Brain Fog strikes again 🙄: So I was up at 9 am... - LUPUS UK

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Brain Fog strikes again 🙄

CecilyParsley profile image

So I was up at 9 am stressing about my telephone appointment with my new Rheumy. I had written my list of symptoms and had my medical history in bullet points. Twenty minutes later my hubby asked have you got the time and date right? I re read the letter and said yes. And we waited.... At 10.45 hubby asked if there was a number we could ring. I looked at the letter again and you guessed it is on Friday morning that the Rheumy is ringing!!

33 Replies

I've gone to the wrong hospital before. The one furthest away of course.

Yes so have I and the dentist but I looked at the damned letter twice and still got it wrong. No harm done but it does worry me that I can make such silly mistakes. I was never like this before my illness but I guess at least I got up early and have had more time to spend with hubby and my beautiful boys

Salzer profile image
Salzer in reply to CecilyParsley

I have done exactly the same thing recently for an interview! Arrived a day late. Was mortified. But now just makes me laugh. Would never have made such a mistake before either. But now you'll just be extra prepared and you had a nice day with hubby and dogs 🙂 And now I triple check every appointment 😄x

CecilyParsley profile image
CecilyParsley in reply to Salzer

Oh you poor thing, that must have been awful, especially if you really wanted the job xx

Salzer profile image
Salzer in reply to CecilyParsley

Actually turned out to be the best thing in the end. I wouldn't have been well enough to do the job even if I had managed to get through an interview with extreme brain fog! It does make me laugh now though. All dressed up with nowhere to go 😂 Wishing you all the good luck for Friday. x

CecilyParsley profile image
CecilyParsley in reply to Salzer

Oh then not so bad after all. I am sorry that you were not well enough. I really miss working. I loved my job. Thank you for the well wishes I will need them I think lol xx

I can't work now either and miss it.i feel people judge me because I'm standing upright they dont understand why I dont work.i couldn't of continued as I worked in an high infection unit and wouldnt of lasted 5 minutes.funnily enough all this started with a chest infection I picked up at work on Christmas day.

Yes people judge me too. I worked in Child Protection and because we could not have children, my work was my life. I managed teams of social workers, often worked from 8am to 9 pm. I took meetings, made decisions, wrote reports, managed budgets, supervised staff. Can you imagine how I would even contemplate that now as well as the professional progression when I cannot even read a letter and get it right? I lost most of my friendships too as most were social workers and I just could not fit in with them any more sadly. We lose so much with chronic ill health, yet there are always those who see us as enjoying staying at home, or even scroungers one benefit. This site is amazing for acceptance and understanding. I think that is essential for all of us.

I was an activity co coordinator in an end of life secure dementia unit so a strange combo of violence, aggression and end of life care.not to mention the infection issues of colds,flu,norovirus and CDiff.i lost friends too but I wonder know if they were friends....they knew my number when they wanted something but ha went been near since I went off sick.i used to job share with a lady we made a great time.i met her once outside aldi and she said....sorry I'm too busy.say no more I dont need friends like that.the genuine ones are still around today.im on benefits and I don't like it I'd rather be working but I cant x

Exactly that. When I was first really unwell some of them came to ask have you got a book I can borrow. Will you write me a reference? Can you give me some advice on a case? One was suspended and was distraught. Despite being ill, I welcomed her into my home, helped her write her statement, gave her a list of things in mitigation. She visited every single day for weeks. We even had her all Christmas Day and New Years Day. She went through a disciplinary process told me the outcome and I never saw her again for two years. She actually approached me in a supermarket which we popped in to to get something quick for dinner following a barium swallow test. She rushed up and told me she had left her job and had time on her hands now and would come and visit. I looked her straight in the eye and said I am busy and walked off. You are very right people use those who give freely which is very sad. I never learn though and I don’t want to change.Xx

I am sorry to hear that, yes this site is amazing, it makes you fit in and understand each other, since joining it, I feel much better in myself. I am glad you feel the same.

At least you know you are ready for Friday.

I know how you feel.if I don’t write neverything down and check it,I get times etc,wrong.

I transpose numbers too. Even if I double check . My hubby never lets me write telephone numbers down anymore. It is very strange

( you know what I would have ruled out if I were you.., APS just to make sure.)

Add to the list to ask about.

Reminder : ask rheumatologist if you might be tested for APS.

Just in case you forget, 😉... you might ask about APS?

Oh, by the way....

Ha ha yes I was diagnosed with APS in 2009. I just take daily aspirin. It was actually how I fell out with my very first Rheumatologist. He kept telling me my balance issues, clumsiness (resulting in twice breaking my nose, knocking out my front teeth, concussion and a cracked knee cap), brain fog, transposing numbers and tingling and burning in my hands and feet were not Lupus related. I bought books from Lupus UK and had a lightbulb moment 💡I asked him had he tested me for APS? His response was “ so you have read about it on the internet so now think you have it?” I walked out. By the time I reached home my GP rang and said please come and pick up aspirin. You tested positive for APS nine months ago.

Oh, I’ve noted many times that you resemble an APS patient- but did not realize you had tested positive. ( or I’ve forgotten!h

Hmmmm. But no clots?

Sounds like you need something... a little stronger?

They just pooh pooh it now as if I never tested positive and I did every three months for five years then I gave up chasing them because I was so unwell with the choking and what they diagnosed as Low Grade Lymphoma. Thank God I went to St Thomas’s because I thought I was dying. I did without a Rheumatologist for two years when St Thomas’s discharged me because I lacked faith in them. Then I got sick again. The Rheumy I had next never once examined me then the next two were just awful. One saying Zi had nothing wrong except Fibro and hysteria and the other slapping my fat and telling me I was very swift for an obese person and that I did not have Fibro but mild UCTD and should think positive and get on with my life. I haven’t had bloods taken for a long time so I have no idea what they are doing. When my GP put me on the oestrogen pessaries she asked do you have a clotting problem. I said I have APS . I was astounded that she replied oh do you? She has been my GP for ten years. You can see why I am anxious about speaking to yet another Rheumatologist who has read all the crap that has been written about me.

Oh I’ve done things like that before - makes me feel like a right idiot 🤦‍♀️

At least you will be well prepared xx

Ha ha I have now told my husband where I put my notes because it would be just like me to put them “ somewhere safe” never to be seen again lol xx

Been there , done that, got the t-shirt !! 😀😃

😄 look forward to a report from the RIGHT day!

Sekka

I'm an accident investigator & after a very long day arrived back late at the office to discover I had lost the key to unlock my laptop. For security it has to be locked to a bracket on the desk by a steel cable.

The whole of the investigation team searched for it, we looked everywhere! Eventually someone had the idea to unscrew the bracket from the desk so we could all go home.

The next day I pulled out my laptop, steel cable & bracket much to the amusement of the rest of the office. There were spare keys, a whole bag full which I had to try one by one. Eventually I found the right one & freed the laptop.

Concerned I would do this again & now without a spare key, I ordered a new cable lock. They sent me a combination lock!?!

Sarah x

Tykle profile image
Tykle in reply to sarahsch

You'll have to watch that! I've worked in the same building for over ten years and it has a combination lock on the door to get in. I can't tell you the number of times I've put my hand up to type in the numbers and drawn a complete blank. It's rather embarrassing having to wait until someone else comes to let you in. I'd keep a note of the combination handy if I were you!

Omg Sarah, that made me laugh but it must have been so stressful and embarrassing at the time. I have a Filofax with my bank details,passwords, PIN numbers in because whenever I try to log in anywhere I just cannot remember and my bank has locked me out so many timed for forgetting my security questions. In shops my hubby has to use my card because I transpose my PIN . We went on holiday to Scotland a few years ago. I clutched my Filofax as if my life depended on it all the way there, checked daily that it was safe in the accommodation. On the way back my hubby said let me put it in the boot. I went into the services for yet another wee and thought I will get something from M&S so that we have milk, bread and something quick to eat when we arrived home. A lovely staff member carried my bags to the car as I use two sticks for balance. My husband had been anxious that I had been gone for half an hour. It was hot so he could not leave the dogs in the car. He put the bags in the boot and sadly my Filofax was left on the roof. When I got home I was panicked. I rang every service station we stopped in ( weak bladder) and even motorway services. I had to change my bank details, PIN numbers, passwords. I missed appointments my life was in chaos. I even had to register with a company that would stop fraud on my bank account. Now the new Filofax never leaves the house lol xx

Oh Cecily,

what a nightmare 😯. That's just awful!

It was a nightmare lol xx

Aww bless you.

Thanks Lou xxx

Oh CP! Totally relate to all these replies...deleting reminders on my phone about attending appointments/getting the shopping thinking that the reminders don’t apply to me and who in my family has the cheek to set these reminders anyway? 🤷‍♀️. Queries with the credit card company about fraudulent transactions showing up on my statements.... wasn’t me who ordered all that stuff online 🤦‍♀️Pred-Head, Metho-Mind, Hydroxy Hallucinations that’s what I call them! 😂

Good Luck TOMORROW! Xxx

Oh yes I can relate too. When I was first I’ll I truly thought I had Alzheimer’s .I forget words sometimes. It is like my head knows it but will not tell my tongue if you know what I mean. Concentration is abysmal. I used to be a prolific reader but now I forget what I have read and unless I can read it in one go. I often get half way through a film and then realise I have seen it. My husband says I am going in a home lol. Of course he doesn’t mean it because he loves my cooking and baking..phew 😂😂

Yes we seem to get a raw deal here in Wales Lou in terms of Rheumatology. We deserve better that’s for sure xxx

You are not alone Cecily. When my appointment letter arrived hubby opened it so I wouldn’t touch anything that might be ‘unclean’ 😂😂 and he said, ‘why have you got an appointment with Orthopaedics?’ I said I didn’t know but I had told the Rheumy my joints were sore and sometimes stiff and swollen, so perhaps that was why. 🤔 A few days later, just as I was about to phone the hospital to ask if there’d been a mistake, I looked at the letter myself and at the top of it in bold letters was the word RHEUMATOLOGY . The Orthopaedics Dept is hosting the clinic probably because they have better social distancing facilities. 🤷‍♀️ So I pointed this out to hubby and we both laughed. Thank goodness I hadn’t phoned the hospital, I’d have felt such a fool!🤦‍♀️

It is such a relief to know I am not alone in this . Thank you so much xxx

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