Monday, 11 December 2017

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 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 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

Saturday, 7 January 2017


I really cannot believe that I have not written since November, only seems like yesterday. So we have had Christmas, New Year and I am already back at school. Seems like a bit of a blur really.

Where to start? Lets start with Christmas. As I am sure many of you reading this can agree, one of the most exciting, lovely but stressful times of the year.  More so if you are a single parent having to 'share' your child/children over the festive period.  Yes my ex and I have alternated who Ava spends Christmas day with every year but this year was the first year that she stayed with him Christmas Eve  and therefore Christmas morning. So I woke up alone, no squeals of delight at 5 am from an excited little girl who realises that Father Christmas has been, no wrapping paper all over my bed, no magic. It was very odd, a complete anti climax. The presents were all under the tree for her and I knew she was with her new family, her dad and his fiancĂ©e. I was on my own, and it felt very lonely and I didn't like it. I gathered up her presents and went to my parents house to have Christmas dinner. But first we visited my nana in her nursing home where she is living now. Unfortunately she is suffering from dementia and remembers very little and can be very confused. She was on good form and it was lovely to spend time with her. She is 96 (I think!) and still going strong.
So we collected Ava at 5pm and she reeled off her list of what Father Christmas delivered to daddy's house before proceeding to demolish the pile of presents that I brought for her from our house. She was a very lucky little girl, lets put it that way! We played a couple of board games as you do and had an early night. I was making lip balm at 720 am the next morning, one of the delightful presents from Father Christmas (he really should think more carefully next year with his choice of present!). We had the traditional ham for boxing day and way to much chocolate before taking Ava back to see her dad and his dad and family. After a couple of days, Ava came home and we tried to re-home all her new toys. She had a smart tv from me for her bedroom which she loves. She is growing up.......

New Year - It was again daddy's turn to have Ava and this time his fiancĂ© and 2 girls were staying so Ava was very excited to see them as she doesn't see them very often. Anyone who is separated will know that this a stab to the heart, but reassuring in the same breath. As much as you are happy that the separation was the right thing for you, it is very hard to see Ava so excited to go and see another lady who is actually going to be her 'step-mum' eventually. I am also relieved and pleased that she likes her, one less thing for me to worry about. It is especially hard when she is with them, I am on my own. I haven't found anyone yet, seems MS is a deal breaker. So I gatecrashed some friends (couple friends) plans and went to our local community centre on my own.  It was lovely to get out, lovely to see in 2017 with actual people not virtually or in pj's with the cat. But as much as people try to make me included (and they really do try), I still feel excluded.

I will never 'fit' in again, I will never be able to dance again, people smile sadly at me, they treat me differently, I do not have anyone to share special times with. So perhaps I should try dating again? Perhaps that should be a resolution of mine for 2017 - find a man!!

Please don't feel sorry for me, just treat me normally. I am a human being with feelings, don't exclude me, help to include me......

Love Em x

An insight to my life with MS