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 ❤

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