Let's talk about brain fog

[Treetop33]

Hello everyone!

I've been getting increasingly worried about brain fog. I am constantly forgetting words and I don't seem to be able to remember multiple things at the same time (like long lists of things to do, either at home or work). I can think to myself "I need to go to town to get x item" and then 30 seconds later it'll fall out of my brain.

My work doesn't help because I have a pretty complex job anyway and requests are coming at me all the time (brain fog meets hyperactive people). My 'to do' list doesn't seem to keep up. It makes me feel pretty overwhelmed.

I was hosting an online meeting at work the other day and I felt like my brain was covered in a cloud, and it took me a while to sort out the tech functions (like setting up the system or getting break out rooms right etc...I even managed to not send out the email right so that people joined in the wrong place). I wish my workplace would stop asking me to do admin things as that isn't my job, but I'm fairly sure it would be a breeze for someone else.

I'd like to think it is because I have too much to do (which I do) but it's the same when I've had periods of not being in work.

I'm 58, have lupus/APS and have had three bouts of Covid which has affected me in different ways. The Covid has definitely made the brain fog worse.

I'm frustrated because I am actually really well qualified, experienced and bright, and this is making me feel like a dunderhead.

Any advice or things I can do?

[DorsetLady]

Some advice from this charity -

lupus.org/resources/lupus-a...

And this from another forum - mainly about medication effects - but has excellent pointers -

healthunlocked.com/pmrgcauk....

[Treetop33 in reply to DorsetLady]

Really important information, thank you. I have applied for Access to Work but it's taking an age.

[DorsetLady in reply to Treetop33]

Yes I’m sure it’s is… and I don’t have LUPUS so not sure what it’s classification is, but those people still of working age on the PMR /GCAs forum have spoken to employers about adjusting working practices… they come under the Equality Act 2010… Sure LUPUS must as well. Might be worth looking into that, if you haven’t already… but sounds as if your are already doing so…

Info on Govt website - and CAB is very useful as well - always worth a read -

citizensadvice.org.uk/work/...

Good luck…

[Jerg]

yes quite a lot

[Lizzo32]

Brain fog affects me sporadically and can be severe at times!☝️

I do daily brain teasers, crosswords etc because I like testing my cognitive skills and brain out every single day. I live totally alone more or less like a hermit!🤔

I’ve been keeping an A5, page a day diary for the last 25years! Most helpful.

Have been working as a secondary school science/maths supply teacher working in numerous schools.☝️Totally retired now!

Only got lupus in 2016 (lupus nephritis, SCLE, chronic fatigue, primary hypothyroidism, type 1 diabetes (long standing, daily hypos etc ) etc etc 😰) and I write things to do down, appts etc in my diary daily. Have to.☝️Otherwise?

My positive self talk, repeatedly is this!

Usually check and double check things. Perhaps it’s called obsessive rumination?

“…IF YOU DON’t do this, Lizzo, who is going to do this for you????” None!🤔☝️is my motto!☝️🤣

My self reliance is key…sadly!

[WinterSwimmer]

see your HR department if you have one?

I used to be a university lecturer, but when my lupus was very active, found it very difficult to manage my job for exactly the reasons that you are describing (forgetting words, not being able to organise myself, unable to keep up with my own to do list - not to mention the fatigue). I struggled on, and tried not to make a fuss but in the end they got rid of me and in many ways I don’t blame them. I wish now that I had engaged with HR, and had some reasonable adjustments put in place. Who knows, if I had done that, maybe I would not have had to take early retirement. The loss of my career is one of the great regrets of my life.

[Treetop33 in reply to WinterSwimmer]

Thanks. I may do. The job is only temporary though - if it should become permanent I definitely will declare. It is hard to know what reasonable adjustments to ask for tho'.

[WinterSwimmer in reply to Treetop33]

That was a problem I had at the time - but in hindsight I can think of things that would have helped a lot (not being scheduled for 9.00 lectures - and not for two back-to-back with a long walk between). A downstairs office. A sofa so I could rest at lunchtime. Non-UV lighting. Someone to do my photocopying for me (which was physically painful). And yes - exemption from some of my admin responsibilities. They seem like petty things - except maybe somewhere to rest - but they would have made a huge difference.

[Treetop33 in reply to WinterSwimmer]

Yeah that would be tough (I was a lecturer and got forced out before I even got diagnosed because of health problems).

I have applied for Access to Work but we all know the story there. Currently I work from home mostly, except for meetings, so it isn't too bad. But I struggle with the 9-5 & all the competing demands (and I can't think of a way to ask people to stop being themselves). It's just under-resourced.

Plus it doesn't help that my kid goes to school and keeps on bringing home viruses!

I'll bear all this in mind though and have a think about it.

[WinterSwimmer in reply to Treetop33]

The solution for me has turned out to be self employment. Maybe that could work for you too?

[Treetop33 in reply to WinterSwimmer]

Been there, done that 😀

[WinterSwimmer in reply to Treetop33]

OK sorry. I really hope you find something that does work for you. Good luck. 🤞

[Tonkie]

hey lovely, firstly I want to say how well you’re doing and try not to beat yourself up - you’re killing it!

I too have the brain fog and for a long time I also blamed my circumstances (3 kids, 2 with disabilities). There’s just too much to remember with the school admin, health admin. The fact that you’re in a responsible role is amazing so don’t sell yourself short. You could always talk to your boss about your struggles and I’m sure they’d be understanding.

Mine has been that bad recently I forgot my son’s assembly (didn’t even know about it I don’t think). Then forgot one of his friends parties I had RSVPD to. Constantly turning up to appts on the wrong day or not at all.

Just wanted to let you know you’re not alone.

[Treetop33 in reply to Tonkie]

Thank you. With us women it always feels like we are never enough! Thanks for reminding me...ps I am constantly getting mixed up with appointments, not helped by the fact that I have to manage them for my daughter and me.

[Tonkie in reply to Treetop33]

Yes it’s hard work that alone. I have to manage 4 other people at the moment when I can barely remember to brush my teeth (currently off my meds). I’ve always been so obsessive about teeth brushing and it just drops out my head now.

We do give ourselves a hard time as women. And wish I could listen to my own advice cause I’m constantly beating myself up about not being ‘good enough’.

[dg70]

It falls out of your brain because your brain is overloaded. Happens to me, I can no longer multi task, my brain just refuses and I was a real together organiser sort of person pre-menopause/Lupus/Sjogrens. I have learned to do one thing at a time, use my phone calendar even for the easiest of tasks as it reminds me a few mins or day before. I can do the cleaning and start cooking and will forget I was cooking. I can do my work which I have done for years and not remember to eat. I try and get up and walk outside for a bit as fresh air seems to help. I feel your frustration but write every task down that you are not going to do right away, post it notes if you have to. I also get angry now when things change, I could chuck my computer at the wall each time microsoft updates and windows or office changes before I would look up the changes and learn and carry on. I refuse to change from office 2007 because I hate the changes since and can't be bothered to come to grips with them. I understand your annoyance at tasks that you really don't want to do but could do years ago without thinking. Forget learning new people's names and the face that goes with it, takes me months to remember.

Remember just talking to someone and doing your work or housework is two things and a lot of the time our brain wants one thing only at a time to focus on. It will chuck out what it doesn't want. It's a nightmare getting used to it. Try not to get over stressed with it as it might cause a flare. Just try and ease off the gas in your job if you can and maybe cut a few hours if possible. Give your brain the rest it needs and also your body the rest it needs. I cope better with rest periods during the day. You will find your balance of work/rest that works for you but this thing will not go away, so work with it and not against it.

[Treetop33 in reply to dg70]

Ha yes I recognise that. I am a committed Mac user and I've been forced to use Microsoft Office 365 which I absolutely loathe.

[Riselikeaphoenix_123]

Hiya, I can definitely relate to you as I get brain fog, delayed understanding and my daughter says to me that she can almost see my brain buffering! 😅 I can't remember simple words and say them back to front or the total opposite of what I want to say. Which is not good when I am ordering something! I will be 50 this year and I did worry about my memory. Although my children and friends say that I have been like this for years. 😅 It's definitely worse when I am on the pain meds! My advice is to be open about it. I teach pilates and it's all about describing exactly what to do! And sometimes I tell them to put their hands under their knees instead of shoulders and knees under shoulders instead of hips 😁! So when I have more fatigue or pain , I just say that my brain might be extra Lupie today! 😂 I find that people are a lot more understanding than you would think. Especially if you just say how it is. When the menopause sweats were bad, I would just say that there is a rainforest tropical shower going on! It takes the pressure off you . I hope that helps. 🙏💜💜💜Cx

[Treetop33 in reply to Riselikeaphoenix_123]

Thanks - it is good to know I'm no alone!