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Chris
17th October 2011, 11:45
I just wanted to apologise for my lack of input lately, I am at the lowest I've been since dx and it's been very hard to deal with. My extension is on the move but to be honest I'm desperate for it to be done, stairs are terrafying and falls are becoming a regular thing.
I have been reading on here regular and the only thing I really commented on was on "the way were treated" thread, personally I think it's gone quite bitter now and not pleasant reading. I feel being in this position makes you quite selfish, maybe we should feel lucky to have the help from the MNDA because otherwise we would have nothing, their is elements that are hard to take but I suppose that's just life. I still feel a little let down by the lack of help with the one thing I need to restore a bit of dignity but I will not give up.

Please don't turn this into a slanging match thread, this is my feelings and my position not a dig at anyone.

Robyn Copley-Hirst
17th October 2011, 12:50
Sorry you're in a hard place at the minute, Chris. A forum should be about supporting one another through the ups and the downs, so don't worry about posting when you're not feeling on top of the world all of the time. I'm sure there are many people on the forum who can empathise with how you are feeling.

Best wishes to you and your family, Chris.

Robyn

Bels
17th October 2011, 13:37
Sorry you are having a tough time Chris. Fingers crossed that your extension has a speedy finish and makes life much easier for you. Wishing you all the best. Belsxxx

G60dubber
17th October 2011, 13:44
Chris
You have my sincere empathy, I've been quiet too after a fall that required ambulance response, xrays n having to use my powerchair. It scared me and gave me a look at the future. I hope you're finding that you're bouncing back, your input on is here great.

You're right about the thread getting messy, it's gone from legitimate questions to a bit of a moan. Sadly the aspects about misappropriation is verging on slander....

keep your chin up n hope your extension is done soon :-)
Adie

jadedjohn
17th October 2011, 14:05
Chris.

Try and keep your chin up, I'm feeling the same.... I couldn't even go to my sons 6th birthday party yesterday, dont want to see anyone, because my walking is so bad now. my extension (funded solely from my own pocket) is still in the planning stages - not fixed a design with architect yet. I had to say goodbye to sleeping upstairs yesterday, luckily we have a small downstairs bedroom that we can use in the short term.

My mrs handed her notice in on Friday in order to spend more time with me, so she finishes at xmas,

John

Cath51
17th October 2011, 15:28
Sorry you are feeling down at the moment Chris, hope to see you at the meeting at Haydock on Thursday if you feel up to it. Having said that not sure if we will get there as Mic's Mum is in hospital like we don't see enough of hospitals :-)

miranda
17th October 2011, 16:01
I have been missing you regular guys! The forum has not been the same without you!!!!!!!!!!!!!! Sorry to hear that it has been tough, hope things will be looking up for you all again soon.

Z3 Driver
17th October 2011, 17:29
hi Chris, its not easy and that dark cloud above us can block out that sun sometimes.. We will all have our darkest days when we feel there is nothing to look forward too especially as the gloomy weather approaches. im getting fed up of the same 4 walls and the tv.
im struggling to find something i can do that i enjoy to fill my days.

Try to see each day as a new day as each day can bring different things. Anytime you want to call me you can , takes me a while to answer but i will.

there are some drugs that are available to help when your down, never tried them but was made aware of them at clinic.

take care pal, and i mean it call anytime.

Jeannie
17th October 2011, 17:58
Chris, no need to apologise mate, we'll let you off just this one time lol I can only echo what everyone else has said. If I (we) can do anything to help don't hesitate to give us a shout, were here for ya.

Adie, are you doing better after your fall?

John, sorry you couldn't face your sons birthday. Like I said before it's easy to isolate yourself but extremely hard to come out of isolation. I was and still am embarrassed by what als has done to me, even after 11yrs. I so wished I hadn't pushed everyone away because it gets very lonely on your own and causes great stress between love ones. Over the past 2yrs I have been making an effort by allowing family and friends to visit and visiting them.... I'm gutted because I should've done it years ago instead of hiding away. My family couldn't believe that I attended the AGM lol they even called to congratulate me. If it would help I can come visit you and meet with your family and friends so they know how it is? Let me know ;-)

Crazy girl
17th October 2011, 18:22
I know I'm not a sufferer but a carer (so I'm not fully in your position) but just wanted to say to all of you finding it hard that I'm sorry to hear that and hope that you're able to find something in this near impossible journey to make you smile a little each day!

You've all been extremely positive in the past on here and really helped me and my husband when we read your posts to not feel alone but it'd be inhuman not to get down! And we've missed you too...

Sounds like your progression is similar to my husbands. He had his latest fall on sat night, we had to call mobile response to get him up (first time we've used them and the ladies were fab), he can't walk far now and uses his wheelchair when out and currently looks like I've taken a baseball bat to him...

We went out in his spectra yesterday for first time and it stopped and refused to go! Fun when you're on a main road and have a child running around you!

Anyway I really hope you all feel better soon....Christmas will be something to look forward too....I'm normally a humbug but considering getting full on Santa lit up on the house to raise a smile from my husband!

Take care all
Tracy

luce
17th October 2011, 22:02
Keep your chin up chris, it is nice to see your threads and photos

chris can you get a temporary stair lift? have you got a piper alarm in case you fall when you are alone?

Tracy- my mums spectra stopped a couple of times (it can be that the wire from the side of the chair into the control box isn't fully inserted, or it could be that it was on assisted instead of wheelchair user drive- the other thing we found was that if the tilt is at the wrong angle the foot rests jam the wheels!

about your husbands fall- did he get any care in? my mums latest fall was on Friday and she broke her foot and not cannot weight bare. Tomorrow is her first day with unknown carers coming in to wash/ dress :( - a real faf to sort out as well- i will post seperately on that... when time permits

LOL

G60dubber
17th October 2011, 22:23
Adie, are you doing better after your fall?

Aye, couldn't bear any weight and was in severe pain for a few days so destroyed the house with my outdoor powerchair. Reveresed it into my lift then drove it into the door column on the way out and smashed in the control panel on the chair. It folded up and the arm rest was pushing the joystick into forward and I was completely wedged in the lift n couldn't get out. :cool: Mrs couldn't get in to put chair to manual as not enough room. Eventually got out n the mrs reattached the control panel to the chair. Nearly tipped myself out the chair trying the ramps for the 1st time too lol.
With the help of co-codamol and sheer beligerence I got myself back on my crutches by sat to go bowling with the family. Shame I just had to watch but my bowling days are over.

Miranda, hopefully this'll give you a grin ;), should be back posting with my silly exploits to amuse all again.

jadedjohn
17th October 2011, 22:27
Lmao adie.... Can't wait till my chair arrives sound like they're lethal:)

Londoneye
18th October 2011, 08:40
dubber sounds like demolition dubber to me,

i hope that i don't have to use a chair for a while but when i do i will fit bull bars lol

Chris
18th October 2011, 09:35
Thanks for your support guys and girls :)

Jeannie
18th October 2011, 10:10
LOL You defiantly need L plates, Adie ;)

computatec
18th October 2011, 11:07
[QUOTE=Chris;6051 My extension is on the move but to be honest I'm desperate for it to be done, stairs are terrafying and falls are becoming a regular thing.
[/QUOTE]

Hi Chris

Have you thought about "camping" downstairs until your extension is finished? Washing and toileting is likely to be the problem downstairs, but there are ways round it. There is a solution to every problem and you need to give up using the stairs for your own safety.

Every time we come to the place where we can no longer do something we feel the loss acutely and it knocks us down for a while. It helps to apreciate what we still can do and concentrate on that but is not easy. I am taking vitamin B complex every day as it strenghtens the nervous system and I think it is a natural way to avoid depression. I have always been inclined to worry and fret and my chilfren say I always see the negative side of everything, so I am surprised how I have coped with this awful affliction and not got depressed. I think the VitB does work.

I hope you soon bounce back and look forward to your lively contributions to the forum.

Clive

angnmick
18th October 2011, 15:11
Adie you really make me smile and Chris hope the extensions over and done with soon , Have really missed you guys on here you keep me sane, and always gives me the glimmer of hope hearing your wonderful ideas. Any way you both need to get better quick ready for the wacky races take care xx Ang

miranda
18th October 2011, 15:16
Ang is right - you boys with your toys need to be fit for the wacky races. I think you have a fan club starting here!

Crazy girl
18th October 2011, 21:37
Keep your chin up chris, it is nice to see your threads and photos

chris can you get a temporary stair lift? have you got a piper alarm in case you fall when you are alone?

Tracy- my mums spectra stopped a couple of times (it can be that the wire from the side of the chair into the control box isn't fully inserted, or it could be that it was on assisted instead of wheelchair user drive- the other thing we found was that if the tilt is at the wrong angle the foot rests jam the wheels!

about your husbands fall- did he get any care in? my mums latest fall was on Friday and she broke her foot and not cannot weight bare. Tomorrow is her first day with unknown carers coming in to wash/ dress :( - a real faf to sort out as well- i will post seperately on that... when time permits

LOL

Hi Luce,

Thanks for sharing that advice, I called the engineer on sun and he told me to do a couple of things which worked but it's stopped again today so I'll be calling them tomorrow me thinks! I haven't got time to train as an engineer as well as everything else!

Haven't had any care in apart from being bruised and battered my husband didn't break anything. Sorry to hear about your mum, arranging carers....yeah I did that for my dad last year in America it's a bundle of laughs like everything else!

Tracy

soniamm
18th October 2011, 22:10
Hi guys, have missed the banter, you have lifted our spirits so many times with your stories. I agree with others that the tone has waned on the forum of late,it should be a place of support and sharing of both information and fun stuff not the pecking that we have seen of late we all have enough c#*p in our lives.

Chris sorry to hear you have been down, hope the extension is finished soon......

Sonia

G60dubber
18th October 2011, 22:26
Thx all, nice to hear we lighten things up a bit :-)

PoetChristopherRobin
19th October 2011, 00:21
It’s a little like this for someone who’s told they’ve cancer too Chris, the medical profession reckon they go one of three ways, live life to the full, live life normally or they let it get them down. My father in-law let that same disease get him down, yet his daughter (my sister in-law) is living her life as normal as possible and they say she could have days weeks or months left?

I know we’re all different in moods as personality as the way this disease effects us day to day but even though I’m carrying the weight of the world moon sun Jupiter mars venus etc etc and getting nil support at all from the mnd association itself, other than the forum users right here I am still smiling and determined not to let anything get me down

My Sister has a suspected brain hemorrhage, and my granddaughter has a broken leg,
My wife’s mother is still complaining about her second leg being amputated she wants the whole leg off. All out of loneliness according to my Wife.

Her elder sister is terminal with cancer and she will die.

Her elder brother is an alcoholic going on benders and abusing his mothers income to drink.

Her younger sister has a heart murmur.

One of my sisters has a ischaemic heart after not that long ago suffering a triple bypass now also a brain hemorrhage

And just very recently my oldest sister was rushed in after having a heart attack, on top of this I’m daily deteriorating with the mnd.

If we are being tested then each and every one like you and me deserve some major awards

Keep smiling Chris

jadedjohn
19th October 2011, 16:15
I was feeling fairly up beat today - I think im going to hang myself now:( at least we all know there's always someone worse of than us i guess

Barefoot John
19th October 2011, 16:26
Hi Soniamn,

I for one have left everything about the the recent post about finances, wages, expenses etc that i "and others" have contributed to,

I rest my case regarding it all and will do what i do what i have to do or need to do without bringing the bad tone to the forum.

We are all here for the same reason and yes supporting each other through our rough times with out slagging/stalking/running each other down or worse rubbing each others noses in things

Best regards.

John

Barefoot John
19th October 2011, 16:29
Christopher,

I can only say that i really feel for you.

I know you jordies are a tough bunch and deal with things in your own way

(my sort of partners a jordie," Whitley bay" so i really do know)

Real pleased to hear about your move coming soon :) :) :)

Take it easy.

John

Cupcake
19th October 2011, 20:50
Hi Chris sorry to hear you've been feeling down of late with all you are going through you are bound to have bad days I know Jason is very down and he has been for a while now the more the illness progresses the more down he becomes. I am so pleased your extensions coming along that is one thing that made Jasons life easier when ours was built. I hope you are feeling better soon. Xx

indiesue
26th October 2011, 11:53
Hi everyone,
I can understand how you feel Chris, i also have not been on the forum for some time, i have been really down i had to leave my job which i loved for 20 years, and i can no longer drive so getting about is more difficult of late. We to have had to make adjustments at home, and it seems to take forever especially when your not feeling at your best. Money has been a big issue for us as my husband lost his job and it was a worrying couple of months trying to make sure all the bills were paid before we could think of eating let alone any work on the house. We are getting there now he has a temporary job to take us past Christmas.I think all this worry i have had has not been good for my progression , as i think my mobility is poor of late, and i am falling a lot more and have had to go to hospital the last twice.
So Chris what i am trying to say is i know how you feel and you are not alone, and i am sure the support is always here for us. I hope you feel better soon you are in my thoughts.
Sue x

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