Control !

Posted , 10 users are following.

just thought of this...  With this " demon" you have no control and I'm a control freak!!  I want to control my life not see how the " beast" will affect me today , this minute , this hour, this second... Whatever...  Getting a bit crazy!!!

0 likes, 38 replies

38 Replies

Prev Next
  • Posted

    I think this is the bit of it that needs the acceptance.  I don't think I have ever been a real control freak so maybe it was easier for me. I tried all the things I could change and then, when the PMR turned into a big truck and ran me over, I did the research.

    Pred used properly made a massive difference - and then I worked on finding out all I could about the disease and how to manage it and, above all, how to manage the pred dose best. I think that has been pretty successful - so now I go out and try to preach the word. Life has changed - but I'm not sure it is significantly less rewarding. Some things are better - I have some wonderful friends now. 

    • Posted

      Eileen, I'm grateful for your research, knowledge.  I too have and still do lots of research...  I send it to physicians ( they probably want to kill me ! ) but too bad..  Researching and learning has always been my goals as a health care provider.
    • Posted

      Yes, some physicians and PT's need to be educated about PMR --- amazing often how little they know about it.
  • Posted

    Judy, my post was meant to be positive! You are in a dark place right now and I'm so sorry. I think a lot of us have been there.

    On a slightly different note, I paint and am currently reading a book called "Drawing on the Right Side of the Brain", which challenges our perception of what we see and do. A lot of us work with the logical left side of the Brain. The right side controls creativity and spontaneity and somehow, I think this also relates to how we manage to live our lives when illness strikes.

    • Posted

      Read that book, Susanne and loved it....  are you drawing?
    • Posted

      one of the side effects of pred was a feeling of lost objectivity, a pred high, and a feeling that "logic" and "rational" deserted me. Uncomfortable for an engineering mind, though the pred highs strangely pleasant (though not addictive).

      But a little bit of care in polarising mental activity too much. Engineering can be creative. And since I'm predominantly rational it suits me that the dichotomy of brain function referred to as right or left brain is a bit of an old theory. I'm much more inclined to brain plasticity - if I do a lot of something I get better at it.

      Which gives me a clue to a way through the brain fog (pred brain). Keep practicing and it seems to be clearing. What was once intuitive, that became mechanical, is becoming intuitive again.

      I suspect also that with PMR (and other chronic conditions) we become more sensitive to new symptoms. Almost too bound up lest we miss something important (like advance to GCA). Almost too emotional and analytical at the same time. Its hard to be rational when the body is changing. Hard to feel in control. Easy to be anxious.

      Fortunately I thought what may have been an unusual reaction to an insect bite was worth a doctor's visit and resulted in early capture of shingles.

      More recently I noticed a faint blue tinge on my thighs. Most odd. Very unusual. Only just visible. Not imagining it, my wife could confirm. Imagination running riot. Scary stuff. What's happening to me? Am I getting enough blood to my legs? Will they fall off? Why only there? Why has noone else mentioned this symptom? Should I post a "what is this?" to this forum.

      Not to worry. I'm not going crazy. It washed off in the shower. I'd bought new shorts and the dye came out a bit in hot, humid, sweaty weather. rolleyes Usual story, once I understood it was easy. Just a couple of days of wondering.

      There's a bit more to managing my life around PMR and the sense of control than the mechanics of doing things differently. Its very much an emotional journey that can be eased by managing the things I do differently. But that's the start.

      Yes, I know, emotional engineer is a bit of an oxymoron and can create cognitive dissonance in some! rolleyes

    • Posted

      Judy, I paint mainly, but want to hone my drawing skills. The book was recommended by a fellow artist. Fascinating book! And you, - do you draw?
    • Posted

      Morning Susanne, 6:15 here...  up and walked the dogs.... not too bad this morning....  sitting with coffee... not ready to eat yet.

      To get to your question.. yes I did and do try to draw, I also tried to teach myself to knit but that is and does drive me crazy.  I do have 3 crochet projects going but it's slow going so far. 

      Hope you have a good day today. 

      judy

    • Posted

      A similar thing happened to me. I found these yellow patches on my pillow as if something had been flowing out of my ears! I found all sorts of nasty things it could be on Google and then discovered it was some new night cream I had started using with oranges in it! What a relief. 
    • Posted

      Hi Julian,

      Your story about your shorts started my day with a smile😊.  Thank you for sharing.

      On a more serious note, I sometimes question myself on wether it is the PMR or my age or ?? that makes it seem like I am losing my mind.  I worry that I'm using the PMR as an excuse. I also get lazy sometimes and when I can't find the word I'm looking for I just write it off to PMR, get frustrated and give up. Very bad me thinks.  

      I like what you said about practice and how you are becoming more intuitive again.  Will try to work on that.

      Have a happy day!

      Hugs,

      Diana🌸

    • Posted

      ta,

      undoubtedly some of it is age for me. And very difficult to separate the causes. Its very difficult looking inside one's own mind.

      I've always enjoyed using my mind. Even before PMR I'd begun to notice small effects of aging. I'm 65, I started losing energy around 50, noticed mental changes from around 55. Later came realising I'd got to the end of the day and done everything else but what I started doing was a bit of a shock. I've never had to write lists, now I do. Forgetting where I put the spanner was unusual. Things I used to just do easily I now dread and put off. I was a bit of a change agent. Now I'm less flexible. But at least now I can watch a movie or read a book more than once ....

      It was somewhat startling to observe daughters understand and apply a new concept in a few days where I took several years as I had to ditch an old, well entrenched, paradigm. Around 48.

      I somehow know I'm not going to age well. Probably harder than PMR to accept. At least with PMR there's hope it will go away.

      The PMR / Pred is on top of aging. I think. The floaty, lost reference point, feeling irrational, fogginess, was real and definitely pred. For me the highs were exagerated and unusual. Struggling to coherently piece together bits of a complex problem is unusual. When programming, not being able to remember what I called something at the beginning of the programme, 10 minutes ago, is very unsettling. More frequent rapid mood swings. These effects arrived with the pred and have improved (not yet gone away) as I reduce the dose and consciously exercise. It was a bit scary, and why I found my way to this forum.

      In the previous post it took a good 10 minutes to remember oxymoron. The "what's the word for....?" conversations can be hilarious as well as increasingly frustrating. It started with "what's the word to describe military intelligence and similar contradictions?". ...... "you mean MI5?" .... "Nooooooo, like tautology but the other one" .............. "oh, you mean MI6?" ....... durrrrr.

      Obviously went to a different school to me! You'd think that after 35 years Ali would be able to read my mind ......why can't she remember? rolleyes

      We always had those sorts of conversations. Just that now they are more frequent, take longer, are more frustrating, and have less success. There always were the occasions it took a couple of days to remember something. Pred has made it a bit worse. I won't know how much until off the pred.

    • Posted

      oh .... and the lost concentration is hopefully pred. rolleyes Very noticeable.
    • Posted

      Pred does do that to many people. PMR does it too. Combine the two...

      It does recover - or at least it has for me. My memory is back to where it was - like an elephant! I used to have to re-read pages of a book several times to get it right. I don't tend to read chick-lit so it is heavy stuff we're talking about a lot of the time. Now it sinks in much faster and recall is definitely better.

      Either that or I've totally lost it redface

    • Posted

      Julian, your posts are fascinating and have kept me thinking for the last couple of days. I wanted to reply properly, but right now, my mind is not up to it! Sad. Trying to have a good exchange is wonderful, and you are definitely still up to that, but my mind is a bit of a muddle of thoughts I want to express, but somehow won't come across on "paper"/internet at the moment! :-)

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.