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Autoimmune disease

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Where can I get advice

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DecomposingComposers · 18/05/2019 11:21

I have several long term health conditions that affect me in similar ways - hypermobile ehlers danlos syndrome that causes joint pain, fatigue, bowel problems and POTS

Crohn's disease that causes bowel problems and fatigue and a recent GI bleed.

Enteropathic arthritis - caused by Crohn's and affecting multiple joints. Causes pain, limited mobility sometimes and fatigue.

Plus the medication to treat the above which causes fatigue,dizziness, makes infections more likely, anaemia.

During a recent hospital stay I was also found to have a heart condition that also needs investigation.

My question now is that I've always worked and been able to manage my health relatively well. Over the past 3 years I've steadily declined and had 3 episodes of long term sickness, 1 was for surgery.

Currently off sick again due to a GI bleed and collapse at work. I want to get back to work but I need more support now and don't know how to get it.

Last year I asked for OH input and some reasonable adjustments and it has taken 10 months of constant reminding and it still isn't resolved. Who can I go to for help? And does anyone have any suggestions for adjustments that could help me?

There is some lifting involved in my job but I can limit it. I can sit or stand as I need to but can't walk around really. I'm told to pace but this is impossible in my job as I have no control over the volume of work. I also can't go to the toilet whenever I need to - I have to wait for someone to replace me which is probably the biggest barrier for me now.

I can't afford to not work so I need to manage this as best I can but how? I'm so tired constantly and have to use all of my holiday every year to cover hospital appointments so I don't even get a break from this.

What I need is for someone to assess me and then suggest ways that I can help myself at work so that I don't struggle so much. Any advice?

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