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Sjogrens Topics => Living With Sjogren's => Topic started by: Douglas on July 12, 2021, 02:21:10 PM

Title: Losing imagination/creativity
Post by: Douglas on July 12, 2021, 02:21:10 PM
I done a search on Brain Fog in here and I can see it is very common and I definately have issues on that front. I used to be quick witted and I loved making people laugh as I found it easy to find a word for any occasion as they were all bouncing around in my brain. Now my brain is empty and  I avoid conversations with people as I have no idea what to say anymore as my mind is a void. I have probably posted about this before but I forget! It has got to the point where alcohol doesn't even help with this anymore.

It's little things like making people laugh that I miss. I'm in the UK and if anyone knows a pill or vitamin that will bring my imagination back that would be wonderful. I want to be a fun grandad to my grandchildren instead of a quiet old boring man sitting in the corner.

The doctors and Rheumatoligist don't seem interested in Brain Fog.

Title: Re: Losing imagination/creativity
Post by: Linda196 on July 13, 2021, 04:42:13 AM
I can't offer a pill or supplement, but I have found, over the years, that creativity and humour are never really lost, they sometimes become very inaccessible, though. In 2004, by the time I had to admit something was wrong, I had become very tunnel-visioned, focusing as much as I could on my work because it was pretty much all I had left to focus on. The first time I was unable to do a calculation I had always done in my head, without resorting to a computer, I knew it was beyond a bit of distraction or fatigue, I had a problem! Luckily I got a better reception from my rheumatologist, who is a believer in brain fog and it's ability to become as disabling as any physical affliction.

He referred me to a cognizant therapist/psychologist who determined that my IQ had dropped at least 10 points, my mental reflexes were very slow and although I recognized humour (laughing at funny movies for example) I had difficulty expressing it. I think everyone knows the feeling of being in a conversation, wanting a snappy comeback only to draw a blank, then hours later coming up with what would have been the perfect response. Well that was my total life for a while!

My therapist recommended simple things, like puzzle games, and my favourite, watching lots of comedy shows! She also thought it might be good for me to pick up some of my old hobbies like crochet or knitting, because they can be quite simple to follow, but look quite complex when done, giving a sense of creative accomplishment. Some days I might have only done one ring on a granny square, but I was doing something!

After several months, she started asking for a bit more, including homework! Her first suggestion was that I take a snap with my phone, every day, of something that caught my attention or even, if attention was lacking , anything I saw when I had the phone in my hand; then write a short description of it, even if it was something like " I saw the green leaves moving in the wind". Boring, right, but it made me aware of my surroundings more than I had been , and made me communicate more, since I had to show her my pics and descriptions!

Over time the puzzles got more complicated, the craft things a lot more imaginative and satisfying, and I developed a love of photography! Many years later I continue the practice, trying to do one thing creative every day , even if it's as mundane as coming up with a new recipe for supper, or moving some decor around to new places as I clean. I've been told my sense of humour is alive and well again, and I take more joy in everyday activities. My IQ has returned almost to it's previous range, but I haven't attempted any of the mathematical computations that stopped me cold back then, and don't have any need to now! I've pushed myself to try new things when they present themselves, and that has led to a few really delightful and exciting opportunities, like an 18 month art project involving learning from professional artists, creating things in many different media and genres, and meeting many new people, strangers with a common purpose who were my age, easy to converse with and open to many new activities!

I do still have some issues with speech mix ups and finding the right words, but I'm claiming a history of dyslexia, and old stroke that affected my speech patterns (how's that for creativity? LOL), and the remaining brain fog, even though it's much improved most of the time. If I get over tired, or into a flare, it can get bad again but not nearly as bad as it was.

I'm sure that increasingly better inflammation control played a part as well, but as my therapist said, the mind is as much of a muscle as any part of your body,  and needs exercise just like your arms and legs! Give it a workout when you can.

I just wanted you to know it's not hopeless, but without any clinical support you might be on your own. Most of the effort required is self generated anyway, and hopefully if you try something that seems challenging, you're going to see some results! It does have to be a consistent effort, some little creative thing every day as a goal is a great start. I would caution against taking on any big projects though, they become daunting, discouragement follows, and dropping the project opens you up to a feeling of failure that really sets one back.
Title: Re: Losing imagination/creativity
Post by: araminta on July 13, 2021, 06:27:52 AM
Hi Douglas, I'm in the UK too.  :)

I think brain fog definitely is a symptom of Sjogrens.   I used to make a lot of papercuts at one time, really enjoyed it, also was learning to draw better.   For the last few years I don't seem to have the energy for all that, even though I miss it and occasionally try to get back to it.   I don't feel depressed, but I do think the fatigue is a large part of the problem.

Linda has suggested some great ideas, and I think it's true that even creating something very simple can buck us up and push us to do more.   For my husband's birthday recently I made some paper decorations and was really pleased with the result, ridiculously pleased really, as it sounds rather childish.   Douglas, there are loads of art and craft type suggestions and tutorials online, why not try a few of them?   

I agree with Linda you don't really lose your sense of humour, and worrying about saying funny things is probably a sure way to make yourself more tense and quiet.   If you enjoy people's company they will enjoy being with you.   Perhaps you could find some board games to play with your grandchildren, or are there some parks or other venues you could take them to?   Or watch a funny dvd with them?   If you relax more with them I think you will naturally start to be more cheerful and humorous.

Of course if you are becoming very withdrawn you could have a word with your GP - a lot of them do "social prescribing" now, which I've heard can be quite effective.
Title: Re: Losing imagination/creativity
Post by: jazzlover on July 13, 2021, 08:55:35 AM
LDN might help! Do some research on it.
Title: Re: Losing imagination/creativity
Post by: Douglas on July 13, 2021, 06:21:25 PM
Thanks for the great replies. I do like to play games on my playstation and that keeps my mind active but I will try to be more creative around the home and maybe read some books and do puzzles. I was recommended LDN in here before but my Rheumatologist never precribed it for me. This was a good few years ago now and I can't remember the reasons. I will be sure to ask again.

Title: Re: Losing imagination/creativity
Post by: Duchess on July 22, 2021, 03:27:34 PM

They surely don't understand brain fog - some of them go straight to dementia!

Have a wonderful day!

Title: Re: Losing imagination/creativity
Post by: meirish on July 22, 2021, 09:41:11 PM
Brain fog is a real thing and has been in my life for so many years. One thing I will remind you to do is to have your thyroid TSH checked. I have been on medication for thyroid for years and the past few years I have not needed to have my dosage changed. I had noticed that I was having more problems with word retrieval and finding words or even saying them. I thought I was getting worse with my autoimmune plus I am getting older.

I have lost a lot of weight in the last year and in January I had my TSH done and didn't pay any attention to it as I was thinking about my kidney disease diet so much..along with my diabetes diet. Anyway I was looking through my clinic portal one day and found that my TSH in January was .19 and I was totally amazed. Further investigation showed that it had been changing for several months. I made sure my doctor knew (the lab had not marked this as abnormal so he didn't see it) and had my med decreased. And I have had it decreased one more time since then.

Interestingly, my word retrieval has improved and my mind is working better. Now I know why I was having more insomnia than usual also. Losing weight and some med changes had messed with my TSH level. I also note that when my blood sugar is getting low I can tell as I think slower. Amazing how our physical health can affect how our mind works.

I have started doing crossword puzzles again and stick too the easier ones that I can solve  eventually in stead of putting when I am discouraged. Getting out of the house and going for a ride helps me perk up and feel more alert also. When we sit around so much our bodies just sort of vegetate and this past covid year has not been good for most people as we don't keep as busy as usual. I always tell my kids that if I had a job I would feel much better. And I would, if I was healthy enough to work at a job. lol

Good luck and find some things that you can do to get out of the house. Maybe go fishing etc or even bird watching. Take care. meirish