Vasculitis UK
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Working from home?

I am coming to the conclusion that rather than be in a continued cycle of returning to work then taking time off and upsetting employers along the way, the best solution for me is to work from home. I would be really interested to hear from anyone who has also come to this conclusion and has found any homeworking agencies/jobs that are genuine. Within reason I don't mind too much what I do as long as it brings in some pennies!

Thanks Jenny

15 Replies

Hello Jenny14

I'm been working from home for 9 years; I work for central government. It has been helpful but my managers have always thought that I was 'milking' it. This is because they neither understand Churg-Strauss nor want to know. Also, it has been difficult fir me working from home because people on the other end of a phone have expectations that I can perform as well as the next person. This has been quite stressful at times. Now I have been diagnosed with Churg-Strauss Cardiomyopathy and have an ICD implantable device I am on long term sick leave because I am too exhausted to do even an hour's work at home. In fact, I'm contemplating trying to get early retirement but you have to be virtually dead before this happens.

So in summary, if you feel fit enough to do some work then go ahead but just remember that in this modern cut throat worked an employer will still want results.

All the best.


Dear Rowmarsh,

Not being, at all, 'funny' with you but....You say that you need to be 'virtually dead', to get early retirement but-how can I put this- I think that you might qualify. I mean how much more 'dead' do 'they' want for Heaven's sake! I know that you, aren't quite, 'growing daisies' but, then still!

Anyway just a thought, for you- I don't have many, so make the most of it!

Very best wishes AndrewT



At least you have brighten my day with your comments and no offence taken. In the civil service you have to jump through hoops to get medical retirement. The medical officer is employed by Capita who in turn adhere rigidly to the government rules. It would be cheaper to pay me off but image wise it is not good publicity for the government especially when the Daily Mail headlines state 'Lazy Civil Servants Retire Early at Taxpayer Expense'.

My colleague had terminal prostate cancer and managed to get medical retirement a week before he died! And that was only because our senior manager at that time went to town on the powers that be. Hence why I stated 'virtually dead'.

I could just manage working at home with Churg-Strauss but now I have the cardiomyopathy it is a different ball game and I will need to just wait until my department forces the medical retirement issue.


Thanks for the reply, unfortunately I had to leave my last position as I was still in my probationary period when I became ill again and rather than be pushed I left and now face going to a new employer and the dilemma of knowing how much to tell them and not having the support of an existing employer being understanding.

I have now developed an autonomic neuropathy/pots syndrome and dizziness is a daily problem all the time I'm on my feet so working from home I think is the only option. My £72 ESA is just not enough to survive on.

I am trying to find something with less stress and part time but thanks for your comments as I appreciate employers are cut throat in any position.




Hi Wendy

Its good to hear someone knows the problems, starting a new job then leaving due to illness and then all again, its all so frustrating and dealing with peoples insensitivity too, I now we can all look well but that has no bearing on how we feel and the risks we run by carrying on pushing ourselves.

I'm really looking for either an admin job or customer service work from home. I have excepted my career days are over and need to re evaluate.

Thanks for your story, very interesting.



Hi, Sorry to butt in, you might find this link useful. I am registered with a few online job search engines and they will email alerts when a matching post becomes available. Like you I have struggled with work, but I am very fortunate to have a supporting partner who has taken on the financial burden of losing my income while it fits in with our home life. I hope you find something that fits in. Good luck and best wishes.


Hi Wendy thanks for the offer, I will send my contact details by PM. Jenny


I work as a self employed mystery shopper. I can choose as much or as little work as I want and can organise my working day to suit me for the most part. It doesn't earn me a fortune but it's enough for me to live on. It does mean leaving the house but basically it's just shopping and then writing a report on the visits when I get home. There are deadlines to keep to etc but I've been able to see the signs when I'm having a flare up. If you want to get more information about this there is a Facebook group that I joined where there are lists of companies you can sign up to with no commitment whatsoever. It costs nothing to sign up to any of the companies. If you are on Facebook give it a closer look. Here is the link


Thanks Schewy

I couldn't do that at the moment because I have a problem with dizziness and lightheadedness so some days couldn't venture out but certainly something for the future and something I hadn't thought of.



I was lucky in that I was already a self employed taxi driver. Now all I have to do is work when well enough. The snag is I can not take a regular run or a booking too far in to the future.

Working from home seems a good idea, but the agencies may still expect a certain output per day/week. Good luck and good health.


Thanks Jim


hi Jenny I too have Churg Strauss and have a very good employer - Airedale Hospital - who let me work at home one day a week. I am fit enough currently and work 28 hrs a week over 4 days. They are pretty flexible. I have reduced my hours and after my latest flare over Xmas I came back to work very gradually on phased return. I work in public relations and need a mobile phone and computer. I'm just telling you this so that you don't give up hope as there are some reasonable employers out there. It may be worth you trying the nhs - there's lots of different types of jobs?


Over the last three or four years I've had regular contact with various sub editors and proof readers in the publishing industry - they were all working from home and one had done so for nearly thirty years. I don't know if this is the sort of home working that would appeal to you? A lot of the work was obviously done at computers and that might be a strain? And I don't know what sort of deadlines they were working to either, but it could be useful to investigate. And I met a lady in hospital who was working at home for BT.

So there do seem to be some interesting jobs out there - but I've no idea how you find them! Sorry I can't be more helpful.


Thanks for the reply, proof reading does appeal but the drawbacks are the qualifications needed will cost a fair bit and I understand work is often sourced by word of mouth so it may take a while to get established. My plan is to have a reliable income from a job working from home and then hopefully study as well for the qualifications. Sounds like a good plan in theory anyway...


It does sound a good idea, and gives you something to think about and aim for. My neighbour was a proof reader, but she's moved, so afraid I can't ask her how she got established. Good luck, i hope you work something out soon. I'm about to be stuck to the computer for several hours a day...but that is exam marking which is too seasonal and short term to rely on.


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