Hi everyone, at least the sun’s out! I’ve had an aggressive progression for the last six months and only go out of the house to go to appointments and then I will only go if my OH is with me. Moblity is seroiusly hard. I’ve got a mobility scooter but have lost all confidence to go out of the house on my own. I feel like I now have no independance. Has anyone else ever had this happen and what can I do to remedy it or am I being too optimistic. Feel like i’m sinking. Linda x
Hi Linda, oh luv, I am sorry to read how down you are and that your progression has spiralled.
I wonder if my idea may help you.
I have 3 carers, as well as my hubby.
2 of my carers take me out, shopping, lunching and sometimes a film.
This is paid for out of Direct Payments.
I`v been using this for almost 3 yrs and it has transformed my life. After the onset of my probems, I got scooter and went out by myself. But I needed toileting help and became less confident by myself.
If you are interested you have to have an assessment from the Social Services. At first look, DPs look very complicated, but honestly, hun, it soon dorps into place and it is marvelous for me…and hubby…he gets a break!
I`ll tell you more if you like…maybe by pm, eh?
luv Pollx
Hi Linda,
It could be me writing your post,i am exactly the same.my little world has shrunk to nothing these days,i am too ill to go out very much at all,but i am adapting now, i wasnt at first,but i looked at someones blog who has ms and has been housebound for years,but shes quite happy,she adapted and is thankful for what she still as,and makes the most of her home now,
i took inspiration from her,and when i feel down,i make a list of all the things that i still CAN do,and try to focus on the little things in life,its not easy to adapt to being virtually housebound,but you can adapt,i still get down times,but they dont last as long now.i take pleasure of my home and garden now,i make sure i am surrounded by things that make me feel happy,i love to potter about in the garden,cant do very much but i manage to plant out my tubs and hanging baskets,(i loved gardening its one of the things i loved and was great excercise too)i also love baking when i can.
lol just reading this back makes me feel soooooooooooo old,time to worry is when i start knitting lol…
hope you can find something to focus on that helps.
J x
hiya linda
i too understand some what u r saying.
my life changed within a few hrs-from volunteering/driving/being the supporter to struggling with daily living and needing 4 carers. iwas housebound for several months and confidence reached an all time low. on tue i am going on first short train journey with carer to get me into the ‘real’ world again. its been a long haul, even those with ms not being able to understand what i have went through (why should they-we are all unique)
dont give up-you will find ur way to cope. it may take a while and nobody else will understand exactly but you will do it.
ellie
mrsj
ur reply made me smile! knitting is one of the things i really miss!
am unable to even manage that… but heyho…
ellie x
sorry ellie,hope i didnt offend you with my comment about knitting x
hiya
heck no! offend? thats merely a difference of opinion! i like knitting…and darts…and snooker…am sure others dont! to look is different to participating but when the choice is removed becoming bitter is not the way forward-in my opinion…
ellie x
Ellie have u ever thought of a knitting machine, they go on a stand so u could wheel right up to it and you can use with one hand if you got someone to thread for you. Ive got one and love it x
All of this thread made me think…I too am living in a shrinking world…can no longer knit or write or bake.
Biggest issue for me is probably lack of understanding and therefore lack of changes hapening, ie maybe a mixer for baking and maybe some de-cluttering so I can enjoy my home instead of hating it.
Garden…I used to have one, now taken over by OH passion for collecting what I see as rubbish and he see,s as interesting history, treasure, PROJECTS etc.
I am too ashamed to have carer,s come into my home…and I have no energy to tackle the clutter or the issue verbally anymore.
Without the independence my car gave me I have no escape…used to drive off and then walk by the sea to relax…would so love to do that now.
Sorry this turned into a major moan.
LindaH, I thought I’d reply to you.i also live in a very limited world. My husband works away, I can’t go out alone as I have confusion, slowness in thinking and disorientation etc, so I have to wait till he’s home to take me out. To be honest, I’ve got used to it. I have 2 older children at home who help around the house if I need it, usually I just do it and if I can’t manage, I wait till I can. I watch films, I’ve recently got into drawing again and joined an art site where you can share art. I garden a bit if I’m up to it. I use the internet to chat.i bake if I up to it too. I read. I always find something to do. I just see it as making the best of it. 
xx
Please dont let clutter in your home put you off applying for help, which could make a huge difference to your life.
Without my carers, I know my hubby and I would be in a right old state.
polx