My life: My life now is looking at a locked... - Vasculitis UK

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My life

PhoenixJ75 profile image
4 Replies

My life now is looking at a locked chest of drawers and having to go find the key, only to forget were the chest of drawers are. Sometimes even at home. Even typing this out, even the message has has taken me go knows how times Ive missed words out, making it sound okay, then going back to type in. My short-term memory is pretty dire now, things I memories lost over the last couple of years. Long-term memories are fine. I remember still my old job, what to do etc/people I worked with. It does annoy me a great deal. Even some words I can't spell now.

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PhoenixJ75 profile image
PhoenixJ75
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4 Replies
livornese profile image
livornese

It is frustrating, I understand. My memory is not the best, though not as much as yours. You seem such a lovely person, and at least I hope expressing your frustration here has helped. Wishing you strength and sending a hug🤗

stiff19 profile image
stiff19

so sorry to hear this. I suffer short term memory too. Can you tell me symptoms that led to this. Did you have eye / face drop, facial swellings, numb tingly nose along with other symptoms? Hope you don’t mind me asking?

PhoenixJ75 profile image
PhoenixJ75 in reply tostiff19

None of them, it just short-term memory, hlwhichas left with medical retirement from my job with NHS after 20 years. In the end left me quite depressed but I've come through that, at first I wish I would i had died but now I'm through this now.

citygirl1234 profile image
citygirl1234

I can relate. I’m in my 20s and have also noticed a decline in my short term memory post diagnosis. E.g. I’ve made it all or part way to work without my laptop on multiple occasions (leaving it by the front door but not picking it up) and made train journeys without my suitcase (only realising when I got to the final destination). It’s frustrating but I try not to beat myself up about it and try to focus on what I can control. I set repeated reminders on my phone and have a checklist mantra that I repeat before and after I leave the house now, which seems to have solved or at least reduced the problem. I also make sure I write things down if they’re important and try and do “brain training” exercises like sudoku, mental arithmetic etc on a regular basis.

I’ve mentioned it to my consultant a few times, but they don’t seem that bothered about it and seem to file it under “brain fog” which like fatigue is hard to treat but they say “should improve” if my vasculitis does.

It used to make me angry, but I’ve come to accept it over time. Don’t be too hard on yourself, sometimes it helps just to talk to someone

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