Mums operation

I am very happy to report after months of waiting mum has finally had her “urgent” spinal operation and is recovering well.

As you can imagine its been a stressful week. On Monday mum and I were saying “well it can be cancelled right up until the last-minute”. Mum was refusing to pack her hospital bag as last time she did she had a phone call five minutes later to say it had been cancelled.
Mum was in theatre for five hours and the operation was much more complex than originally anticipated as these things invariably are. Mum ended up having to have her spine broken so that they could correct the dislocation and fuse her vertebrae. 
After surgery she was in a lot of pain and ended up being in recovery for a few hours whilst they got on top of it.
It was a very long day for all of us patiently waiting to hear any news. If I am honest Tuesday felt like a thousand days rolled into one and I had barely slept the night before because mum’s impending operation was playing on my mind.
I was lucky enough to speak to her today (Wednesday) and although on morphine and a little out of it she was sounding an awful lot better than I thought she would. She will be in hospital until at least Friday due to the extensive nature of the surgery. She is very wobbly on her feet and can’t walk at the moment. She has managed to get out of bed and sit on a chair, which after what she has just had done is a major bloody achievement as far as I am concerned.
As I am exhausted from the stress of it all, as you can probably imagine, this is just a short post to let you know that finally mum has had her operation.
For more news on mum’s recovery please visit The Myasthenia Kid on Facebook where there will be more regular updates.

What’s the word I am looking for?

One of the symptoms I have developed since becoming ill or should I say sicker to the point where it could be ignored no longer is Aphasia. Its pretty mild and fluctuates on depending how tired I am. I mainly struggle in finding the right words for objects or replacing the word with a completely different one. Names are also a problem, I can run through all the male names in my family before calling my husband by his first name and that includes the dogs names before I get it right.

Yesterday for example I thought to myself “I must really decaffeinate myself again” (it even affects the words in my thoughts). I didn’t intend to go caffeine free what I actually meant to say to myself was “I must really catheterise myself again” as I hadn’t done it for around a week and I am still in the practising stage. That one really made me laugh however there are times when the aphasia is so bad I can only retrieve one word for multiple objects. It becomes incredibly frustrating for me and poor hubby can really struggle with translating what I really mean.
It is exasperating for me as 9 times out of 10, the word is there on the tip of my tongue, it’s just when I go to say it, it is replaced by another word. Other times I can not remember the word at all and this usually happens when I am utterly exhausted. My brain can not retrieve the word nor come up with a suitable replacement. For someone who loves words, who writes and just wants to say a simple sentence out of all the crazy symptoms this one alone can drive me to tears.
A few weeks ago every object I went to name came out as “sofa”, not at all helpful when the words you wanted were coffee table, washing machine or bookcase. The scenario was my husband had mislaid his keys, I knew where the keys were or had an idea. When I tried to tell him that his keys were on the coffee table it came out as “the keys are on the sofa”. For around five minutes I persevered with trying to give him places where his keys were, all the time replacing the correct word with sofa. I felt like the village idiot and it didn’t help my husband find his keys.
There have been some hilarious moments with the aphasia when I have replaced words with something quite ridiculous. A few years ago hubby and I were driving along a narrow country road with low hanging trees. All over the road and the hedgerows there was hay that had been strewn from a passing vehicle. I turned to my husband and in all seriousness said “There has been a big helicopter through here”. My husband started laughing and replied “I think you mean lorry (truck)”. How on earth my brain thought a helicopter was remotely like a lorry I have no idea. With aphasia you know what you mean and in your head the sentence seems correct until someone points out your error. Other times you are left struggling to complete a sentence as your mind goes completely blank and for the life of you, you have no idea what the words is.
I have also sent my husband on countless fruitless searches for things when I have known the location of something but sent him to the wrong place. One of my favourite locations to name is the shed. I seem to have the word shed permanently on the tip of my tongue. So much so that hubby will ask me to repeat myself if he knows for sure that something like my many hot water bottles are not stored in the shed. My second favourite location is the airing cupboard, usually said when my husband has asked me to repeat myself. Again he knows more often than not that the item requested is not stored there. How he doesn’t brain me through sheer frustration I have no idea. I honestly do not think I could ever be as patient with him as he is with me.
I have raised the aphasia with my consultants who have put it down to cerebral hypo-profusion – as in not enough blood / oxygen getting to the brain. It makes perfect sense to me as this is something that has developed over the last few years which is when my symptoms have rapidly worsened.

The weirdest thing is my ability to swear (curse) has not been effected at all by the aphasia. Those words come to me very easily unfortunately!

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Mum update

Mum’s operation has been rescheduled to the 28th April – next Tuesday. If she has had her operation I will update you in my blog post next week.

Baby update

My sister had a scan last week and she is expecting a ………..boy!

Hospital Stay Update

As far as hubby and I are aware I will be admitted for tests w/c 11th May.

Health Update

I have cellulitis again. 5th bout in 10 months deep joy!