Update on how things are. Their is obviously no slowing down of the tosser, its getting to me a bit this week as i am really unsteady walking and my left hand/arm is showing a lot of muscle loss, my feet are freezing all time and not being able to do the simplist things is pissing me off!
Polly has been great helping me out and working hard so she has been having a few nights  on the town recently, which she more than deserves but ive been getting paranoid due to the last 2 nights have been with old school friends and 2 of the male friends have made it quite clear to her they fancy her, in private messages calling her sexy and how lucky i am aswel as when their out. I find it a bit inapropriate considering they know what were going through, to me it feels they are letting her know ready for when im out the way! I see the photo's of them all hugging, dancing and having a laugh, what do i have to offer compaired to them? im falling to friggin bits. We have talked about all this and how much she loves me but i cant help feeling like a failure, in all areas! I need to stop worrying but it is difficult.

One thing did upset me yesterday when i dropped Hollie off at her mums, her mum told me she got upset at her nans saying im going to lose my daddy, she has also said it to a friend here too. While she was here over weekend she was worried about her eye twitching, we told her its not the same thing and polly was really good at explaining the difference. It shows that all whats going on is playing on her mind and by saying im going to lose my daddy tells me she  has heard or read something somewhere, now i have been in local paper twice with all this fundraising and word of what is wrong with me has spread all over our towns nearby so it could have come from anywhere what Hollie has heard. It breaks my heart to think she is upset and worried.

Cant get to edit this site on ipad which is shit, i can use blogger but that will be going back to what i was on before and i found it pain too get the page how i want it. Maybe i will have to go back to it just for the blog, i just dont want to loose this site.

janet parry
6/9/2011 05:55:29 am

Polly married you-she chose you and yes you are lucky and so is she -she found a partner she loved enough to want marry !enough said- stop obsessing - otherwise I will box your ears ! Sorry Hollie is upset-sounds like Polly is doing a grand job explaining things to her-take care lol xx

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Linda
6/9/2011 07:31:42 am

Eh Chris I really felt your pain when read this post. I can certainly empathise with your thoughts and how you are feeling. It's amazing what children think isn't it, I'm sure Polly has done a grand job of explaining to Hollie the situation. One great thing about children is their resilience to handle difficult situations.

As Janet said Polly chose you, you are the love of her life♥♥ I seriously cannot understand how these so called "friends" are sending messages like that to Polly knowing your situation. They are certainly not SNAG's (sensitive new age guys) he he. They need a kick up the ar*e, excuse my french:) Karma comes to mind.

Good luck with the blogging part, it would be such a shame if you lost this site. Wish I could offer some suggestions but I'm not computer savvy:(

Big [[[hugs]]] Linda xxx

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Sarah R
6/9/2011 10:37:10 am

Hi Chris,
So sorry to hear the tosser is rearing more of its ugly head (a side note: used the term "tosser" to my neurologist today to see her reaction... she didn't get it... I don't think it'll catch on in America... we're stuck with a friggin' baseball player, and I REFUSE to use that name!!!!! I'll stick with ALS, though interesting to note my neuro prefers MND... maybe it's because she's Canadian?!). Just wanted to give you a "chin up" note, but turns out that's friggin' hard when you're having a crap tosser day yourself (ha, imagine that). But I do want to tell you to please keep up with your blog... I'm sure others and myself enjoy knowing we are not alone in the shit. Also wanted to share with you a link to a documentary I found... it's 1,5 hours long and I enjoyed it thoroughly and thought you (and anyone else reading) would enjoy it too: http://www.snagfilms.com/films/title/living_with_lew/
So, one final "Chin up!" for you and hopes for a better day tomorrow!

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Chris
6/9/2011 08:12:43 pm

Thanks for your comments guys ;-)
Sarah, i tried the link but it wont play for us uk residents, i did google it and see a trailer and it looked good, you can buy the DVD but its $22 plus shipping.

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Sam
7/9/2011 02:56:00 am

Hi Chris! Hope you are not feeling too down - I agree with everything Janet and Linda said - and it sounds like these 'friends' are taking advantage a bit - Polly needs her time out so she can be the best carer for you but inappropriate comments don't help. Please don't worry about these inconsiderate men - sometimes people beggar belief!!!
When Mark was diagnosed, one day his daughter became really upset because she had seen an advert about MND and the tagline was 50% of sufferers die within the first year. We had to explain to her that unfortunately this can be true (een though it terrified her)- it sounds like your daughter may hae seen a similar thing. You both did the right thing in reassuring her about her eye twitch
Despite the tosser moving on, I still see Chris 1, MND 0 so keep smiling
:-)))

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Fighting My Losing Battle with MND.