Feeling very sad today

[jimboriley52]

I visited my GP this morning. I asked him if I would ever be capable of working even part time. He said sadly not as my BI is untreatable and the memory/confusion I have may as I get older her worse. It really hit home and it really put me on a downer. I wonder what have I done to deserve this

[razyheath43]

you have done nothing to "deaserve" it!! you could try going self employed,that way you can be more flexaible? or voulenteer work,either way sorry to read that,

[paxo05]

You have definately done nothing wrong. Try volunteering, but remind yourself it doesnt mean you will become suddenly employable.

I am in the same boat and should follow my own advice. It has took me years to accept I can no longer be in paid employment. If you can go self employed go for it but try and be realistic ( once again easy to say hard to do).

Everytime I do volunteer work I suddenly feel that it will lead to propper employment. I then push and push which leads to me forgeting things or physically unable to continue.

Do not mix being usefull woth being employable. You can still make a valuable contribution volunteering, its jusy the moneytary side you dont get.

good luck and remember there areore important things than money and work.

[jimboriley52 in reply to paxo05]

Thank you for your lovely advice

[StrawberryCream]

Hi Jimboriley

Sorry to hear that you have been knocked into a downer when it hit home when you were told you are not going to be able to work. I recall sometimes thinking when work was so pressured, that it would be great to be able to retire but of course I then had another 10 yrs to go. However, suddenly becoming life threateningly ill and subsequently sustaining a BI and not at the moment being able to work has left me struggling to accept or feel ok with that reality! The problem is that it wasn't my choice or a situation that was planned for - it was out of my control and not of my wanting! So I can comprehend how you are feeling. I am going to start volunteering for 4 hours a week at a new Headway group starting in my area. Hopefully that will give me some sense of purpose in the absence of paid employment.

[jimboriley52 in reply to StrawberryCream]

Thanks x

[Hidden]

So sorry you're feeling sad = I know how you feel. I thought by now I'd have earned money = it's nearly a decade since my ABI. But my life already tricky and bust/tired doing everyday tasks = think I must accept now that I'm not reliable enough to have to BE somewhere at particular time or for long = get too tired.

And yes:this hurts. I've tried to work out (with help) what I CAN do, WANT to do and out of all the volunteering I could do = which. Tricky and will have to start VERY slow, see how it feels and NOT offer too much or push myself TOO hard = that's hard too!

I have never ever been bored since my ABI (or before it) = always so MANY things I want to do and not ever enough TIME - or energy. Thing is I was always self-employed and ALWAYS traded off (when I could) TIME as a preference to money.

I know some people when off work for any reason or retirement feel lost and bored but not me and I think some people have NO idea how busy I always am. They ask 'what do you DO all day?' and it's hard to answer coz often slowly doing things others do fast and 'little' things complicated for me, tire me.

Yes: disabled people should be helped/encouraged/mentored to become self-employed, work from home if that suits. We should be funded for PCs, printers, net, tech, training - and QUALITY not rubbish, CHOICES.

It should be simple,help with accounts, tax, rules etc. We usually have a very strong work ethic and can-do (or at least try-do) attitude.

But that needs benefits to adjust, ensure we have enough to live on at all times, safety net top-ups PLUS not lose ANY disability benefits. Rules not working/too complicated. And if we fail and find can't work = must get straight back into benefits system, NO delay. And somebody must ensure all this WORKS for us = the clients.

Funding for us for marketing, website, mentors, equipments, spare room as an office, transport, phone, professional journals etc. Way past time!

For me it is NEVER a problem to know what to do with my time or to have goals = always had/got them. Just need secure comfy housing, NO money/income frets and the right help IF I can't do things myself - which if set up right how I need mostly could.

The trouble is with benefits as only income = it isn't ENOUGH so people try their hardest to get work & keep it, often getting more ill/injured on the way. EVERYONE deserves a decent basic lifestyle which includes transport, papers, net, phones, PC+, TV, access to sports, hobbies, friends & family = even if live far away = costs of getting there & back, hotel on way, good FOOD, enough to pay all the bills and above all = NOT to get into debt or become homeless.

The terrible stress of NOT having the basics is a KILLER and the costs to society are ENORMOUS as well as to us and our friends/families. Way past time they added up the true costs and put that on the scale against the minimal savings of paying below poverty-level benefits which you have to beg and scrape for. All that goes for low wages too.

We all need to feel useful, wanted and included = part of life and community and wider society. Being cut off, unwanted and excluded hurts SO bad and is also a killer, but so very hidden. Who's counting the TRUE costs and why aren't they shouted about as loudly as the 'high' cost of benefits?

Why aren't rents being tackled? In my youth there were things called rent tribunals but (I think) they quietly disappeared. We need FAIR rents, ones we can AFFORD and CHOICE where we live. Many of us have NO choice and are stuck in poor quality housing = so very different from wealthy people = they have NO idea: they buy and make whatever changes they want. We are NEVER 'at home' or private in our rented places and have NO security whatsoever.

Sorry, off-track (as usual, one of my big ABI problems): not working = IF enough money,help, can access other things = no need to be sad as long as feel NOT a drain on society (as some make us feel) but VALUED for who and how we are coz ALL of us are special, unique and ADD to society's riches = just not always via paid work.

Same as parents/caring roles = not valued as should be. But without them there would be NO society as we know it!

Chin up = IF benefits were enough we wouldn't feel pressured to try MAKE ourselves work. If people struggling to find fun useful things to do = HELP them but most of us plenty busy enough and have our OWN goals, dreams and desires. Nobody should worry about us if we're lucky enough to be like that!

[Hidden]

Sorry you have been knocked down with your news. My hubby has taken three years to accept that he will not be able to work again and now, he tells me, finds some satisfaction from volunteering with the local tourist information centre where he volunteers one morning a fortnight. He doesn't need to remember anything as can direct visitors to the leaflets or can look up their queries on the computer. He certainly comes home tired but happy. Good luck, I am sure you will find something that you enjoy when you are ready which gives you satisfaction too.

[Danslatete]

It's awful when reality hits. I can relate to how that feels. I started doing voluntary work and I enjoyed it very much. It gave me the chance to become social but also no worries if you don't feel well enough to get in, no guilty feelings of letting the team down, no worries of being sacked.

It really made me tired just doing an hour a day to begin with. It took me a long time to get used to being busy every day and I would sleep for the afternoon.

I enjoyed doing an art class once a week, something ihad never though of doing but it was something that you can't get wrong and can get a feeling of achievement from.

Maybe you could try something like this and see how it goes?

Don't do what I did though and sign up for ecdl. A computer course that I thought 'would show people' that I wasn't to be written off. It didn't go to well, I got very stressed and it made me I'll. When my consultant found out he wasn't too impressed!!

[jimboriley52]

Thanks Muddled I know what you mean about the benefits.It took me nearly a year to get my entitlement only after getting my MP involved did I finally get them. Now with this Government back in power I worry about them being taken away or cut. I spent 6 years in the British Army at the height of the troubles in Northern Ireland and 4 years as a part time firefighter. So I shouldn't have to worry about getting my entitlement but I am no good to them now. I have also noticed the reaction of certain people when you tell them you are on disability benefits, it's as if I am a scrounger so the government's propaganda is working. Anyway I have to battle on

[cat3]

Jimbo, there are so many different types of valuable voluntary work you could take on, from helping in schools or working with animals or benefits advice to prison visiting and a whole range of social-care roles.

It's so true what Paxo has said about not confusing usefulness with employability.

The most satisfying and ego-boosting work I ever did was voluntary, and I'd never have given it up if ill health hadn't struck.

There's a whole world out there unconnected to the world on employment which can be equally, or even more, fulfilling and meaningful.

Best wishes Cat xx

[jimboriley52 in reply to cat3]

Thank you Kat. Every reply I have had today has been so positive,it's nice to be involved with headway as it feels like a family to me.

[cat3 in reply to jimboriley52]

It's heartening isn't it how a large collection of strangers who've never met can become so fond of, and so concerned for, each other.

And yes, we have over the years become a family................not a cliché...............just a fact.

Take care Jim xx

[jimboriley52 in reply to cat3]

Thank you get again Kat. I look forward to my email from headway every morning

[malalatete in reply to cat3]

you are right, and it is not a cliche at all. We all respond as 'yooman beans' to shared experience, so you usually find someone to get on with who lives in your street, works in your office, shares some of your friends, goes to the same club or hobby course. Where people like us really benefit though is 'meeting' others who really understand what we are dealing with, and the reason I think it can feel so like family is that our families are often the only people who see this whole palaver from top to bottom - and that happens only if we are lucky enough to have them here, and supportive. The wonderful thing about co-sufferers, or co-survivors, is that they also know it, like we do, inside out, and live it each day as well. I can only imagine with horror what it must have been like to be struck down with this pre-..

[malalatete]

Hi Jimbo. oh boy....I remember that feeling all too well...it has brought a lump to my throat just thinking about it. it was a letter my neuropsych had written to my GP about 18 months after I had got ill. Just a throwaway comment which read 'I am trying to encourage her to come to terms with the possibility that she will not be able to hold down full time employment, or indeed any employment, again.' Bless her, she had been doing it so gently, so subtly, I hadn't got to that point at all, so reading that was like a bullet to the heart. Sure enough within months I was retired on ill health from my 19 year career in local govt and have not worked since.

I may not have worked, and I have now come to terms with the fact I can't, sort of, but I still do do 'stuff'.

2 years ago I started a childrens choir in my village. Once a week I go and sing with the kids for an hour. I dont charge for it, we just have fun. Its fab. 3 of my choir have been selected as Cathedral choristers these last few months. I am sooooo proud of them (2 are my sons so I am doubly proud).

I sit on the board of a local charity. I go to a meeting about once every 6 weeks. It takes its toll - after the meeting I usually lose my legs, and if it goes past an hour and a half I feel the brain fog creep in and know my usefulness will be limited from there on (I am really only up to speed for under an hour I have found - with anything). But I have met some great people and because I held 2 Board positions alongside my job when I was fit, it feels like I have part of my 'old' life back.

I help the vicar out with admin every now and then... a bit of typing here and there, or putting service booklets or newsletters together. Simple stuff, nothing too taxing or I get muddled. Nothing fixed as a must-do, either. But it is good to help and the Rev knows and is accepting of my 'limitations' -indeed it was him who pointed out to me that everyone has them...

Do I miss my career? Certainly, at times. Would I go back if I could? Not in a month of Sundays. Being 'retired'at 42 was a hard one to swallow at the time but I know now I have real balance in my life. And when I look around at the other people of my age, they really, really don't.

I am ill, yes; frustrated at times, yes; but since I began to shape the new life for the new me I have found a quiet peace I never had. Striving is all very well, but it is wearing. Whenever I am asked how I am now, I say 'plodding along'. Its not a negative thing...life is at a slower pace. it may look hard and cumbersome to others from the outside, but by taking these small, slow steps, I have found I can always get to where I want to be in the end, and I have the time to see all the wonders, stop and smell the roses, and say a cheery hello to the mad rushing about crowds, the sad, the lonely on the way. A blessed life, indeed.

I hope your sadness dissipates soon, and I hope you find something which you can enjoy to give you that sense of being part of things, which is what having to leave work takes away from you. Just remember, no-one can take away 'you' - work was /is not 'you'. And yes, 'you' may change because of what has happened, is happening and will happen, but hey, we all change, don't we, because of any experience on any given day. That, I think, is what we call life.....

I know you will find something you can give your time to soon, and through doing so this hole which has been shot into your heart will be mended. And as you go off to find it, as one who has been on that journey already, I wish you all the luck in the world.

Tx

[jimboriley52 in reply to malalatete]

Malalate that is a lovely post and very uplifting I have looked into volunteering but I am still a bit anxious about it. I think it's a confidence thing.It sounds like you live in a lovely part of the world. I live in a rundown estate which doesn't help as you have to be careful. If some of the maggots that live around here found out I was doing voluntary work they would put 2 and 2 together and get 5. In there tiny minds they would think I was loaded and before long my home would be burgled. A sad situation but true. Before I become ill I would deal with these people myself. I think that's my Army training

[malalatete]

Jimbo, I bet there are way more opportunities where you are than here, you are bound to find something which is a fit. Of course you can do your own thing. The reason I set up the childrens choir was I needed to do something that was in my control, plus it was something I enjoyed doing. The other stuff came later as my confidence grew again. Organising your own fundraising event is in that sort of place too, and if is for something you have a connection with, that makes it more meaningful. Do you have a local branch with retained firefighters who need donations and support and stuff, for example?

Another way is to be a local co-ordinator for something. This week it is Christan Aid week, and I know my parish isnt running a door to door collection this year because there is no local co-ordinator. That's a once a year thing that can tie you into something bigger, but without being tied down if you don't want to be.

There are often behind the scenes roles that dont require you to be out and about. Are you interested in family history, as an example? Because the free versions of the census etc. which are available on the web are all put there by volunteers.

Another option is a befriending service. We have one near us desperate for people to go out and have a chat with older folk in their own homes to stop them being so socially isolated. Of course this is something you can do without a big organisation behind you....I have adopted a couple of new grannies

Visit your local CVS, tell them your experience and also your 'limitations'. Those include your nervousness and your preference to be in rather than out. We cant all take everything on - I said no to something recently because it would have been a weekly commitment and I already have one of those with the children's choir -2 would be pushing my luck! I am sure they will find something to fit.

and the great thing about not being paid and under contract is that if it really isnt right for you, there is really no shame in walking away, in fact it is absolutely the right thing to do.

best wishes,