Happy Birthday to me, Happy Birthday to me…………. Happy New Life Birthday to me!

Well what a year it has been and I am both astounded and amazed that a year has past already and that our lives have definitely changed for the better! My last update was in January and sorry for the delay, the past four months have flown, life is really busy and I can cope with it all.

In January Joe and I celebrated our anniversary, we went to all the big bash games in Adelaide in the heat and we were enjoying the warm weather with lots of outings and family fun during the school holidays. I am very grateful that my heat intolerance and fatigue has gone now. I had my first hair cut/trim in late January and my hairdresser showed me how to style short hair, whilst its not how I would like it to be it is actually growing fairly quickly and getting there. To see how much it has grown since January to May is quite unreal and the wig has been put into retirement.

For some crazy reason I decided that I would have a go at riding to work. I had the energy and desire to do it so one Wednesday I left nice and early and got on my  bike. It took me 1 hour and 10 minutes along the beautiful linear park. It was a little bit of hard work especially some of the hills that I had to get off and walk up but I kept going! I arrived at work looking like a beetroot but I made it. I did however suffer for numerous weeks after every time I sat for long periods of time on a hard surface with a very sore coccyx! So far it hasn’t been possible to do it again with school and kindy drop offs and busy mornings, and it is easier to drive to work but it definitely is not because of MS that I haven’t done it again.

Bianca went happily into year 1 and Dominic started Kindy at the beginning of February. It was also very busy with a birthday every couple of weeks, we had Dominic’s birthday and I was super happy with being able to create another themed cake for him. I have found I am quicker and more refined with cakes already and making his “Jake and the Neverland Pirates” cake was another chance to prove to MS that I am better off without it! Next it was Joes birthday and we went camping up at Bowhill. Over this weekend Bianca and I learnt how to ride a motorbike. I was surprised at how fast a little 50cc bike goes and it even had the throttle limited as well. I never would have expected that I could have the strength to manage a bike or that I would enjoy it so much. It is one new thing that I have been able to experience when it would have never entered my mind before.

Finally in March it was Bianca’s birthday and besides having a fight with the uncooperative purple fondant she had a basic but high 7 tier rainbow cake. On the day of Bianca’s party we had a couple of hours in between it finishing and getting on a plane that arvo for our 14 day holiday. I had to be super organised, packed and tidy so we could fit it all in and not be late for our departure.

And we were off, we had a fantastic cruising holiday with great friends whilst still needing and wanting to be super careful. I didn’t swim in any spas, or go in past my shoulders in the pool for the one time I got in, I did have a glorious time at the beaches enjoying the warm waters. We arrived home from Sydney the Thursday night before Good Friday and then quickly repacked before leaving again for a wonderful time in Robe with different friends. Whilst we were in Robe we were lucky enough to visit a fellow HSCTer’s restaurant Gather food and wine. Wow what an experience and I highly recommend it to all visiting Robe or the south east.

After being able to run again I planned on giving the non competitive 7 a side summer hockey a shot to see if I would be able to commit and take part in the season proper either this year or next. I played a few games when my schedule allowed and was stoked to be able to take part again. I didn’t have the skills I used to have as my balance and coordination was still affected but I enjoyed my time out there even though I was a shadow of my former self. Well as it turns out in April my dreams have come true and I have re-joined my team since last playing in 2013 and even though I am not going to training I feel I am improving every week with some skills returning and I even managed to play nearly a full game at right half! The best bit is I am not wiped out for days after the match, take that fatigue! (Okay maybe I am not running as much as I used to but I am running again!) Bianca and Dom have also started playing hockey in the under 9s this year and it is truly wonderful to see them getting the same enjoyment out of something that both Joe and I do (or did) and being a part of our history.

This year it has been pretty stressful at work with some uncertainty around our Specialist Migrant Services team and who would be a part of it going forward. Restructures are sucky enough without a whole service being left in limbo. Once it was decided I was fortunate enough to be able to remain with my team and move into a new division which I am very very happy about but also means I very much miss my wonderful workmates who went back to head office. Changing the way we work has meant lots of extra hours and solid work being produced (one reason why I haven’t had time for an update). I feel really energetic about it all and am coping extremely well when this would have again wiped me or tasks taken twice as long. I even packed and unpacked a fair amount of the office things and got some compliments about how fast I got things done – a real rarity!

We finally have been able to get a pet for the kids, a beautiful friendly little rabbit called Kiely as we promised that when I was well enough we would look into getting something for them. We will also now starting to repaint from top to bottom and re organise our house getting rid of all our excess possessions. We will be getting new carpets and finally getting our ensuite completed as they ran out of time when we were in Russia and it has been sitting idle and locked up since returning. It will be nice to be able to use it again and have carpet back in our bedroom and it can all happen now I am 1 year post. YAY!

So as you can see we are all happy and healthy and enjiying life. The last year has been a wonderful journey for myself and my loved ones and I am forever grateful for all your support and love along the way. I am so sorry to do this to you but I am going to stop here as I am now up to date, this post is way too long and I feel my 1 year check up reports deserve their own blog post and when I have them all I will get it out there for you to see! I promise it wont be long….

Much love to you all and until next time xx

6 January 2006 was the day my official MS diagnosis was given, a day mine and my families lives were turned upside down. To start with I was shocked and unsure about what my future will hold but felt I had always dealt with it pretty well and was willing to give it my best shot at coping and living life to the best of my ability and prepared myself for a life on medication. Up until my major attack in late Sep 2013 I was doing ok, I hadn’t been severely affected, I couldn’t do late nights, I needed to rest often and sometimes couldnt move with fatigue, I had lost most of my strength and my brain was foggy. I suffered vertigo, occasional blurry vision and MS hug (tightening around my ribs). My right leg always felt weird and achy but I had still managed to live a realitively normal life with my young family. Of course reality hit when I was paralysed on my right hand side for a month and I never recovered completely and I had permanent damage 18 months down the track when I got to Russia.

10 years on today my/our lives have changed for the better, I leaped for a better life and it appears I have got it and it is now 8 months post transplant as well. I had always hoped that something would come along in the future but never in my wildest dreams did I think it would be so soon and so effective. I can not thank everyone or my lucky stars enough as I am feeling truley new and wonderful.

I returned to work on 10 Nov and had my desk all decorated and I guess they were happy to see me. All went well and I am glad to be back and I have noticed my typing is alot quicker and I can use my ring and little fingers when touch typing again. I also am managing to walk to the mall in my lunch breaks and I nearly always take the stairs to level 4 of the carpark. I was a bit tired after a couple of weeks but Joe had also gone to work so life was busy. I said to my colleague that I had bags back under my eyes, but once I got back into the swing of things they disappeared thank goodness! I love waking up “awake” in the mornings now. One of the best symptoms to dissappear I believe. I would always need to summons up the energy to get out of bed, now it’s not an issue at all.

One of my other symptoms that has gone is my heat intolerance… sitting at the Christmas pageant and then also Christmas carols in the sun, covered up (long sleeves and pants to avoid burn) wasn’t an issue either. Previously this would wipe me out and no way would I be able to wear long sleeves etc. I am actually feeling the cold now which is totally strange for me.

Before I knew it 6 weeks had passed and it was Christmas and as the festive season arrived we were soo busy… catch ups with everyone, Christmas shopping although it was mostly done online earlier in the year still needed to be finished, 3 work parties and then preparing and hosting Christmas day at our house for 24 people with Joseph only getting home on the 23rd! I managed to do all the things I needed and even have the presents wrapped before Christmas eve. I had all the energy to keep going and didn’t really even have a rest day during December let alone the naps, early nights or wiped out days that would have been my norm.

On boxing day we left for Sydney to spend 10 days with Josephs family who live there. We pretty much did something every day and had the best time, lots of late nights and some early mornings but also some sleep ins when my children let us and I was not anywhere near as fatigued as Joe during the whole trip. We went to wet and wild 2 days in a row and whilst I didn’t swim or go on any slides etc I still managed to do 17289 steps the first day whilst wearing my havi’s (thongs or flip flops for non aussies) and then even run in them when I needed to catch up to the rest of the group after taking something back to the cabana! I couldn’t even wear thongs prior to hsct let alone run in them! We did the zoo and shopping days, I had my first swim in his cousins pool and I have never been so close to fireworks on new years eve as we were at the marconi club! We also managed a trip to nearly newcastle to see my godmother and family! We had the best time and came home at 10.30pm on the Monday with work bright and early the next day for me!

Joseph has now sort of changed jobs, he has moved to the adelaide metro day crew. This means no more fifo for us as he is now doing the same job just not out in the middle of no where. He will look after the adelaide section of the pipeline instead. It was a very hard decision to make as the 2 weeks he was home was awesome and he liked the boys on roster etc but it nice to know he did not need to make his decision because of me and my illness it was more because of missing Bianca and Dominic and their behaviour when he wasn’t here. Will be good to have him home every night! So this change also occured on 6 January!

I am very pleased and also so shocked with how my recovery has been so far and am feeling truely fantastic and getting stronger every day. My only issue is feeling comfortable and confident to go “out” without my wig. My hair is growing and is nice and curly but still not long enough to blow dry and straighten. I will have a trim and tidy up in the next week, but for now it is easier to embrace the curl and go without my wig when I need to wear my headset at work and my colleagues are very polite if not somewhat convincing at making me feel ok with it. If you are reading this as research to decide to have the treatment, you should seriously consider it, as I do not have one regret at all! I would like to/could nearly say that I didn’t quite make it to 10 years with the monster that is MS, but reality is I did have it for a few years pre diagnosis. This year I will hopefully do bootcamp, start to see clients at the counter again, Bianca will be in year 1 and Dominic will start kindy and Joseph will be here for everything. I hope you all have a fantasic 2016 too!!!

Wow another two weeks has passed already, life goes on and I am doing well.

Thursday, Bianca Joe and I headed into town to purchase a wig as I was getting frustrated with my scarves and hats etc moving when my ears/cheeks wiggles when I talked or laughed or not having a matching one for each outfit. Was an interesting and fun experience and I will never forget putting it on to show Dominic – he just stared at me for a good 20 seconds and wasn’t sure what had happened. I then showed him it was a wig and he said to take it off. He also asked why I had put lips on when I wore makeup for the first time since going to russia that night too lol. I didn’t think I needed a wig and it was definitely more for comfort than vanity, but I love it and will continue to love it when I dont have time to style, even when my hair has grown back!

The week before Joe left we were soo busy but it was so much fun and I finally got to catch up with both our extended families and some friends and have some time together too. I felt like life was getting back to normal a little bit as I did head out for most of it and enjoyed my new life. I wasn’t too tired at the time either and I have definitely noticed more energy.

I have attended 2 football matches, the showdown with Joe and the gold coast game with my babies. Both games I found walking in and out soo much easier and even commented to Joe and David that I don’t think I have ever walked so quick and I felt fine. I normally would have to ask people to slow down. Even managing the stairs was soo much easier without my ms leg pain. Yahooo!

We were at our friends place on monday and when leaving, I loaded the kids in the car and realised I had Joe’s sunnies and he was staying behind so was still out in their shed… not wanting to leave the kids too long I sort of ran them back to him. I found jogging slowly possible, my right leg was still weak and it was not smooth but it was definitely safer and easier than pre hsct. I WAS happy but didn’t really think it was propper running and no one saw so I couldn’t get an opinion or comment. I also still had my cold so my body wasn’t at its best.

After dropping Joe at the airport I did head into target for the toy sale… this was my first time shopping in a store apart from a small supermarket. I loved it so much that I did my kids layby, went home for breaky, looked at my reciept and saw a bargain and went back to finish the rest of my family and friends children too.

I popped into work and visited my beautiful collegues and also went to the hockey club for the first time too. I loved catching up with you and I have missed you all

I had an appointment with my haemotologist as I was getting close to 3 months and he said I can go back to normal at 3 months and I wanted clarification on what that exactly meant. He told me I can eat normally, go into childcare and Bianca’s classroom, go to the kids swimming lessons and to GET OUT OF MY BUBBLE! I didn’t think I was in a bubble a such, but just being cautious and using common sense and a lot of hand sanitiser! He told me that my blood levels now are at a safe level and if I was to contract something it wouldn’t affect me any differently that it would a “normal” person 😕 Whilst I agree with some of what he said re food etc, I don’t know if I feel like I can relax if people around me were seriously sick etc.

Well with school being back and into week 2 already the time has flown and Dominic and I are having a great time together and I am able to play with him and am not too exhausted to get up and down after him. In fact on Monday I even chased him down the hallway and realised I ran without thinking about it! So I put on my sneakers and we went to the park after school pick up. Then I told Bianca to watch this and on ready set go, we all ran, all the way across the oval and back… I CAN RUN! not a jog, not stumbling whilst trying to move fast, not rolling my ankles… I had the energy and I had balance and strength and I could do it! Even better than last monday. The kids were sooo excited and so was I. Bianca even drew this picture of me running, and a dodgy video will be uploaded on the facebook page.

Since my last attack in sept 2013, the only time I ran was last august when I played the last 20 minutes of a hockey game (as they were short after people left early). I rolled my ankle 3 times in the short distance I did attempt to run and I was not safe. I played a high striker and only helped make up the numbers as I realised my hockey days were definitely over both with running and my skills. But now after seeing the improvements of hsct this week I might be able to make a come back, but running is only the start of what is needed so we will see next year.

So to wrap up I will tell you all the wonderful things I am noticing since my hsct now I am 12 weeks and nearly 3 months post! I was thinking some of these things could have been steriods but now they are becoming an everyday occurrence or people are noticing for me…

✔ I can run
✔ I can walk faster
✔ My walking looks better
✔ I can manage stairs safer and without assistance or leg pain
✔ I have energy
✔ I dont look tired or run down and people are commenting on this all the time
✔ I can use my right leg to stand up from the floor
✔ I can balance whilst squatting down
✔ I can have a hot shower without being wipped out
✔ My writing has improved
✔ I can lift the kids easier
✔ My jerkiness is gone from my right arm and hand.
✔ My dexterity is better

So I think I can finally say I can see all these changes and improvements and that the treatment has been all worthwhile. Fingers crossed it has halted the progression too, I am sooooo blessed!

THANK YOU ALL FOR GETTING ME THERE X

Another 2 week update and another cold. I am sorry its not massively exciting and also a brief warning, some of this will be too much information but I want people to be informed if they are using my information/journey as research for themselves.

My sinus infection pretty much cleared up thursday after my last update so that was nice. However had some serious pains in my tummy and I woke Thursday for me to have welcomed a womens monthly visitor, although she was very much uninvited. I am on the pill and was not expecting it to show at all. I was taking neurofen for my sinus infection and had switched as I ran out of the antiviral russia sent me home with and the one my haemotologist prescribed here. I dont know if it was from switching, the blood thinning neurofen or perhaps a side effect of the chemo. Eitherway I rode it out and checked at my pentamadine appt the next week that it was nothing to be concerned about and it was all ok. It stopped and just appeared to be a pretty standard visit, just unexpected.

Friday it was my mums birthday and I made a cake and again I was very happy with my skills compared to pre hsct. This cake was covered the best I probably have ever done and then the kids helped me roll, cut and decorate with circles. I am thinking my dexterity has improved for sure now.

Last week Joseph came home from work and whilst I managed fine without him but with help from the parents it was still school holidays so great to have him here for that. I did venture out to do a couple of things with my kids and had a ball, just watching and not touching anything lol. It was nice not to have to do anything hehe.

We went for a drive up to Murray Bridge to pick something up Thursday and our poor little boy was coughing, coughing and coughing some more to the point he threw up. Omg we thought he had whooping cough.  We couldn’t get him into Dr’s so we sat on it and Friday he woke up perfect and devloped more cold symptoms and then Sunday I was (un)fortunate enough to pick up my 3rd cold since being home.

Then on that coldest weekend, Joe and I took the kids for a day trip up to Gumeracha and the big rocking horse and the motor musuem. It was suprisingly warmer up there! Something I am very proud of was climbing the big rocking horse… prior to my hsct I probably would have been able to go up 1 level but it would have taken all my strength and I wouldnt have made it to the top or even attempted to go up all the way. WELL I DID IT!!! I climbed all the way to the top and down again and supported Dominic in his climb while Joseph followed Bianca. It was narrow, it needed sturdy balance to get on to come down and I did it all! I had very sore legs the next day hehe.

So I have had a few days of the cold but it is not too servere thank goodness. I think I am doing better since my treatment I am feeling well still even with the cold and am not needing a day nap anymore. As soon as my cold is gone I am hoping I will be able to see some difference in my energy and then I will get into some rehab.

Thanks for reading xx

Its been 2 weeks since I last posted an update and I don’t feel like I have anything too exciting to share. I am now 8 weeks post transplant so 2 months has passed already! The time is going quickly and its been a busy but restful couple of weeks.

We got both sets of parents tickets to TOTEM by cirque du soleil for looking after our kids whilst we were in russia and on that sunday we went to dinner with them after even though I had a massive headache as my cold turned into a sinus infection. This was my first meal out somewhere since coming home and I only managed to have some chips as I really wasnt feeling good. At least I know I was safe lol.

Monday I called my haemotologist to check if there was anything he specifically wanted me to do for this terrible sinus infection, but he just got me to go to the GP for a script of antibiotics. So the day before Joe left for his first work stint we went to the drop in clinic as I thought I wanted to change GP but perhaps mine isn’t so bad after all…. this one literally didn’t do a thing except write the script and Joe ended up storming out after he asked if he was going to even check my temperature or make sure I did infact have a sinus infection! I guess he trusted I knew what I was talking about. You would think he would have had a duty of care to make sure what he was prescribing was for what I had.

Anyways I spent the next few days resting up as the kids slept at Joan and Michael’s and then Thursday we got some scary news… whooping cough was going around Bianca’s school. So I pulled her out and started her holidays early! It’s going to be a long three weeks but with what ended up being 12 confirmed cases it was a risk I was not willing to take. Whooping cough can be very serious and for someone with a low immune system it would be even more so. I called my haemotologist and he also got me to get a preventative course of antibiotics incase Bianca had picked it up.

Saturday night my baby girl performed in her first dance comps and I couldn’t have been more proud. She did a fantastic job and whilst I had no idea what to expect in terms of competition or how she would perform, I was shaking and in shock when she WON and thank you to her little support crew. It has been a long time since I was in the dancing scene and I can see this is just the beginning for her.

Just as I finished my antibiotics, my sinus infection was starting to disappear thankfully as this had really worn me out and made my existing MS symptoms quite strong and obvious this last week or so. I really felt like I couldn’t achieve to much in terms of house work or playing and with Joe away both sets of parents were a big help especially with Bianca home. I still managed to be or go where I needed but took it easy at home.

Wednesday I saw my haemotologist again and he is happy with how I am going and has given me permission to start going out a bit more like to the footy etc but be sensible about it. He has also recommended that I continue to stay away from the daycare drop off and pickups till after 3 months post. I will now see him in two months time and only have my bloods done then too, I am not 100% comfortable with this as I think I should see him at a 1 month interval as then I will be 3 months post and thats when I should be even better and can possibly look at introducing more foods etc so I will look to change this when I go for my pentamidine. My bloods were good still….
Hemoglobin 111
Leukocytes 4.8 (down but i had an infection and they will keep fluctuating) with good neutrophils
Platelets 325.

I am hoping that when this sinus goes 100% and I get some energy back I might be able to start some rehab/exercise. Need to do something about this chemo gut! In the meantime Bianca and I will be doing stretches daily as she has tight little hamstrings and I will start with low intensity even though I don’t have much feeling in my right leg and want to feel the burn so I have to over stretch to feel it!

Wow I cant believe I have been home a whole month now and its been 5 weeks since my transplant. I am definitely settled back in and starting to get back to my old life slowly and next week Joseph will go back to work so it will be a big change. It has been nice having him here but going back to work is essential and it will be nice to get back into our routines.

Thursday I started my antibiotic called pentamidine which is an oral inhaler. I had this at the RAH in the oncology unit. The nurses were all gowned and masked up and this reminded me of moscow and sent me to a happy place. The room was closed off and it was myself and one other patient who was also having her first dose. I have a bit of ventalin first to open my airways and lungs and then they hook up the pentamidine and I have to breathe it in for approx 20 mins (they say it gets quicker as you get used to it!). Then some more ventalin to finish it off. I then called into the ambulatory day unit where I used to receive my tysabri infusion and they told me they do the pentamidine there… was feeling nastalgic and sad that I could have been somewhere I was familiar but also glad I have a new chapter in my life and am moving on. The staff there were so pleased I kept my promise to go back and see them after and report on how I was. It was great to walk back in there and show them that it all went well!

Friday I had a big day sleep and rested most of the day. Obviously I needed it and it was good for what we had planned for the kids tonight, as we took the kids to Disney on Ice. I was a little hesitant in going but I masked up and was sensible about not touching anything etc and hand sanitiser is never far away. The kids and I had a ball and I am so glad we went.

Joe did the busy Saturday dance run again for me just to on the safe side. Then I had a visitor, my boss Irina dropped in a lovely a care package from my work colleagues complete with chocolate and a knitted beanie from my manager. Thank you CIS X 

In the arvo we took the kids to the local school so they could ride their bikes and play with the cool boomerang flying frisby thing we bought at disney on ice. Was cheaper to get one thing to share and that didn’t light up and I think we are going to have sooo much more fun with it. The kids loved it and I think Joe had just as much enjoyment from it too. We spent ages at the school playing and then made a quick stop into coles to grab something for dinner and the place got evacuated… argh people all got funneled through the exit, luckily I had a mask on!

We were expecting Dave and Emily for dinner when the door bell rang and it wasn’t them… it was Chantel and a lovely surprise it was. I had been hanging to see my bestie and was glad she was able to stay for dinner before heading out for the night. The night was great and 6 bottles of wine and some wonderful conversations later it was 1am and Dave and Em left. Felt so good and normal to have a night like this and I wasn’t even really that tired. I did however only have a glass with dinner and then a port a bit later.

Sunday I woke up fine and wasn’t really feeling like I had had a late night. I got up with the kidlets and then we headed to Tarryn’s Birthday. Was another wonderful lunch and afternoon with the family and the kids played so nicely. I was feeling the cold though, something that rarely happened pre hsct. Dani gave me a pair of socks and a blanket to keep warm. Thanks Dani x

I had planned on doing some things whilst mum took Dominic to Mainly Music on Monday morning, but both Joe and I slept the morning away.  Joe had a cold and I was being lazy. We didn’t actually do too much today except make a large batch of zucchini patties.

Argh now I am getting another cold! Its nothing serious, just a cold but I will watch it and make sure it doesn’t change. I hung around at home with Dom while Joe’s mum went to literacy groups, then physio before she came to collect Dominic to look after him for the day so we could rest. Well after Joe got home from some errands, I had my bloods taken and then went to the chemist where they asked if i was on the news? How weird! And I finally dropped off my income protection claim. Was a nice feeling to be able to take myself places and have some independence back. I may have also dropped into coles for some more wafers… shhh!!! Joes parents took the kids to auskick and to swimming for us and then stayed for dinner.

I was feeling quite yuck with the cold on Wednesday so I spent all morning in bed again and only woke for lunch and then phoned to get my blood results which are doing ok…
Leukocytes 7.52
Hemaglobin 109
Platelets 325
And then they told me my neutrophils were 6.02 I dont know why she told me this she did. Then we headed to my neurologist appointment. Many people might be wondering why I have gone back to him, but I am fortunate to have a neurologist who is happy to support me in my leap for a better life. He was very curious to find out all about it and to see me and make sure I was following up properly with Dr Lewis and doing all I need to be. He has given me the forms for my next MRI in Nov – 6 months after my one I had in Moscow.

Then we will be able to see if I have any new lesions or change. This will be one way of monitoring if hsct has halted the progression. The other factors will be the appearance of any new symptoms. Any improvement of previous or current symptoms will be a bonus and I am still not sure if anything I am experiencing is as a result of the treatment or just part of the recovery process but I am noticing the cold more. However it is winter and I have no hair lol. I am tired and have slowed down this week so perhaps the steriods are wearing off but I am still not sure.

From now on I think I will only post updates when there is something worth while sharing. I like using this as a diary so I will be able to look back and see how my recovery was. So I will see what happens next week lol. TTFN X

After getting the all clear to head out and about with caution I masked up and took my baby girl to school…. not just to the car park to drop her off but walked her into class said hello to her teacher and other parents! Bianca wanted me to stay and I had to explain that this was all I could manage for the next few weeks and perhaps next term I might stay for literacy groups again. I hope anyway…

Then Joe and I hit the shops… I would normally spend a lot when we go to norwood place foodland, but with my food restrictions and the lack of my income we found ourselves with only a half full trolly minus all the salami and pancetta we would have loved to buy.

Next it was time to pick Bianca up from school and again I did this by going into get her which felt awesome and then I took her to her solo lesson. This was such a good opportunity to see how she was going before her showcase this weekend. We or I learnt the things she needed to work on and I was able to find out how she had been getting on whilst I was gone.

That same night we had our friends Paul Kirra and the boys over for dinner. So wonderful to be able to get somewhat back to normality with entertaining and me seeing them for the first time since coming home. Kirra’s face with the russian doll(s) we got was awesome. Like I’ve said before, Joe did a great job with the shopping!

Friday was just chilled and I watched tv with Dominic while Joe went to physio and collected the shopping from coles click and collect for the items they had on special this week. I got in trouble from Joe for buying more tina wafers… they are my favorites at the moment and they were on sale!!!

Then it was time to head out to my brothers for dinner and to surprise my nephew BJ who had come home for the long weekend. They had some yummy food cooked and were very cautious as to my requirements and then they also had pizza… which looked soo freaking good!!! Why does everything you can’t have look so good! But I didn’t give in (as much as I wanted to!) We got to spend the night with my whole family which was very nice and I had to take this photo to show you all how much I look like my brothers now!!!!

Saturday I let Joe take Bianca to dance as there are sooo many people there at that time and it was something I didnt have to do so I wasn’t risking it. I was also a bit tired and feeling like my cold was coming back after I felt ok yesterday. We then got Joe’s parents to have the kids for a couple of hours while we watched the footy in peace and to rest before I had my first night alone with them while Joe headed out to a bucks. It went well, I managed to cook dinner and get them to bed without feeling like I couldn’t and then I had the energy to clean the kitchen!

Showcase day was here and Bianca was performing her first solo. Showcase is an on stage rehearsal for all new routines before the competitions for her dance school. I was stoked that the haemotologist told me I could go and be with her back stage… I was thinking Grandma might have had to do the back stage thing whilst I sat at the back corner away from everyone but I was there and able to do it all. I was so proud of Bianca she did a wonderful job. I didn’t stay for the second half though as I was exhausted after getting up early to do her hair and makeup and being there. We went home and had a sleep! Then we took the kids to Joe’s parents for dinner and a sleep over so we could sleep in. I was over my cold but I was tired today.

The queen’s birthday public holiday was a great day, we had fish and chips for lunch and then took the kids to the bike park with Paul, Kirra, Jess and the boys. They rode their bikes (obviously) and we also kicked the footy around. It was a lovely afternoon and I managed to walk the long distance to and from the car, no problems at all. Then we finally caught up with Dave and Emily since being home too as they had been sick. Was only a brief catch up but very very nice.

Blah, Tuesday I was knackered, so very weak and no energy. Joe took Bianca to school for me and I sat in Doms room while he played cars. I don’t know if the steroids are wearing off or if I had just had a busy weekend but I was really buggered today. We didn’t do too much at all except go to my dad’s quickly to get Joe’s car we had left there when we went to russia and then I picked up a roast on the way home for dinner. I figured it was easier to do a roast with some veg while the kids were at auskick and swimming tonight. I found the energy to do that but not clean up after. My walking is quite affected from my fatigue today.

And finally wednesday, I was tired and cold. I didn’t have to worry about the kids today as Dominic was with Joe’s parents and Bianca at school so I just lounged around in bed reading the catalogues. My leg is more noticeable both with my walking and the weirdness achy numbness that I feel and so with this second day of it, I am starting to feel like perhaps the steroids are wearing off. I was grateful to have dinner at Joe’s parents tonight. I was really feeling the fatigue today. Perhaps this is the start of the crash that everyone talks about as I really am lacking energy to move too much at all.

On a positive note Dominic has had two days of no nappies at home and even some outings to kindergym and swimming with only 1 accident at home. We might finally be moving away from nappies which will be a great relief!