Those who are disabled and unable to work please can you help?

[FreakinOnAFriday]

I’m having a bit of a midlife crisis

I stopped work around 2 years ago as my disability meant working became impossible.
I really thought a couple of years out would cure me and I’d be ready to look for work again by now. There is no cure for my disease but I’ve been hopeful.

I’m finding myself in exactly the same position health wise as I was 2 years ago and I’m very frustrated by it, especially as my friends are all moving up in the world and I’m very stuck.

I’m in a catch 22 circle as I rely on my benefits to live. I would like to study something from a distance learning college but I can’t fund this myself but I also can’t receive funding without it removing my benefits that I rely on.

I am so very very bored and I’m resentful of the fact that in two years I’ve achieved bugger all other than more disability.

I need some tips on what to do with my time (I need significant rest during the day so nothing too full on).

How can I “better” myself?
How can I get over the feeling of being left behind?
I want to achieve something! Anything that I can be proud of.

Does it bother you being on a low income? We manage and have some spare funds but it seems my full time working friends are in a different league to me.

How do you accept your lot in life?
I’m a positive person but I hear myself swearing to the heavens “ffs just give me a break!”.

Have you looked at Future Learn, free short courses on loads of subjects mainly from UK universities. Not a long term solution but may be helpful in the short term.

They are FREE courses, add-ons are extra.

I am starting Creative Writing next month!

www.futurelearn.com/

You are allowed to do funded part time university courses whilst on ESA as long as you are not in receipt of a loan for living purposes. Eg course fees paid and a book bursary.

@Oceangirl82 I’ve never heard of Future Learn but it looks interesting, thanks

@Gilead I had no idea. Everything I’ve read says you can’t accept any funding in ESA support group.

Would this apply to something like OU? So I could do a course based on a student loan as long as I don’t receive any maintenance grants etc? I would be overjoyed if this was the case.

Just to confirm: are you able to work full time but flexibly? Or full time but from home? Or part time? Or are you looking for non work things to fill time?

I'm asking only because I want to give the best advice and it would differ depending on what you actually want to work towards.

I can’t work at all. I’m hoping that will change one day in the future but right now I’m in the support group of ESA due to ill health.

Are you on contributions based ESA?

Would you be able to do some volunteering? Some can be done from home at a time that suits you.

Sorry to be more probing but I think if you want useful advice, it makes sense to be very clear on what the issue is.

Do you want to train on something that later can be applied to work?

Are you looking for interests and hobbies to fill life?

Are you looking for retraining into something that might be later more compatible with a reduced work load?

What do you mean by "you can't work"? I'm not the JSA. I'm not asking to be rude but because if you say, I can only do one hour of reading twice a week because of brain fog, then you would get different advice than if you can read all day but struggle with pain.

@hereyehearye sorry I forgot to answer the rest of your first post I wasn’t trying to be evasive

I would like ideas on to how to fill my time whether this be hobbies or something that may be useful in future employment.

I struggle with physical movement so not anything too physically taxing but I also suffer with brain fog which affects my ability to think and read etc. I usually get a few hours each day where I may be able to do ‘something’ but this activity will also mean I’ll have to rest and could be all I do for the day.

I did previously study part time from home but it took me twice as long to complete and I had a very small window of being able to do it . But I did complete it and I’d like to be able to do something similar to allow me to keep up my skills for if I can return to work .

I would also like a hobby or project of some sort to fill my days but it again, I have to allow significant time for rest so it has to be something easy going and not using too much energy .

Yes contribution based ESA.

That sounds very difficult OP.
I find www.zooniverse.org/projects very good for flexible volunteering - data entry for science, and you can do as much or as little a day as you like.

Is your disability likely to get worse over time or stay relatively the same? (Or improve ?)

Maybe you could start by focussing some time learning how to manage your condition, and investigate things which may help longer term? Part of this may include learning new skills to help yourself which you may be able to use to make money at a later date when you learn your capabilities?

I have experience in this area (not related to learning and esa) and many people with disabilities can continue to work and make significant contributions to society, sometimes with flexible working, adaptations in place, focussing on skills that they have or what they find easier etc. This can significantly help with mental wellbeing and also are a distraction.

@Lollipop888 my condition is very unlikely to improve now but I do manage it well. I know my limits and I’m happy to push them when I have the window to factor in recovery time from pushing myself. It’s the only way I can do some things.

I tried every option to keep my last job including flexible working and WFH but it wasn’t sustainable.

@Aknifewith16blades thanks, I’ll take a look

I think you need to get really clear on what the future employment options might be, so that you can be really targeteed in what you learn. Without sounding harsh (I have a chronic illness myself) you have said yourself you have a few hours a day when you are good and you want a hobby and to work in that time (and you also have house chores, need for exercise, connection etc.), prioritising has helped me a lot, in your shoes I would focus on self care and one project at a time, so maybe finding a hobby, then doing research on employment.

Also have a look at Access to Work as they should be able to help you when you are ready. I know of someone who has taxis, yes taxis, to work paid for her through Access to Work.

Well done for your attitude btw that is a massive achievement.

I was in a similar situation, though at an older age so fortunate to be in a very comfortable financial position.

I got involved in politics, and have done things I never thought possible a few years ago. Every party needs people who can do computer based stuff/phone canvassing and if you contact your local branch do your preferred one and offer help they should jump at your offer.

I work bloody hard sometimes, but can factor in days in bed afterwards. Most parties offer excellent free online training to activists which can build hugely transferable skills in volunteer mobilisation/marketing etc

There's loads of free online courses that also give you a certificate at the end. I googled things that interested me and went from there with lots of the word free. These short 12 week courses I can manage. OU not a chance because they are so in-depth and the fog makes concentrating and recalling info for the exams a major hurdle. Never mind the flair ups of health conditions.

Does anyone else find the well others can so can you stuff annoying?

Even with flexi working, part time, reduced hours, wfh and many other available options to us, they don't meet everyones needs. There's not that many places that will employ someone who has to take a 3 hour nap after doing a bit of admin work. Or they manage to work their hours one day but have to call in sick for the next couple of days.

Fwiw, my psychiatrist declared me unfit to work with others years ago, and this has been upheld by every assessment since including PIP.

When I can which tbh, in the last couple of years has been very little I work for myself and get the work capacity thing under UC not ESA. I haven't made the switch because I am fed up with assessments and depending on which group you are in there are too many restrictions (at least that's what various advisors and out sourced groups have advised).

Volunteering is another really good option.
My next goal is to help others with similar issues to me in a peer mentor, councilling capacity. Thankfully lots of these organisations are looking to keep the online/phone support so should be a possibility as a volunteer. When I last spoke to someone the commitment would be as little as an hour a week over 6 weeks. Some transferable skills as well.

The Great Courses provide American college level lecture series on a huge variety of subjects. They are very expensive, but audio versions are on audible.co.uk , which is cheap if you have audible 'membership'. Sometimes you can find them on youtube too. They are 'academic' rather than vocational/useful. There's no qualification at the end, really its just like listening to an audiobook, but I do get a sense of achievement from them. Sometimes you can find whole lecture series from universities on youtube.

If you just want to keep your brain alive its entirely possible to learn a language up to Alevel for free from internet resources. German is good because there is a lot of very high quality free stuff, because the Germans are well-organised and proud of their language. But its very unlikely to offer any career opportunities.

I agree openlearn and futurelearn are good, but OU itself is a minimum 20 hours a week I think, so not very disability friendly.

Apologies, having a bad day with my disability @FreakinOnAFriday. As long as the student loan only covers fees you are fine.
Having said that, I do not how this applies to the OU.

Okay, maybe try something like Coursera or a free course at at MOOC.

free courses with certificates

Data science or pen testing are things that you could learn and easily freelance as many or as few hours as you prefer in the future. It would take a while to learn but I think if you want a valuable skill that would enable you to do highly paid flexible work in the future if you did work then I would look into data or comp science type stuff.

You sound like you want to access a higher quality of life and I think that would do it. I wouldn't bother volunteering for a political party or anything like that if what you want are the skills.

Just to be clear, if you want a hobby and to fill your life, then things like skillshare or youtube are amazing. Or a language through duolingo.

I'm talking more about career based skills though.

nationalcareers.service.gov.uk/find-a-course/the-skills-toolkit

I am on disability benefits and I've never managed to hold down a job for longer than a year. I have been on disability benefits now for 20+ years and I don't expect to ever have a mainstream/employee job.

Financially I'm fine as DH is a high earner and I also have significant investment income (learned about it as a hobby). I don't really need to work now. I have a toddler right now who keeps me busy but over the years I've done distance learning degrees, volunteering, running an online business, taken up creative hobbies and sports. For me, I've enjoyed the hobby/sports activities the most and that's what I'll focus on when DD is in school. I've found even volunteer work can be very inflexible and demanding, and a lot of distance learning can be quite rigid in structure.

I agree with canigooutyet I don't really feel a part of the disability community (particularly the one associated with my specific condition) as they are so focused on the 'well others can so can you' message and I do find my condition prevents me from working more than others, but also that it's important for me to be able to use my limited resources to focus on my own interests which is more fulfilling for me than a paid job.

How do you accept your lot in life?

There’s a brilliant book called How to be Sick by Toni Bernhard which is all about this. She became ill with ME/CFS in 2001 and has never recovered, but put a lot of effort into coming to terms with her new life using Buddhist principles.

I have found it incredibly helpful and it has definitely contributed to me being able to stay positive and really value the life I have.