Well here I am again - trying to sort out my head, my life and my emotions.
Talking to a computer is so much easier than talking to a person. Maybe because it doesn't contradict or answer back.
I cannot believe that it is over six months since Dave died. It seems like yesterday and yet at the same time it seems like a lifetime ago.
In some aspects I have travelled a long way and in others I haven't moved at all - may even have gone backwards.
Losing someone close changes you beyond recognition - you are no longer the person you were or the person you may have been at any point in your life. You are a new person - most likely not one that you are comfortable with.
You also see the world in a different light. This can be good and bad. You definitely have a greater empathy for other people's losses that you may not have had before. You also understand why those who have never lost a loved one have absolutely no understanding of your grief or what you are going through.
What is different though when you lose a loved one to a destructive illness?
I have a friend whose father dropped down dead unexpectedly a year ago - she was unprepared, she is still in shock, has not fully accepted the reality and is not ready to move on.
Another friend lost her mum a year ago after a long illness - not unexpected but still she is unable to come to terms with it, is full of guilt which prevents her from accepting her 'new' life.
So how do these observations help me and how do they differ from my situation.
Dave was diagnosed just over a year ago - so I knew that he would die - it was not unexpected except that it happened much quicker than we had been advised. So there is still shock and a lack of acceptance and an inability to embrace my new role in life and all of the new responsibilities that I have.
The biggest difference, I think, is that I cared for Dave at home, watching him deteriorate with alarming speed, watching and sharing his fear, pain and suffering. Unable to reach him as he shut us out with his own denial. Those 6 months are a blur - hospital visits, health professionals, change of routine, so much medical equipment, lack of sleep, exhaustion.... The list is endless.
My biggest coping mechanism was not to think - just perform.
You discover inner strengths that you never knew existed and are capable of more than you could ever imagine. Many friends and family were a part of this journey - others just dipped in.
And the hardest part was knowing that when it ended my world as it had been would end too.
I had been told after Christmas - when Dave had the feeding tube and the breathing machine and the downstairs bedroom that we had about 3 months - they were right although I didn't believe it at the time. But I found that if I thought we had 3 months from each day - a sort of rolling 3 months - then I could cope - I could keep up this relentless regime for 3 months without cracking. I could be positive for Dave for 3 months. I could handle this for 3 months. And,in my head, my 3 months started every morning.
Only in reality it didn't - the days of the 3 months were ticking past.
So when the inevitable happened what did I feel - numb, guilty, angry - yes all of that but also a sense of relief. Dave was no longer suffering and my treadmill had stopped allowing me to rest.
So much had happened in the 6 months since diagnosis - it had seemed like an eternity and yet it had actually whizzed by.
Now as I look back at the last 6 months I realise that it is as much of a blur as the 6 months of Dave's illness. I have filled it with numerous things - some by choice whilst others were forced on me. My coping mechanism is still not to think - so I engage in mindless activities, watch comfort TV, or have continuous sound so I can follow that instead of allowing my brain to work.
And how do I feel? Well I still feel guilty - did I do enough, was it somehow my fault... again an endless list.
The numbness is wearing off - this is not a good thing as I now feel continual pain.
The sense of relief disappeared incredibly quickly to be replaced by more guilt and a hole where Dave had once been.
I am trying to come to terms with the new me, the new life and the way people relate to this new person.
I am making myself face the world when all I really want to do is hide away, hibernate, be absorbed into nothingness.
I find it difficult to understand that people have judged me from my actions in the early days when I was just existing. I think that it says more about them than me but it hurts.
It is strange that many think that I should be moving on - after all it's been 6 months!!
Again it says more about them.
The hole in my life seems to be growing at the moment as we approach Christmas; Dave's favourite time of year; and his birthday. I'm sure that is true too for my sons and step-daughters.
So how long is 6 months been - a lifetime or a spit in the ocean?
The last 6 months has been both.
And what of the next 6 months which will take us up to the anniversary? What will they hold? How fast will they travel? Will we have learnt to accept and cope? Or will we still be as raw and vulnerable as we are today?
I just don't know.
Saturday, 19 October 2013
Sunday, 28 July 2013
Comfort Zones
So why is it that I wake up feeling quite positive but am not able to transfer that feeling into action.
Here I am at gone midday still sat on my bed in my pjs despite having been woken at 9am by the dog jumping on me.
Okay I have fed the dog and the fish and - a big improvement on yesterday - made myself coffee and breakfast but that is all.
I call my bed Comfort Zone 1 - my first target for each day is to leave it and if possible stay away from it until bedtime. I tend to sit here and 'live' through my laptop. I 'talk' to other people whose lives have been hit by MND or play games that don't involve the thought process so that I can numb my brain.
Comfort Zone 2 is my armchair - I feel good if I reach here - change of scenery - watch the tv or brush the dog but there will still be some internet connection about so that I can dive back into my virtual world.
Comfort Zone 3 is a big step into the conservatory - very calming watching the birds and looking out onto the garden.
The problem with 2 and 3 is that from them I can see all of the jobs that I have failed to tackle and really need to do something about, which is why I frequently return to number 1
I have been told that all of that is normal so I don't worry too much.
What is really strange for me is that I am totally on my own. I can't remember being this alone for years and is the reason I spend most of my waking hours attached to my laptop - it is my addiction and my friend.
I only saw and spoke to one person in the flesh yesterday - and that wasn't by choice - I bumped into them while walking Elly. They didn't know about Dave so it wasn't the best encounter.
I had three telephone calls and the rest was online.
Is that why I don't move and do things because I feel I'm not alone when I am clinging to the virtual world. Do I need to love my own company more?
So let's see if I can call on that greater strength and leave the virtual world alone until this evening and actually achieve something today.
After all Today is the first day of the rest of my life!
God bless you.
And please - although I find this therapeutic in itself - it would be nice to know that I really have sorted out my settings correctly and there are others reading it and perhaps being encouraged.
Here I am at gone midday still sat on my bed in my pjs despite having been woken at 9am by the dog jumping on me.
Okay I have fed the dog and the fish and - a big improvement on yesterday - made myself coffee and breakfast but that is all.
I call my bed Comfort Zone 1 - my first target for each day is to leave it and if possible stay away from it until bedtime. I tend to sit here and 'live' through my laptop. I 'talk' to other people whose lives have been hit by MND or play games that don't involve the thought process so that I can numb my brain.
Comfort Zone 2 is my armchair - I feel good if I reach here - change of scenery - watch the tv or brush the dog but there will still be some internet connection about so that I can dive back into my virtual world.
Comfort Zone 3 is a big step into the conservatory - very calming watching the birds and looking out onto the garden.
The problem with 2 and 3 is that from them I can see all of the jobs that I have failed to tackle and really need to do something about, which is why I frequently return to number 1
I have been told that all of that is normal so I don't worry too much.
What is really strange for me is that I am totally on my own. I can't remember being this alone for years and is the reason I spend most of my waking hours attached to my laptop - it is my addiction and my friend.
I only saw and spoke to one person in the flesh yesterday - and that wasn't by choice - I bumped into them while walking Elly. They didn't know about Dave so it wasn't the best encounter.
I had three telephone calls and the rest was online.
Is that why I don't move and do things because I feel I'm not alone when I am clinging to the virtual world. Do I need to love my own company more?
So let's see if I can call on that greater strength and leave the virtual world alone until this evening and actually achieve something today.
After all Today is the first day of the rest of my life!
God bless you.
And please - although I find this therapeutic in itself - it would be nice to know that I really have sorted out my settings correctly and there are others reading it and perhaps being encouraged.
Saturday, 27 July 2013
A widow's tale - life after MND
All it takes is a text or a short message on here to let someone know
that you care - so many do care, and I am truly blessed by the number
of people who are here for me, but so often it is those who we hope will
care that are too busy to reassure us. Can you tell that I'm having a
down day?
I have truly been amazed by the help and support that I have received from unexpected quarters. Sometimes just a text or message on Facebook that lets me know that I am not alone and that someone somewhere is thinking about me. But somehow, when you feel down, raw, tender and sensitive, that is not enough to counteract the disappointment that comes from the fact that it is those I love who have failed to be there.
I cannot begin to explain how much I am struggling or how disappointed I am in myself for not being stronger. For example uless someone is physically here in the house with me I find it almost impossible to walk out of the door. If I am on my own, I find it hard to do anything especially if it requires thinking - which is probably why I have done so little on here.
So I haven't cleaned my house, I haven't cooked myself a meal, I haven't mown my lawns, I haven't read a book, I haven't even watched the tv!
But if someone is here with me you would think that I am doing fine. I laugh, I talk, I function.
Please can someone explain why this grieving process gets harder and not easier?
I thought that I was doing okay by facing things asap - but actually that doesn't seem to have helped.
I want to be strong for my boys, they need me. They mustn't feel responsible for me because they must learn to live their own lives with this strange new normal which has been thrust upon them.
The girls have their families, which I hope helps them to cope because they too have to be strong for their children but they have their husbands to lean on, who can be strong for them.
My sister in law also has her husband to support her when she wobbles.
I love them all dearly and would be so lost without them - what I am missing is someone I can lean on - someone who is there to be strong for me. But that was Dave - and that is the reason that I am in this stupid state - he has died, he has gone and I miss him.
I'm lucky because I have my parents still but I have to be strong for them too.
They want so much to help but they are so far away and it is difficult to get them here - and would it really help if they were.
I have to go through this - I genuinely don't think that postponing it helps. So I come back to - Why is it getting harder and who really cares when I am sat on my bed at 3 o'clock in the afternoon unable to motivate myself.
The answer is God. My faith has not wobbled at all during all this past year - what has changed is that I find it hard to pray, read my bible or go to church but I know that God is there carrying me, gently supporting me.
So when people let me down, I bring them to God knowing that He will never leave me and that He has a plan for my life.
Sorry that this has been so negative - I think my counsellor would say that it is all part of the healing.
God Bless you all.
Just read my second ever blog - almost a year ago - it's amazing how much has changed.
I wonder will I ever be strong and cope on my own?
I have truly been amazed by the help and support that I have received from unexpected quarters. Sometimes just a text or message on Facebook that lets me know that I am not alone and that someone somewhere is thinking about me. But somehow, when you feel down, raw, tender and sensitive, that is not enough to counteract the disappointment that comes from the fact that it is those I love who have failed to be there.
I cannot begin to explain how much I am struggling or how disappointed I am in myself for not being stronger. For example uless someone is physically here in the house with me I find it almost impossible to walk out of the door. If I am on my own, I find it hard to do anything especially if it requires thinking - which is probably why I have done so little on here.
So I haven't cleaned my house, I haven't cooked myself a meal, I haven't mown my lawns, I haven't read a book, I haven't even watched the tv!
But if someone is here with me you would think that I am doing fine. I laugh, I talk, I function.
Please can someone explain why this grieving process gets harder and not easier?
I thought that I was doing okay by facing things asap - but actually that doesn't seem to have helped.
I want to be strong for my boys, they need me. They mustn't feel responsible for me because they must learn to live their own lives with this strange new normal which has been thrust upon them.
The girls have their families, which I hope helps them to cope because they too have to be strong for their children but they have their husbands to lean on, who can be strong for them.
My sister in law also has her husband to support her when she wobbles.
I love them all dearly and would be so lost without them - what I am missing is someone I can lean on - someone who is there to be strong for me. But that was Dave - and that is the reason that I am in this stupid state - he has died, he has gone and I miss him.
I'm lucky because I have my parents still but I have to be strong for them too.
They want so much to help but they are so far away and it is difficult to get them here - and would it really help if they were.
I have to go through this - I genuinely don't think that postponing it helps. So I come back to - Why is it getting harder and who really cares when I am sat on my bed at 3 o'clock in the afternoon unable to motivate myself.
The answer is God. My faith has not wobbled at all during all this past year - what has changed is that I find it hard to pray, read my bible or go to church but I know that God is there carrying me, gently supporting me.
So when people let me down, I bring them to God knowing that He will never leave me and that He has a plan for my life.
Sorry that this has been so negative - I think my counsellor would say that it is all part of the healing.
God Bless you all.
Just read my second ever blog - almost a year ago - it's amazing how much has changed.
I wonder will I ever be strong and cope on my own?
Thursday, 6 June 2013
All Changed
So it's been a long time since I've written my thoughts on here. I think that's because it's been a long time since I have allowed my self to think.
Thinking brings fear, uncertainty, sadness.
So much has happened. I knew that Dave was going to die, I just thought that we would have longer together. Time to prepare - if you ever can - both emotionally and practically.
It seems impossible to think that a year ago we didn't even know that he had MND and yet now he is gone.
Why is it that when those we love die, we think only of the things that we didn't do or didn't say but should have or the the things that we did do or say but shouldn't have.
My biggest regret is that I was more of a Martha than a Mary, putting so much effort, energy and emotion into caring for him that I actually didn't sit still enough and just be with him.
And now he's gone
And I can't make it up to him
What is daft is that it was easier to be with him when we were alone
But we were so rarely alone
And I so wanted to believe that we would have a long time
Now I have so much time but no Dave to share it with.
So many jobs to do - some well within my capabilities but many I have never done before - yet I don't have the incentive or energy to do them.
I consider getting out of bed an achievement, walking the dog is like completing a level. Anything else is a big NO!
Scared to leave my house.
I don't want to be alone but when friends call I want to be alone.
How ridiculous is that?
So many things to sort out but where do I start?
I need to start caring for the garden, maintain the cars, decorate the house, sort out the finances - not an easy task when your income is a bereavement benefit and half of your husband's pension!!
Then there's still family to visit and care for.
All this when getting out of bed is an achievement.
I would be lying if I said that faith hadn't waivered - but the fault is mine.
I know that God is waiting there for me to turn back to Him,
I know that this is my Footprints - that if He wasn't carrying me I would have sunk so much lower.
I don't know if I am truly at my lowest ebb yet but I do know that I am finally trying to lift myself up.
Thinking brings fear, uncertainty, sadness.
So much has happened. I knew that Dave was going to die, I just thought that we would have longer together. Time to prepare - if you ever can - both emotionally and practically.
It seems impossible to think that a year ago we didn't even know that he had MND and yet now he is gone.
Why is it that when those we love die, we think only of the things that we didn't do or didn't say but should have or the the things that we did do or say but shouldn't have.
My biggest regret is that I was more of a Martha than a Mary, putting so much effort, energy and emotion into caring for him that I actually didn't sit still enough and just be with him.
And now he's gone
And I can't make it up to him
What is daft is that it was easier to be with him when we were alone
But we were so rarely alone
And I so wanted to believe that we would have a long time
Now I have so much time but no Dave to share it with.
So many jobs to do - some well within my capabilities but many I have never done before - yet I don't have the incentive or energy to do them.
I consider getting out of bed an achievement, walking the dog is like completing a level. Anything else is a big NO!
Scared to leave my house.
I don't want to be alone but when friends call I want to be alone.
How ridiculous is that?
So many things to sort out but where do I start?
I need to start caring for the garden, maintain the cars, decorate the house, sort out the finances - not an easy task when your income is a bereavement benefit and half of your husband's pension!!
Then there's still family to visit and care for.
All this when getting out of bed is an achievement.
I would be lying if I said that faith hadn't waivered - but the fault is mine.
I know that God is waiting there for me to turn back to Him,
I know that this is my Footprints - that if He wasn't carrying me I would have sunk so much lower.
I don't know if I am truly at my lowest ebb yet but I do know that I am finally trying to lift myself up.
Saturday, 22 December 2012
Here we go again
Mmm, alcohol and blogging are too inter related for my liking.
I don't think I have ever in my whole life drunk a whole bottle of wine before - made me confess things to people, say things that I didn't mean to say
Learnt again that my sons are much better people than I ever was
I love my family more than I could ever explain.
I love to spend time with them, would love to get them all together.
Had a great holiday a couple of years ago - only a few people missing - then everyone together for Dave's 70th last year
I would genuinely give anything and everything to get everyone together this Christmas but it's not going to happen.
I have had a very blessed life - my blessings still outweigh my problems
Pray and praise always - confess our sins - in this case drink
New day - new start - God bless
I don't think I have ever in my whole life drunk a whole bottle of wine before - made me confess things to people, say things that I didn't mean to say
Learnt again that my sons are much better people than I ever was
I love my family more than I could ever explain.
I love to spend time with them, would love to get them all together.
Had a great holiday a couple of years ago - only a few people missing - then everyone together for Dave's 70th last year
I would genuinely give anything and everything to get everyone together this Christmas but it's not going to happen.
I have had a very blessed life - my blessings still outweigh my problems
Pray and praise always - confess our sins - in this case drink
New day - new start - God bless
Sunday, 16 December 2012
Nearly Christmas
So it's nearly Christmas - I love Christmas and yet it is the most stressful time of the year for me. Trying to buy presents while not spending too much money, food shopping, visiting family, keeping the house tidy. I'm trying to focus on the true meaning of Christmas - the birth of the Lord Jesus Christ - the greatest gift of all. I just don't feel festive and yet I am determined that this will be a great Christmas.
It may not be our last and yet it may - but it will be our last 'normal' Christmas.
Dave is already struggling to eat, breathe and speak.
What is difficult alone is also hard with family because you cannot protect them or hide the stark reality.
I know alcohol is not the answer but sometimes it is so tempting.
I should pray but sometimes that is so hard.
I need support more than ever before but know that I must offer it to others.
I so want my family around me - not just the sons, bur parents, step daughters, brother and sister in law
But that is harder than not having them.
MND is really awful - no-one tells you about the staying awake at night listening to your loved one struggling to breathe, feeling helpless when they are struggling to eat and speak and are in pain.
You're not warned about the guilt you feel when you don't want them to suffer and that when you pray for healing it might not be the sort of healing that you want. You're not told how tired and helpless you will feel.
You want to take their place but can't.
You can't talk to them because they are in denial.
You can't watch the TV progs that you used to because they contain death.
It is all so bad - yet I will resist the depresson and focus on God and look for the positive. I will never be prepared.
I will try to be strong.
I will share my faith.
I will love my husband
Happy Christmas everyone.
It may not be our last and yet it may - but it will be our last 'normal' Christmas.
Dave is already struggling to eat, breathe and speak.
What is difficult alone is also hard with family because you cannot protect them or hide the stark reality.
I know alcohol is not the answer but sometimes it is so tempting.
I should pray but sometimes that is so hard.
I need support more than ever before but know that I must offer it to others.
I so want my family around me - not just the sons, bur parents, step daughters, brother and sister in law
But that is harder than not having them.
MND is really awful - no-one tells you about the staying awake at night listening to your loved one struggling to breathe, feeling helpless when they are struggling to eat and speak and are in pain.
You're not warned about the guilt you feel when you don't want them to suffer and that when you pray for healing it might not be the sort of healing that you want. You're not told how tired and helpless you will feel.
You want to take their place but can't.
You can't talk to them because they are in denial.
You can't watch the TV progs that you used to because they contain death.
It is all so bad - yet I will resist the depresson and focus on God and look for the positive. I will never be prepared.
I will try to be strong.
I will share my faith.
I will love my husband
Happy Christmas everyone.
Thursday, 29 November 2012
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.
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.
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