting in a cinema on a seat that many have sat before and surrounded by people that could have who knows what!  I know that sounds terrible but I have this beautiful new immune system that I need to preserve and I don't want anything to compromise it so please bear with me being OCD about hygiene for the next few months (at least!). 

I'm a bit obsessed with clothing at the moment - which will come as no surprise to some of you! but it's a different sort of obsession.  Since I've had chemo and also because of a particular medication I'm taking I need to be even more careful of the sun than I otherwise would be.  So I guess when I'm ready to go out in the big wide world what do I wear in the Queensland summer when I would normally wear rather strappy dresses!  Luckily Mum's been looking after me and has bought me some lovely dresses to cover me up a bit more than I usually would, very spoilt I am!  I've also added a couple of scarves and a cardi I can wear with current maxi's so I should be good..  I've hinted that a couple of Camilla Katfan's in the Santa sack would be fine but I'm pretty sure I've probably got my fair share recently that I'm being a little bit cheeky with that request!!

The other thing I'm struggling with is getting used to my bald head, I may have already mentioned this but every time I walk in the bathroom I get a shock.  It's funny that I didn't feel this way at all in Moscow but maybe it's more real being home and in normal clothing again.  I don't have a problem with being bald, I'm very proud of what I've done and why I am bald but it's still something to get used to.  It's not as shiny bald as I thought it would be it has this kind of light fuzz covering so maybe I won't be so bald for long, maybe that's a sign that it's starting to grow already but I really have no idea..  and I'm fine at home, it's going out that I'm thinking about again and I don't want people to look at me and feel sorry for me because I'm so proud of what I've been through!  Hope that makes sense??  I have some little caps that I wear and they look okay but they get hot and it's pretty dam hot here in Brisbane at the moment.  I've been thinking about buying a wig but can't make a decision on that, not that I've been shopping for one yet so maybe I'll go and try one on and see how I feel.  Problem with that though is the good ones are quite expensive and again living in Queensland not sure how much I would wear it as they get quite hot as well - and you know that money could be much better spent on that Camilla Kaftan if you think about it!!  I am actually awaiting delivery on a scarf which I'm hoping will look great on my head, fingers crossed for me please!  Belle hasn't liked anything I've tried on my head as yet, she thinks I should just rock the bald look.  Oh and note to anyone who's heading for treatment - if you have bought any caps/scarves and tried them on now while you still have hair (like I did) and they look good, the whole look changes once you are actually bald and don't have any of that padding underneath!

Nice to be outside

I haven't been outside much this week except for the occasional jaunt onto the back deck so we decided to go for a walk, well me in the wheelchair, on Friday night.  We all went, kids, Mum, Dad and dogs included.  It was lovely to go for a wheel (can't really say walk) around the streets - we live in a beautiful tree lined neighbourhood with big wide streets,  there are quite a few Poinciana trees around and they are in bloom and are just gorgeous.  It was lovely to be out in the fresh air (even though I had a mask on) - not sure it was such a lovely walk for Paul since he had to push me and although our streets are lovely the camber on the sides is quite bad so it's not an easy push and I'm not a dainty size girl!!

Mostly still just resting this week and eating very well with all the good cooks in the house.  Looks like there will be a cook off at Christmas time when my niece arrives which will be fun (to watch and to eat the spoils!)..

No noticeable improvements to report this week but then none expected as this first month is about resting and getting my strength back.  I did decide this morning that I felt I needed to stretch my legs a bit more so I did 3 sets of stairs with Paul and maybe I'll try and do that morning and afternoon.  It was tiring but I was able to do it which is a great start..

Pressies!

Isabelle's just come home from the shops and brought me a couple of presents.  A bell, which I've asking for, for when I'm resting in the bedroom and need someone's attention - Paul's eyes rolled at the sight of it!  And she also brought me a comb for my growing hair - so thoughtful!!

I'm sure I've missed a million other things that happened this week, maybe I should take notes each day, but I think I've again probably gone on long enough for now..

Thank you for all your lovely messages, I love getting them and I'm sorry if I don't reply to them all individually but I really so appreciate receiving them.  We are still keeping to ourselves quite a bit as it's just the way we need to be at the moment but that will get better as the weeks go by and I get Stronger and Stronger!