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June
25th November 2012, 22:35
It's me,Jan!
Is it me or do other people find weekends particularly hard?
I think that the last 2 days have been perhaps the worst 2 days ever. I joined the 'gang' a few days ago. I felt immediately uplifted on reading the posts sent to me.
As Friday night turned into morning an overwhelming sadness took me over. My usual strategy at such times is to DO. It really doesn't matter what I do as long as my mind is busy. It felt too big to handle so I got my iPod and through the headphones blasted my thoughts into oblivion.
When did it get so hard? How long can these feelings persist before it all gets too much?
I'm so glad I found the forum. Somewhere I knew that I was no longer alone, I had all you. THANKS!!!!

Jan

Smudge
25th November 2012, 22:42
Hi Jan

I think it comes in waves, sometimes the waves are small enough to paddle in, other times they are massive. On a good day I can surf the bigger ones and on a bad day I just lay own and hope the wave will carry me safely to shore.
Sometimes all we need is to know that we are not alone and even though we think that there is nothing we can do to help our little community, just knowing that there is someone, somewhere who is reading our posts and offering a shoulder is enough to get us through.
The kindness of strangers should never be underestimated.

Wendy

magic
25th November 2012, 22:57
Hi Jan.
I am a carer but can empathise with the weekend being a bit 'limbo like'. The professions are 'off duty' and the working week is finished. As a carer I can miss the co pant of work colleagues but try to make life fulfilling for us both. I ask am co joined to my I pod and I pad and really value this site.
Magic

Rory
26th November 2012, 08:09
Hi Jan
I think a male perspective is needed here as well ! I was feeling fine on Friday as well.
Saturday , I saw England lose at rugby, my football team are heading for relegation , my mate Steve came round to watch the rugby and finished my rum off ( I won't be inviting him again!) , my lovely wife went out shopping and reduced the bank balance further and to cap it all I had to endure watching Strctly Come Dancing as she had control of the remote !!

But on the bright side, England have just beaten India at cricket, Irene has gone off to work and left me the remote and more importantly, i have been cheered up by several blogs !

Please excuse my humour (or lack of it !) but now Monday has arrived, I wish you the strength to get through each day with a smile on your face !

Take care

Rory

Joybells
26th November 2012, 10:33
Hi Jan,
we all experience waves of utter sadness - the thing to remember is they don't last. My husband was impatient with me this morning at a time when I was feeling low -I howled for over an hour but I'm alright now, still cross with him for something that wasn't my fault. I got my own back I've got the TV remote.

Joybells

looby
26th November 2012, 11:33
Hi everyone
I agree the weekends are difficult. Before my husband's MND had progressed as much we still spent every saturday walking the paths and byways of the countryside. Long distance walking was our hobby and holidays were spent covering 10-15 miles a day. When this first became impossible i felt depressed every weekend -- my body, brain and heart wanted to be out on a hill somewhere with my husband and our devoted border collie. For a long time I wept buckets every weekend and was no help at all to my husband who felt the loss even more keenly than me. But we got around it by me firstly pushing him along suitable tracks in his wheelchair and then bought a scooter so he could be independent and we could go further. As his disease has progressed quite quickly i don't know for how much longer this will be an option. Transfer to the car and to the scooter now needs two people so I know time is running out.

pete
26th November 2012, 14:09
Hello. Everyone,


It wasn't until I read the weekend thread, I realised , that thanks to MND taking away my role in life, ie to provide for the family, and work long hours to pay for what we where looking forward to ,my retirement . thanks to the dreaded that still remains a bit of a long shot now , but I have to be honest everyday is so much like the one before and will be quite similar to the one that follows today, I don't get the weekend syndrome, but for those that do , I hope that it bothers you less as time passes . What I can't get to grips with is being so utterly useless ,the more I get to read the posts the angrier I become, that nothing is bringing a solution nearer for us all, despite all the good work done on our behalf, all we really want is at least something tangible ,not words or reasons why there isn't anything that's going to happen anytime soon.

Pete

mellonius
26th November 2012, 14:35
I,too,am at the point when a weekend is much the same as as weekday - so if there is a difference - cherish it! But this weekend WAS different. I have been trapped in the house for 6 weeks as the doors at the house were configured in such a way as my wheelchairs wouldn't go through safely with me in. We have had a new door with ramp built, and the family officially opened it on Sunday - and then took me to Frankie and Bennys for lunch.




i

pete
26th November 2012, 15:53
Hi Mel,

Good news , glad your able to escape now ,,lets hope the weather improves a bit ?, Was the lunch good , I used to fit the alarms in the named place along with a few other food outlets, Happy days !!!

pete

Katie43
26th November 2012, 17:21
IHello Pete,
I couldn`t agree with you more, I can`t get to grips with being useless, this time last year I was planning for the family to come at xmas, and wrapping all the presents, now I have to rely on my son to take me xmas shopping. I get angry when I read the posts that get me excited that there might be a cure in sight, all we want is for the scientists to realise what we are going through!!. I pray every night that there could be something tangible and that we could get back to our health and happiness. I even dream that I can speak and walk properly then when I wake up its not true, I have had another rant Pete, but I really do think that there is something out there that could cure us. we ought to protest and get them thinking!

Kindest regards to you and your family

Katie

mellonius
26th November 2012, 18:23
Thanks Pete - just a bit noisy for someone who can scarcely speak! Mell

roy
26th November 2012, 18:40
Hi Mel and Pete,

good choice I love frankie and bennys, my favorite are the stilton cheese burgers cant remember the proper name for them,
just thinking Pete it must have been great going around all those restuarants food tasting.Katie your right there is something out there if only the great prof hawkins had interest in medcine rather than space but then again he is not the only genious on earth today, I have the same feeling when I wake up, then switch the BBC news on those 2 lovely ladies are great distraction even if the news isnt so good.
Then my mind goes back to thinking about Mc Donalds breakfasts.

best wishes.

Roy.

Rory
26th November 2012, 18:55
Hi all
It seems you and I Kate have the same dreams ! I have woken on several occasions after dreaming I am able to eat, drink and play sport again ! It is not an isolated dream either. Worst of all I dream that I am still at work with targets, deadlines etc - so the latter is welcome when I wake up that is just a dream. A cure seems a dream for all of us - we hear much more about cures for other illnesses !
Good news for Mel though with her .lunch out.
I last played a full round of golf at Roryal St George with a new set of clubs only last year and was looking forward to playing more when I had to give up the job - it proved to be my last full game but instead I organised a golf day a couple of months ago for all my mates and we raised a considerable sum for MND research . We can still all achieve - but in different ways to the past.

Rory

miranda
26th November 2012, 19:43
I decided a few weeks ago that I could not face trying to buy Christmas presents and then taking ages to fumble with wrapping paper and sellotape so intend to give most people money instead but now I feel guilty. I know that really it will be too much effort but hate having to give in and be forced to give up yet another role that has been part of 'normal' life for many years. Then I read the posts of regulars here and chuckle at some of the newer ones and realise how valuable is my daily forum fix where we are all in this together.

pete
26th November 2012, 20:09
Hi Katie,

Why not have a rant , ranting is very good for you, As for the dreams bit ,well not on my own then , yes i plan my day just doing nothing special just run of the mill things that never meant much before , until when you manage to fall out of bed try to stand up and waddle down the stairs ,it is very clear that you aint gonna do those petty things.
Whats bugging me at the moment is I need a haircut, long overdue beginning to look like one of the stones !, anyway apart from i cannot talk much these days getting to the shop isn't that easy , I cannot face sitting in silence not being able to join in with the chat , Its a bloke thing, but having worked in ladies salons , and know that you ladies enjoy chatting about a lot of things, so no difference. On the look out for a mobile one now. I am with you on the protest front, we Brits do not do enough of them, just take it on the chin (my rant done)

All the best
Pete

JONESY
26th November 2012, 20:15
Hi Pete and Katie,

Pete I recall earlier this year I said I felt useless. You said not useless just less able! Remember? I am very much less able but can do Christmas shopping on line though will need someone to wrap presents. I also am aiming to do my first and last Christmas newsletter. Have just had a good weekend with friends - an early Christmas party.

Chris

pete
26th November 2012, 20:27
Hi Chris,

Really good to hear from you, Yes i do remember, Its just me having another senior moment, Really pleased you had a good weekend .

Regards
pete

roy
27th November 2012, 11:04
HI Pete,
think I have a solution for you, with the long hair.Know you miss the chatting about holidays,clubbing and raves with a young loverly at the hairdressers,ask lynne to rub some hair gel in her palms and run her fingers gently from the front to the back have a small elastic band ready
(not pink ribbon that might look a bit camp) and place tuffs of hair into a pony tail.This idea came to me when watching only fools and horses
and rodney was sporting a small pony tail -cool !

pete
27th November 2012, 11:52
Hi Roy,

Getting very close to that I tell you?, no so lucky as you with the hairdresser ,mine was a bloke much the same age as myself, but we shared a common interest, Cars ? Not modern ones but ones you could work on, and spent many hours over the years thinking about the engine re builds we did back then, and modifications to get that bit extra , my favourite was a triumph vitesse that I grafted a 2500 engine into, scared the living day lights out of me, but great memories , despite my lack of pace now still nuts about fast cars bikes women, it's just catching them now , mind you if I did???? Wishful thinking mate.

Regards
Pete

Robert
27th November 2012, 13:51
Hello Pete,how you diddling,I could be better myself.What day is it?Our daughter came over the weekend so reality returned,usually I don't know or care what day it is, I go to bed and hope I don't wake up but when I do I am full of hope hoping that todays the day I get my life back.
I think the worst part is the frustration of waiting for others to get things done.We've been without an oven for 3 weeks as ours blew,we ordered a gas doubleoven it took a week to come,then the gas fitter says problem,it has to be 90mm away from corner the old one was
40mm which was fine 7 yr.ago and has been till now,so he rings his brother, 75 quid later he's shifted the units along (nice little earner ) now were waiting for the gas fitter to come back,he'll be another 100 I suppose, so in all job finish 700 quid I'm glad I grew that money tree in the garden.I would have fitted a fan in our oven 60. top whack,but these women,you know what I mean.
Anyway our kids put up the decs and tree over the weekend as they're all coming to us Christmas,I know were early but Pat has enough to do and I like Christmas so I got them to put em up.
Well Pete that's us at the moment so love to all the family Regards Bob

pete
27th November 2012, 14:45
Hi Big Bob,
I know the feeling mate, but as ever good to hear from you ,,Hope the long suffering Lady Pat is fine , As for the Kitchen capers, Oh yes been there ,like you a while back it would have been done by us, But not anymore, I know we had our bathroom done recently, and cannot fault the job , really pleased with it , what got me going was the electrician , as usual the law came into it and how he had to be so qualified to carry out such work, For fitting Four lights in the ceiling and an extractor fan vented out via the roof, nearly a grand ,???, as you say nice earners ,i reckon i could have done it for around three hundred ,but that's life, But being unsteady on the pins, not worth the risk, having said that i did manage to get up the loft ladder it took a while ! but not as long as getting back down took , Keep smiling Bob, who knows maybe next year ,keep saying it but just maybe !!!!

Regards
Pete
XX for pat obviously ?

Joybells
27th November 2012, 14:51
Hi Katie,
I too dream that I can walk properly, usually I'm in my wheelchair and suddenly I know I can walk and up I get. If only dreams come true!
Keep strong.

Joybells

roy
27th November 2012, 14:56
Know what you mean Bob, my hands are pretty much useless now. I try to stop myself hovering over so called workman thinking I could do that in half the time and double the price. Stopping myself from saying like Harry Enfield sketch -you dont want to do that-really frustrating
good news about the tree and decorations -if the post was so expensive ect ect I would have loved to send all the crimbo cards 2 weeks ago
just to remind people in good time about the festive season.

merry christmas Bob and Pat.

roy
27th November 2012, 15:04
Hi Joybells and Katie,

have the same dream as you two only I have done something about it ( no havnt been looking up tp43 or bed bugs) seen on the webb
an adult bouncer-like a baby bouncer only better the one I have put on my father Christmas list is bright red.

Roy.

Katie43
27th November 2012, 17:21
HI Roy,
Ha Ha , if I bought one of them an adult bouncer it would be bright red, my favourite colour!. but it would have the family all falling about laughing, maybe I can get get one and it would be my xmas trick!...where do you buy them Roy? and do you hang them over the door as you do the baby bouncers?.

Kindest regards

Katie

roy
27th November 2012, 22:27
Hi Katie,

. there is one on demo on you tube it looks like great fun-looks like a giant catapolt( must get spell check) your placed in a seat suspended
between two posts and a car pulls the elastic with you in the seat for 100 yards and then is released and you go flying.On second thoughts dont think this was in your dreams.Joybells the offer of leathers and crash helmet still available.

best wishes.

Roy.

June
28th November 2012, 00:30
It's Jan again. It's just amazing this forum. I read all your posts and I realise that I don't know what I'm whinging about. I can walk ( not very elegantly). I can talk ( not very loudly or eloquently ) . I can laugh as well as cry. I'm learning a lot from reading your posts and love your humour and empathise with our sadness.
Weekend is over and I'm still here, maybe the whine did me good.
Keep on dreaming, keep on loving,

Jan

Robert
28th November 2012, 11:36
might get one of them and finally join the mile high club,the love swing the NHS. provided works well though. Regs Bob

Robert
28th November 2012, 11:46
[QUOTE=roy;14768]HI Pete,
think I have a solution for you, with the long hair.Know you miss the chatting about holidays,clubbing and raves with a young loverly at the hairdressers,ask lynne to rub some hair gel in her palms and run her fingers gently from the front to the back have a small elastic band ready
(not pink ribbon that might look a bit camp) and place tuffs of hair into a pony tail.This idea came to me when watching only fools and horses
and rodney was sporting a small pony tail -cool ![/QUOT

Forget that idea ,as beneath every pony tail is a horses arse!

pete
28th November 2012, 12:06
Bob,

I did ??? i have been accused of being one many times in the past by management, but I ain't in any rush to look like one

pete

roy
28th November 2012, 13:59
Hi Bob,

nice one-Pete stick with the hair band then, look like David Beckham when he had long flowing hair.

Roy.

Rory
28th November 2012, 17:22
Hi Bob
I've come to quickly realise you have a nice turn of phrase reading some of your blogs ! I like the one about the pony tail and one of the jokes you left recently ! Keep them coming !
Hair banter lost on me as I am down to the canvass - I used 'Wash and Go ' and it went !

Regards to all
Rory

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