cubcake

Thanks Shelly, I feel for you, do you have someone to lean on at all?
Went to GP with my boys today..time for a sort out...my eldest son is having lung function tests next week (they thinking asthma), and the youngest who's had back trouble for some time, is being referred to Rheumatology as GP is thinking Ankylosing Spondylitis...they are just 23 and 22...manageable conditions but the youngest is worrying me, he thinks he has what my hub had..I'm only now finding out it's been playing on him for weeks. This rotten disease permeates everything..I am so glad for the forum and the people who respond to me, pals and cals. Clives progression was whirlwind speed, I havent lived with als long in my life at all compared to so many but I know I'm changed. I miss him so much...
I think about you every day and how you manage to cope, you are amazing Shelly. Thanks for finding time to be my friend.
Love, peace and strength coming along the airwaves to hold you up xx

re the bridge, al was an amazing man , wish i knew him

Hi Shelly- Thanks for your message- your post hit home. I'm really happy Wright replied- sounds like better than bad news for Tim @DIHALS. That always warms my heart. You too- have a nice day.

Hello Shelly,
it's hard doing the shop with a man on wheels..
I did it online in the end and had it delivered. Wish I lived round the corner, I'd help you xx
My kids have been great but I'm feeling a bit smothered sometimes, just want a bit of time on my own with my thoughts, I dont want to sound ungrateful.. I've been trying to ressurect good memories from before the disease but not having much luck..feels like its always been there!! I hate it... I am struggling on the sleep front, it has to improve one day.
She sounds a rotten sort, my hub's ex was a bully.
His mum said a nice thing to me at the funeral..that he only started living when he met me..
I think of you lots Shelly, strong lady, love and hugs to you, Mair xx

Hi Shelly,
Thinking of you. My dad is now home for awhile staying in his own house. He just got home Wednesday night but came down with either the flu/ or food poisoning right away. He had vomitting and diarhea. It really scared me. Luckily, he is feeling better and is eating again and has been drinking plenty of fluids. I was so worried he would get dehydrated. You know yourself that everything scares you with ALS. My dad likes to watch movies so I'm hoping to find some good one's to rent for him when he starts feeling better. Want to try to keep his spirits up as much as possible. Take care, Kim

Shelly, you are doing an amazing job, are you getting some help now?
Please be mindful of yourself when moving Fred, I now have some achey bits I didn't have before.
Strange day today as I went to get the funeral bill and got to bring my man home with me...now what?
More headwork...I'm all out of space in there!!
My sons are babysitting me..taking it in turns so I am not by myself at night. They are 22 and 23, my daughters are 28 and 30, and I have two lovely sons-in-law as well, nothing is too much trouble, they all live close by, within ten minutes by car. I am well supported by them all.
Thanks for still thinking of me as you continue to travel the bumpy road. Mr Niggs is content BECAUSE of you and all your efforts...
Love to you both, Mair xx

Hi Shelly,
Nearly 3am and still no sleep...grrr!
How you doin' and how is Mr Niggles?
Think of you often xx

Hi Shelly,
Life turns on a sixpence...or so they say..how true that is eh. I just wanted to say Hi to you and thanks for your messages here and on my blog. My heart has been replaced by a huge black hole at present, I am so very glad for my sweetpea that he is at peace and free from struggle, because struggle he did, with every aspect, but I'm so sad, and angry and feeling downright evil on times..and I'm lonely. It hurts, everything was so intense, and then suddenly - there is nothing...but enough of that.
Keep well Shelly, enjoy each day, love to you both, Mair xx

He he...hi Shelly, by niggles, I meant piddling little irritations that can't wait..like two drips of wee that have to be wiped up straight away or move cushion half inch one way then back to where it was originally..maybe these things are probably of paramount importance to hubby, but to me (on empty sleep) they are niggles, like minor irritations..excuses to wake me so he is not alone eh, even though I am five feet away from him on the couch..I am trying to be saintly sweet and forgiving but I'm only human with fatigue raging...
and then he scribbles on paper...IM SORRY...and I LOVE YOU...and I melt...
Was Fred okay this time you had to leave him?
M x

Hi Shelly,
Hope everything was good at home while you were away..
Things have kinda escalated a bit here, now we have 2 carers in x2 a day, hospice and District Nurses popping up all over the place, GP planning on 'popping in' x2 a week and all the gear for Clive to have pain relief and calming meds via a syringe driver (as is the norm, he agreed on monday then refused when it came to it..) but at least it is all here and I just have to ring to set it up when he says yes. If it is approved Shelly, I may even be allowed a night sitter maybe twice a week so I can kip upstairs...cos he is wearing me out..up 5 times to him between 2am an 6.30am for niggles, once I was up, he stopped it..I think he does it for company and reassurance...hoist over bed and sling here now, I hope he will go into bed tonight and rest a bit better..he is worn out, not eating, hardly had any fluid today. I am relieved to get physical help but mentally, it's something else..and happening way too fast..
Hugs xx

HI Shelly,
How are you? Just trawling, stopped to say HI..
Thinking of you,
Mair x

Hi, that's just typical isn't it, the first time you leave him with someone else, something happens...doesn't help the confidence to do it again.. My sanity minutes are bubbles tubs for the forseeable future now, I have given in trying to get out, (I may nip to the shop or library) I had a change of heart about stuff as Clive really has deteriorated just recently. Its scary Shelly, he hasnt eaten in over a week, is barely getting fluids in. Refused the tube full stop. We had the 'end of life care' chat with the gp on Tuesday so no more appointments, just make him comfy as I can. His bed is coming today so I'm hoping that helps, he's gotten so thin. I'm dreading having people in, and who knows for how long...
I'm 50 on Sunday...I never dreamed I'd be dealing with all this....and just when I found one that was house-trained too...
Hope you get a better week.
Mair x

Hi Shelly,
Scream loud...punch a pillow...go out the back and smash a jar...scribble it all on paper an set fire to it...
My favorite - stab a frozen microwave meal...
I'm so sorry you feel like you do, I would too...
How much room DO you need for a PWC? we don't have a lot but they gave hubby one..
Today though, I told them to stick their stairlift cos its 5 months too late...we are staying downstairs..
We are at the stage of getting help in now, I can't manage Clive much more by myself...it sucks..
Sanity minutes have been spent lazing in the tub with bubbles this week
Thinking of you, sending hugs..
Mair x

Oh Shelly, you make me smile...
I did it, after the week I had, just offloaded in my blog, I gave him an hours notice then went up the road to the shop/butchers and the library.
Lovely sunny crisp afternoon, only half an hour but its a start, and he seemed fine, snuggled under his duvet, not slipped down in his chair AT ALL, never said a word. So I need to just get on and do, I think.
Clive's hardly eating and drinking anything now, I'm getting really bothered about it but everybody knows the situ so that's something.
It's just hard not being able to do anything about it.
Keep feeding the fatty pieces of fluff! (I love that)
Happy days to you both,
Mair x

Hi Shelly, I've been plotting my escape all weekend, it's the doing it I have trouble with...
I too have an unhealthy addiction...to my fridge, and the biscuit barrel...
I need to get out just to walk off my peed off indulgences.
Maybe I should try go for a swim....watch this space...thanks for your support..
Mair x