The inane ramblings of a raging insomniac

Share information, support and advice on all aspects of caring.
Dear Simon,
Why is it that the nicest people in the world seem to have the greatest burdens? It's so unfair. Someone asked me once if I wished I had a crystal ball? Definitely not. The 21 year old girl who rode round the Australian outback on a road racing motorbike in skimpy shorts and a midriff top was better off not knowing that her life was going to end up far worse than her worst possible nightmare. I've often said recently that I feel it's like the song "6 wheels on my wagon" but I'm down to one and a half wheels now. I'm still here though, doing my very best caring for those I love, that's all that matters. When I just couldn't get to sleep at all after finding my husband dead, my GP gave me some medication to help me relax, and therefore sleep. I think you need to share your feelings with your doctor. I have spent a weekend waiting for the results of a scan, to find out if my life would be measured in months. I spent it cooking food for the freezer so my family would have something nice to eat over Christmas if I didn't survive the operation. I know this weekend will feel never ending for you. Does your daughter have a friend she could have a sleepover with? It might take a little pressure off you. I wish I could think of something else to ease the terrible burden. All I can say is that I am thinking of you - which is woefully inadequate, given your circumstances.
Simon,
I've been where you have been many times over the last 48yrs that I have known my wife Jill.
I've not had it as bad as you though mate, of that I'm sure.
Jill has suffered with depression ever since I met her and not one member of our large family ever understood the hell we were going through. They had no concept of mental illness, nor did they even want to try.
Five years ago Jill had a series of TIA's, or mini strokes that left her for want of a better word, quite potty. I had to give up work to look after her, causing us great hardship financially.
She was 'lucky', she didn't have proper strokes like your wife.
Last year she had more TIA's whilst on holiday in the Midlands. She wouldn't let me help her at all, so after a stay in hospital, she was transferred to a care home and has stayed there until this week when I have had her back home on a trial run.

You can no longer worry about your parents or sister. Your priority is to your wife and daughter. Too bad what the family think, they have no idea what it's like in your shoes.
As for the future, to hell with it. One day at a time, thats all any of us can do. It's no good trying to plan, it hardly ever works out anyway, as we have found out to our cost.

I think your one remarkable, brave, heroic man, who is far stronger than he gives himself credit for. The love for your wife and daughter shines through in your heartfelt post.

I take my hat off to you both and can only wish you good news on the MRI scan.

Sincere good wishes Simon,

Pete.
Thank you once again.
I dont see myself as anything special, I just do the best I can with what I have but somehow that doesnt seem to be enough sometimes.
Today my wife very definately isnt well, complaining of a headache and throwing up, a word with the doctor who simply said "keep an eye on her" she is currently in bed sleeping, im poppingin and out every 30 minutes fearfull of waking her if its rest that she truly needs but at the same time scared stiff in case another stroke hits while she is asleep.
My 15 month old daughter, too young to have freinds to go on sleepovers with, is here with me, I think she can sense something going on, she refuses point blank to go down for her afternoon nap so im trying to keep her occupied whilst I sort the rest of the house hold tasks, alas she is teething badly and very clingy so leaving the room even for a few minutes is resulting in her screaming her head off to the point where I have to come back to her for fear of her waking my wife.
Im tired, I retired to bed at 12:30am but sleep eluded me until 3am, from there cat napping, jolting awake at the slightest movement from my wife or a moan from the nursery as little one stirred in her sleep.
A beautifull day outside yet I dare not venture out and take my daughter to the park, I cannot leave my wife for fear of anything happening or her freaking out if she woke and we are not here.
Once again I foind my mind racing with a million thoughts, the stereo on low playing my favourite slow music album is doing nothing to distract me.
I feel like im the one going mad right now, the constant worry of the results we are waiting on, the worry about my wife as she is now and trying to take care of littlun and keep the house in order.
I know in my heart if hearts that this is just one of the really bad times, it will pass, I hope.
Sorry Simon, I didn't realise that your daughter was only 15 months old, far too young for sleepovers, I agree.
Hope it passes Simon, scary times, you are doing your best, keep telling yourself that,
Minnie
Hi Simon,

I've had chronic insomnia for years now and can identify with much of what you've said, although I don't have anywhere near the amount of stress in my life that you do right now.

I am carer to my elderly parents, who have a mixture of problems that play on my mind a lot. It's the classic problem of my mind whirring away about all sorts of issues and ongoing problems, and not having an "off" switch. I've found that sometimes listening to the radio can help to distract me from my worries. I favour Radio 5 "Up All Night" which runs from 1am to 5am and often has quite interesting phone in discussions on all manner of things (books, films, music) as well as a science phone in which can be truly mind boggling. Sometimes though Radio 5 becomes a no go area for me, when it gets taken over by sports commentary (I hate sport), so then I tune into Radio 4 Extra, which somtimes has plays on. I keep the volume quite low then set the sleep timer to turn the radio off after an hour - quite often I'm asleep before the end of the hour, which is a good result for me.

So sorry to hear about all your wife's ongoing health problems. I agree with what others have said - you need to put your wife and child first now, regardless of what the rest of your family may think. If you spread yourself too thin you may just disappear completely.
Very thought-provoking post, heartbreaking really. Everyone has a novel in them, that's for sure.
Given the age of your daughter, and the lack of normality in her homes cirumstances, social services might be able to arrange for regular weekend shared-care with another family to give you a break. You need some solid back up for when things go pear shaped in future, and they probably will, especially given your own health care issues.

They may also be able to locate some kind of residential breaks for your wife to give you a rest and the chance to be a normal dad. I cant imagine how you are juggling both sets of needs, your wife and your daughter, but I think you need help, urgently.
Yet another night of zero sleep, this is getting beyond a joke now, im contacting my GP in the morning, ive had enough of this no sleep crap, 1 semi decent night in 7, im knackered and ive had enough.

I appreciate what you are saying scally but with all due respect my daughter is staying here with us, I simply wouldnt trust anyone else looking after her especially after what weve been through to get her in the first place.
It turns out her being unsettled is being caused by an infection she has picked up so we have that under control and she has, so far slept well tonite. Its just me thats not getting any sleep now.