You know those evil pens you can get that you leave lying around and wait for some poor sucker to pick it up and press the button only to receive an electric shock? Imagine the feeling of that electrical charge running through your fingers 24/7 and you will be somewhere close to how my fingers and hands feel all day every day. It is driving me insane!
If I straighten my arms I get it running from my neck, down my arms, and intensifying in my fingers and hands.
Lifting anything aggrevates it and I just can’t get it to stop!
My legs are spending g their days having massive spasms and alternating between them. My poor hubby just had to try and untwist me as my left leg was in such a bad spasm!
It was ridiculous! It sends my back into this intense electrical pains, firing left right, up and down.
Imagine trying to function as a human being whilst feeling awful and at times (a lot of times) feeling utterly useless. Some people say it is mind over matter but seriously this isn’t something I can think away.
I’ve had so many people talk to me with such pity in their voice or talk over me, asking whoever is with me how I am. It used to drive me mad when people did it to Lewis but now it angers me. Just because my legs & trunk don’t work it doesn’t mean my brain has given up!! I may get my words muddled but give me a few moments and I’ll get there.
This week, however, has been totally different.
This week we are staying at Naomi House Children’s Hospice ( http://www.naomihouse.org.uk )
Here Lewis is treated like the child he is, fun loving, mess making, extremely cheeky birthday boy.
He has been spoiled rotten by friends and family who all visited and came to celebrate with us.
We are treated as individuals, none of the attitude of we are just like any other parent. We are treated individually, accepting our worries, fears, happiness and tears.
I’ve had the best week since I fell ill. I’ve been listened to, helped when I needed it and accepted me as me, a lady/mum/carer/wife/friend/sister/daughter.
I’ve been made copious amounts of Tea, been helped across the ever annoying carpet that sends you in random directions, helped carry my meals to the table & helped be a mum (not a carer – I’m not allowed to be any more 😦 )
I’ve been able to watch Lewis play with sensory story items, get covered in paint, splash in water and wriggle on the floor and all without worrying if I am in the way.
I am being treated with dignity and acceptance but at the first sight from carers I am hugged tight while they hold back the tears.
This amazing hospice is one place I really can be me. The place where I can relax and forget all the crap that is my illness and enjoy life the way I should.
It will be back to reality with a bump come Friday. I’ll have to make my way home with the hubby and the boys and settle back into the usual routine.
Being here really gets me thinking about how life should be. It has reminded me that it can be fun filled and happy and that I can enjoy things even from my chair.
I’m surprised though that my wheelchair hasn’t been decorated in some way seeing as everyone like to get messy!!
Oh well. Time for bed and a sleep before our last day of being ‘just mum & Lewis’
Got to make sure we look our best for Friday. Lewis has been chosen to pay Naomi House’ rent to the land owners. A dozen red roses on midsummer’s day. Mrs Cornelius -Reid donated the land for Naomi House to be built and all she asked for the rent over the past 20 yrs was a dozen red roses on midsummer’s day and for the hospice to be named after her daughter ‘Naomi! )
So looking smart and summoning every ounce of self confidence, we will meet with all the bosses and Naomi C-R, who now accepts the rent on her late mothers behalf.
Right I really am off to bed. Legs are spasming and I need my meds!
Transverse Myelitis & Me, With A New Addition! 