Busy Busy Busy!

So half term is upon us already. Well actually it is nearly over now already! Where did that go? I think I blinked and missed it somehow!
We had a quiet few days at the start of the holiday then the chaos started. After a 730am start on a SUNDAY, it could only mean one thing. I was a dance mum for the day. As much as I dread the early start, the coach journeys and the hanging around all day, you just do it for your child. You do it for them, because they want to do it. Big shout out to my mum & dad now, I now fully appreciate everything they did for me when I was a child growing up. They took me to training virtually every day and spent most of their weekends roasting on poolside watching me compete in swimming galas. I now appreciate this even more and realise what sacrifices they made. Ava loves to dance and is gaining in confidence by doing it.She does streetdance and freestyle, I personally think she dances well (I know I'm her mum and biased) she now just needs to show the attitude in street dance. She is too nice ! In November we are off to the IDTA Freestyle Nationals in Blackpool. She is dancing with her team Diva Dollz and a couple of solo dances. We are not expecting any medals or places, we are just looking forward to the experience, and apparently it IS an experience of feathers and glitter!!

The following day it was another early start as we were headed for Westonbirt Arboretum,(http://www.forestry.gov.uk/westonbirt) for a walk with my parents and their dog Mollie the cockapoo. We hired a mobility scooter (for a small donation) from them which limits you to 3 hours, so we got there for 10 to make the most of the time we had it for. The trees were beautiful, the colours were amazing, we timed it just right. The new bridge walk way over part of the woodland just adds to the magic of the place. We loved it, I think Ava loved it and Mollie most definitely loved it. My only grumble was the 3 hour time limit on the scooter, we could have spent so much longer there, although we were quite chilly by then. We will most definitely be back.

 So, I am a week and a half into the new treatment, I am just about remembering to take a tablet every day. I might need to set myself an alarm if I start forgetting! I have to take Gabapentin every morning to stop my eyes from shaking (my MS nurse has never known this drug to have this effect on anyone!) so I have put the Gilenya tablets on top of them so remind me. I am pleased to report that I am feeling well, no different really. I had a minor wobble yesterday where my arms and hands were temporarily weak, but when a loved one sees this and worries about you, it makes it worse!!! I know it was only because they care. Anyone else get this? The more people mention a problem or notice you are having a funny 5 minutes, the more exacerbated the symptoms become?

Love
Emma x

Back by popular demand.........

How has it been 4 years??? Ava was 8 earlier in the week and my last picture on here is of her with a 4 balloon!! She has since started school and is now in the Junior school...wow.

As for me, I am back by request! Over the summer I wrote a guest blog for a local website and it was published last week http://cheltenhammaman.co.uk/disabled-maman/
(if you would like a read). I had such positive feedback from friends and family about it, I have decided to try and write more frequently again. I enjoy writing and I enjoy being a support to others whether it is through reassurance or just something for people to enjoy.

There is no time like the present to start writing in this blog again as I have just started a new journey in my MS life. If you have read this blog or know me then you will know that I was put onto Tysabri when Ava was 6 months old to hopefully stop my relapses. For the last 7 years it has done it's job, some would even say that I have maybe even slightly improved BUT a blood test a couple of years ago showed that I was positive to the JC virus therefore I had the potential to contract the potentially fatal brain infection PML. I guess I kind of rode my luck for a couple of years not wanting to leave the safety net of my Tysabri infusion but after seeing my Neurologist last month and him telling me I had a 1 in 100 change of getting PML and the fact my veins were giving up on me and making it harder ti receive the infusion, I have made a pretty big decision and decided to try a different DMD - Flingolimod (Gilenya).

This is a tablet a day, every day, hopefully until they find something better or even a cure (wishful thinking I know!). So instead of spending 2 hours at the hospital every 4 weeks bugging the nurses and hoping they find a vein that co-operates, I now just have to remember to take a pill every morning. As with all medicines there are side effects, I have to be monitored for the first 3 months as there is a part of the eye which can thicken and there can be issues with your white blood cells (not quite sure what though!). I have only been taking it for just over a week and to be honest with you, I feel no different. Which is good, I am not supposed to feel different, I am just glad I don't feel worse. Time will tell and I expect after 7 years, I still have Tysabri in my system. Again, the idea behind the drug is to maintain an MS plateau, not to expect an improvement but hopefully no worse. I have noticed I am a little bit more tired than normal but I do not know if that is work (I am still teaching 3 days a week), being single mummy to a busy 8 year old, as a result of Flingolimod or just generally MS!! I don't think I would have considered it being a side effect unless I had joined a support group on facebook (recommended by my MS nurse) where it seems to be quite a common side effect. The thing is, I know you have to take those groups with a pinch of salt because there are a lot of people on them who think that they are the only person in the world with MS and how can anyone else possibly be worse. Don't get me wrong, you can get some good support from these groups, but just don't take everything to heart.

I have had a rough couple of years health wise (not MS) but lets save that for another day, don't want to bore you too much yet ha ha

Much love,
Em xxx

So this is my not so small 4 year old little girl on her birthday on Wednesday. She is the most beautiful, kind, thoughtful, well mannered child I know.....but I am biased!

It is her party tomorrow, luckily it is at a place called Magicland, so they will do it all for us - great!

Be back soon x

Hello world!

I am back, I still exist and I cannot believe it has been 2 years since I have written on here. I have had several people recently tell me that they admire me and everything I manage to cope with so I thought I would come on and tell you about everything that has been going on in my life over the last 2 years. Boy have I got a lot to tell. Not quite sure where to start! The MS seems a good place to begin......

I have been on Tysabri for 2 and a half years now and I have been very stable during this time, I would even say I have improved and use my frame to walk a lot more, rather than the wheelchair. I discussed the possible use of LDN (low dose naltrexone) with my MS nurse and GP and looks like I could possibly try it, the ball is rolling but I do not have it yet. There are many studies saying how much LDN has helped them so all I can do is be hopeful. Fingers crossed! I have nystagmus in both eyes, which means they wobble. Trouble is one goes up and down and the other goes side to side, it can give me a bit of a headache but blinking temporarily stops it so if you see me blinking a lot you know why! My bladder seems to be the opposite of my friends with MS, it holds on to my wee for too long and I always feel like I need to go and normally don't need to. These are all little MS quirks you just end up living with.

Unfortunately I am facing another big hurdle in my life. My husband and I have separated. I am not going to go into detail but our main priority is being the best parents to our beautiful little girl. Ava turned 4 this week, where did the time go?

I was just trying to upload a pic of her but my eyes keep closing, not had a lot of sleep this week so off for a nap! Will come on later !

Em x

Baby Competition

Hi all,

I know I've been awful at keeping up with this, but it is so hard to find time with a 2 year old and working. She is at nursery tomorrow and Friday and as it is half term I am hoping to have time to update this and tell you how far I have come on Tysabri. But the reason I am writing is to ask you to vote for my girl Ava in a baby modelling competition if you think she deserves a vote!

You should be re-directed to the page to vote for Ava if you click on the title of this post 'Baby Competition'. If not the link is: http://apps.facebook.com/baby_modelcomp/entry/246475

I will post a couple of up to date photos of her.

I'll be back,

Emma

xxx

I've been swimming!

Hi all,

Just a quick post to let you know that everything is still going well and I have had my first dip in over a year in the pool. I loved it (even if I was a little cold as it was in an outdoor pool!). I will most def be continuing even if my legs have felt a little like lead for 2 days!!! Ava is now 19 months old today and walking and chattering. I am hoping to pick up more hours at work next year as this year has gone so smoothly so fingers crossed. Things are looking up!

Em x

Long time, no see......

Hello world,

Yes I am still here and I am feeling very guilty for not writing for so long. So where do I start? Well we have moved to the Bungalow - yay! We moved in at the end of October and love it here. Even though it is a down size from a 3 bed house to a 2 bed bungalow it doesn't feel like it is any smaller. We seem to have much more living space and the bedrooms are big enough. The area is great too, there is a school down the road for Ava (which I approve of!) and all the neighbours have been very welcoming. They are all retired so are always about if I need any help and EVERY week they bring our dustbin in when it has been emptied, which is a novelty in itself as in the last house, the bin was always in the middle of the pavement or our driveway and the neighbours wouldn't have thought about bringing it in for you! Enough about our kind neighbours!!!

I have been back at work for 5 months now and although I only do a day and a half, I love it! I job share the teaching of Y5 with another teacher and only work an afternoon on a Thursday and all day Friday. Ava is looked after by my mum mainly (Thanks mum) and Nathan's mum for those days so we don't pay for any child care. There would be very little point returning to work if we were paying for child care as well as it is so expensive. So we are very grateful to have such great grandparents, although if she becomes any more challenging I'm sure they'll start charging!!! She is the main reason I have not written for a while, she hates me typing and closes the laptop - little monkey!

Ava is just over 15 months now and is into everything, everything that is not hers! She walks very confidently holding on to one finger but has not yet let go and 'gone it alone'! She babbles incessantly to herself and says a few words. I am putting up a picture of her as she has changed so much since the last picture I put on here of her.

We had a different Christmas this year - we went to stay with Nathan's brother out in Bermuda. He has got a 3 year working visa out there and this amazing apartment overlooking the sea. We had a lovely time but it could have been better. The weather waan't great - it was wet and windy and we all fell ill over Christmas Eve and Christmas Day. Nathan and I didn't even make it to the beach on christmas morning for champagne or to eat christmas dinner, we were so gutted!

My MS has been improving (sssh don't say it too loudly!). My walking has improved in the last 2 months and we're not sure why. I had some steroids in November to treat as small relapse (my eye was a bit shaky!) and since then I have felt stronger and done so much more walking. I am even using a frame at school when I feel up to it, not the wheelchair and considering going back to swimming. I've got to make the most of feeling good! Nathan thinks the improvement is due to the build up of Tysabri over the last 8/9 months. Whatever it is - long may it continue! I know I have probably missed things out but I am sure I will be told what. Ava is throwing a strop as I'm not paying her any attention so I will sign off here,

Em x