Ok, so I am the same, but different !

Hi fellow Lupies

It is quite a while since I have posted a blog. I took a much needed break from everything, apart from quietly pottering around at home and I'm glad to say it seems to have paid off. I am still doing stranger things than I've ever done before. The other day I left the house without shutting the front door and I don't know who put that mash potato in the microwave, but I am gradually learning to expect the unexpected when it comes to my cognitive functions.

Many suggestions have been offered to me as to why I appear to be different than I was before. Menapause, Shrogens, Fibro etc. So many that I have now stopped bothering with why and have moved on to how . How do I now live and cope on a day to day basis with these bonus symptoms? A bit like, buy one, get one free, I, like others who live with Lupusm RA etc, have recieved aditional problems which I, don't need and certainly didn't ask for. Anyway, I am getting better, or at least getting better at having this extra burden about. It feels like now is as good a time as any to dip my toe in the water and see what I can or cannot do..

Best wishes everyone x

9 Replies

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  • Hope you will continue to cope better

    Love & Sunshine

    Jan xx

  • Hi flutterby

    Just to let you you are not alone, my family used to think it was hillarious the things I do, I am not so sure they think this way anymore.

    Where is the car mum? not sure let me think about it .

    Where are the onions? a few days later I found them in the freezer.

    What's that burning mum? oh! I started cooking and then forgot all about it.

    That doesn't include all the Where are my car keys etc

    I have had discoid lupus for a long time, I now have the pains, aches, bad memory and extreme fatigue that goes with it.

    Keep smiling, there is nothing else we can do.

  • Hi Jan, Carrie,

    Thanks for your support. I love your stories Carrie, especially the onions, made me laugh lots. I must admit I have gone through a few saucepans and was recently offered an alarm which can be fitted to the cooker. I find thinking out loud helps, but I think being forgetfull and talking to myself is bound to do little for my street cred. You are absolutely spot on when it comes to staying positive. I try to maintain a positive mental attitude and find even at the worse times there's always something we can do, even if it's choosing to do nothing.

    Fortunately, my illnesses and my work in mental health has taught me a great deal and in all seriousness, I am attempting to write something that I hope could be of use to others one day. Literature about lupus frequently focusses on helpful facts with sometimes very good practical advice, but I feel there could be potential for more emotional support, including strategies that tackle the specific mental health issues that sufferers can experience. I certainly would have valued this when I first became ill. It's something positive to work on anyway.

    Thanks again

    Valerie x

  • I'm so glad there are other "Luppies" that forget things and put items in the wrong places!I find it's much worse if I overload my mind with things I have to do.Then I make mistakes and get very frustrated with myself.I am finding it hard to remember simple things now and have what I call"absenses"when I can be totally in another world all of a sudden.It's like I'm locked inside my head that's the only way I can describe it.Does anyone else get these?

  • Hi to you all i am so pleased that i am not the only one who thinks i am getting senile dementia,the stupid things that i have done now make me laugh,i too have put the shoe polish in the fridge etc,and last week i put orange juice in my sisters coffee.

    At last i am not alone,i told my rhuemy last week that at times i think i am losing my marbles, he did not react to this so i think it is part of lupus

    Take care all from Lornadoon

  • well done :0), lovin' the positive attitude & wishing you all the best :0)

  • I have spoken to plently women and a some men, who tell me they too suffer with these symptoms and they do not have lupus. This might explain why our specialists appear reluctant to attribute our cognitive problems too directly to the desease, although I believe they are generally aware that many of us do experience "brain fog". The way I see it, even if it is a naturally occuring phenominum, (perhaps attributed to age/hormones etc.) having the desease can only cause greater problems for us.

    I find the best way to help the sun to shine through the "fog" is to ensure I get enough rest , minimize the stresses of life and pace activities as carefully as I can. I am no longer afforded the privialage of pushing through fatigue like I used to and this has forced certain lifestyle changes. Sometimes the brain appears to have taken a holiday and I suppose I tell myself that just like all the other missing objects in my house, it will turn up evetually.

    Keep smiling

    Valerie x

  • I too am glad to know Im not alone as well. Sometimes others think I do certain things just to be silly, but I really do struggle to remember things. Im 26 so its not related to do with my age (I shudder at the thought of how I'll be like 30 or 40 years down the line!><), and as far as I know I've only been like this (gradually getting worse) since I started to have Lupus probs at 17.

    Because I'm an Analyst having 'brain fog' at work is extremely inconvenient :( I need to make task lists everywhere, from post it notes on my desk and my computer, outlook reminders, gmail reminders, phone reminders... everything possible to help me not to forget things so i don't look incompetent at work!

    I lock my car and tell myself aloud that I've locked it, walk away from my car and 2mins later think I've left it open, sometimes convinced I've left a door wide open too so constantly double checking myself which drives people crazy... But yes we just need to stay positive and laughing at ourselves can help too :) Although if anyone else has tips to help with 'brain fog' would be interested to hear....=)

    joyous x

  • Dear Joyous

    Your blog is great, it demonstrates really well the kinds of challenges we're up against. I'm not currently working, but when I was I was fortunate in that I could build in relaxation technigues. I found meditation very helpful, acting a bit like a power nap that would clear my mind, but nothing would help if I was overtired so I arranged flexible hours with my employer and eventually moved to working from home one day per week.. Although I didn't give up work due to my health I was genuinely relieved to slow down.

    I do find omega 3 in the form of fish oils quite helpful and notice a difference if I don't take it. In my case, the GP prescribed nortryptoline to be taken at night and I was given another drug that I can use when I experience migraines. This has improved the situation, I assume, because nortryptoline aids sleep. There was a suggestion that my symptoms were linked to central nerveous system involvement.

    According to loved ones, I've always been strange and I suspect I've coped with a fair degree of denial.

    :-)

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