Hello there everyone. I’ve not been on this forum for a few years but decided (after a particularly lonely and troubled day) to make contact again. I’m really struggling with loneliness and the control other people try and exert on me. I mean I have really had it up to here with my ex of 5 years still trying to control me. I wish I was as strong as people think I am but I’m not. I’m just too ground down. The government putting on hold until 2020 the increase in savings you can have before getting help with care costs has really got to me. All my hard earned cash for being able to go places whilst I still can is now being sucked away by care costs. Living in a small community there are no clubs and the nearest MS Society place is only accessible to me by a £60 return taxi fare so I don’t know if it’s worth going.
What I do have is a wealth of experience of the various drugs they like to pump us full of. So feel free to ask away. All I really want to know is how do you escape loneliness when you can’t go out on your own? I feel like I’m being swallowed up and nobody is noticing.
Im sorry to hear that things are tough for you atm. I think I get what you are saying. Loneliness and pain feel like my twin companions atm. That and 8 loud tinnitus noises blasting in my head evry waking second.
Im wondering if it would be worth getting some legal advice to see if there is a way round the savings thing. I remember getting round it in my gran’s case on account of her needing medical care not just normal nursing care or something like that. Also I dont think PIP is means tested?
As to going to local MS group, it sounds expensive to get there, but maybe it would be worth it at least once a month or fortnight? Im stuck in Wales atm going through teh diagnosis process and my friends are mostly in London and so Im feeling pretty isolated and am hoping to get to local MS group even though its about 2 hours drive away and will need to get a lift. Im hoping taht going on regular basis could give me something to look forward to.
Hi Susan. Sorry to hear you’re feeling down. I can only make a couple of suggestions, things I think I’d do, if it was me.
Maybe consider spending some of those savings on a few improvements for your home or a few lovely things for yourself. I don’t know, new t.v., laptop, bed, riser chair, redecorating, a really good holiday? Something that you might not really have considered previously? If nothing else it will make you feel good! It’ll reduce your savings in a way that’s allowed you to enjoy them and takes you nearer getting the assistance payments from the government.
As for getting to the ms society, gosh that is expensive. Could you speak to someone in charge of that? Explain how you feel it’s essential really, for your well being, physically and mentally. They might be able to offer assistance in some way. Either financially or practically. They might have a mini bus or be able to put you in touch with someone in a similar situation and you could share the cost of the journey. I hope you find some way round this.
Poppy has a point about reducing your savings by spending some on things you need. But you do have to be careful with that. Getting rid of money in order to qualify for social services help with care (or indeed for benefits), can be problematic. The Council (or DWP) can decide that you have deliberately depreciated your capital. In such cases, they can treat it as if you still have that money. So you could have spent the money, but still not qualify for help.
Spending your own money on essential things to help with disability wouldn’t count as depreciation of capital of course, neither would buying riser chairs etc. In fact neither would going on holiday. Or improving your available technology (i.e. computer / tablet etc). But giving the money away, or taking it out of the bank and stashing it under the bed would!
Many people have reduced their aloneness or loneliness by using social media to communicate with people. For example, this site has people who have become friends. Or there are other forms of making contact with people which might help, e.g. Facebook, and all the other places where people ‘meet’ in the virtual world.
I know what you feel. Even being with family who don’t understand/make allowances for ones condition can be very lonely.
Im feeling low too this week after a miserable and unnecessary argument, first in conversation, next via text with my oldest daughter.
The forum is good for keeping in touch with events, new meds, chatting and friendships.
I!d spend your money on things not just to help you disability directly but to lift your mood. Living in a beautiful lounge and bedroom with a great tv can also be related to helping you lift your spirits and distract from your psi and isolation. I think you could argue that one out with your council, there’s solid research to back that up. Google it and plan your haven.
£60 is a lot the grants team may help but that’s means tested too. Maybe a first time foray to the branch may tell you if it’s somewhere you would fit in. I can tell pretty quickly if I’d connect with a person. A few hours care would cost nearly as much wouldn’t it?
Hi Susan, have you thought about volunteering ? If you feel well enough to do this. Some organisations are very flexible. Some ask for a minimum of 2 hrs volunteer work a week, they usually refund travel expenses. The do-it website has a search facility for volunteer opportunities. https://do-it.org/
The NHS Expert Patient Programme is run by some hospitals and the one near me has coffee morning meet ups every few months for course participants.
The NHS Expert Patient Programme is delivered/presented by volunteers with long term conditions. You have to do the course first to be involved in delivering the course but they are often looking for new volunteers for this role. I expect the NHS will refund travel expenses.