WARNING - Vent.....

CrazyRed

deb68 wrote: »

hi
I have MS if you want to chat pm me we oh an myself maybe able help you or give you some ideas
i take a lot of vitamins and so many tabs from consultant i must rattle
vision in left eye !!!!!!s off comes back then takes my left leg an foot with it lol got to laugh even tho i dont want too

I call ms IT as that what it is to me something i will have to fight every day so i dont wish it too have a name
Life is dam hard most days i fall alot bum not quite big enough yet to bounce me back up
i have a stick i Hate it but have to :mad: i try to keep smiling for my kids they no im in pain but i smile an say im ok but im not

please do get in touch any help we can give we will
Have they offered her Gabapentin for pain? trouble with it is it puts lot of weight on there are other tabs like i said im on so many hubby hhas to sort them out

hes my carer he takes me to the bathroom the shower he dresses me an i so wish he didnt have too this isnt what he signed up for

I cant go out on my own cant walk to far these days i have times of standing there n comming too on the floor so i no how your wife feels with that

your doing an amazing thing you should be very proud of yourself
take care
love to both
deb

Thanks, Deb for your lovely, heartfelt post - I'd be pleased to make your acquaintance. You sound so very much like my own wife with your words, and your life in so many ways reflects ours, especially what you say about your husband. Reading your post bought a lump to my throat.

She did get offered Gabapentin for the pain, but it didn't prove all that effective - she has since progressed on to even stronger painkillers (oxycodone-based) to try and lessen the neurological pain. The weight gain effect, we didn't really notice to be fair but then again, my wife is quite slightly-framed anyway so it would take a fair bit of weight gain to show on her.

The neurologist basically tried to tell her that she'd known about this issue all her life and promptly discharged her back to the GP's care!

Her current mobility level is around 20-25 metres without severe discomfort - like you, she hasn't gone out for a long time, and getting the scooter in the car's a bit of a hassle at times, especially with the way my own abdomen still feels tender after July's surgery - I'm not all that comfortable humping heavy bits of scooter in and out of the car yet, but we do get out occasionally to important events, like school plays etc.

Thanks for the post - I look forward to talking more with you over PM.

meritaten

CrazyRed wrote: »

Sorry, I missed replying to this in my last post - please accept my apologies.

Her emotions are always affected, nowadays - sadly, she has changed from the person I met all those years ago, and not necessarily for the better. However, I do love her, and I do care, very deeply, for her so I've told her that I'll always be here for her - no matter what. We married for better or for worse, in sickness and in health and I take those bits of my vows particularly seriously.

In terms of the 'difficult conversation' - we have already discussed at some length 'the future' and she has outlined her wishes clearly to me. Of course, I have vowed to do the utmost I can to ensure that those wishes are met. We've also put our respective Wills in order since having that conversation - not being morbid, just being practical and sensible. We've both had a very rough year, health-wise, and both felt it important to deal with this particular aspect sooner, rather than later.

I have to say - thats very wise of you both. just be careful hun - I wouldnt say more on this thread and I certainly wouldnt say anything which could identify you.

CrazyRed

meritaten wrote: »

I have to say - thats very wise of you both. just be careful hun - I wouldnt say more on this thread and I certainly wouldnt say anything which could identify you.

Thanks for your concern and your wise words. I am being deliberately careful over how much I'm saying on here, but understand fully where you're coming from.

Savvy_Sue

I gather you've had SS out to look at ramps for front door, but have you had a full OT assessment for other aids which might help your wife? You don't want to be spending on things which aren't 'right' for her, and an OT should help with that side of things.

CH27

Fantastic re the appeal.

Good luck with getting care sorted.