Let it snow (but not too much!)

So another year has passed in the blink of an eye........but lets not dwell on that. Lets talk SNOW!

Snow.....that cancelled my choir show (well postponed)

Snow.....that has given my daughter a day off school

Snow.....that has given us great pleasure

Snow.....that is a nightmare for MS'ers


We have had the most snow that the UK has seen in a long time and it has caused chaos, goodness knows how places like Finland deal with it!  I suppose they are used to it and we aren't.

I love snow, it is beautiful and I was willing it to snow more, but from the comfort of my nice cosy house. Because MS and snow do not mix too well!! Ava was with her dad and got to build a snowman which is great because I can't do that anymore. I did venture out to collect some bits from my car but that was challenging enough itself. I walked with my frame very cautiously but I can only imagine how dangerous it was outside of the safety of my driveway. So yes I love snow, but the aftermath of ice causes me great anxiety. I worry about driving in it as I drive with hand controls and when you brake no matter how gently you think you are braking, you seem to skid.

I also had a Physio assessment last week as I have not seen the team since Ava was a baby and feel like I have lost some strength recently. So I was referred by my MS Nurse and I felt that it was very positive session. I thought I was just being 'lazy' having naps on my day off, turns out it is probably MS fatigue https://www.mstrust.org.uk/a-z/fatigue. It has gradually crept up on me but I didn't really realise. I don't sleep well, which doesn't help. I have to take Gabapentin as a slight sedative to help alleviate this. This definitely helps! I spoke to a fellow MS sufferer who told me that he can't work because he gets so tired and falls asleep all the time. It all makes sense now and I felt a little better that it wasn't just me. The power of hearing that it isn't just you, it makes you feel a little better that there is a genuine reason for it and you are not alone. So if you are feeling this way at all......talk to someone, your MS nurse, your partner, your family, your physio, anyone! You are not alone.

I am being referred for more physio and to see the fatigue management team so hoping that they will be able to guide me and give me some strategies to help me cope. I am still working 2 days a week which is probably a good thing. Although very oddly on the days I work I seem to have more energy and don't ever feel sleepy. This shall remain a mystery!

Bye for now,

Em xxx

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