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Ehlers-Danlos Support UK
2,057 members640 posts

Working how do you cope and not working thoughts please?

I'd like to know how you handle day to day life at work if you can hold down a job. Are your employers understanding if not what problems have you faced.

Not working how does it make you feel and how do you spend your time.

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Hello I really think it’s down to the individual as we are the best judge of our own bodies and limits. At present I don’t have a day to day job because I wasn’t managing. When I was working full time I was running my own company and lecturing. What I realised I was doing was managing my own time around the illness and the time spent at work was less and less until it reached breaking point. For example I’d have to leave for work an hour early in the morning to allow for stops along the way to vomit from pain etc. When I gave up work it was because I was migraining 3 or 4 days a week and was hospitalised frequently. Something had to give but I was very (probably stupidly) resistant to it. It was heartbreaking to lose everything I’d built over 15 years. I also have Behcet’s Syndrome with an auto inflammatory overlap and ployarthralgia so the combo was too much. I am now receiving ESA and declared not we’ll enough for work. On this benefit I’m allowed 16 hours of permitted work so I have a very part time job. I knew these employers from working with my company and they have been amazing. There HR help where needed and the I have taken them leaflets from the society’s to explain what’s going on. I never manage 16 hours and if I do more than 8 hours I flare up and have to sign off for weeks. I do the few hours for my sanity and to feel useful but again this is completely personal. If you have any questions feel free to ask 😌

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I’m also on zero hours and can suck out of working if I am a bad time.

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Thanks for your reply. Interesting story. I'm contracted to work 16 hours but work more but even 16 is too much. I work with kids and it's too physically demanding. So I'm off sick till I figger it out. I could well end up on esa but to be honest I'm just more concerned about myself at the moment don't care about the money. If you don't have it you learn to manage. Your very lucky to have found I company so easy going not many employers are like that.

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I am lucky with my employment. I think it helped that I knew them. I hope you can get your situation sorted. Hmcan you get any help from a main or local charity/ society. Are you in the uk?

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Yes I'm in the UK. I tried to go back to work on reduced hours but work took a lot of responsibilities away from me "For my safety" but I was just a body in the room. Wasn't even allowed to pick up a child or be in the room with a child. So as well as the physical exhaustion, I felt humiliated as I have always been very good at my job and praised for it and then I'm left doing nothing. They have got rid of staff in the past in the same way and I would have liked to think they held me in high regard but clearly not. I get why they are doing it all but I can't do my job anyway so figured what's the point in me being there I want to be of use. I know they will eventually say we've made adjustments and it's not working for us. So now I'm figgering myself out gonna try and find a job or retrain.

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I think this is to ‘protect themselves’. It’s so annoying and must be so frustrating for you as you sound so passionate about your work. Can you try to be one step ahead of them and get the support of a charity behind you and point out that your role is doable with adaptation which they consult with you on. Or that they look for a role that’s within the organisation that you can take? If not maybe they are not good to work for?

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Oh of course, it's to cover their backs. Trouble is it's a small organisation of 6 people the role requires all staff to do the same and I clearly aren't able or they wont let me. When I tried to go back I couldn't even do 3 mornings a week. I spent the wkend recovering for the following week

Not a life.

So I'm not gonna fight I will go off sick for my 28 weeks n then go quitely. It's for the best. I've agonized over this for weeks but at the end of the day it's down to one thing. My health, and I know the physical demands for the role would kill me.

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I had support through the SureTrust it may be worth contacting them? I also had some support from the citizens advice bureau but that wasn’t as useful for me.

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I couldn’t physically hack employment so now I’m self employed, but still find it a struggle, especially if I need time off, but have found that works best for me. I live off grid though, so only need to earn a small amount. I don’t think I’d manage to work a ‘normal’ job due to my health, so have found it was much easier to be my own boss.

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I think I'm heading in that direction eventually. At the moment I'm still learning to deal with all this. I hate that I feel great one minute and think yeah I can work and run a home etc then all of a sudden my body let's me know.

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It’s the hardest thing I had to get used to. I was always a ‘mind over body’ sort of person in regards to my physical limits, but life became a lot easier and less exhausting and painful as soon as I started using the spoon system and opened up communication with the people around me. There is an explanation of it here if you haven’t come across or before. Hope things start to get easier soon xx

(https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#2)

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