Tough times

Hey all,
So Christmas and New Year have been and gone in the blink of an eye. We had a bit of a subdued one this year as we sadly lost my Nana on 23rd December very unexpectedly. Luckily we had Ava and her board games to try to distract us over the Christmas period! Nana had just turned 96, so had a good long life, but being the only bereavment in the family that I have been aware of, it has been a challenging time for us all.

So to add to those tough times, Ava seems to be going through a stage of 'separation anxiety' and I am finding it hard to know how to cope with it. She has never been the particularly clingy type and I've never had a problem with her not wanting to go to school, until the last couple of weeks. She doesn't want to leave me, she is worrying that something is going to happen to me. She has told me that she is worried that because I disabled, I am going to die sooner than 'normal' people. She has had several meltdowns at school over the last couple of weeks so her father & I are meeting with the schools pastoral manager to see what we can do to help. Another company that has been recommended to me are Gloucestershire Young Carers. They are a support group for children who are taking on the role of a carer for a parent/sibling with a disability or long term illness, and as it is only Ava & I in our household, she is taking on that role. Something I hadn't considered before. I am unsure what is causing this anxiety in Ava at the moment, it might be nothing to do with my MS but I need to try and get to the bottom of it before it gets any worse.

I have only had 2 physio sessions and am due to see occupational therapy on Tuesday so not much progress to report. The small thing of Christmas got in the way! I am still finding that I can go to sleep and think that I have slept pretty well but wake up feeling tired still. It is pretty frustrating.

One little last thing that I almost forgot about........

MY NEW CAR!
I finally have it, only 4 months late! It has hand controls that I am not used to, so it is like I am a learner drive again. I bunny hopped all the way back from the garage when I picked it up. After initial teething problems with the brake being too close to the steering wheel, I am slowly getting used to it and am excited about my future driving life! I have also got a scooter hoist in the boot so I will be able to go to places on my own and be more independent (once I gain confidence using the hoist myself). Even though the car is through the motability scheme, there was a great cost involved in installing the hand controls and the hoist and I didn't have it. I was informed that if you were finding it hard to get the money for any adaptations, you could apply for a grant from the Motability Charitable Grants team. So that is what I did and I was successful and the rest they say is history.

Lots of love,

Emma x

RIPNanaCats ❤

Moving house, driving, back to school...ALL CHANGE!

Hello all,

Yet again I am in trouble with my family and friends for not updating this. It's not so easy now Ava is a demanding diva of nearly 11 months! I find it hard to get anything done now, she just wants to play, bless her! Well, a lot has happened since I last wrote...I don't know where to start.

In a month since I last wrote we have decided to move, found a Bungalow to move to, put ours on the market selling in 5 days and are currently awaiting a moving date. When I last wrote in July we weren't even thinking of moving. My parents have offered their financial support to enable us to move to a Bungalow making life easier for all of us -big thanks to them! As soon as they had put the idea in our heads we set about hunting for a Bungalow and viewed a few before finding the perfect one. Trouble is, we were in no position to buy it...we quickly got ours on the market and it sold in 5 days, so it all worked out perfectly. We are just waiting to exchange contracts now and get a moving date. So I may be in the new place when I next write!

I eventually got around to driving my new Motability car with hand controls. It is rather scary having driven a car with my feet for 10 years to start using a push/pull hand control and steering with your left hand. Anyway, shortly after I started driving it, Nathan drove it with the foot controls and the accelerator got stuck down. Luckily he managed to control it and pull up in a layby and then turned the engine off. Of course, as a result, I was very reluctant to drive it again. But, I've had to drive it to work and am now getting more used to it.

I am officially a teacher again! I went back to school last week and am contracted to work a Thurs pm and all day Fri. I really enjoyed it but was totally shattered! It was actually very strange for me...going from a relatively fit, active person who could walk unaided when I left to have Ava, to coming back in a wheelchair not be able to teach in the same way I used to. But I coped with driving there and back, and teaching some very successful lessons. It felt like I was getting a little bit of my old life back which felt great. I just need to get back to swimming now!

So, it feels like a new start for us...a new house, new car, back to work, all with our little girl. Wish me luck!

P.S I have my 6th infusion of Tysabri next week. I sometimes feel like I am getting stronger but I can safely say that I am no worse...which is the main thing!

I am still alive...!

Yes, I'm still here, I've just been very naughty and not updated this in a while. It is getting harder and harder to find a spare few mins to update this as Ava doesn't sleep very much in the day and wants constant attention when she is awake! At this very minute she is kicking our sofa to get my attention as I am ignoring her!

We had a great holiday in France...it seems so long ago. Ava was a very good girl on the plane, and everyone was so great getting me on the plane too. I got to drive my scooter pretty much up to the door of the plane and then they took it off me and loaded it straight away. It was a great service (thank you Easyjet)! So if any of you are worrying about going away on a plane, DON'T WORRY! Just pre-warn your travel company and you will be treated like royalty. We had some mixed weather out there but we still managed to get a nice colour. The picture below is of me and Ava on my scooter.

I can't believe it is only 5 weeks until I go back to work. I am only going back for an afternoon and a full day but I haven't taught for over a year...what if I've forgotten how to teach?! I have been lucky enough to get money from Access to Work to pay for a support worker for the whole time I am teaching and they are buying a very expensive lightweight wheelchair for me to use at school. I am really looking forward to going back, although I've been warned, I have a naughty class this year! School have been fantastic about helping me get back to work. I just want to get stuck in now!

For those of you who knew I had a car on the Motability Scheme, I have finally driven it. I got it a few months back and it has been sat on the drive as I was a little nervous to go out in it. Using your hands to drive is so strange and needs a bit of practice. I found the hardest bit was knowing how far to turn the wheel, with just your left hand, to get the turn you wanted to! But once I get a little bit more confidence, I know it is going to be great.

I have now had 4 infusions of Tysabri and think I am feeling the benefits already. There are little things such as typing, lifting my toes up and sometimes my walking that seem to have improved. I am still writing about Tysabri on the MSRC website so if you want to check it out, the link is on a post below

I am sure that someone will tell me if I have missed anything out on this post!

Emma

P.S Just had to put another pic of my beautiful daughter on!