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Ehlers-Danlos Support UK
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Newby at this and trying to deal with my job

Hi, I've just recently been diagnosed on the 2 January this year so I'm still getting my head round it all. It all really kicked off a few years ago when I hurt my knee jumping off a bus in New York. I recovered well from that just thought I'd hurt my knee thought nothing of it. It went again last year and again I recovered but slowly fatigue seemed to effect me. Then in Sept my knee went twice in a week, this time it was different. I had previously been diagnosed with chronic fatigue syndrome but I've always managed to control it. Now I'm struggling the pain and fatigue comes and goes ranges in different levels. Is very unpredictable. Having gone private to get this diagnosis as I couldn't wait 6 months on the nhs. I'm now waiting for treatment the rheumatologist has recommended via the nhs. So I'm trying to manage myself with ordinary painkillers cos I won't resort to stronger stuff without a fight. He told me light exercise so I'm walking my dog a little going on my exercise bike and I'm loosing weight as I'm carrying a bit of timber.

My main issue is the dizziness when walking, I've been referred to a balance and dizzy clinic which I will hopefully go next month.

I'm trying to go back to work. But gotta say I'm struggling. I work with under 5 year olds in a preschool playgroup only part-time but never the less it is very physically demanding. Work have been great reducing my hours days on my return but Friday I got into work and I could barely walk. I couldn't look after myself let alone the kids. Work have suggested every other day just half day so I have a rest inbetween. I so want to try it and I'm determined to but I can't help but feel that I will no longer be able to do my job. I just don't know what to do.

Has anyone else come to this issue with working life? How did you deal/handle it?

Any advise for a newby with this condition?

7 Replies
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Hi. Great pic by the way. There are a fair few points in your post but one I picked up on was that you worked with a similar age group of kids to me. I reduced to 2 days a week, but even that was just too much. I ended up on my back on the floor every day by 4pm, barely able to move. I could not carry on. It is really important you use the sickness arrangements when you cannot carry on - I didn't and I am paying a lot financially for it. Even if it means inconveniencing or letting people down, I recommend taking sick leave when you need to.

I was stuck - too ill to work but too fit to claim pip.

Best of luck and I hope others respond too to your post.

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Thanks for the reply. That's just it, I don't think I will be able to hold the job down I'm trying so hard. But if I don't feel safe for myself getting around feeling wobbly on my legs then I can't really look after those kids can I. It was my first week back this week and I ended up coming home Friday as I just couldn't do it. Work have offered me mornings every other day so I'm hopefully gonna try that. But I've got to Sunday and I'm still resting to try n get myself in order for Monday. It's so frustrating as like you say I probably won't get pip, yet I can't do the job I've always done. A desk job would have to be of a certain kind as I'm not good with paperwork. So I will do all I can, fight my body and do it all with a sense of humour. As you can tell from the photo I'm one of those people. Lol

Hope you keep strong and smiling

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Take their offers but start thinking about what part time job you could do: I know it is really hard and may mean a reduction in pay (which you won't get any help or compensation with) but like I say, if you cannot do the work, take the sickness arrangments even though you probably don't class yourself as 'sick'.

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Yes, your right. My gonna try really hard but if I can't then I can't I will just stay off sick until they have to do something about it. But I'm gonna at least try no use in giving in to this bloody thing. Then at least I can say to my head n heart that I did everything. I also have the added stress of being a carer to my adult son who is 21 and has autism and epilepsy in a mild way but never the less hard work. I know look at him and see so many signs n wonder if he has it too. So I think we as a family are heading down a road of discovery. Heyho! That's life

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Sorry for your difficulties. We don't have PIP here... With the exception of the joints that fall off 😂 Hope you do ok and find your way. Address diet, I tried low histamine and included bone broth.... Restored so much movement and lessened pain, can't proclaim it enough!!!

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Yes, I am exploring my diet anyway as I do need to loose some weight. Which could possibly help my symptoms, as I'm carrying too much. So while I'm doing this I'm looking at the right type of food to help with my pain.

Thank you for your advice.

Like I said I'm a newby so any advise is greatly appreciated on anything. I'm trying so hard to keep going but it's so hard isn't it.

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It is SO hard to keep going! But we're called to do this, until it is our time. Don't allow condemnation about eating, that will not bring happiness. Try sensible options and just deal with things methodically and allow yourself time to adjust. Low histamine is a must for me.... Incidentally it causes me to maintain and not put on weight. When I veer off course I tend to collect extra pounds, but on course it's a buffet of delicious vegetables, a little fruit and Little meat with preference on fish, but allow appetite to guide. Be positive...60% of resolving a matter is understanding it. You're winning! xx

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