• Phoenix Rising needs funds to operate: please consider donating to support PR

Plans/Contingencies for the future - advice wanted - UK based member

Messages
7
Likes
30
Hi all,

I'm still very new to the forums, but not new to having ME - had it since approximately 2012.

Essentially, I live alone, by no choice of my own. My mum passed away in 2008, and my dad is now in his 70s and also the main carer for his partner.

My anxiety has had me thinking lately - although I can't say for definite, to me it seems like there has been a gradual decline in my overall functioning over the time since I became ill. The 'steps' in this decline seem to often be preceded by emotional stress of some kind.

Although it may be a gradual decline, a decline is a decline - so I'm trying to figure out some sort of contingency for if things do reach the point when I can no longer fend for myself at all.

I live in the UK, and therefore have literally had only CBT and GET offered as 'treatments' by the NHS - although CBT has helped me to get a handle on my health anxiety a little, it's done nothing for my ability to function. I haven't (and likely wouldn't) touch GET with a barge pole, given the horror stories around it making people rapidly and substantially worse.

As such, I guess I'm trying to figure out if there's any way to put some sort of plan in place so I don't end up effectively starving to death if I can't function anymore (worst case scenario, of course).

Equally, if anyone knows of any medical options in the UK either outside the NHS or who I could ask my GP to refer me to?

I apologise for the long and ranting post, this stuff has been bouncing around my head for some time now.
 
Last edited by a moderator:
Messages
6,793
Likes
17,434
Location
Alabama USA
HI @Robinson102 , I for one do not think that your post was too long, nor did you ramble.

I think what you are talking about is valid and important. I am in the US, so I don't know about your part of the world. Just wanted to say that. Good thread, and might help others to read this also.

@andyguitar Can you speak on this? I know you are over the pond.
 
Messages
7
Likes
30
QUOTE="jesse's mom, post: 2192644, member: 33292"]HI @Robinson102 , I for one do not think that your post was too long, nor did you ramble.

I think what you are talking about is valid and important. I am in the US, so I don't know about your part of the world. Just wanted to say that. Good thread, and might help others to read this also. [/QUOTE]

@jesse's mom - thank you, it's nice to know that others think my worries are valid, and that I wasn't rambling (although it felt like I was!).

QUOTE="Judee, post: 2192652, member: 28070"]I worry about this too so I'm glad you brought this up. I live in the US though so cannot suggest anything but hope you get some answers and share them. Any ideas are welcome!!!![/QUOTE]

@Judee I shall certainly share any suggestions which come my way via PM (and therefore aren't visible on here) - I'm also going to bring this up at my next GP appointment, and see what he thinks.

In that regard I'm lucky at least, in that my GP both believes in and actually first suggested it may be ME, back when I first became ill.
 
Messages
4,549
Likes
13,037
Location
Massachusetts
Although it may be a gradual decline, a decline is a decline - so I'm trying to figure out some sort of contingency for if things do reach the point when I can no longer fend for myself at all.
I think that I worry about the future and growing older much more than other people my age (I'm in my early 30's). I worry about having enough money saved away in case I have to stop working. I worry about whether I might need a caregiver as I get older, and whether I could afford such a thing (and whether that's something the government might help cover, or some insurance might help cover--I'm really clueless). And although my health has been relatively stable for 11 years, I worry that one day something may change. Living with this condition makes so many things about the future feel uncertain. I'm glad you brought this up.
 

Mary

Moderator
Messages
12,293
Likes
26,465
Location
Southern California
@Robinson102 - first, I agree with the others, your post was not long or ranting at all! You have very valid concerns. I'd like to suggest that you add something to the title of your thread to indicate that you are in the UK. We have many members here from the UK and I think you'd be much more likely to get a response from some of them if you indicated in the title that you are from the UK. There are so many posts, very often members just scan the titles to see what they can respond to.

Because you're such a new member, you don't have the permission needed yet to edit your thread, but I can do it for you if you like. All new members have a brief "probation period" for lack of a better word before they are granted full membership privileges, in order to weed out spammers.

If you want to change the title, you might try something like "Need help planning for future contingencies - I'm in the UK" or whatever you'd like. Just let me know if you'd like me to do anything here. :nerd:

By the way, you might take a look at this video which shows various posting techniques, including replying to members' posts. It'll show you how to respond to someone if you just want to respond to a portion of their post among several other things. If you click on "show more" at the bottom of the video, it will show you timecodes for various tips, so you don't have to watch the whole thing (a little over 7 minutes) to find out how to do something - it's really well done (one of our most knowledgeable members prepared it :thumbsup: )
 
Messages
7
Likes
30
@Mary hi Mary, thank you for sharing that video link, I shall watch it later today. I've figured out the '@' thing and the quote method already, but it will be interesting to see what else exists.

With regards to the thread title, that also makes sense. However, I don't want this to put off other people from receiving advice on here as well, as I imagine it's far from just me struggling with this.

Perhaps something like "Plans/Contingencies for the future - advice wanted - UK based member" or something like that?

I would appreciate your thoughts on this. Also, is the new member thing why I couldn't PM you about this? Thanks.
 
Messages
7
Likes
30
Hi @RebeccaRe, I'm also in my early 30s, and have very similar worries - albeit I'm not working, and haven't been since August 2013. Which in turn means I survive on ESA/PIP, and couldn't save up the money for future care either way...

That's why I started this topic, in the hope that other people have also thought about this situation and possibly come up with potential plans etc.
 

Mary

Moderator
Messages
12,293
Likes
26,465
Location
Southern California
Perhaps something like "Plans/Contingencies for the future - advice wanted - UK based member" or something like that?

I would appreciate your thoughts on this. Also, is the new member thing why I couldn't PM you about this? Thanks.
Hi @Robinson102 - I think your suggestion is great. My main concern was that I thought it was important to put where you live in the title because obviously the UK and other countries each have different resources and programs, etc. I'll make the change for you.

And yes, you weren't able to PM me because of being a new member. However, in just a few minutes you will have full privileges so you'll be able to edit and do PMs, etc. :nerd:
 

andyguitar

Senior Member
Messages
2,534
Likes
5,415
Location
South east England
Sorry @Robinson102 I have only just become aware of your post. At your age, depending on how much you have in savings, you can apply for funding from Adult Social Services for paid helpers to assist you with daily living. In recent years it has become more difficult to get that funding but it is possible. If you own your own home that is NOT taken into account when calculating 'savings'. You would need to visit the website for the Local Authority in your own area to see how to apply. Depending where you live it is usually the County Council that you need to get in touch with.
 
Messages
7
Likes
30
@andyguitar, thank you for that - that is something I wasn't aware of, and will certainly look into.

For the most part I'm able to look after myself to some extent, but it's useful to know there may be options for assistance in the event that things reach a point where I can't.

Sorry @Robinson102 I have only just become aware of your post. At your age, depending on how much you have in savings, you can apply for funding from Adult Social Services for paid helpers to assist you with daily living. In recent years it has become more difficult to get that funding but it is possible. If you own your own home that is NOT taken into account when calculating 'savings'. You would need to visit the website for the Local Authority in your own area to see how to apply. Depending where you live it is usually the County Council that you need to get in touch with.