To feel gutted that at 33 I may never work again?

[NettoSuperstar]

Long story short, I have severe asthma, and because of it, am prone to chest infections. I also have lung damage from precious infections and was hospitalised twice last year.

I've had a CI for the last month, 3 lots of AB's and now it's cleared, am still suffering from post infection wheeze, and bruised ribs. I was at OOH on Saturday with this.

I went to see GP today, who has signed me off for 4 weeks, and has said that he doubts I'll be able to work again, the prognosis for the future doesn't look good.

I will be seeing my specialist next month, but as this is the third long time sick leave in under a year, and I know myself I'm not well, I can't see me working again either.

I'm gutted.
I love my job, really love it, well, not the job but the people I work with.

I'm only 33, I feel far too young to never work again, and I don't want to have to be a life long non worker.
I don't know what I'll do with my time, or how I'll motivate myself, or how I'll live with nothing but me and the four walls during the day.

I'm really devastated.

I think at 33 you shouldn't see this current setback (and I am not trivialising your condition) as the end of your working career. You have plenty of time to retrain, maybe even start your own business. Set a long term goal and work towards it, even if it takes 10 years. Right now you can't see the wood for the trees, but try and look at this as your working-life going in a different direction rather than coming to a dead end.

I've had constant, endless long-term health problems and was told at 23 that I'd never work again. That's to try and empathise, not to try and beat you by 10 years.

But "never again" is such a harsh, definitive statement that leave no room for any sort of optimism or hope. You don't know that your job will not develop a suitable new niche for you. You don't know that you won't find another job you love and can manage. You don't know that an effective new asthma treatment won't be developed.

My suggestion would be that you find an employment advisor or job coach or sympathetic kind friend to think through your work options with. Please, don't write yourself off now...

Also, I am working and have for most of the time since I was 23. Not every job has worked out, but I've had some brilliant experiences along the way...

Poor you. It's rubbish when you want to work but can't. I like the suggestion of activities co-ordinator for the residents. Might that work if it's less physically demanding than cleaning, and perhaps a little more flexible so that if necessary a session can be postponed or re-arranged?

I'm in the same situation, just with a different condition, so feel free to pm me if you ever want to chat.

It is horrible.

But my life is still pretty cool so don't lose heart. I am about to start volunteering. Just one hour, one morning a week but I'll still really enjoy it. I write. I do loads of crafts. I have had to put my thinking hat on but there is still lots to fill your life with. The OU is pretty great if you want to study (which can then open the door to other more sedentary careers in the future).

I guess I just want to say, feel gutted, get it out your system (because it isn't fair and you have a right to be angry) but don't worry too much. Life can still be good.

Have you joined a support group. I'm a member of one online and when I'm feeling fed up it's brilliant to know that others are struggling with the exact same situation.

Don't feel gutted. I haven't worked FT since I was 19 due to a health condition. I did a degree and tried to work, but I found that employers were unwilling to make adjustments without constant resistance, and worse, colleagues would get bitchy and spiteful.

Now I've learnt to embrace the freedom. I get DLA and IB, and got housed by my council so financially things are pretty comfortable. I get regular relapses but when I'm well, I can use that time to do things which I find fulfilling, like photography or social groups - if I was working I probably wouldn't have time for any leisure activities.

I also do some p/t study (which I can afford to do as it's on concessionary rates), and it keeps me in contact socially and keeps my brain working, so life needn't be isolated and boring without work. Sometimes I do voluntary work as well, although often I've found that it's just as inflexible as normal work.

Society forces us to think that nobody has any value unless they're contributing economically. I think that's sad. You don't need to have a job to live a fulfilling, rewarding life.

Thanks, you've all been really kind and helpful.
I am in the angry phase atm, and also wish I had some answers.
I need to be assessed first by OT (GP is trying to arrange this asap), and also see my Specialist which isn't till next month.

I have applied for ESA so should have some money coming in, while they see what I'm entitled to long term if I can't work, and my GP is fantastic and is really helping with this.

I just feel too young to not work, but then as some of you have said I can still find things to do to keep me occupied when my health is OK.
The thought of string at the walls all day is enough to drive me mad, and I'm on fluoxetine as it is!

I am so sorry to hear this and can empathise COMPLETELY.

I have just turned 37 and have had severe asthma for years ... it is so debilitating. I feel so much older than my years. It has affected me in so many ways.

The respiratory specialist told me in April last year I would be heading for a lung transplant by age 50 unless things got better. Inhalers don't work for me, I have been on prednisolone steroids nigh continually for years. I have had an op and things have got better (woohoo)... pls do email me if you'd like more info (peasandcarrots1 at gmail.com)

You say you are a cleaner and do a physical job?

(1) Cleaning materials are HUGE asthma triggers. VERY bad for you to be working with them. I literally have to leave the house for a few hours when the cleaner deep cleans, my chest seizes immediately.

(2) Your job being physical... can you not do something within the company that means your job is less physical, plus you aren't using those confounded cleaning materials?

Your health is paramount, and this does need to be looked at asap. I changed careers 4 years ago too, which really helped. Now I work within the home, so no ice cold commutes late at night as previous job required... it is physical to a point (am a childminder now), but if I need to have an easier day (eg: not pushing a heavy double buggy up my steep hill), then I stay home - thankfully I have a huge garden for the kids.

I feel so much in control now, am MUCH happier that it is better. Hopefully will improve even more!

Yes, I think I'll have to give up the cleaning, which I hate as I love my job so much, not the cleaning part, but being with the residents who I adore.

The company don't really have anything else to offer, they only have one home in my town, and there are no other jobs apart from Carer going, and that would be harder than what I do now, with hours that don't suit me.

There are things I could do in theory. Anything sitting down would be easier, but the problem is that when I'm ill as I am now, I couldn't go in to work in any job, and no employer wants someone who is off so frequently, and of course I wouldn't get paid either and I can't run a home with no money.

Can you not start your own little business? Do you have a hobby you could make into a business? Your hours, your terms. If you need a day in bed, you take the day in bed. You can make up for it on a day you feel stronger.

I don't think so, I mean I can't think of anything I'm good at that could wait a day, or a month if I'm ill, and that's the problem, it can be a month when I'm ill.

i doubt you will be unable to do all jobs, it just depends on what you are able and willing to do.

you are in no rush now. wait til you have had a proper diagnosis, found out what medication you will be on etc, what you long term prognosis is and then adjust your work expectations to suit what you can do.

I'm willing to do anything.
I clean in a Care Home!

So sorry to hear that yr GP gave you this devastating forecast - however you haven't seen yr specialist yet who may have a very different view from seeing so many other people in yr situation.

Would it be helpful to tell yourself that 'I'm not fit to work now but in future that may well be different when my health is improved' I had 5 years unable to work because of ill-health in my 20's and wish I hadn't put myself under such pressure to get back to work before I was well enough.

I agree with everyone who has expressed concern about you being in contact with so many noxious chemicals in yr current job. You might find that yr asthma improves if yr nor assaulting yr lungs everyday? I don't have asthma tho' some cleaning products make me very wheezy. Have you discussed this with yr specialist?

Obviously, lack of money can be a big problem if not working. If you really can't work at all [?] at present would you consider doing some voluntary work in the care home doing the nicest parts of yr job with the residents? It might keep yr spirits up until the future is clearer.

Hello Netto

My heart goes out to you as I read your posts because my situation is very similar. I had to give up work at 34 due to a rare chronic lung disease, unfortunately it is progressive and I will not be able to work again (I am a trained teacher.) It's not for want of trying, I have tried to go back and tried other jobs, but the bottom line is no one will employ me because I am off sick too often and in my 'normal' state have very little resource for just doing normal things.

It took me a long time to come to terms with this, and I experienced all your feelings of anger, why me, etc, but eventually I decided to turn the feelings to positive. Joining an internet community for those with my disease really helped, because of the many suggestions and ideas for coping and even improving. Unfortunately I haven't improved but have learned to live with it. I have had it since I was a baby but it has worsened considerably in the last few years.

But turning it to positive meant I changed the way I looked at things. I decided I didn't need to be defined by what I did, but who I was, what kind of person I am, my friends and family, and for me my faith too. And I decided that even if I couldn't work I would jolly well do what I could when I could voluntarily, which has become very fulfilling for me. At the moment I am vice chair of governors and PTA secretary so spend a lot of time at school, the school realises that day to day things change, for instance I was supposed to be interviewing prospective teachers this week but am unable to, but they are great about it. I also do church admin and website work, creative stuff and I am starting to write more now. I feel freed to do what I love doing without the expectations that working is the be all and end all. I get DLA which means I am able to cope; if you do have to give up do look into benefits like this.

However, while my condition is degenerative yours may stay the same or even improve, the doctor can't say it will be a definite that you can never work, so you don't need to lose hope. I just wanted to give some positive experiences that come out of not being able to for similar medical conditions to you.

I hope my waffle has helped a little, please do PM if you want to talk more because I totally understand what you are going through right now.

Netto the fact you care so much about the residents tells me you are a people person, and clearly wasted as a cleaner. You have every right to scream right now. But hold on to the fact that you could work, but in the right field. Consider training. Do you know Open University is free if you earn leass than certain ammount. Could you do a course/degree. Wishing you all the best. You are so young to feel you will never work :)

Netto, I have faced similar thoughts. I am currently experiencing chronic migraines, and have a history of CFS, all 3 episodes triggered by minor viral infections. I know that right now, even if I was seeking work, I couldn't hold a job down.

Unfortunately/fortunately (depending on your view) that is taken out of my hands anyway, because I have 3 children under 6, and my eldest (5.3) has SN. She gets DLA & goes to Special School. I am actually a Qualified, Registered Nurse. But the prospect of being able to do any sort of nursing for the foreseeable future is slim. I see my Registration slipping away. If I haven't done 450 hours by September 2012, I will lose it. I haven't practiced since May 2007.

To be honest, right now, I am perpetually either on a 'migraine day' or a 'post-migraine fog day'. There are very few days which are 'normal'. I feel like I am in the grip of CFS, too, although ironically, because I am not working, I suppose there is no benchmark, such as 'can't go to work because she's so exhausted'. My work is at home, and it continues no matter how much I am exhausted. Children don't have an off button, do they?

I have taken stock of my situation. I cannot work. No-one would take DD1 as a mindee, due to the sheer attention she would take. She would need 1:1. Also, the cost of childcare for 3 under 6 would be out of the question. Even if I did want to work, my sick record would be shocking.

However, like madhairyday, I have looked around me, and there are lots of opportunities for fulfilling 'work' which don't involve regular hours or contracts. I am now the Chairperson of DD2's pre-school, and that is very involved. But I can do the stuff required in fits and starts. I am also the Chair of a Partnership Board for the new Children's Centre in our village. I got that role specifically because I have DD1, actually. Diversity and all that. I have also recently become a School Governor for DD1's school. So enough to keep my mind occupied and make me feel useful!

Do look around you, and don't think that no work=no use. There is lots you can do.