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 ❤

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!

Where does time go?

Hi guys,
I am so naughty not updating this for a while. I don't know where the time goes.....actually I do. She is called Ava and is the biggest time waster I know! Can you believe she is 20 weeks old today? The picture above is of her meeting our friend's little boy Joshua for the first time. He is 3 weeks younger than her. They were sooooo cute together. We went to see them at the weekend and just stayed in, watched the rugby and had a takeaway with a glass of vino. It was a welcome change of scenery for me.

My new car is due to be here at the end of March. I have to have a driving assessment in a couple of weeks to see which would be the best adaptations to the car for me. I'm a little scared as I haven't driven since August last year. I'm sure it will be fine though. I have also ordered myself a scooter. These 4 walls are finally driving me insane, it is like groundhog day every day. At least with a scooter I can strap Ava to me and go for a bit of a cruise ha ha!! Nathan has just bought a new car (a mondeo) so it has enough room for me, Ava and all our bits and bobs.

I had my MRI scan on Wednesday, I forgot how loud and boring they are. At least it's done now. I spoke to my MS nurse yesterday because we'd talked about steroids after the scan. My neurologist is going to see me next Tues instead of the 24th to discuss the options. I am hoping he will have the scan results so if I'm eligible for Tysabri we can get cracking with it.

That's all for now,
Emma x

I have wheels, lovely lovely wheels!

Hello all,

Have posted below about some trials into MS so go and take a gander if you are interested. Well well well, what can I say? So much has happened with my frame of mind over the last couple of weeks. About a month ago, my mum suggested that I go into town and use one of the mobility scooters to try them out. I said NO WAY quite adamantly, 2 weeks later I found myself on one. To me, in my head they were for larger or older people, not a 27 year old young mum. When I spoke to my MS nurse about this, he said I had to use my stubbornness to get myself out and about, as scary as it might seem. So I found myself on the phone booking a free scooter at a shopping centre. At first I was a bit embarrassed, but when I realised no one was staring a me, I was fine. The only problem I found was that some shops are not designed for scooters and are a little tight. You end up nearly taking racks of clothes out or knocking over rails! And reversing is a whole different matter.......try going forward into a lift and then getting out of it beeping like a reversing lorry!!!! So I am seriously considering buying a scooter. Watch this space.

I HAVE BOUGHT A CAR! By continuing on the theme of getting out and about I have redeemed my disability living allowance mobility component against a new car. I am hoping to get hand controls so when my legs are having an off day, I can still get out and about. Here is the link for those of you who are interested in it :
http://www.ford.co.uk/Cars/NewFiesta?campaignid=Fiesta&advertiserid=Google&bannerid=Ford_Fiesta

It is a 3dr and magenta on the pic but I have ordered a 5dr automatic in bright blue.

My Physio team have also given me a rollator walking frame (as pictured below) for around the house but I think I will probably use it around and about.

Ava is crying so must go and make milk!
Take care,
Emma x