Sunday 21 January 2018

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........

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 ❤

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An insight to my life with MS