Thursday, 27 October 2016

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,( 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?

Emma x

Thursday, 20 October 2016

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

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
(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

An insight to my life with MS