APS and work: So I had a meeting with... - Hughes Syndrome A...

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APS and work

AnnaBeth profile image
10 Replies

So I had a meeting with my boss today who was reassured by the APS diagnosis as it helps him understand a lot of how I can be at work. He spoke about being concerned about my energy, noticing I seem to be often starting again with plans, sometimes seem disinterested and struggling to organise myself.

Apart from the shock of someone other than my family noticing and being worried about my performance I thought I would start to diarise symptoms.

I am going to occ health and part of that includes me explaining the syndrome, how it affects me and what I hope to achieve from occ health.

Does anyone have any work based solutions for memory, fatigue etc that are easy to share or resources to point me towards? I have ideas but wondered what has helped others and also do people pause/end careers with these symptoms?

I work with a lot of physically challenging behaviour and am concerned if I start blood thinners that may be a big problem!

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AnnaBeth profile image
AnnaBeth
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rach1081985 profile image
rach1081985

I just plough on through it all I'm a carer... Not much advice sorry

KellyInTexas profile image
KellyInTexasAdministrator

AnnaBeth,

As I am an American Citizen, I cannot help in an in depth capacity.

I have read back through your posts and note you have had pregnancy difficulties.

Are you planning to try again? A physically risky job might be something to consider.

Your GP would need to advise you on this matter and likely ( not sure how this works) would help guide you to the correct forms or the correct forms and would state that the job entails hazards to the pregnancy.

Then the department of labor ( equivalent) would likely reassign you a less risky job? If that’s what you would prefer? Sometimes slowing down in a job makes all the difference in how the mind processes. A calmer environment might suit you better. You might find you enjoy it and still enjoy working. I’m not sure if you are suffering migraines often, or? ( that’s another matter...)

As far as aids... I found writing every thing down to be helpful. Carry a port folio as well as a laptop. Then I was irritated at how much productive time that alone took away from productivity. But it was necessary. Doing things right away- and quickly. Not waiting. Assume you will forget if you wait. You probably will.

Stick to a tight routine. ( hints from my neuropsychologist who preformed the neurometrics testing.)

I have had to make changes to my work hours. These last few months I’ve made drastic alterations.

TwoH profile image
TwoH

Your questions are good ones that I think most of us can understand.

I have considered getting a recorder so that I can instantly make my notes and refer back to them after I have a meeting. I've also created binders to track my client info and of course, notebooks. It doesn't always work but I had to do something because I could literally forget going from one office to the other.

It sounds like you may have a real concern with possibly being physically hurt in your line of work? I would think that is something you may need to have a game plan for. Someone else here who is on blood thinners would be better at addressing this than me.

I hope you can develop some helpful tools that work for you!

Fusch profile image
Fusch

If occ health deem the condition likely to be long term ie a disability, then you are entitled to ‘reasonable adjustments’ At work. I work at home 1 day per week, for instance.

If pregnant, the employer should do a risk assessment - in fact, sounds like a risk assessment would be needed for you just for being on blood thinners in your role (especially if you are on warfarin, range 3-4) and then propose how to protect you from

Injury.

Fra22-57 profile image
Fra22-57

If it's a job you love I would try and stick with it.as for blood thinners you will just end up looking more bruised with the physical contact you get.My daughter is in that career thou doesn't have APS and tells me about some of her encounters.They are lovely people thou.everyone with a different character just like us.

As for myself I wouldn't be able to function without writing in my diary.I also have a calendar where I write everything down and constantly repetitively check it. I would also add that when with your clients/residents and you have opportunity to sit with them just do .Good excuse for you to rest. You might have to cut your hours down.I worked in a nursing home for the disabled as a cook but also assisted at mealtimes with feeding.that was the part I loved most by just being with them and chatting even thou some couldn't speak back..it broke my heart to leave but my health had to come first.

HellyD profile image
HellyD

This is so positive, I really wish other employers could follow this example x

veganworld profile image
veganworld

Hi Anna

I was able to cut down on my hours at work which helped with my energy. I was better at performing in shorter sessions as it was when I was most fatigued I was not at my best. It is a kind of disability although I hate to use that word and APS and allowances should be made. It is a lifetime problem and it is well worth making life as easy as you can for yourself. Don't stop working find some solutions. That is all I have for you. Getting hurt at work might be a problem for your employer thinking of it from their point of view as they have a duty of care towards you.

Good luck with it

Kaz

MaryF profile image
MaryFAdministrator

From my own experience, and I do mainly work from home, flares seem to affect nearly all of us and make us tired, but making sure my Thyroid is working properly plus keeping an eye on D, B12, Folate, and Ferritin does make a difference to my energy as does making sure my sleep is as good as possible, also pacing myself, and keeping up with my daily exercise routine. I hope your work place assessment is helpful to you and that your boss keeps working 'with you' regarding this. MaryF

AnnaBeth profile image
AnnaBeth

Thanks everyone this is really helpful

dawnzy profile image
dawnzy

Hi, I returned to work , but I reduced my hours and took the lesser physical part of my job. I'm a senior carer in a daycentre. I had problems in the beginning but as my collegues learnt my limitations as did I I find it hard and extremely tiring "usually sleeping when I get home" but I'm still going and it's currently working so please give it a try don't give up , I have bad days but the people I look after make my day

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