Keeping faith

Life really can be a rollercoaster sometimes - mine at the moment feels more like a bungee jump :-(
I even feel occasionally that I've crashed into the ground and am waiting for the rope to contract again and lift me up.
Is it normal to have so many negative thoughts and then to feel so guilty.
I want a normal life back but it's not going to happen.
My husband has MND and we need to come to terms with it.
He deals with it by not talking about it; semi denying it and cocooning himself in a bubble. Which would be fine but he is not the only one dealing with it. The whole family is still reeling.
The hardest thing is how quickly things have changed.
A year ago he played golf four times a week, did the gardening, the decorating, the cooking and we walked the dog together.
Now he is unable to do any of them.He struggles to walk to the car, food causes all kinds of problems - not just with swallowing.
Although we only had the diagnosis three months ago he has obviously been suffering for longer.
I have no idea what to expect, how long we have.
I don't know what scares me most - him dying quickly or him going on for years deteriorating and suffering.
I feel I ought to cope but I'm already struggling. We've had visitors for four days which has been wonderful - not just because they came to drive us to the appointment at Nottingham but it gives me a bit of shared responsibility for a while and enables me to catch my breath.
While they have been with us Dave has been fine, they leave and chaos ensues. Dave told the staff that he was constipated and he was really worried - prescription sorted but luckily unavailable.
Tonight I have a lot of extra washing. So here I am sitting up while he sleeps in his chair which is warmer and more relaxed until I'm sure that his stomach is settled.
Why do these things happen when we're alone?
I really want a hug - he doesn't do that anymore - I'm lucky if he holds my hand and I'm desperate for a kiss.
I love him so much but I can't reach him.
I have lots of wonderful friends and a fantastic family but who do you talk to at 12.30 in the morning when all you want to do is sleep and cry? Who do you ask for advice?
How do you stay strong for everyone else? How do I support and care when I don't know what to do?
My head is splitting and I want to cry.
It's said that God doesn't give you more than you can cope with - I feel He has over-estimated my capabilities.
It is also said that when I am weak He is strong - I really hope so.
I can do all things through Christ who strengthens me - I must hold that in my mind and my heart.
It's at these moments that I realise how important it is to to both pray and praise, and I have done precious little of either recently. It's a good job that God forgives.
So now I must make the decisions - ones that are beneficial for both Dave and me.So I think it's time to take him up to bed and try to get some sleep for myself as well.
God Bless.
People obviously read this - so please comment - perhaps we could help each other.

What Comes Next

I'm really not sure that blogging after all the wine I've consumed tonight is such a good idea but am actually in a situation where I'm able to sit and type.
Have had an amazing time recently - visiting family. Learnt that it really helps to share the responsibility and that occasionally I need a drink and to catch up on sleep.
This last visit though has been really difficult. down with the parents - Mother is 88 and Dad is 89 - husband is 70.
Bizarre situation - who will go first? Can I cope? Probably not.
I decided at the age of 5 that nursing wasn't for me - not good with suffering and dire with blood - so why at the age of 55 am I suddenly caring for 3 extremely poorly people?
I love them all so much and it is so hard to cope with their suffering and try to stay positive.
So just occasionally - a long walk with Elly and an excess of alcohol is needed.
There are just  so many things to sort out - wills; living wills; funerals; what happens afterwards?; can I afford to stay where I am?; do we need to make changes to our house?  I could go on but what's the point? He won't talk about it - I will just have to cope and deal with everything as it comes.
I actually thought today that when it's all over I would quite to live down here just not sure if it's possible.
I know I have an amazing network in the Midlands but it's still North to me and walking elly by the sea is millions better than walking her through the mud.
Motor neuron disease can't be the only illness that turns peoples' lives upside down. It's so sad that you only appreciate what others may have been through when you find yourself there.
It is still so important to count blessings though. I have had a great time visiting our sons, staying with my step daughter - who is also a fantastic friend .
Whatever happend - God is in control and he will take care of all us - so time for prayers and bed.
God Bless and please - if I have made you think - please comment