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Thanks Again

Posted , 13 users are following.

julian.
julian.

its a little over three years since I first posted a thanks for all the help in this forum. For some reason I stayed around,

This is another thanks. It helps lots writing about my progress, and hopefully helps others.

I'm currently taking 3mg/day pred, about ready to try 2.5. Stable. I don't have the energy I once had but I'm writing from a campsite on a beach on Fraser Island (Queensland), happy watching a daily procession of whales passing by, some as close as a couple of hundred meters away, on their migration northwards. 

But now its time to move on.

Bottom line is that, for me, the effort required to navigate around the forum, the incessant scrolling, and the glary lack of contrast, is too great.

While the recent changes to forum software were cosmetic the result for me has been to make the forum even more difficult to read and follow conversations than it once was.

Worse of course is the half hearted effort at responding to feedback.

Just as the programmers can wait a couple of weeks to see if the fuss dies down, so I can wait a couple of weeks to see if they respond to reasonable feedback.

They haven't. So this is my last post.

I wish all my fellow sufferers well, and thanks again for all the help.

 

1 like, 21 replies

21 Replies

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  • EileenH
    EileenH julian.

    Posted

    Oh Julian - I shall miss you! I've always enjoyed your posts and they have always shed an interesting light on things. 

    This is by far the most active forum as far as I can see. And as far as I can see it may fade again - because it's driving me up the wall too. I don't know about anyone else. The last time they messed about with things it took quite a while to wake up.

    There are other things I find - like stuff that is now being let through that in the past would have been sat on very quickly - but a post of mine with nothing I can identify was taken for moderation. It's unlikely anyone will ever tell me why! 

    Live well - and maybe you could face the HealthUnlocked or, even better, the PMRGCA northeast forum? Though in the latter we do mess about and enjoy ourselves...

  • BettyE
    BettyE julian.

    Posted

    Well, of course, you may never see this or Eileen's response if you have completely retired hurt so to speak. Still, here goes:

    Like many others I'm totally p****d off with everything " new" and " improved" and sometimes think that the whole thing is geared to whizz kids. Fine when it's whizz kids' stuff but on here we have people who have more than enough to do to just live a reasonable life. We see no benefit in learning yet another system. I'd still be on XP given the choice but, no, I shall have to "upgrade" to 10 when this ( W7 ) machine bites the dust.

    Would certainly recommend the PMR/GCA NE site that Eileen recommends. It will not suit purists who only want medical stuff. As she says, we have some fun, too but it's set up that you can take that part or leave it as you prefer. What you will always get are responses from fellow sufferers offering to share what they have learned. It's also very easy to navigate so I hope you will join us there.

    Glad you have done so well. Don't give up on the energy. I got to zero Pred nearly four years ago and was very pleased with myself but found that for a couple of years the energy level kept on improving. I suppose all those un-used muscles had to re- learn.

    Enjoy the whales.

    • EileenH
      EileenH BettyE

      Posted

      PS - and our administrators do react quickly!!!!! The whole thing was thought about for colours etc that would be comfortable for sick patients with possible visual problems - RNIB were consulted. The rest of us can cope with a lot more. 

      And I wish I could join Julian on Fraser Island! 

  • constance.de
    constance.de julian.

    Posted

    Oh, sorry to hear that Julian - I will miss your wit and, sometimes, your very odd/nteresting reaction to some posts.

    Keep travelling, be happy, and keep well in the future.

    Best wishes Constance.

     

  • AsTimeGoesBy
    AsTimeGoesBy julian.

    Posted

    I'm new to this forum and most impressed with the help and advice. But it's interesting to see the comments about the website itself. I'm using a Mac with 10.12.6 and for some reason while I'm reading a post, the whole page will suddenly shoot up or down for no apparent reason. It would be nice if there were a Preview facility and also an Edit facility to enable people to correct typos and add details that have been overlooked.

    ATGB

    • EileenH
      EileenH AsTimeGoesBy

      Posted

      Mine is less such random jerking than jumping about while trying to scroll. But it is extremely irritating - especially the amount of time I usually spend on here!
  • Silver49
    Silver49 julian.

    Posted

    I am sorry to see your post,  You are such a support and will be missed. I am on 2.5 and it's good to hear  how others are managing. I can understand your feelings on this 'new improved' site. I'm feeling much the same but have persisted though for how long I don't know. Sometimes change is for the worse and this is an instance for me. Are they trying to get rid of the dead wood? I'm in that category. As you go in to Spring we'll be going in to Autumn in Scotland. My favourite time of the year here is Spring with  the lush green of the trees. I wish you well for the future. 

    • dan38655
      dan38655 Silver49

      Posted

      Be well, Julian.  It almost seems that there are enough of us in the 2.5-3mg range to start our own sub-group, which might allow for a big decrease in one's discretionary time spent with pmr online activity.  I have scaled it back greatly myself due entirely to my increased ambulatory abilities, which as we know can vary seasonally.

      ?Remember though that .5mg is way more than 10% of 3mg, so expect a sharp response to any such reduction, and that the varying size of pieces of cut tablets can be selected from to subtly adjust dosage to adjust for one's real-time level of symptoms. I often adjust my single evening dosage slightly according to what time that my symptoms can first be detected to have returned, and if it's quite late I select smaller pieces. My shoulders have continuous range-of-motion issues, but symptoms at or below trunk level usually reappear late each day and are mostly what lets me know that pmr activity is still relatively active.

    • Silver49
      Silver49 dan38655

      Posted

      Thank you,  Dan. I have the same problem with shoulder and neck pain/ discomfort but it eases and is usually because I am doing so much more. Unless I have a flare I won't be cutting tablets until I reach 1.5 but I'll bear it mind when I pick out the pieces. Funny, I  had a similar thought re the 2.5 / 3 group. There certainly seems to be a fair number on this forum. I, too,  am finding life busier since I began to feel better. I agree about energy though it hasn't returned to its previous level. This reply has just jumped so I'm  sending before it disappears. 

  • Michdonn
    Michdonn julian.

    Posted

    Sorry to see you go julian good luck, stay well!
  • nick67069
    nick67069 julian.

    Posted

    Sorry that you decided to leave. Will miss your posts ,eloquent, interesting and funny. 

    I hope after long vacation you will 'get over' the objections to the site, and come back.

    • constance.de
      constance.de nick67069

      Posted

      I agree!  Julian will be missed by many.  I hope he will reconsider his decision and at least post occasionally and tell us how he is getting on.

      I can't understand why so many people are against the 'new' look.  I just turned down the brightness and find the glare doesn't affect me.  I don't have much trouble with the rest of the 'improvements'.  Am I alone?

    • Rudivl
      Rudivl constance.de

      Posted

      No, I'm fairly new to the site but didn't notice many if any changes. I scroll on my phone. Periodically check for new comments on recent threads. I type my responses into a document first which spell checks so no need for edit .... I guess I didn't have time to get used to the old format! R 

    • Michdonn
      Michdonn Rudivl

      Posted

      Rudivi, I use my phone also, one of the problems I have is not being able to get the comment box. I go to type a it goes to the bottom of the page. Have you had this problem? It didn't happen this morning.

    • Rudivl
      Rudivl Michdonn

      Posted

      No, I don't seem to be having that problem at all. R 

    • Michdonn
      Michdonn Rudivl

      Posted

      Good Rudivi, I don't seem to be having it today hopefully the problem is solved.

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