Monday 14 September 2015

Week 17 - MS - Nah it's not a problem

So sorry updates are not coming bi-weekly of late.

With the house move, settling in and the latest family news I'm really being quite rubbish at this.

I've now gone nearly 10 days without an oxygen treatment as I had to cancel Saturday

So the family thing - My grandmother is 91 and has lived in a dementia care home for nearly 10 years now. Her dementia is very advanced, she's pretty much in a vegetative state, and has been for probably nearly 3 years. Can't speak, cant feed herself, can't walk, completely dependent upon the nursing team for everything, and spending most of her life sleeping. Mid last week the alarm bells were rung as Nana stopped swallowing food and liquids. By Friday my Aunt and I assembled in Bolton at the care home to 'sit vigil' for her with them expecting with her being so frail and weak that she would be gone within 48 hours or so.
As I write she's hanging on in there and not deteriorated since we arrived last Friday. Nana has always been such a strong willed controlling person (must be one of the many places I get it from) but she's not done and soldiering on.
We have mixed feelings about this, it feels like we've been grieving for nearly 10 years as the little pieces of her and her personality have been eroded by the dementia. If she could see how she is now she would be as mad as hell and tearing strips off us for allowing this to happen to her. While it breaks our hearts, it would be a blessing for her is she went to sleep and to her rest to join Granddad, Mum, Dad and my brother Ian (actually she would be furious to get there and find Mum and Ian there - but we couldn't tell her they were gone, she would have just been terribly upset but not understand why)
I've spent 12 hours driving over the last few days, not enough hours sleeping and a lot of time being emotionally wrung dry. As a result I'm exhausted. Exhaustion always makes my MS like symptoms feel more pronounced, I've had a little foot drop, I'm word splicing again - I referred to a SpreadSheet earlier as a ShedShreet, and physically I'm so tired I'm very shaky. It's not a relapse or MS raising it's head permanently it's just exhaustion and I need to rest for a few days (It took a week to get over house moving weekend so that's what I'm expecting)

My 4 month bloods are scheduled for Wednesday morning (a week early I know - but nice nursey - the one who always does it with one hole in me is on holiday next week and I'm not letting the other savages near me with a pointy thing after the 5 holes for one blood vial fiasco)

Should have some more positive lymphocyte counts to report by the end of the week or early next week :-)

So back I go to waiting for news of Nana, a call saying get here now, or one saying she's gone. I've had quite enough of the loss over the last 4 years and heaven help me I'm dreading reading Footprints another time :-(

But I'm tough - a Lem-Warrior and all round hell on wheels. Everything will be okay.

Hope you're all taking care of yourselves, staying strong and enjoying the love and care of family, friends and furry critters.

Love and the usual from me
Tracy xx

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