Well October 6th, I am 5 months post transplant! Omg where has the time gone? Sorry it has been a long time between updates and to tell you the truth I can’t really remember exactly I have felt in the last two months. So where do I start?

I finally got my income protection claim approved, but thats a long story! I stopped taking my antiviral medication at 3.5 months post and have a full packet ready to take should the need arise, obviously this was on the advice of my haemotologist. I wasn’t sure I wanted to stop and I had every intention of taking the emergency packets but I have actually felt better off them. I still have the pentamadine every 4 weeks until I am 12 months post. I don’t think I have had any more colds despite Bianca, Dominic and my mum being sick a couple of times.

I feel I am getting back into life again, whilst still being cautious. I think that is why the two months have flown by! I went to all the remaining crows games and we had a nice little family holiday to melbourne for the 1st final against the bulldogs. We drove over and did so much walking to avoid getting on the public transport. I was so suprised at how easy it was for me, my legs weren’t affected like they would have pre hsct with the MS where they have just not moved fast or steady and I would have had severe footdrop after 50 metres and couldn’t walk any more than that. They were muscular sore because they have not been used like that in many years. We are talking walking blocks and blocks and I had the energy to do it. The 8 hours resting in the car on the way home was handy to balance out and manage my fatigue.

It is very easy to be lured into a false sense of normality, and no, I am not doing anything risky and am still very careful and worried, I can’t help to feel normal and want to keep having fun and enjoying things I haven’t been able to do easily in the last few years. My body is still recovering and even though when I feel great I just wanna do, I still need some down time and rest. When I do too much my symptoms tell me so…. Like staying up till 3am cleaning Bianca’s room last week and having a great long weekend with my first trip to the beach, picinic in the park, and family catch ups, my body is tired today as it should be.

I started pilates 6 weeks ago. I am only going once a week, and I am really enjoying it. I can feel my right leg now where as I used to have to strech it beyond its limits to feel the muscle. And everything I am doing is becoming better by the week. My physio says he could see more uniformity between my legs. I did a couple of sessions to try and be in the best shape before Russia but it hurt and was uncomfortable and I was unco at it so I wasn’t motivated to go anymore. This time its so different… my body knows what its doing, I can feel what I am doing and I am retraining my brain to complete actions correctly. I have a goal to get back into high heels!

My kidlets and I are really enjoying my time away from work and my improved fatigue as I am able to do more things with them. We are going on bike rides to the park nearly twice a week, and I am there for so much. I think my little Dominic will miss me when I go back to work as he is becoming quite attached to me. I was able to volunteer to be a parent helper on Bianca’s excursion to St Kilda Adventure Playground. Something I would have had to decline in the past as a day like that would have wiped me out, but it didn’t and we had a great day! I also was a back stage dresser for her end of year concert for ballet. Last year I did this also, but struggled with the stairs, I would be the parent that stayed at the back of the line and held on to the rail and stumbled my way up and down. This year I was practically able to run up and down and rail, pfft, what rail, it is not needed anymore!

My hair is growing back now and getting a lot fuller… I have soo many more greys too eeek! A couple of times I have popped into the servo without my wig or a hat etc and been ok with it. My hair on my legs is growing like the amazon though, soo fast! Oh well a small price to pay for feeling this good!

I have had 1 appointment with Dr Lewis since last post and Joseph was finally able to attend one and meet him. This time we discussed revaccination and my return to work. Dr Lewis follows the guidelines for vaccination after hsct that has been developed for cancer patients and starts at 6 months post. I was advised by Dr Fedorenko not to have any immunisations for the first 12 months due to a relapse of MS risk. So we have decided to hold off and start then as obviously I don’t want to ruin all this good work! I will get revaccinated eventually, it will just be a slow and not hurried process, especially with the live vaccines.

My bloods are doing ok, nothing of concern but definitely interesting as I received the print out of all my bloods since coming home and when they say they are normal they mean where they should be at my stage but not a ‘normal’ persons level. At 4 month bloods my levels were:

Hemoglobin 128
Platelets 272
Lymphocytes 1.35

We also decided that going back to work would be ok after 6 month bloods came back ok. So I have had to extend my leave for an extra 3 weeks, otherwise I would have been due back in a weeks time. Eeek! I am going to need to ease myself back into work and make sure I can manage (I am sure I will be fine really), and it doesn’t take too much out of me. I am looking forward to being back with my colleagues but thats about it! Work has had another restructure while I have been away and I will be coming back to a new system and possibly more changes.

So all in all everything is going well and I am able to do most things I need to. I am finding I am in bed not long after the kids so I can rest. I have my birthday next week and can’t wait to celebrate my birthday without MS!